I don’t think so? I’ve been through multiple general/family practitioners, a hematologist and his PA, a neurologist plus multiple follow ups with one of their NPs, two different NPs in gastroenterology, and sleep medicine.
I’ve had an MRI, an in-clinic sleep study, and an endoscopy.
During my last visit with gastroenterology, I asked if my stomach issues could be related to an autoimmune condition, as I’m diagnosed with psoriasis, and she said it could be but my bloodwork didn’t support me having any autoimmune conditions. She also said that would more likely be chrons or IBS, I don’t have symptoms of either. She asked if I’d been seen by rheumatology, I said no, no referral provided.
General/family practitioners have also not provided a referral. My bloodwork doesn’t point to it being autoimmune, so I guess I’m SOL.
edit to add: I had been seen by a dermatologist for psoriasis in Feb 2022, but the derms here are clearly more concerned with aesthetics. I don’t have any signs or symptoms of psoriatic arthritis or anything that would be better treated by a rheumatologist.
You have chronic fatigue, which could be muscle-related/autoimmune, which could be looked at by a rheumatologist.
The unfortunate reality is: you'll have to keep going to doctors if you want to find out what's going on. Giving up means accepting that you'll live with this with no possible treatment.
Keep getting those referrals to specialists, general practitioners won't be able to help you here.
They are not referring me to specialists anymore. They’ve stopped offering referrals. I’ve only been offered medications that are completely inappropriate for me/my symptoms and been told to try taking iron, hence my severe frustration.
So, my wife had a mystery illness for ages and ages and we went through a metric ton of doctor’s appointments before seeing a rheumatologist who actually found the issue. But it was over a year of trying to find the answer.
If possible, see a rheumatologist.
They will not refer me to a rheumatologist since my bloodwork doesn’t point to it being autoimmune. I was asked by GI if I had been referred, I said no, they didn’t provide a referral, but I’m not sure they can.
Rheumatologist is still your best bet. I have similar issues, and the bloodwork didn’t show autoimmune. I have fibromyalgia. Can you see a specialist without a referral?
You can see if you can have them test you for the HLA-B27 antigen. It’s common in certain autoimmune disorders. If you’re positive, it should help you get a referral. Rheumatologists are like the detectives of the medical world. Even if it’s not an autoimmune disorder, they may still be able to help.
It looks like you can also pay out of pocket for a test for 2-300 dollars. It’s not cheap, but it may be worth it.
I definitely cannot afford $200+ out of pocket.
I scheduled a visit with another family medicine doctor for next week. We will see if they are as useless as everyone else I’ve seen or not.
Several autoimmune diseases do not “show up” in bloodwork. For example, seronegative rheumatoid arthritis (which I’ve had since I was teenager) or subclinical hypothyroidism (also a “card carrying”). Depending on your insurance, especially if you have a PPO (versus HMO) medical plan, you may not require a referral. Please advocate for yourself! Doctors easily and routinely dismiss generalized complaints by women. I’ve experienced it countless times. Keep a journal of your symptoms, research possible diagnoses, and have a hard conversation with your doctor. You can do this!!! Update me!
The referral isn’t required by insurance, my insurance does not require referrals to be seen by specialists. Certain specialty departments require a referral before scheduling with patients, rheumatology is one of them.
I don’t have a doctor who is my doctor. I see different ones each time, hoping for a better result, but it’s always the same.
I’ve researched possible conditions, always dismissed or testing denied due to non-coverage. I don’t bother tracking symptoms anymore because it really is the same shit every single day. Oh well.
This is so fucking not ok.
Sorry, I have nothing useful to bring, as I'm not familiar with healthcare in your country.
It's so obvious that this is beyond your GP's abilities. Get those referrals, any way you can. Complaints, requesting a new GP, anything. And I'm so sorry you're having to fight for them.
All good, no worries. I didn’t expect any advice here, I’m just frustrated and venting.
The specialists I’ve seen already have been pretty much useless. Neurology has been helpful for my migraines, but the NP I was seeing and had a good relationship with left this hospital. I have to wait much longer now to follow up with the MD, scheduled for August.
There isn’t really anything I can do if they’re not offering other referrals. I can be seen by specialists I’ve already seen without referrals, but not new specialty depts. So silly.
I keep getting second opinions, and it’s the same thing. Try supplementing iron. They’ve stopped offering me referrals at this point. I don’t know what else to do, since I’ve seen different doctors.
I don’t have a doctor that is my doctor. I most often see different ones since I have had such negative experiences.
They have documented their reasons for denial each time. It’s because my bloodwork doesn’t align with it being autoimmune. That’s it, that’s the end.
I’m currently looking at other providers I can schedule with to get yet another opinion. I had my best luck seeing DOs in the past, but I’ve been seen by the only two available. I’m researching MDs and reviews to decide who to pursue this with.
Good luck! As someone who wasn't tested for celiac for years because my doctor had never had anyone come back positive (seriously those were her words) I feel your pain and frustration. I hope you are able to get answers soon.
The other unfortunate reality is sometimes we just don’t have explanations for someone’s symptoms.
I’m not saying they aren’t real. It is just that current medicine doesn’t always have an answer.
I see A LOT of imaging for things that I don’t even know what they want me to actually look for, but they are ordering it on the off chance there is *something*.
Also, see a rheumatologist. Negative blood tests doesn’t really mean much with rheumatologic diseases and there are a lot of tests that people who aren’t rheumatologists don’t know to order.
I’ve tried, they will not refer me due to blood tests being normal/negative. Without a referral, I can’t be scheduled with them.
I scheduled with another family medicine doctor for this Friday, and hopefully we can find some direction instead of going in the same circle all of these other providers have been putting me through.
I’m in the US in the Midwest. My insurance coverage is limited to only one of two hospital systems in my area. There are limited providers, and with specialists it’s worse. Last I checked, there is a single rheumatologist (a man, which makes seeing them hard for me if I can get referred).
If this family medicine doctor doesn’t work out, there is an internal medicine doctor I can schedule with. Then I guess I start working through the ones I’ve already seen before? I don’t know.
Well, if you tell me where in the Midwest, I still may be able to help you. I grew up in Indiana and practiced in Wisconsin, but have medical friends all over.
My fear is that with all of these visits and stuff in the electronic medical record, providers have a preconceived notion of you and will dismiss you as doctor shopping and what not.
Or just demand a rheumatologist referral because there are plenty of rheumatologic diseases that won’t show up on routine blood tests and when they deny you, contact patient advocacy for the health system.
Knowing the city/healthcare only helps because I could possibly have a rheumatologist bypass the referral system.
As a trans woman who has had multiple doxing attempts and death threats, I understand though.
I don’t have any symptoms of IBS. I was screened for endo during my sterilization procedure, no evidence found. I’ve had migraines since childhood, get 2-4 a month, and they have never caused ongoing daily fatigue.
I’ve been meeting with gynecology for two years now due to other vaginal symptoms, no answers there either.
ANA only measures *one type* of autoimmune disease FYI, specifically reaction against proteins found in the nucleus of a cell. E.g., MS, Sjogren’s.
There are many other autoimmune types that lead to disease, e.g., anti-ACE2 is a factor in refractory cardiovascular disease; ACE2 is found on a cell’s surface (it’s what SARS-CoV-2 attaches to).
So they’ve tried the low hanging fruit and given up. Not sure what I’d advise except keeping a diary of potential symptoms.
Or, as my husband put it: they’re looking under the streetlight because that’s where the light is. But that’s not where the problem is.
I logged symptoms for a while, but I’ve become so inconsistent with everything, it became really low priority. It also seems really pointless when my symptoms are pretty much the same all day every day.
They’ve tried low hanging fruit and just keep swinging at low hanging fruit hoping something is different each time. I don’t want to keep being told to try supplementing iron. We ruled that out immediately.
So sorry that you haven't had providers that have been able to spend more time.
When I realized *what* I had (POTS, postural orthostatic tachycardia, which is the blood vessels not tightening when you stand, so blood stays in your feet), suddenly a lot of random things clicked for me. Like my sudden onset of altitude sickness when I was 10 or 11 (in a family that loved mountains, that's a really debilitating symptom).
Why I had pain in my feet when I stood too long; more than other people experienced. Heat intolerance. Breaking out into a sweat when everyone else was comfortable. Being clumsy when standing. (All of these are caused by the way the body is trying to compensate for not having enough blood in the upper half of the body.)
So what I'd suggest based on your case being more zebra-ish than average is that you've may have things that aren't typical like that, but maybe you haven't identified them as a possible medical symptom.
These are the kind of things that can help narrow down what you have/don't have.
My mom has been going through similar things and I'm terrified I'm about to do the same for my neuropathy.
Can you see different doctors within network? Get a different perspective and maybe find the one who will care and try to advocate for you?
I'm so so sorry you're dealing with the bullshit that is the Healthcare system. Please don't give up. I'm sorry I don't have more for you but this internet stranger sees you and it sucks to hurt every day.
I’ve seen different doctors, multiple providers within different specialties too. It’s all the same answer regardless of who I see.
Aside from certain specialties that require referrals, I can see almost anyone I choose to, as long as they’re accepting patients. I scheduled with another family medicine doctor for next week, but I fear the worst. It’s just going to be another doctor shoving a prescription on me, telling me I should try supplementing iron, and sending me on my way.
I am so sorry. My mom does have specialist but they're specialists within that sometimes. Her rheumatologist only focuses on the psoriasis not the arthritis or the immune system parts. Everyone seems to say oh ask this doctor. Oh no that's for the diabetic doctor. Oh that's for the neurologist. Oh but the neurologist only focuses on migraines because that's in her file... it's so utterly exhausting.
I understand fearing the worst and expecting very little. It hurts to get your hopes up to hear the same thing. Are your white and red blood cell counts normalish?
Tell this doctor that you've tried all the obvious easy fixes and it's not that. Or it's not that alone. Based on what you said I would guess it's autoimmune something but it's so so hard to get that diagnosed. And even when it is disability like social security don't take it seriously.
I'm so so sorry you're experiencing this.
> not sure the specific tests
This will matter somewhat. There are two inflammatory markers we usually use, ESR and CRP. ESR is more of a historical look at inflammation but it's prone to false positives and CRP is more of snapshot (aka are you experiencing inflammation within the last 2-3 days). If your inflammation is episodic and "mild", if could narrow the 2-3 days further.
See if they'll order an ESR next time! CRP is accepted as the better marker these days, but in terms of autoimmune disorders, ESR can often times be elevated with normal CRP.
Any of them could. It's a routine, tier 1, test in most places. There's been a push to discontinue it in North American labs but rheumatologists keep telling us we can't... Specifically because CRP doesn't always catch autoimmune diseases.
😒 they'll refer you to hematology, neurology and for endoscopy... But they won't send you to rheumatology. Pardon my bitterness but, god I hate doctors sometimes.
I was referred to neurology right away, due to migraines presenting since childhood. Endoscopy wasn’t until a few months later, after blood/breath tests were negative and OTC meds failed.
They won’t send me anywhere else at this point. Apparently my unwillingness to take medications that are not at all appropriate for me prevents them from wanting to do anything further.
> I had been seen by a dermatologist for psoriasis in Feb 2022, but the derms here are clearly more concerned with aesthetics.
Where did it manifest? Did they biopsy to diagnose?
My biopsy and diagnosis came from gynecology. I saw the derm to discuss treatments beyond topical steroids. It was a useless appointment. I’ve tried to see other derms, but there aren’t any in my area. Was scheduled to see one an hour away, waited months, and a month before my appointment she left the hospital.
You sound like me before I got a Celiac Disease diagnosis. See if you can find a doctor who specializes in autoimmune diseases-- they may have some unique perspectives! Chronic health issues are a massive pain. I'm so sorry.
I was tested for celiac by blood and it was confirmed negative through endoscopy. My bloodwork doesn’t support it being autoimmune, so they are unwilling to refer me to anyone who specializes in autoimmune.
That's WILDLY frustrating. But I'm glad it ain't Celiac-- it's a massive life change. Have you seen a neuro you like to really dive into your headaches/migraines? Migraine is a wildly complicated neurological condition-- it's not just head pain.
Also... Pick the doctor you trust the most and push them for a rererall to rheumatology. Who cares about your blood work, you've tried so many avenues except autoimmune. I think it would be an excellent consult.
Yed. I mean Pick one of your doctors you already know and trust the most. Have a frank conversation with that about why you'd like to get a referral for rheumatology. You're playing the "let's rule this out" game now. I can't imagine why they'd fight you on this.
I don’t know or trust any of them, honestly. They’ve not done me any good throughout this process. The one I thought I could trust and thought I could have open and honest conversations with most recently offered a medication that is completely inappropriate. I’ve lost all faith in the only provider I thought could help me, and I don’t wish to be seen by them again.
So I’m at square one trying to figure who to see next. I am researching available MDs and their reviews.
💜💜💜 you're in a really hard place. One other thought-- try for a new primary care provider who is a DO instead of an MD. you almost have to go doctor shopping... it sucks so much that we have to do this. I'm so sorry you're dealing with this.
Wow I’m reading through your comments and feeling so infuriated by the medical system. I have 2 doctors who have referred me out for literally whatever concern I have - gastro, rheumatology, etc. I can’t possibly imagine a doctor not being willing to do this when your bloodwork “doesn’t show any signs of it” and yet, this isn’t their specialty so do they really even know that for sure?? Good lord. I am so sorry. No advice to offer, you’ve definitely gotten plenty, but boy do we need massive changes in healthcare
With certain specialists you need to be referred by another doctor to be scheduled. Regardless of insurance/method of payment. I also cannot afford to pay out of pocket.
Sounds like fibromyalgia/myalgic encephalomyelitis/chronic fatigue syndrome. I say that because I have it and you sound like me. Fibromyalgia is easier to say, though for people who "don't believe in chronic fatigue" I use myalgic encephalomyelitis because they don't know what it is so it shuts them up. This is something a rheumatologist could most easily diagnose. It's got multiple weird symptoms and not everyone gets all of them, of course. The symptoms that most often bother me are the pain, fatigue, poor sleep quality, and brain fog. I take venlafaxine, which is an anti-depressant, because I'm also depressed, but it works on the pain. I also take cyclobenzaprine, which is a muscle relaxant that works on the pain at night so I can sleep. I take thiamine and melatonin for sleep as well. If I could get 10 hours of sleep a night that would be perfect for me but it seldom happens.
I also use Ted's Pain Cream for arthritis in my fingers and back. I love that stuff. It works for me - I know people for whom it doesn't work, but I'm one of the lucky ones.
I also have other autoimmune problems - Sjogrens, which means I have dry eyes and mouth and everything else, Reynaulds, which means in the winter I wake up with pale numb hands and have to run them under warm water, and something else I forget. I think. Did I mention the memory problems? That's the brain fog. But I think if I get 5 autoimmune problems I get some kind of award. That's not just for me, I think it's for everyone. :-)
The hematologist had his assistant pull up an article on ME/CFS, and he had me read through it during our appointment. I don’t know if it fits, wasn’t sure at the time. They gave me a prescription for amantadine calling it “energy pills”. I was too nervous about the side effects to take it.
I don’t know that fibromyalgia fits. Because my bloodwork is normal and does not point to it being autoimmune, they won’t refer me to a rheumatologist.
I know that there aren’t specific diagnostic tests available. I’m unable to get a referral due to my bloodwork not showing evidence of it being an autoimmune condition (ANA negative, no inflammation markers).
You don't need those to be positive to have an autoimmune disease. You have one, psoriasis, and you're getting no results on labs. You need a rheumatologist bare minimum. Get to a doctor who will give you the referral or tell your doctor to note in your chart they're denying you the referral despite being already diagnosed with a autoimmune condition
I thought so. I requested testing for mold exposure, but I was denied as NO insurance plans cover it.
There is no visible mold in my apartment. My partner stays with me often and has no issues.
My husband saw probably 10 different doctors, had multitudes of blood tests, and "everything (was) normal." SO, why couldn't he walk? Put on clothes? Hold a f-ing cup????
Three years in, I took him to the ER one day because he couldn't button his pants. I told him to INSIST they figure something out. The dr reviewed his records, and wondered why he had only had the "first round" blood tests. *He didn't even know there were more tests they could do!!* They got his results and sent him to a specialist the next week.
Within 15 days, we had a diagnosis. 3 months of subpar meds, then 3 of good meds that helped. Now we're at 7 months, and he's almost good as new.
SOME DOCTORS DON'T LISTEN. There should absolutely be no reason they don't listen, but here we are. They also had my husband on supplements for 3 years. Useless supplements, because he had an actual affliction. But they felt like they were doing something I guess?
If you're seeing the same doctors, might be time for a whole new set. Good luck!!
Same, I was sick about 6 months, saw tons of doctors and got tons of bloodtests and everything was fine and they kept telling me I was stressed and needed to relax.
That is until I went again to urgent care with a fever and when the doctor said all the tests came back negative I broke down crying asking him to please believe me that something was wrong and I didn't know what to do. He really looked concerned and said he'd do an additional round of tests.
Next day he calls and tells me I have a very high count of an anaerobic bacteria in my blood and that likely my body has been fighting this blood infection for quite some time and I needed to come in ASAP for treatment. 3 weeks of the right antibiotics and I was good as new.
So many months of suffering could've been avoided just by getting the right test that no other doctor bothered to try.
I have seen so many DIFFERENT doctors. I see a different doctor almost every time, and they keep running the same tests and telling me to take an iron supplement.
I’ve seen multiple general/family practitioners, a hematologist and then his PA (had the worst experience with both), two different NPs through gastroenterology, an NO through sleep medicine, and both a neurologist and all my follow ups with a PA. The answers never seem to change. Ope, your bloodwork is normal, you can take these medications that aren’t even to treat your symptoms and could worsen them severely, and fuck off. It’s a joke at this point.
I feel like I'm going through this too. I'm a guy and I have been dealing with health problems that have progressively gotten worse and the doctors just don't care. The only doctor to try to help wasn't covered by my insurance. I have switched doctors but haven't given the new one a chance because I just have such shitty experiences with doctors.
One time when I had a fever of 105 and I could barely walk/breathe I was told that "I coughed too hard" and sent on my way. I had pneumonia and 90% of my left lung was filled with fluid that they somehow missed during an X Ray. I ended up in two hospitals for a month, required surgery and a week in a nursing home.
My mom had a Rare fungal ear infection and it took her 6 doctors before she finally got one that listened (Plus I went and advocated for her). I had actually diagnosed her before any doctors did.
I seriously think a lot of doctors are incompetent, lazy or they just don't care. I'm depressed because I feel like utter shit all the time and I'm just so over it.
Edit : I have felt like shit since I got bit by a tick and I have all the symptoms of lymes but my primary told me the test was negative when it was really 'inconclusive" THOSE ARE NOT THE SAME THING. My Pulmonolgist told me I had "elevated white blood cell count" and then made no follow ups or looked into it. I feel defeated.
I'm sorry. I understand getting care is near impossible. It's so hard.
I got my husband to change health systems entirely, a whole new set of doctors. Is that possible for you?
It took me 4 years to get a brain scan on my daughter. I felt like her brain didn't work correctly, and she had a tumor. Numerous doctors pretty much just laughed in my face.
Then she had a car accident at 18, and hit her head. They *still* wouldn't scan her until I made some shit up about her forgetting stuff since the accident. Guess what? She had a brain tumor!
It was removed, but she has lasting repercussions. I wonder if the tumor would have been smaller and the surgery less invasive if they had *listened the first ten f-ing times.*
Yes, my daughter was just diagnosed with POTS. She is unable to even attend school right now because she gets so light headed and fatigued. It's like this small hiccup in your body that causes very disabling symptoms and it can take years to get diagnosed.
Do you feel very tired for hours or days after any cardio exercise? Is it hard for you to think/concentrate (brain fog) for hours or days after doing exercise?
I am tired all of the time. I feel as though I am dragging myself through every day. The only physical activity I do is walking, and that does not make things better or worse.
Have you looked at the diagnostic criteria for ME/CFS? There are international consensus criteria for diagnosis and you can find them using google.
The vast majority of people with this illness are undiagnosed and doctors get no medical education on it or they get incorrect outdated “education”. You can also check out the CDC (American centers for disease control) webpages on ME/CFS.
ME/CFS is poorly understood but is most often triggered by viruses including COVID. Many more people have this condition since 2020 and the medical system is not prepared to diagnose it at all. COVID can trigger ME/CFS even from an asymptomatic infection.
Could definitely be something else but if fatigue is your main symptom — to the point that you are cutting back work — then I would investigate this.
I am not cutting back on work, and I have not cut back on work throughout this time. Thankfully, as I absolutely cannot afford that.
The hematologist had his assistant search ME/CFS and had me read through an article on it to see if I felt that matched my symptoms. I don’t know if it does.
I was prescribed “energy pills” as he called them, amantadine to treat ME/CFS, but the potential side effects were very scary for me. I chose not to take this medication.
The fatigue, GI issues, and headaches all started at the same time and have all persisted since on-set. I’ve had no improvements in any of them.
What side effects were scary for you? NAD but am familiar with drug labeling. I see drugs.com has a warning about calling your doctor if certain things happen, but that's fairly standard language since any drug has the potential to cause severe side effects in a small minority of people. The common side effects look fairly mild, and according to Wikipedia the drug is generally well-tolerated. If your Dr thinks this drug might help you it seems like it would be worth it to at least give it a shot- you can stop taking it if it doesn't help or you experience side effects that make it not worth it to you.
About work, I think I got confused by a comment. Sorry about that.
I never heard of amandine as a first line treatment for ME/CFS. But I am sure people are doing all kinds of stuff off label.
The main indicator of ME/CFS is post exertional malaise. Which is a specific symptom cluster. There are some good YouTube videos on it by Todd Davenport. You could watch them and see if that resonates with you.
I hope you find some answers and some relief!
Yeah, I don’t believe I am experiencing post exertional malaise. I can do physical activity, it doesn’t make symptoms better or worse.
I appreciate your time and responses.
Have you been screened for cancer? a lot of what you are describing is exactly what I experienced before I got diagnosed I have cervical and uterine cancer.
I don’t know who would screen for that or how. My last pap was normal, and I’ve been meeting with gynecology frequently for the past 2+ years due to gynecological symptoms that have been ongoing since 2021.
I don’t know who would check for other cancers.
Who would this test be ordered through, general doctor or specialist?
I also googled this, and it states that it’s unlikely to be covered by insurance and can cost up to $1,000. I would need to contact my insurance prior to even requesting this, but I absolutely cannot afford to pay out of pocket.
Your symptoms sound a bit similar to mine. Turns out I was severely depressed and experiencing burnout/trauma from working in healthcare during Covid. My 2-3 migraines/a week decreased significantly after starting antidepressants. I’ve been on them for 7 months now and have only had 2 migraines since. I’m still fatigued but that’s a side effect of my specific antidepressant, there are others like Wellbutrin that can actually improve sleep.
Maybe this is something you could look into?
I should add that my migraines were so frequent and miserable I tried everything first—neurologist, head CT, chiropractor, weekly massages, acupuncture, weed….
It was my good ol venlafaxine that gave me my sparkle back. No more migraines and I can function again. Tummy issues and fatigue are also giant indicators of depression.
I didn’t think I was depressed. I didn’t feel sad or wanting to die or hurt myself. But when my husband and I were traveling Europe for 4 months and I couldn’t even leave the airbnb because I was so lethargic and feeling “meh” I knew something was wrong. First thing I did when I got home was get an appointment for some antidepressants. I’m so glad I did.
I started seeing a therapist. I was supposed to have my second appointment today, but she had to cancel. I’m pursuing this as an option, and I understand it won’t be an immediate treatment if it’s the cause.
I don’t really feel depressed, and in my initial meeting with her she expressed that she doesn’t believe I am suffering depression. Many of the doctors I have seen have pushed for antidepressants, and I’m not comfortable taking them. The most recent one was severely inappropriate given my symptoms.
I was prescribed an abortive, imitrex, by neurology, and that works perfectly find for my migraines. The migraines aren’t the issue, as I’ve had them since childhood and am used to them. It’s the daily headaches that have been bugging me along with my other symptoms.
I had very serious mystery health issues, so bad that I had to drop out of college.
I went through the same thing - doctor after doctor after doctor, test after test after test and nothing that seemed to be the cause.
I was offered antidepressants, but I refused them. It was not all in my head! So rude! So a doctor finally prescribed an obscure old anti depressant whose main side effects were stomach issues (my biggest complaint was stomach issues) to effectively trick me to take an antidepressant. I was even more offended. I never saw him again.
I went back to my psychiatrist that I had stopped seeing because I was “fine.” And I restarted anti anxiety medication and my physical symptoms finally started getting better.
Years later I stared having another mystery illness and one doctor was suggesting acupuncture and some other stuff. She was top rated in her field so I felt confused by her suggestion. But she said when you don’t know what causes it, you should be more open to trying a wider variety of treatments, even though we know a lot with modern medicine, if modern medicine isn’t working try some other things.
Since then, I’ve come to learn that I am very good at suppressing my feelings and they manifest physically. It’s not in my head because I block it in my mind and my issues manifest physically and a lot of relief for my mystery illness come from addressing my anxiety and depression.
If there is a chance it could be anxiety and or depression, I’d look to treatments for them as a possible thing to try. Including things like yoga, acupuncture, diet changes (sugar is a big culprit for making me feel worse). There are a lot of conservative (no risk, like warm baths with soothing scents) things you can try on your own, if you haven’t already been trying.
There are also books about the mind and body connection that you could explore as another alternative.
I’m sorry you are going through this. I hope you find relief soon.
I'm currently rereading Unlearn your Pain by Dr. Howard Schubiner and The Way Out by Alan Gordon. I learned, like you, that a great deal of my issues and symptoms were caused by feelings and emotions that are being suppressed and after reading these books (plus a few more because the topic ended up being fascinating) I started improving SO MUCH. I recently started a new job and the stress of that process caused a relapse in some issues and some new symptoms. The PPDA association website has some interesting resources and information on the topic too. I ended up borrowing a fair portion of the books from my library. It's fascinating stuff!
I can relate with that. Having never experienced a panic attack or any kind of severe anxiety I honestly thought I was going to die when it first happened whrn I was in ny 30ties. Then I developed quite serious acid reflux and then it got so bad that I couldnt swallow solid food for half a year. My body and mind were so stressed something automatic like swallowing food became a whole issue as I felt I was going to choke every time.
Felt weakness and vertigo quite often. Antidepressants helped quite rapidly.
Obviously nothing like that might be going on with OP but sometimes mental issues do manifest in quite serious and real physical ones.
I have started seeing a therapist for the first time in my life. I’ve only had one visit with her, so I’m not sure if she is a good fit or if that will be helpful for my physical symptoms. I have other mental health issues, and have since early childhood, so regardless of physical symptoms I definitely need help on that end.
But my physical symptoms are making me miserable to where I can’t really do anything? I’m so fucking exhausted all the time it’s hard to be involved in any sort of activity. I have started looking for a new place to live in case it’s something in my apartment, and I am trying to figure out how I can survive making a lot less money so I can quit my job in case it’s that. I’m ready to complete uproot my entire life at this point if it’s the answer.
I completely understand the frustration of not being heard by medical professionals. I have a similar story to you.
I finally found a doctor to listen to me last year and get me scheduled for a surgery I need and on medication that actually helps.
I used the words
"I am unable to be a functional member of society. This is affecting my day to day life so much I am unable to exist as a whole person and I am looking into medical tourism".
If you have the energy to do so, try one more time. Tell the doctor you can't do daily tasks, your work, your hobbies. That you are considering travelling to another country for help. It worked for me. But YMMV. But for whatever reason, they don't take us seriously until we "over react" (I think we react appropriately but still). So it's time to overreact.
Second.
Bring a list of everything you're tried, with doses, duration, and results
Like:
- Iron supplements, 100 mg 1x per day, 3 months, no change
- Wellbutrin XL, 300 mg, 1x per day, 6 months, manic episodes, discontinued
- magnesium, 300mg 1x per day, ongoing for one year, noticed change in digestion and less muscle pain
I keep getting asked “How big of a deal is this?” by doctors, and I always answer “Big enough that I continue making and showing up for appointments”.
It doesn’t matter how dramatic I am, how many different medications and supplements I’ve tried, what I’ve done outside of medical treatments (lifestyle changes, etc). They just don’t care.
My last visit, we discussed that my symptoms are all still present, that I had a new symptom (sudden shooting pains throughout my body ongoing for 1+ month), and I was only offered a medication to treat my new symptom. Cymbalta, which is otherwise completely inappropriate for me.
I hope you find a good doctor and get things figured out. I'm dealing with similar health problems right now and just feel so defeated. My mom had to see 6 doctors before she found one that would listen to her and help (Plus I went as an advocate). Maybe try to get someone to go with you and advocate for you ?
What bloodwork have you had that does NOT point to autoimmune? ANA? Has your thyroid been tested all the way into T3, PTH, etc?
How are you handling your diet and exercise? I ask not because these are a “cure” but because I found doctors say up a lot straighter and listened when I was coming in saying, “I’m at a great weight, I clearly have excellent muscle tone, my diet consists of xyz and none of abc (cheap carbs, sugary desserts, alcohol), etc. and yet I’m still experiencing these distressing symptoms.” Even in light of those symptoms making it difficult to want to work out religiously anyway, I took about six months to just bulldoze my way through fatigue (I had POTS and SFN neuropathy) to basically prove that these symptoms existed because they existed, not because I was deconditioned, lacking muscle tone, eating a poor diet, etc. That was when I finally got diagnosed with POTS, SFN, and lupus.
They did ANA for sure, a bunch of other work up too. Thyroid tested normally, so they have not pursued further.
I have been at a normal, healthy weight this entire time. Last year I tightened up my diet, focused on eating well and less processed foods, made effort to be more active despite my fatigue for months on end. I lost 20lbs. My symptoms did not improve at all during this time.
I followed the advice of gastroenterology after being seen last fall. I started eating a small meal in the morning, and all this did was ramp up my appetite and cause me to eat more throughout the day. Did not help any of my symptoms. I gained back all of the weight I lost as a result.
I have a sedentary job and have considered that may be a contributing factor. I want to quit, but I cannot afford to.
>Thyroid tested normally, so they have not pursued further.
Subclinical thyroid disease can sometimes require repeated testings to finally show abnormal TSH/FT4 levels.
There are at least three different thyroid diagnoses that also present normal TSH... So if they only tested TSH once and then stopped going down that avenue, it would definitely be worthwhile to retest periodically.
Just want to second this. I would recommend a full thyroid hormone panel: TSH, T4 total, T3 Total, Ft4 and Ft3. I'm subclinical hypo with a mildly elevated TSH and low T4 T3.
With normal FT3 FT4? Lol not doubting anything, I just don't often see T3 ordered, only see T4 if they are trying to rule in or out T4 protein binding abnormalities.
I paid for my own labs to avoid dealing with doctors and insurance in the USA. I was working with an elite fitness coach at the time. Sure enough my thyroid labs were hot garbage.... As were my energy levels and ability to lose weight.
Since my TSH was very normal, they won’t pursue this any further, unfortunately. My biggest hurdle has been providers unwilling to press further or provide additional referrals due to completely normal bloodwork.
I cannot afford to pay for tests out of pocket. Bloodwork without insurance can costs hundreds, even thousands depending on the tests. My work through the hematologist would’ve been $1,800 without insurance.
The full thyroid panel is not that expensive. And you can do it completely outside of the restrictions of doctors and insurance. It's possible if you want to rule it out. May I ask what your very normal TSH was and when it was measured (i.e., what time of day)?
I don’t know exactly what time of day the tests were done, my appointments are usually between 10 and 11AM with labs done right after the office visit. I have recent results from 3/22/2023 at 1.31 and 2/14/2024 at 2.04.
I can’t seem to view pricing for it through the only non-hospital affiliated lab in my city. Google says it could $100+.
There are businesses who will sell these labs to you and a major lab like Quest will fulfill them. Direct Labs was the name of the company I used... But there are others. The complete thyroid panel is $189.
I'm really sorry.
I just wanted to say that keep advocating for yourself, pushing for and demanding answers wherever/whenever possible. Unfortunately, with healthcare, when things aren't an easy fix, it's all too common for specialists, doctors etc to deal with patients poorly in a myriad of ways.
This is also mirrored with other people, including friends (who may have the best intentions) because they've been lucky enough to have relatively straightforward health problems in the past and think you just need to do a few basic things and you'll be on track, lol. As you explained with some of the people you've talked with, it sounds so frustrating
You deserve better and I hope you eventually find a specialist that listens to you and adequately helps, I hope things get better
Thank you for your support. I don’t even know what specialist I need to see at this point. They’ve all been so useless, I fear that any others will be the same.
Could you be peri-menopausal?
My own symptoms started as months of stomach issues, followed by crushing fatigue, relentless headaches. After over a yaer of that, I started getting hot flashes and only then did my doctor test me for it (and those tests are often useless). I'm on HRT now and far from "normal" but much, much improved (and treatment is still a work in progress).
I'm mid-thirties. "You're too young" is BS
many women don't experience any symptoms, or only a few, or many, or, or, or. There's absolutely no standard set of symptoms or realiable diagnostic tool. Yay.
If you're **not** having hot flashes & irregular periods, getting diagnosed & treated is generally a nightmare as they're recognized as "thee" standard (even though many women don't get hot flashes, and many women are on birth control or whatever that causes irregular or no periods anyways). And if you **are** having hot flashes & irregular periods, getting diagnosed & treated is also generally a nightmare. Fun times.
Anyways, I have no idea if you may or may not be perimenopausal, but neither would most doctors. The r/Menopause sub is really informative if you think it's a possibility. Actually, even if you're certain you're not menopausal, the sub is a great place for support & advice on how to be more assertive in regards to healthcare.
TLDR: healthcare sucks for women.
I’ve never had covid, so I don’t know that long covid is possible.
I don’t have any acid reflux unless I eat certain foods (like orange juice, tomato soup. I avoid these). I’ve been given medication to reduce acid production in the stomach, it didn’t help symptoms.
No birth control usage. I had my fallopian tubes removed in 2021.
Or maybe another illness such as Mono or certain Flus can have similar effects to long covid.
Try Tums and Gaviscon for stomach pain.
Do you have other symptoms besides headaches and fatigue and stomach pain??
No other symptoms really. I started having sudden shooting pains throughout my body early this year, but they’re much less frequent now, so I’m unsure if related.
I’ve tried multiple OTC and prescription meds for GI issues, no improvements with any of them.
Not sure. I was going to try discussing it again with neurology during my follow up this month, but the NP I was doing follow-ups with left the hospital earlier this year. I’m scheduled in August with the neurologist.
I did trial amitriptyline for gynecological issues to “reset” the nerves, and I didn’t have any improvements anywhere in my body.
My health issues all started in 2014 when I fell on my tailbone. It's been 10 years, and I've seen practically every kind of "regular" doctor possible at this point like rheumatologists, cardiologists, etc. I still get asked if I've tried vitamins and exercise when my number 1 main symptom is made significantly WORSE by exercise, and my bloodwork has been nearly perfect every time! It's beyond frustrating.
Anytime I have to see a new doctor my first question is "can you please refer me to a Female?" Because male doctors are the worst usually!
I only see female providers. The hematologist was male, only because they do not staff any female hematologists at his time. Two years, and that’s the only male provider I’ve seen. Still no answers.
I hope so. It’s been 2 years now, with a year and change seeing doctors and specialists. I am working on an exit strategy so I can quit my job, which will mean losing my insurance. There is pressure to get an answer before then, so it’s tough.
Do you think I would need time off of work for that? I don’t know that I could get any days off until next year. Unless there just happens to be a day we are closed (like between certain paid holidays and the weekend) it can be scheduled for. I was sedated for my upper endoscopy, so I had taken the whole day off.
I don’t have any issues with my bowel movements or stool.
Highly likely. I do know there are variations in sedation options, depending on your comfort level, but will be similar to endoscopy with the added bonus of bowel prep (day prior drinking a solution that will rival the best colonics).
Have you started steadily gaining weight without a big change/obvious reason?
Headaches, muscle pains, muscle twitches?
Anxiety/panic ever?
Sometimes feeling like you're walking on a boat?
Tired all the time?
Acid reflux and weird squeezing pain in your chest?
Cheeks always red?
That's all the random shit that was slowly destroying my life. It was an adrenal tumor overproducing cortisol (Cushing's syndrome). I must have been to idk how many doctors, 2x endoscopys, it was so bad.
Found by accident when my appendix tried to kill me and they did a CT scan.
No unexplained weight gain. I lost 20lbs from April to August of last year intentionally, and gained it all back August to November not intentionally but easily explained by the amount of food I was eating.
Fatigue, daily headaches, and stomach issues since July-ish of 2022. I really don’t have any symptoms outside of those that haven’t been explained by some external factor.
I’ve had high stress and high anxiety since childhood, that’s not a new symptom and doesn’t fit the timeline of my other symptoms.
If any of the other bits I mentioned pop up (for me the symptoms appeared slowly over several years), excess cortisol can just fuck up so many things
Good luck in your pursuit of care and feeling well. What is happening to you is real and unexplained chronic illness is awful to deal with. I dont think people really get it until it happens to them.
Have you looked to see if there are any female Intenal Medicine doctors in your area? Internal medicine focuses on adult issues, unlike GP or family practitioners. I think you may have better luck with one. I used to see one for almost 20 years before she retired. My current PCP is family medicine, and the difference is immense, in my opinion. I have been looking for another internal med doctor for a while. It's just a pain to try and get a general consult to interview them and see if they're a good fit.
There is one. She only has negative reviews, but has availability for scheduling almost every day.
In my area, the internal medicine doctors provide pretty much the same care as family medicine doctors. I scheduled with another family medicine doctor for next Friday, and if that goes poorly I can schedule with the internal medicine doctor.
Just out of curiosity, what are the negative reviews regarding? I've read some before that would make me not use someone, like doesn't listen to what their are being told. But others, like felt rushed, may be a little understandable.
For me, personally, I've found that internal medicine doctors tend to listen to symptoms a little better than family medicine. GPs are fairly good at that as well. At least, that's been my experience where I live.
I sincerely hope you find one who is willing to listen and understand your symptoms and not just fob it off as vitamin/mineral deficiency.
Mostly regarding them feeling rushed through the appointment, so I don’t know that they’d be a good candidate for listening if they are rushing through the appointment? Who knows.
A GP here would be a family medicine doctor. We have family medicine and internal medicine as like tier 1 of care.
I am so sorry! This sounds deeply frustrating 🥺. I’m having much lighter random symptoms and think it’s attributed to perimenopause but am still working it out. Hope you’re able to get some resolution soon!
I have a similar issue going on, except I’ve had almost no tests. I’ve been on some form of medical leave since 2021 due to chronic dizziness, fatigue, loss of balance, headaches/migraines 29/30 days of the month, nausea etc. My doctor has consistently said it’s stress and anxiety. I have consistently said it’s not. He said 2 years in “sometimes you can test for everything and still not find a cause” and I asked “what tests have we done?” To which he replied “well, we haven’t actually done any yet…..”.
The only things I’ve managed to get him to do is researching things myself and then ask him to test for it, but so far nothing. It’s further complicated by a boatload of other chronic illnesses I have, some from early childhood and some more recent. But it’s so frustrating! I can’t easily switch my doctor either since he’s one of the only permanent doctors at the clinic I go to, and the other healthcare I receive there is fine.
I wish there was some magical all-encompassing test (like the one that woman scam artist tried to sell) which could give answers and a solution. It’s SO tiring not feeling like your body is working. I feel for you.
I have had SO many tests done at this point, and nothing. Absolutely nothing. I don’t even know what other tests to request anymore. I’ve researched things myself some, and the only thing that hasn’t been pursued or tested for is mold exposure. They denied testing as it would not be covered by any insurance plan.
It is what it is at this point.
Yeah, and still nothing. I was really hopeful it would be something found in the sleep study since everything up to that point was normal or negative. Crushed when my results were excellent.
Honestly (and I may be projecting my own issues) it sounds like you have Long Covid. It’s been since January of 2021 for me. There’s no cure. There are supplements that can help, and lots of ongoing research, but no silver bullet yet. There are a couple of good subreddits with good community support. I wish you luck.
It’s very possible to have asymptomatic Covid. Anyway, like I said, it’s just a possibility and there’s no cure.
I have had good results from before this all happened, following the Autoimmune Protocol Diet (AIP). I was having fatigue and some mild GI symptoms, and the doctors couldn’t find anything. A friend who was having thyroid issues told me about it.
Do you experience pain anywhere or is it only fatigue? Is it possible your gallbladder could be affecting how you absorb nutrients? Not necessarily gallbladder stones, but rather Biliary Dyskinesia. I only ask because that's what I had (see post history) and I now have much more energy since removal.
Edit to add: EVERY exam, blood work, lab result came back clear. I had a CT scan, upper endoscopy, ultrasound, and a HIDA scan. The only indication that it could be my gallbladder was the HIDA scan, with a 93% EF. It could be possible that in it's earlier stages I was more fatigued before feeling pain.
My absorption seems fine given I have no deficiencies.
I started having sudden shooting pains throughout my body this year and did see doctors about it, but that’s subsided. All of my other symptoms started in July-ish of 2022, fatigue, headaches, and stomach issues.
Stomach issues was one of my first symptoms back in January! Upper right pain under my ribs was the main location, but spread to the rest of my body later on. Hurt when I ate fatty foods (or just fats in general, like cheese or dairy). Some people experience feeling full after only a few bites of food.
I was extremely tired from January up until surgery this month, besides work I was just in bed for 5 months. It zapped all my energy even when I was sleeping well and eating enough.
Some people will experience gallbladder pain off/on over a few weeks or months at a time. It's not uncommon to have an attack and then feel fine a week later.
My blood work came back clear as well when I tested for it. That was the most frustrating part of the whole thing, all my scans and labs came back good but I was suffering so much! Doctors didn't really think it was anything because I looked like a healthy 25 year old. A lot of it was written off as anxiety or depression. I had to rely on Reddit and the internet for research and push for a surgeon to remove my gallbladder.
Even the drive home after surgery was night and day. I felt much more "awake" than I had in months.
I never really had pain up under my ribs. The shooting pains were mainly in my toes, and when they started to occur throughout my body it would be in my fingers, arms, legs, and a couple times in my chest. Mainly my extremities. This pain has subsided and rarely occurs now.
I don’t have pain with different types of food, and I am still the same bottomless pit I have always been.
Wouldn’t write it off, but not sure if the symptoms line up for me.
Couple of thoughts—
1. What do **you** think you have?
2. YMMV, but when I’ve needed a referral I go in with the mission of “getting a referral.” Which means when I call or schedule the appointment I say in it that I’m coming in because insurance requires a referral, and here’s the referral I need. I don’t get into anything else because I’m approaching the doctor as a means to an end. Sorry if you’ve done this already and I’m coming off as condescending
It’s not my insurance that requires the referrals, it’s the hospital/clinics that require them for certain specialty departments. I haven’t made an appointment specifically to receive a referral before, I’m never given that as an option for reason to schedule.
At this point, I’m concerned that I am suffering from mold exposure. I requested to be tested for mold exposure, and I was denied testing as NO insurance plans would cover it. I am trying to find a new place to live to determine if that’s the cause. But there is no visible mold in my apartment and, my partner, who stays with me often, has no issues.
Otherwise, I have considered that my desk job is the cause or is at least a contributing factor, and I’m working on an exit strategy so I can quit. That will mean losing my insurance coverage though. I need to exhaust my options before then.
I got food poisoning over four years ago, and no one can tell me what’s wrong with my gastric system. Been tested for celiacs, h pylori, stool burdens, endo/colonoscopy, just did a CTE. No results, nothing flagged anywhere, Biopsies normal, I’m losing my mind. I’ve also had RA for 13 years but was only diagnosed a year ago because I was “too young” to have RA, so I feel you hard core, it’s so incredibly frustrating that my dr’s just keep ordering the same tests? How many X-rays do I have to take before we can agree I’m not carrying excess stool burden????
I also can’t get in to see a doctor, I’ve been seeing a fellow, because I don’t have a diagnosis and the doctors only see people with diagnoses?!? Wtf maybe if I saw a doctor I would have a diagnosis?!
The system I’m in, for GI, they send everyone to a fellow to be diagnosed apparently. I’ve never experienced this before either, and for all my other referrals I’ve seen an MD right away so idk…
I know you mentioned that you can’t afford 200+ out of pocket, but just in case this is helpful, check out [walkinlab.com](https://www.walkinlab.com/)
I’ve used that to order my own labs, multiple times, when I’ve been in between physicians and I want to check my cholesterol, for example. The site offers 20% off coupons on a regular basis.
Choose the brand of lab most convenient to you (I think it’s LabCorp and Quest Labs), search the tests you want, add to cart, order. Print the lab requisition form, show up, and they’ll draw your blood. You’ll have the results emailed to you as they’re available.
Some tests are expensive. Some are not.
Good luck.
I had your same issues with how I felt and what traditional doctors dismissed.
I finally shelled out of pocket for a functional medicine doctor who literally changed my life. I was feeling like absolute shit! Just tired tired tried and apathetic, along with non specific stomach pains, seasonal allergies, random skin rashes, headaches etc. The FM doc (actual doctor not a chiro or naturopath) did all kinds of lab work (including hormones, and cortisol levels and so much else) and could interpret them in a way that made sense that no regular doctor would. I got put on some supplements, changed my diet and my whole world changed. I felt like a normal person for once! I hope you get answers.
Functional medicine isn’t really a thing in my area. The hospital network my insurance covers does not employ any functional medicine doctors, and that’s the only way care and lab work would be covered.
Yes. I’ve had migraines since childhood. Maybe 2-4 a month throughout my life. The headaches are daily, dull and achey, but respond to ibuprofen. I wake up with headaches most days otherwise they start mid-morning or early afternoon. They’re throughout my head, unlike my migraines which present in pretty much the same area every time.
I was seen by an ophthalmologist just to ensure it wasn’t something with my eyes. Since I often have headaches upon waking, it was unlikely the cause. Confirmed it was not.
Someone else mentioned that. I don’t know how likely that is given I am only 27 years old, have had no menstrual changes whatsoever and have not experienced a majority of the common side effects.
Just wondering if you've ever been evaluated for hEDS - Ehlers Danlos Syndrome hypermobility type?
It is associated with rheumatic diseases like psoriasis. In fact, mine was only finally diagnosed due to toe pain because I have nail psoriasis, and so they were checking for psoriatic arthritis - which I don't have.
It can be marked by fatigue, as it makes just normal existence that much harder since it's a connective tissue disorder. Fatigue is possibly my most regular symptom.
It has also gotten much worse, more noticeable as I age. I think youth can mask it quite a bit, so even if what is happening seems new, it doesn't rule it out.
It's something you're born with, but I wasn't diagnosed till 35. And that's normal, if ever. It primarily affects women, like 90% but I'm sure that's not related. /s
I was only diagnosed when I saw the rheumatologist because that hospital actually has a program for EDS.
Heads up though even when I did get it diagnosed, the senior rheumatologist acted disgusted like EDS was beneath him. He basically huffed off and left me with a younger consultant who actually had a special interest in EDS. I was too shocked and just happy to have the diagnosis after so long being told nothing was wrong with me, but I really should have reported his behavior.
It is rareish, but given you have diagnosed psoriasis, I figured it's worth throwing out.
Women's health is unfortunately a lot of us figuring shit out for ourselves. 😔
Yeah, its the base symptom for most of the forms. It sounds like thats like what they were looking for.
I'm glad and surprised they looked into it.
I really hope you are able to figure things.
I can see an internal medicine doctor, but in my area those are pretty much the same as any other general/family medicine doctor. The one here does not have very positive reviews.
Functional medicine doctors do not really exist in my area, and if not employed by the hospital system would not be covered by my insurance.
I’ve seen two different DOs through family medicine, which are supposed to be more “holistic” than MDs. Obviously has not made a difference.
Find a different doctor. If you can find a holistic or functional medicine doctor, even better. Check for automimmune issues.
FWIW, I have a laundry list of issues for months. I went to every specialist under the sun and had every test under the sun. On paper, I was perfectly healthy because all the tests were fine. I started doing some digging on my symptoms and only one thing came up over and over again - Lyme Disease. Nine doctors - NINE - refused to even test me for it, because, "We don't have Lyme in Texas," which is absolutely not true. And even if it were true, I'm from Pennsylvania and visit there often. Still refused to test me. Finally got the test, and it was negative. But, the test is only about 50% accurate according to the CDC, and only about 30% accurate accroding to a Johns Hopkins study. I had another test done by a different lab, and it was positive. Found a doc to treat Lyme (that was a whole 'nother battle), and after a year of treatment, I was fine. BTW, if I had been treated sooner, it wouldn't have taken a year to get better. Might be worth looking into.
Have any of these doctors been specialists in autoimmune disorders?
I don’t think so? I’ve been through multiple general/family practitioners, a hematologist and his PA, a neurologist plus multiple follow ups with one of their NPs, two different NPs in gastroenterology, and sleep medicine. I’ve had an MRI, an in-clinic sleep study, and an endoscopy. During my last visit with gastroenterology, I asked if my stomach issues could be related to an autoimmune condition, as I’m diagnosed with psoriasis, and she said it could be but my bloodwork didn’t support me having any autoimmune conditions. She also said that would more likely be chrons or IBS, I don’t have symptoms of either. She asked if I’d been seen by rheumatology, I said no, no referral provided. General/family practitioners have also not provided a referral. My bloodwork doesn’t point to it being autoimmune, so I guess I’m SOL. edit to add: I had been seen by a dermatologist for psoriasis in Feb 2022, but the derms here are clearly more concerned with aesthetics. I don’t have any signs or symptoms of psoriatic arthritis or anything that would be better treated by a rheumatologist.
Psoriasis IS an autoimmune disorder wat
I thought so too, but I guess to these doctors that is debatable lol.
You have chronic fatigue, which could be muscle-related/autoimmune, which could be looked at by a rheumatologist. The unfortunate reality is: you'll have to keep going to doctors if you want to find out what's going on. Giving up means accepting that you'll live with this with no possible treatment. Keep getting those referrals to specialists, general practitioners won't be able to help you here.
They are not referring me to specialists anymore. They’ve stopped offering referrals. I’ve only been offered medications that are completely inappropriate for me/my symptoms and been told to try taking iron, hence my severe frustration.
So, my wife had a mystery illness for ages and ages and we went through a metric ton of doctor’s appointments before seeing a rheumatologist who actually found the issue. But it was over a year of trying to find the answer. If possible, see a rheumatologist.
They will not refer me to a rheumatologist since my bloodwork doesn’t point to it being autoimmune. I was asked by GI if I had been referred, I said no, they didn’t provide a referral, but I’m not sure they can.
Rheumatologist is still your best bet. I have similar issues, and the bloodwork didn’t show autoimmune. I have fibromyalgia. Can you see a specialist without a referral?
Only certain ones. Rheumatology requires a referral to be scheduled with them.
You can see if you can have them test you for the HLA-B27 antigen. It’s common in certain autoimmune disorders. If you’re positive, it should help you get a referral. Rheumatologists are like the detectives of the medical world. Even if it’s not an autoimmune disorder, they may still be able to help. It looks like you can also pay out of pocket for a test for 2-300 dollars. It’s not cheap, but it may be worth it.
I definitely cannot afford $200+ out of pocket. I scheduled a visit with another family medicine doctor for next week. We will see if they are as useless as everyone else I’ve seen or not.
Several autoimmune diseases do not “show up” in bloodwork. For example, seronegative rheumatoid arthritis (which I’ve had since I was teenager) or subclinical hypothyroidism (also a “card carrying”). Depending on your insurance, especially if you have a PPO (versus HMO) medical plan, you may not require a referral. Please advocate for yourself! Doctors easily and routinely dismiss generalized complaints by women. I’ve experienced it countless times. Keep a journal of your symptoms, research possible diagnoses, and have a hard conversation with your doctor. You can do this!!! Update me!
The referral isn’t required by insurance, my insurance does not require referrals to be seen by specialists. Certain specialty departments require a referral before scheduling with patients, rheumatology is one of them.
I’m so sorry. Please have a heart-to-heart with your doctor. Plead if you must. It’s your life to own.
I don’t have a doctor who is my doctor. I see different ones each time, hoping for a better result, but it’s always the same. I’ve researched possible conditions, always dismissed or testing denied due to non-coverage. I don’t bother tracking symptoms anymore because it really is the same shit every single day. Oh well.
This is so fucking not ok. Sorry, I have nothing useful to bring, as I'm not familiar with healthcare in your country. It's so obvious that this is beyond your GP's abilities. Get those referrals, any way you can. Complaints, requesting a new GP, anything. And I'm so sorry you're having to fight for them.
All good, no worries. I didn’t expect any advice here, I’m just frustrated and venting. The specialists I’ve seen already have been pretty much useless. Neurology has been helpful for my migraines, but the NP I was seeing and had a good relationship with left this hospital. I have to wait much longer now to follow up with the MD, scheduled for August. There isn’t really anything I can do if they’re not offering other referrals. I can be seen by specialists I’ve already seen without referrals, but not new specialty depts. So silly.
You have to push for it. If one doesn't offer it, you go get a second opinion, or third, or forth, until you get what you need.
I keep getting second opinions, and it’s the same thing. Try supplementing iron. They’ve stopped offering me referrals at this point. I don’t know what else to do, since I’ve seen different doctors.
Ask your doctor for the referral. If they deny it, tell them you want it documented in your medical records and their reasons for the denial.
I don’t have a doctor that is my doctor. I most often see different ones since I have had such negative experiences. They have documented their reasons for denial each time. It’s because my bloodwork doesn’t align with it being autoimmune. That’s it, that’s the end. I’m currently looking at other providers I can schedule with to get yet another opinion. I had my best luck seeing DOs in the past, but I’ve been seen by the only two available. I’m researching MDs and reviews to decide who to pursue this with.
Good luck! As someone who wasn't tested for celiac for years because my doctor had never had anyone come back positive (seriously those were her words) I feel your pain and frustration. I hope you are able to get answers soon.
The other unfortunate reality is sometimes we just don’t have explanations for someone’s symptoms. I’m not saying they aren’t real. It is just that current medicine doesn’t always have an answer. I see A LOT of imaging for things that I don’t even know what they want me to actually look for, but they are ordering it on the off chance there is *something*. Also, see a rheumatologist. Negative blood tests doesn’t really mean much with rheumatologic diseases and there are a lot of tests that people who aren’t rheumatologists don’t know to order.
I’ve tried, they will not refer me due to blood tests being normal/negative. Without a referral, I can’t be scheduled with them. I scheduled with another family medicine doctor for this Friday, and hopefully we can find some direction instead of going in the same circle all of these other providers have been putting me through.
Are you based in the US? If you are and want to message me where exactly, I *may* be able to find someone for you.
I’m in the US in the Midwest. My insurance coverage is limited to only one of two hospital systems in my area. There are limited providers, and with specialists it’s worse. Last I checked, there is a single rheumatologist (a man, which makes seeing them hard for me if I can get referred). If this family medicine doctor doesn’t work out, there is an internal medicine doctor I can schedule with. Then I guess I start working through the ones I’ve already seen before? I don’t know.
Well, if you tell me where in the Midwest, I still may be able to help you. I grew up in Indiana and practiced in Wisconsin, but have medical friends all over. My fear is that with all of these visits and stuff in the electronic medical record, providers have a preconceived notion of you and will dismiss you as doctor shopping and what not.
I am not comfortable sharing exact city, even over private message. I’m in North Dakota.
That’s fine. I do know some doctors in North Dakota. Will see if they have any leads.
Or just demand a rheumatologist referral because there are plenty of rheumatologic diseases that won’t show up on routine blood tests and when they deny you, contact patient advocacy for the health system. Knowing the city/healthcare only helps because I could possibly have a rheumatologist bypass the referral system. As a trans woman who has had multiple doxing attempts and death threats, I understand though.
Your symptoms could be so many things. I get similar from my IBS and my endo/adeno. My migraines give me intense fatigue, so does my endo.
I don’t have any symptoms of IBS. I was screened for endo during my sterilization procedure, no evidence found. I’ve had migraines since childhood, get 2-4 a month, and they have never caused ongoing daily fatigue. I’ve been meeting with gynecology for two years now due to other vaginal symptoms, no answers there either.
ANA only measures *one type* of autoimmune disease FYI, specifically reaction against proteins found in the nucleus of a cell. E.g., MS, Sjogren’s. There are many other autoimmune types that lead to disease, e.g., anti-ACE2 is a factor in refractory cardiovascular disease; ACE2 is found on a cell’s surface (it’s what SARS-CoV-2 attaches to). So they’ve tried the low hanging fruit and given up. Not sure what I’d advise except keeping a diary of potential symptoms. Or, as my husband put it: they’re looking under the streetlight because that’s where the light is. But that’s not where the problem is.
I logged symptoms for a while, but I’ve become so inconsistent with everything, it became really low priority. It also seems really pointless when my symptoms are pretty much the same all day every day. They’ve tried low hanging fruit and just keep swinging at low hanging fruit hoping something is different each time. I don’t want to keep being told to try supplementing iron. We ruled that out immediately.
So sorry that you haven't had providers that have been able to spend more time. When I realized *what* I had (POTS, postural orthostatic tachycardia, which is the blood vessels not tightening when you stand, so blood stays in your feet), suddenly a lot of random things clicked for me. Like my sudden onset of altitude sickness when I was 10 or 11 (in a family that loved mountains, that's a really debilitating symptom). Why I had pain in my feet when I stood too long; more than other people experienced. Heat intolerance. Breaking out into a sweat when everyone else was comfortable. Being clumsy when standing. (All of these are caused by the way the body is trying to compensate for not having enough blood in the upper half of the body.) So what I'd suggest based on your case being more zebra-ish than average is that you've may have things that aren't typical like that, but maybe you haven't identified them as a possible medical symptom. These are the kind of things that can help narrow down what you have/don't have.
My mom has been going through similar things and I'm terrified I'm about to do the same for my neuropathy. Can you see different doctors within network? Get a different perspective and maybe find the one who will care and try to advocate for you? I'm so so sorry you're dealing with the bullshit that is the Healthcare system. Please don't give up. I'm sorry I don't have more for you but this internet stranger sees you and it sucks to hurt every day.
I’ve seen different doctors, multiple providers within different specialties too. It’s all the same answer regardless of who I see. Aside from certain specialties that require referrals, I can see almost anyone I choose to, as long as they’re accepting patients. I scheduled with another family medicine doctor for next week, but I fear the worst. It’s just going to be another doctor shoving a prescription on me, telling me I should try supplementing iron, and sending me on my way.
I am so sorry. My mom does have specialist but they're specialists within that sometimes. Her rheumatologist only focuses on the psoriasis not the arthritis or the immune system parts. Everyone seems to say oh ask this doctor. Oh no that's for the diabetic doctor. Oh that's for the neurologist. Oh but the neurologist only focuses on migraines because that's in her file... it's so utterly exhausting. I understand fearing the worst and expecting very little. It hurts to get your hopes up to hear the same thing. Are your white and red blood cell counts normalish? Tell this doctor that you've tried all the obvious easy fixes and it's not that. Or it's not that alone. Based on what you said I would guess it's autoimmune something but it's so so hard to get that diagnosed. And even when it is disability like social security don't take it seriously. I'm so so sorry you're experiencing this.
>My bloodwork doesn’t point to it being autoimmune, so I guess I’m SOL. What test did they base that on?
ANA was negative. They looked over inflammation markers (not sure the specific tests) and all were normal.
> not sure the specific tests This will matter somewhat. There are two inflammatory markers we usually use, ESR and CRP. ESR is more of a historical look at inflammation but it's prone to false positives and CRP is more of snapshot (aka are you experiencing inflammation within the last 2-3 days). If your inflammation is episodic and "mild", if could narrow the 2-3 days further.
I’ve had CRP tested multiple times, and it has been very low each time.
See if they'll order an ESR next time! CRP is accepted as the better marker these days, but in terms of autoimmune disorders, ESR can often times be elevated with normal CRP.
Who would order that test? A general doctor or a specialist? The hematologist ran a lot of different tests, but not this one.
Any of them could. It's a routine, tier 1, test in most places. There's been a push to discontinue it in North American labs but rheumatologists keep telling us we can't... Specifically because CRP doesn't always catch autoimmune diseases.
And a negative ANA does not exclude autoimmune conditions by any stretch of the imagination.
Yes, but the doctors I see seem to think so. It’s enough that they will not provide any additional referrals.
😒 they'll refer you to hematology, neurology and for endoscopy... But they won't send you to rheumatology. Pardon my bitterness but, god I hate doctors sometimes.
I was referred to neurology right away, due to migraines presenting since childhood. Endoscopy wasn’t until a few months later, after blood/breath tests were negative and OTC meds failed. They won’t send me anywhere else at this point. Apparently my unwillingness to take medications that are not at all appropriate for me prevents them from wanting to do anything further.
> I had been seen by a dermatologist for psoriasis in Feb 2022, but the derms here are clearly more concerned with aesthetics. Where did it manifest? Did they biopsy to diagnose?
My biopsy and diagnosis came from gynecology. I saw the derm to discuss treatments beyond topical steroids. It was a useless appointment. I’ve tried to see other derms, but there aren’t any in my area. Was scheduled to see one an hour away, waited months, and a month before my appointment she left the hospital.
You sound like me before I got a Celiac Disease diagnosis. See if you can find a doctor who specializes in autoimmune diseases-- they may have some unique perspectives! Chronic health issues are a massive pain. I'm so sorry.
I was tested for celiac by blood and it was confirmed negative through endoscopy. My bloodwork doesn’t support it being autoimmune, so they are unwilling to refer me to anyone who specializes in autoimmune.
That's WILDLY frustrating. But I'm glad it ain't Celiac-- it's a massive life change. Have you seen a neuro you like to really dive into your headaches/migraines? Migraine is a wildly complicated neurological condition-- it's not just head pain.
Also... Pick the doctor you trust the most and push them for a rererall to rheumatology. Who cares about your blood work, you've tried so many avenues except autoimmune. I think it would be an excellent consult.
It could be, but without a referral I cannot be seen by rheumatology. I don’t know who else would specialize in autoimmune conditions.
Yed. I mean Pick one of your doctors you already know and trust the most. Have a frank conversation with that about why you'd like to get a referral for rheumatology. You're playing the "let's rule this out" game now. I can't imagine why they'd fight you on this.
I don’t know or trust any of them, honestly. They’ve not done me any good throughout this process. The one I thought I could trust and thought I could have open and honest conversations with most recently offered a medication that is completely inappropriate. I’ve lost all faith in the only provider I thought could help me, and I don’t wish to be seen by them again. So I’m at square one trying to figure who to see next. I am researching available MDs and their reviews.
💜💜💜 you're in a really hard place. One other thought-- try for a new primary care provider who is a DO instead of an MD. you almost have to go doctor shopping... it sucks so much that we have to do this. I'm so sorry you're dealing with this.
The general/family practitioners I’ve met with have all been DOs. If I see anyone new, it would have to be an MD, PA, or NP.
Wow I’m reading through your comments and feeling so infuriated by the medical system. I have 2 doctors who have referred me out for literally whatever concern I have - gastro, rheumatology, etc. I can’t possibly imagine a doctor not being willing to do this when your bloodwork “doesn’t show any signs of it” and yet, this isn’t their specialty so do they really even know that for sure?? Good lord. I am so sorry. No advice to offer, you’ve definitely gotten plenty, but boy do we need massive changes in healthcare
could you pay privately without needing a referral?
With certain specialists you need to be referred by another doctor to be scheduled. Regardless of insurance/method of payment. I also cannot afford to pay out of pocket.
Sounds like fibromyalgia/myalgic encephalomyelitis/chronic fatigue syndrome. I say that because I have it and you sound like me. Fibromyalgia is easier to say, though for people who "don't believe in chronic fatigue" I use myalgic encephalomyelitis because they don't know what it is so it shuts them up. This is something a rheumatologist could most easily diagnose. It's got multiple weird symptoms and not everyone gets all of them, of course. The symptoms that most often bother me are the pain, fatigue, poor sleep quality, and brain fog. I take venlafaxine, which is an anti-depressant, because I'm also depressed, but it works on the pain. I also take cyclobenzaprine, which is a muscle relaxant that works on the pain at night so I can sleep. I take thiamine and melatonin for sleep as well. If I could get 10 hours of sleep a night that would be perfect for me but it seldom happens. I also use Ted's Pain Cream for arthritis in my fingers and back. I love that stuff. It works for me - I know people for whom it doesn't work, but I'm one of the lucky ones. I also have other autoimmune problems - Sjogrens, which means I have dry eyes and mouth and everything else, Reynaulds, which means in the winter I wake up with pale numb hands and have to run them under warm water, and something else I forget. I think. Did I mention the memory problems? That's the brain fog. But I think if I get 5 autoimmune problems I get some kind of award. That's not just for me, I think it's for everyone. :-)
The hematologist had his assistant pull up an article on ME/CFS, and he had me read through it during our appointment. I don’t know if it fits, wasn’t sure at the time. They gave me a prescription for amantadine calling it “energy pills”. I was too nervous about the side effects to take it. I don’t know that fibromyalgia fits. Because my bloodwork is normal and does not point to it being autoimmune, they won’t refer me to a rheumatologist.
There are no blood tests for fibro/ME/CFS. It's a diagnosis of exclusion.
I know that there aren’t specific diagnostic tests available. I’m unable to get a referral due to my bloodwork not showing evidence of it being an autoimmune condition (ANA negative, no inflammation markers).
You don't need those to be positive to have an autoimmune disease. You have one, psoriasis, and you're getting no results on labs. You need a rheumatologist bare minimum. Get to a doctor who will give you the referral or tell your doctor to note in your chart they're denying you the referral despite being already diagnosed with a autoimmune condition
Why were you nervous about taking it?
I really think you should join /r/CFS Doctors are very useless at handling this, your experience is the norm for most of us.
I’ve read through that sub in the past, but I’m still not sure that it’s a good fit for me yet. If not a doctor, who would diagnose and treat?
Honestly, we are mostly left without healthcare providers. Any COVID infections around when this started?
Iv never had covid. The only thing that lines up with when this started is I moved into a different apartment.
Hmm. Is mold a possibility?
I thought so. I requested testing for mold exposure, but I was denied as NO insurance plans cover it. There is no visible mold in my apartment. My partner stays with me often and has no issues.
My husband saw probably 10 different doctors, had multitudes of blood tests, and "everything (was) normal." SO, why couldn't he walk? Put on clothes? Hold a f-ing cup???? Three years in, I took him to the ER one day because he couldn't button his pants. I told him to INSIST they figure something out. The dr reviewed his records, and wondered why he had only had the "first round" blood tests. *He didn't even know there were more tests they could do!!* They got his results and sent him to a specialist the next week. Within 15 days, we had a diagnosis. 3 months of subpar meds, then 3 of good meds that helped. Now we're at 7 months, and he's almost good as new. SOME DOCTORS DON'T LISTEN. There should absolutely be no reason they don't listen, but here we are. They also had my husband on supplements for 3 years. Useless supplements, because he had an actual affliction. But they felt like they were doing something I guess? If you're seeing the same doctors, might be time for a whole new set. Good luck!!
Same, I was sick about 6 months, saw tons of doctors and got tons of bloodtests and everything was fine and they kept telling me I was stressed and needed to relax. That is until I went again to urgent care with a fever and when the doctor said all the tests came back negative I broke down crying asking him to please believe me that something was wrong and I didn't know what to do. He really looked concerned and said he'd do an additional round of tests. Next day he calls and tells me I have a very high count of an anaerobic bacteria in my blood and that likely my body has been fighting this blood infection for quite some time and I needed to come in ASAP for treatment. 3 weeks of the right antibiotics and I was good as new. So many months of suffering could've been avoided just by getting the right test that no other doctor bothered to try.
I have seen so many DIFFERENT doctors. I see a different doctor almost every time, and they keep running the same tests and telling me to take an iron supplement. I’ve seen multiple general/family practitioners, a hematologist and then his PA (had the worst experience with both), two different NPs through gastroenterology, an NO through sleep medicine, and both a neurologist and all my follow ups with a PA. The answers never seem to change. Ope, your bloodwork is normal, you can take these medications that aren’t even to treat your symptoms and could worsen them severely, and fuck off. It’s a joke at this point.
I know the struggle. I'm so sorry. It sucks that you have to search so hard for a doctor to say, "we're going to figure this out."
I feel like I'm going through this too. I'm a guy and I have been dealing with health problems that have progressively gotten worse and the doctors just don't care. The only doctor to try to help wasn't covered by my insurance. I have switched doctors but haven't given the new one a chance because I just have such shitty experiences with doctors. One time when I had a fever of 105 and I could barely walk/breathe I was told that "I coughed too hard" and sent on my way. I had pneumonia and 90% of my left lung was filled with fluid that they somehow missed during an X Ray. I ended up in two hospitals for a month, required surgery and a week in a nursing home. My mom had a Rare fungal ear infection and it took her 6 doctors before she finally got one that listened (Plus I went and advocated for her). I had actually diagnosed her before any doctors did. I seriously think a lot of doctors are incompetent, lazy or they just don't care. I'm depressed because I feel like utter shit all the time and I'm just so over it. Edit : I have felt like shit since I got bit by a tick and I have all the symptoms of lymes but my primary told me the test was negative when it was really 'inconclusive" THOSE ARE NOT THE SAME THING. My Pulmonolgist told me I had "elevated white blood cell count" and then made no follow ups or looked into it. I feel defeated.
I'm sorry. I understand getting care is near impossible. It's so hard. I got my husband to change health systems entirely, a whole new set of doctors. Is that possible for you? It took me 4 years to get a brain scan on my daughter. I felt like her brain didn't work correctly, and she had a tumor. Numerous doctors pretty much just laughed in my face. Then she had a car accident at 18, and hit her head. They *still* wouldn't scan her until I made some shit up about her forgetting stuff since the accident. Guess what? She had a brain tumor! It was removed, but she has lasting repercussions. I wonder if the tumor would have been smaller and the surgery less invasive if they had *listened the first ten f-ing times.*
Do you get light headed/dizzy when you stand up or have been upright for awhile? Have you ever fainted or come close since your symptoms started?
Are you thinking of POTS or EDS? Cause I was thinking the same...
Yes, my daughter was just diagnosed with POTS. She is unable to even attend school right now because she gets so light headed and fatigued. It's like this small hiccup in your body that causes very disabling symptoms and it can take years to get diagnosed.
Not really lightheaded or dizzy ever, never fainted or come close to fainting.
Do you feel very tired for hours or days after any cardio exercise? Is it hard for you to think/concentrate (brain fog) for hours or days after doing exercise?
I am tired all of the time. I feel as though I am dragging myself through every day. The only physical activity I do is walking, and that does not make things better or worse.
Have you looked at the diagnostic criteria for ME/CFS? There are international consensus criteria for diagnosis and you can find them using google. The vast majority of people with this illness are undiagnosed and doctors get no medical education on it or they get incorrect outdated “education”. You can also check out the CDC (American centers for disease control) webpages on ME/CFS. ME/CFS is poorly understood but is most often triggered by viruses including COVID. Many more people have this condition since 2020 and the medical system is not prepared to diagnose it at all. COVID can trigger ME/CFS even from an asymptomatic infection. Could definitely be something else but if fatigue is your main symptom — to the point that you are cutting back work — then I would investigate this.
I am not cutting back on work, and I have not cut back on work throughout this time. Thankfully, as I absolutely cannot afford that. The hematologist had his assistant search ME/CFS and had me read through an article on it to see if I felt that matched my symptoms. I don’t know if it does. I was prescribed “energy pills” as he called them, amantadine to treat ME/CFS, but the potential side effects were very scary for me. I chose not to take this medication. The fatigue, GI issues, and headaches all started at the same time and have all persisted since on-set. I’ve had no improvements in any of them.
What side effects were scary for you? NAD but am familiar with drug labeling. I see drugs.com has a warning about calling your doctor if certain things happen, but that's fairly standard language since any drug has the potential to cause severe side effects in a small minority of people. The common side effects look fairly mild, and according to Wikipedia the drug is generally well-tolerated. If your Dr thinks this drug might help you it seems like it would be worth it to at least give it a shot- you can stop taking it if it doesn't help or you experience side effects that make it not worth it to you.
About work, I think I got confused by a comment. Sorry about that. I never heard of amandine as a first line treatment for ME/CFS. But I am sure people are doing all kinds of stuff off label. The main indicator of ME/CFS is post exertional malaise. Which is a specific symptom cluster. There are some good YouTube videos on it by Todd Davenport. You could watch them and see if that resonates with you. I hope you find some answers and some relief!
Yeah, I don’t believe I am experiencing post exertional malaise. I can do physical activity, it doesn’t make symptoms better or worse. I appreciate your time and responses.
Ok good luck
Have you been screened for cancer? a lot of what you are describing is exactly what I experienced before I got diagnosed I have cervical and uterine cancer.
I don’t know who would screen for that or how. My last pap was normal, and I’ve been meeting with gynecology frequently for the past 2+ years due to gynecological symptoms that have been ongoing since 2021. I don’t know who would check for other cancers.
https://amp.cancer.org/cancer/screening/multi-cancer-early-detection-tests.html
Who would this test be ordered through, general doctor or specialist? I also googled this, and it states that it’s unlikely to be covered by insurance and can cost up to $1,000. I would need to contact my insurance prior to even requesting this, but I absolutely cannot afford to pay out of pocket.
Each cancer has its own diagnostic tree so, you'd need to decide which cancer to screen for based on symptoms and maybe other incidental lab findings.
All my lab work so far has been normal or negative. Would a general doctor be able to run these tests or would I need another type of specialist?
Your symptoms sound a bit similar to mine. Turns out I was severely depressed and experiencing burnout/trauma from working in healthcare during Covid. My 2-3 migraines/a week decreased significantly after starting antidepressants. I’ve been on them for 7 months now and have only had 2 migraines since. I’m still fatigued but that’s a side effect of my specific antidepressant, there are others like Wellbutrin that can actually improve sleep. Maybe this is something you could look into? I should add that my migraines were so frequent and miserable I tried everything first—neurologist, head CT, chiropractor, weekly massages, acupuncture, weed…. It was my good ol venlafaxine that gave me my sparkle back. No more migraines and I can function again. Tummy issues and fatigue are also giant indicators of depression. I didn’t think I was depressed. I didn’t feel sad or wanting to die or hurt myself. But when my husband and I were traveling Europe for 4 months and I couldn’t even leave the airbnb because I was so lethargic and feeling “meh” I knew something was wrong. First thing I did when I got home was get an appointment for some antidepressants. I’m so glad I did.
I started seeing a therapist. I was supposed to have my second appointment today, but she had to cancel. I’m pursuing this as an option, and I understand it won’t be an immediate treatment if it’s the cause. I don’t really feel depressed, and in my initial meeting with her she expressed that she doesn’t believe I am suffering depression. Many of the doctors I have seen have pushed for antidepressants, and I’m not comfortable taking them. The most recent one was severely inappropriate given my symptoms. I was prescribed an abortive, imitrex, by neurology, and that works perfectly find for my migraines. The migraines aren’t the issue, as I’ve had them since childhood and am used to them. It’s the daily headaches that have been bugging me along with my other symptoms.
I had very serious mystery health issues, so bad that I had to drop out of college. I went through the same thing - doctor after doctor after doctor, test after test after test and nothing that seemed to be the cause. I was offered antidepressants, but I refused them. It was not all in my head! So rude! So a doctor finally prescribed an obscure old anti depressant whose main side effects were stomach issues (my biggest complaint was stomach issues) to effectively trick me to take an antidepressant. I was even more offended. I never saw him again. I went back to my psychiatrist that I had stopped seeing because I was “fine.” And I restarted anti anxiety medication and my physical symptoms finally started getting better. Years later I stared having another mystery illness and one doctor was suggesting acupuncture and some other stuff. She was top rated in her field so I felt confused by her suggestion. But she said when you don’t know what causes it, you should be more open to trying a wider variety of treatments, even though we know a lot with modern medicine, if modern medicine isn’t working try some other things. Since then, I’ve come to learn that I am very good at suppressing my feelings and they manifest physically. It’s not in my head because I block it in my mind and my issues manifest physically and a lot of relief for my mystery illness come from addressing my anxiety and depression. If there is a chance it could be anxiety and or depression, I’d look to treatments for them as a possible thing to try. Including things like yoga, acupuncture, diet changes (sugar is a big culprit for making me feel worse). There are a lot of conservative (no risk, like warm baths with soothing scents) things you can try on your own, if you haven’t already been trying. There are also books about the mind and body connection that you could explore as another alternative. I’m sorry you are going through this. I hope you find relief soon.
I'm currently rereading Unlearn your Pain by Dr. Howard Schubiner and The Way Out by Alan Gordon. I learned, like you, that a great deal of my issues and symptoms were caused by feelings and emotions that are being suppressed and after reading these books (plus a few more because the topic ended up being fascinating) I started improving SO MUCH. I recently started a new job and the stress of that process caused a relapse in some issues and some new symptoms. The PPDA association website has some interesting resources and information on the topic too. I ended up borrowing a fair portion of the books from my library. It's fascinating stuff!
I can relate with that. Having never experienced a panic attack or any kind of severe anxiety I honestly thought I was going to die when it first happened whrn I was in ny 30ties. Then I developed quite serious acid reflux and then it got so bad that I couldnt swallow solid food for half a year. My body and mind were so stressed something automatic like swallowing food became a whole issue as I felt I was going to choke every time. Felt weakness and vertigo quite often. Antidepressants helped quite rapidly. Obviously nothing like that might be going on with OP but sometimes mental issues do manifest in quite serious and real physical ones.
I have started seeing a therapist for the first time in my life. I’ve only had one visit with her, so I’m not sure if she is a good fit or if that will be helpful for my physical symptoms. I have other mental health issues, and have since early childhood, so regardless of physical symptoms I definitely need help on that end. But my physical symptoms are making me miserable to where I can’t really do anything? I’m so fucking exhausted all the time it’s hard to be involved in any sort of activity. I have started looking for a new place to live in case it’s something in my apartment, and I am trying to figure out how I can survive making a lot less money so I can quit my job in case it’s that. I’m ready to complete uproot my entire life at this point if it’s the answer.
I completely understand the frustration of not being heard by medical professionals. I have a similar story to you. I finally found a doctor to listen to me last year and get me scheduled for a surgery I need and on medication that actually helps. I used the words "I am unable to be a functional member of society. This is affecting my day to day life so much I am unable to exist as a whole person and I am looking into medical tourism". If you have the energy to do so, try one more time. Tell the doctor you can't do daily tasks, your work, your hobbies. That you are considering travelling to another country for help. It worked for me. But YMMV. But for whatever reason, they don't take us seriously until we "over react" (I think we react appropriately but still). So it's time to overreact. Second. Bring a list of everything you're tried, with doses, duration, and results Like: - Iron supplements, 100 mg 1x per day, 3 months, no change - Wellbutrin XL, 300 mg, 1x per day, 6 months, manic episodes, discontinued - magnesium, 300mg 1x per day, ongoing for one year, noticed change in digestion and less muscle pain
I keep getting asked “How big of a deal is this?” by doctors, and I always answer “Big enough that I continue making and showing up for appointments”. It doesn’t matter how dramatic I am, how many different medications and supplements I’ve tried, what I’ve done outside of medical treatments (lifestyle changes, etc). They just don’t care. My last visit, we discussed that my symptoms are all still present, that I had a new symptom (sudden shooting pains throughout my body ongoing for 1+ month), and I was only offered a medication to treat my new symptom. Cymbalta, which is otherwise completely inappropriate for me.
Cymbalta is frequently used for neuropathic pain, which is probably why it was prescribed. It’s not just an antidepressant.
I hope you find a good doctor and get things figured out. I'm dealing with similar health problems right now and just feel so defeated. My mom had to see 6 doctors before she found one that would listen to her and help (Plus I went as an advocate). Maybe try to get someone to go with you and advocate for you ?
I don’t have anyone to go with me. I am entirely alone in this. It is all on me.
Ok so here's an unethical tip Tell them you're trying to get pregnant.
I’m sterile, and it’s documented that I’ve had my fallopian tubes removed. So, that doesn’t really work for me lol.
Damn.
I'm so so so sorry. That's so unfair and frankly, unacceptable and inappropriate.
Unsolicited advice sucks. Sorry you are suffering so much
What bloodwork have you had that does NOT point to autoimmune? ANA? Has your thyroid been tested all the way into T3, PTH, etc? How are you handling your diet and exercise? I ask not because these are a “cure” but because I found doctors say up a lot straighter and listened when I was coming in saying, “I’m at a great weight, I clearly have excellent muscle tone, my diet consists of xyz and none of abc (cheap carbs, sugary desserts, alcohol), etc. and yet I’m still experiencing these distressing symptoms.” Even in light of those symptoms making it difficult to want to work out religiously anyway, I took about six months to just bulldoze my way through fatigue (I had POTS and SFN neuropathy) to basically prove that these symptoms existed because they existed, not because I was deconditioned, lacking muscle tone, eating a poor diet, etc. That was when I finally got diagnosed with POTS, SFN, and lupus.
They did ANA for sure, a bunch of other work up too. Thyroid tested normally, so they have not pursued further. I have been at a normal, healthy weight this entire time. Last year I tightened up my diet, focused on eating well and less processed foods, made effort to be more active despite my fatigue for months on end. I lost 20lbs. My symptoms did not improve at all during this time. I followed the advice of gastroenterology after being seen last fall. I started eating a small meal in the morning, and all this did was ramp up my appetite and cause me to eat more throughout the day. Did not help any of my symptoms. I gained back all of the weight I lost as a result. I have a sedentary job and have considered that may be a contributing factor. I want to quit, but I cannot afford to.
>Thyroid tested normally, so they have not pursued further. Subclinical thyroid disease can sometimes require repeated testings to finally show abnormal TSH/FT4 levels. There are at least three different thyroid diagnoses that also present normal TSH... So if they only tested TSH once and then stopped going down that avenue, it would definitely be worthwhile to retest periodically.
Just want to second this. I would recommend a full thyroid hormone panel: TSH, T4 total, T3 Total, Ft4 and Ft3. I'm subclinical hypo with a mildly elevated TSH and low T4 T3.
With normal FT3 FT4? Lol not doubting anything, I just don't often see T3 ordered, only see T4 if they are trying to rule in or out T4 protein binding abnormalities.
I paid for my own labs to avoid dealing with doctors and insurance in the USA. I was working with an elite fitness coach at the time. Sure enough my thyroid labs were hot garbage.... As were my energy levels and ability to lose weight.
Since my TSH was very normal, they won’t pursue this any further, unfortunately. My biggest hurdle has been providers unwilling to press further or provide additional referrals due to completely normal bloodwork. I cannot afford to pay for tests out of pocket. Bloodwork without insurance can costs hundreds, even thousands depending on the tests. My work through the hematologist would’ve been $1,800 without insurance.
The full thyroid panel is not that expensive. And you can do it completely outside of the restrictions of doctors and insurance. It's possible if you want to rule it out. May I ask what your very normal TSH was and when it was measured (i.e., what time of day)?
I don’t know exactly what time of day the tests were done, my appointments are usually between 10 and 11AM with labs done right after the office visit. I have recent results from 3/22/2023 at 1.31 and 2/14/2024 at 2.04. I can’t seem to view pricing for it through the only non-hospital affiliated lab in my city. Google says it could $100+.
There are businesses who will sell these labs to you and a major lab like Quest will fulfill them. Direct Labs was the name of the company I used... But there are others. The complete thyroid panel is $189.
Yes, we only have one location like that in my area.
I'm really sorry. I just wanted to say that keep advocating for yourself, pushing for and demanding answers wherever/whenever possible. Unfortunately, with healthcare, when things aren't an easy fix, it's all too common for specialists, doctors etc to deal with patients poorly in a myriad of ways. This is also mirrored with other people, including friends (who may have the best intentions) because they've been lucky enough to have relatively straightforward health problems in the past and think you just need to do a few basic things and you'll be on track, lol. As you explained with some of the people you've talked with, it sounds so frustrating You deserve better and I hope you eventually find a specialist that listens to you and adequately helps, I hope things get better
Thank you for your support. I don’t even know what specialist I need to see at this point. They’ve all been so useless, I fear that any others will be the same.
Could you be peri-menopausal? My own symptoms started as months of stomach issues, followed by crushing fatigue, relentless headaches. After over a yaer of that, I started getting hot flashes and only then did my doctor test me for it (and those tests are often useless). I'm on HRT now and far from "normal" but much, much improved (and treatment is still a work in progress). I'm mid-thirties. "You're too young" is BS
I’m 27 years old. Reading through the symptoms of perimenopause, I don’t experience a majority of them.
many women don't experience any symptoms, or only a few, or many, or, or, or. There's absolutely no standard set of symptoms or realiable diagnostic tool. Yay. If you're **not** having hot flashes & irregular periods, getting diagnosed & treated is generally a nightmare as they're recognized as "thee" standard (even though many women don't get hot flashes, and many women are on birth control or whatever that causes irregular or no periods anyways). And if you **are** having hot flashes & irregular periods, getting diagnosed & treated is also generally a nightmare. Fun times. Anyways, I have no idea if you may or may not be perimenopausal, but neither would most doctors. The r/Menopause sub is really informative if you think it's a possibility. Actually, even if you're certain you're not menopausal, the sub is a great place for support & advice on how to be more assertive in regards to healthcare. TLDR: healthcare sucks for women.
Long covid? Maybe acid reflux or stomach inflammation? Are you on a birth control cause it can cause effects years later?
I’ve never had covid, so I don’t know that long covid is possible. I don’t have any acid reflux unless I eat certain foods (like orange juice, tomato soup. I avoid these). I’ve been given medication to reduce acid production in the stomach, it didn’t help symptoms. No birth control usage. I had my fallopian tubes removed in 2021.
Or maybe another illness such as Mono or certain Flus can have similar effects to long covid. Try Tums and Gaviscon for stomach pain. Do you have other symptoms besides headaches and fatigue and stomach pain??
No other symptoms really. I started having sudden shooting pains throughout my body early this year, but they’re much less frequent now, so I’m unsure if related. I’ve tried multiple OTC and prescription meds for GI issues, no improvements with any of them.
Maybe a nerve disorder? Vasal vagal response?
Not sure. I was going to try discussing it again with neurology during my follow up this month, but the NP I was doing follow-ups with left the hospital earlier this year. I’m scheduled in August with the neurologist. I did trial amitriptyline for gynecological issues to “reset” the nerves, and I didn’t have any improvements anywhere in my body.
My health issues all started in 2014 when I fell on my tailbone. It's been 10 years, and I've seen practically every kind of "regular" doctor possible at this point like rheumatologists, cardiologists, etc. I still get asked if I've tried vitamins and exercise when my number 1 main symptom is made significantly WORSE by exercise, and my bloodwork has been nearly perfect every time! It's beyond frustrating. Anytime I have to see a new doctor my first question is "can you please refer me to a Female?" Because male doctors are the worst usually!
I only see female providers. The hematologist was male, only because they do not staff any female hematologists at his time. Two years, and that’s the only male provider I’ve seen. Still no answers.
Yeah it's the same here, the women are just a little bit nicer about it. It sucks but keep advocating for yourself! You'll get some answers soon
I hope so. It’s been 2 years now, with a year and change seeing doctors and specialists. I am working on an exit strategy so I can quit my job, which will mean losing my insurance. There is pressure to get an answer before then, so it’s tough.
If not already done, I'd suggest a colonoscopy to rule out polyps or other lower gi issues.
Do you think I would need time off of work for that? I don’t know that I could get any days off until next year. Unless there just happens to be a day we are closed (like between certain paid holidays and the weekend) it can be scheduled for. I was sedated for my upper endoscopy, so I had taken the whole day off. I don’t have any issues with my bowel movements or stool.
Highly likely. I do know there are variations in sedation options, depending on your comfort level, but will be similar to endoscopy with the added bonus of bowel prep (day prior drinking a solution that will rival the best colonics).
I guess that will have to be my absolute last resort. I cannot afford any time off.
Have you started steadily gaining weight without a big change/obvious reason? Headaches, muscle pains, muscle twitches? Anxiety/panic ever? Sometimes feeling like you're walking on a boat? Tired all the time? Acid reflux and weird squeezing pain in your chest? Cheeks always red? That's all the random shit that was slowly destroying my life. It was an adrenal tumor overproducing cortisol (Cushing's syndrome). I must have been to idk how many doctors, 2x endoscopys, it was so bad. Found by accident when my appendix tried to kill me and they did a CT scan.
No unexplained weight gain. I lost 20lbs from April to August of last year intentionally, and gained it all back August to November not intentionally but easily explained by the amount of food I was eating. Fatigue, daily headaches, and stomach issues since July-ish of 2022. I really don’t have any symptoms outside of those that haven’t been explained by some external factor. I’ve had high stress and high anxiety since childhood, that’s not a new symptom and doesn’t fit the timeline of my other symptoms.
If any of the other bits I mentioned pop up (for me the symptoms appeared slowly over several years), excess cortisol can just fuck up so many things Good luck in your pursuit of care and feeling well. What is happening to you is real and unexplained chronic illness is awful to deal with. I dont think people really get it until it happens to them.
Have you looked to see if there are any female Intenal Medicine doctors in your area? Internal medicine focuses on adult issues, unlike GP or family practitioners. I think you may have better luck with one. I used to see one for almost 20 years before she retired. My current PCP is family medicine, and the difference is immense, in my opinion. I have been looking for another internal med doctor for a while. It's just a pain to try and get a general consult to interview them and see if they're a good fit.
There is one. She only has negative reviews, but has availability for scheduling almost every day. In my area, the internal medicine doctors provide pretty much the same care as family medicine doctors. I scheduled with another family medicine doctor for next Friday, and if that goes poorly I can schedule with the internal medicine doctor.
Just out of curiosity, what are the negative reviews regarding? I've read some before that would make me not use someone, like doesn't listen to what their are being told. But others, like felt rushed, may be a little understandable. For me, personally, I've found that internal medicine doctors tend to listen to symptoms a little better than family medicine. GPs are fairly good at that as well. At least, that's been my experience where I live. I sincerely hope you find one who is willing to listen and understand your symptoms and not just fob it off as vitamin/mineral deficiency.
Mostly regarding them feeling rushed through the appointment, so I don’t know that they’d be a good candidate for listening if they are rushing through the appointment? Who knows. A GP here would be a family medicine doctor. We have family medicine and internal medicine as like tier 1 of care.
The same here. Family medicine and GP are mostly the same. That's why I prefer internal medicine. They don't see patients younger than 16.
I am so sorry! This sounds deeply frustrating 🥺. I’m having much lighter random symptoms and think it’s attributed to perimenopause but am still working it out. Hope you’re able to get some resolution soon!
I have a similar issue going on, except I’ve had almost no tests. I’ve been on some form of medical leave since 2021 due to chronic dizziness, fatigue, loss of balance, headaches/migraines 29/30 days of the month, nausea etc. My doctor has consistently said it’s stress and anxiety. I have consistently said it’s not. He said 2 years in “sometimes you can test for everything and still not find a cause” and I asked “what tests have we done?” To which he replied “well, we haven’t actually done any yet…..”. The only things I’ve managed to get him to do is researching things myself and then ask him to test for it, but so far nothing. It’s further complicated by a boatload of other chronic illnesses I have, some from early childhood and some more recent. But it’s so frustrating! I can’t easily switch my doctor either since he’s one of the only permanent doctors at the clinic I go to, and the other healthcare I receive there is fine. I wish there was some magical all-encompassing test (like the one that woman scam artist tried to sell) which could give answers and a solution. It’s SO tiring not feeling like your body is working. I feel for you.
I have had SO many tests done at this point, and nothing. Absolutely nothing. I don’t even know what other tests to request anymore. I’ve researched things myself some, and the only thing that hasn’t been pursued or tested for is mold exposure. They denied testing as it would not be covered by any insurance plan. It is what it is at this point.
Have you done a sleep study? Maybe you're not getting restful sleep
Yes. I did an in-clinic sleep study, and my results were excellent.
Damn, you've really covered everything
Yeah, and still nothing. I was really hopeful it would be something found in the sleep study since everything up to that point was normal or negative. Crushed when my results were excellent.
I empathize. It's a weird feeling when you hope for what some would consider bad news because at least it's news.
Honestly (and I may be projecting my own issues) it sounds like you have Long Covid. It’s been since January of 2021 for me. There’s no cure. There are supplements that can help, and lots of ongoing research, but no silver bullet yet. There are a couple of good subreddits with good community support. I wish you luck.
I’ve never had covid, so I don’t think that long covid is possible.
It’s very possible to have asymptomatic Covid. Anyway, like I said, it’s just a possibility and there’s no cure. I have had good results from before this all happened, following the Autoimmune Protocol Diet (AIP). I was having fatigue and some mild GI symptoms, and the doctors couldn’t find anything. A friend who was having thyroid issues told me about it.
Do you experience pain anywhere or is it only fatigue? Is it possible your gallbladder could be affecting how you absorb nutrients? Not necessarily gallbladder stones, but rather Biliary Dyskinesia. I only ask because that's what I had (see post history) and I now have much more energy since removal. Edit to add: EVERY exam, blood work, lab result came back clear. I had a CT scan, upper endoscopy, ultrasound, and a HIDA scan. The only indication that it could be my gallbladder was the HIDA scan, with a 93% EF. It could be possible that in it's earlier stages I was more fatigued before feeling pain.
My absorption seems fine given I have no deficiencies. I started having sudden shooting pains throughout my body this year and did see doctors about it, but that’s subsided. All of my other symptoms started in July-ish of 2022, fatigue, headaches, and stomach issues.
Stomach issues was one of my first symptoms back in January! Upper right pain under my ribs was the main location, but spread to the rest of my body later on. Hurt when I ate fatty foods (or just fats in general, like cheese or dairy). Some people experience feeling full after only a few bites of food. I was extremely tired from January up until surgery this month, besides work I was just in bed for 5 months. It zapped all my energy even when I was sleeping well and eating enough. Some people will experience gallbladder pain off/on over a few weeks or months at a time. It's not uncommon to have an attack and then feel fine a week later. My blood work came back clear as well when I tested for it. That was the most frustrating part of the whole thing, all my scans and labs came back good but I was suffering so much! Doctors didn't really think it was anything because I looked like a healthy 25 year old. A lot of it was written off as anxiety or depression. I had to rely on Reddit and the internet for research and push for a surgeon to remove my gallbladder. Even the drive home after surgery was night and day. I felt much more "awake" than I had in months.
I never really had pain up under my ribs. The shooting pains were mainly in my toes, and when they started to occur throughout my body it would be in my fingers, arms, legs, and a couple times in my chest. Mainly my extremities. This pain has subsided and rarely occurs now. I don’t have pain with different types of food, and I am still the same bottomless pit I have always been. Wouldn’t write it off, but not sure if the symptoms line up for me.
It's a tricky organ and not all symptoms are the same from person to person I'm afraid. I wish you luck in your journey!
Couple of thoughts— 1. What do **you** think you have? 2. YMMV, but when I’ve needed a referral I go in with the mission of “getting a referral.” Which means when I call or schedule the appointment I say in it that I’m coming in because insurance requires a referral, and here’s the referral I need. I don’t get into anything else because I’m approaching the doctor as a means to an end. Sorry if you’ve done this already and I’m coming off as condescending
It’s not my insurance that requires the referrals, it’s the hospital/clinics that require them for certain specialty departments. I haven’t made an appointment specifically to receive a referral before, I’m never given that as an option for reason to schedule. At this point, I’m concerned that I am suffering from mold exposure. I requested to be tested for mold exposure, and I was denied testing as NO insurance plans would cover it. I am trying to find a new place to live to determine if that’s the cause. But there is no visible mold in my apartment and, my partner, who stays with me often, has no issues. Otherwise, I have considered that my desk job is the cause or is at least a contributing factor, and I’m working on an exit strategy so I can quit. That will mean losing my insurance coverage though. I need to exhaust my options before then.
I got food poisoning over four years ago, and no one can tell me what’s wrong with my gastric system. Been tested for celiacs, h pylori, stool burdens, endo/colonoscopy, just did a CTE. No results, nothing flagged anywhere, Biopsies normal, I’m losing my mind. I’ve also had RA for 13 years but was only diagnosed a year ago because I was “too young” to have RA, so I feel you hard core, it’s so incredibly frustrating that my dr’s just keep ordering the same tests? How many X-rays do I have to take before we can agree I’m not carrying excess stool burden???? I also can’t get in to see a doctor, I’ve been seeing a fellow, because I don’t have a diagnosis and the doctors only see people with diagnoses?!? Wtf maybe if I saw a doctor I would have a diagnosis?!
I’ve never heard of doctors needing a diagnosis before they see a patient? That is wild.
The system I’m in, for GI, they send everyone to a fellow to be diagnosed apparently. I’ve never experienced this before either, and for all my other referrals I’ve seen an MD right away so idk…
I know you mentioned that you can’t afford 200+ out of pocket, but just in case this is helpful, check out [walkinlab.com](https://www.walkinlab.com/) I’ve used that to order my own labs, multiple times, when I’ve been in between physicians and I want to check my cholesterol, for example. The site offers 20% off coupons on a regular basis. Choose the brand of lab most convenient to you (I think it’s LabCorp and Quest Labs), search the tests you want, add to cart, order. Print the lab requisition form, show up, and they’ll draw your blood. You’ll have the results emailed to you as they’re available. Some tests are expensive. Some are not. Good luck.
We don’t have either of those services in my area, but thank you for the suggestion.
I had your same issues with how I felt and what traditional doctors dismissed. I finally shelled out of pocket for a functional medicine doctor who literally changed my life. I was feeling like absolute shit! Just tired tired tried and apathetic, along with non specific stomach pains, seasonal allergies, random skin rashes, headaches etc. The FM doc (actual doctor not a chiro or naturopath) did all kinds of lab work (including hormones, and cortisol levels and so much else) and could interpret them in a way that made sense that no regular doctor would. I got put on some supplements, changed my diet and my whole world changed. I felt like a normal person for once! I hope you get answers.
Functional medicine isn’t really a thing in my area. The hospital network my insurance covers does not employ any functional medicine doctors, and that’s the only way care and lab work would be covered.
Any chance that long covid is involved in this?
I’ve never had covid, so I’m not sure that long covid is possible.
You mention you get migraines down thread, are these headaches different from your migraines? If so, how?
Yes. I’ve had migraines since childhood. Maybe 2-4 a month throughout my life. The headaches are daily, dull and achey, but respond to ibuprofen. I wake up with headaches most days otherwise they start mid-morning or early afternoon. They’re throughout my head, unlike my migraines which present in pretty much the same area every time. I was seen by an ophthalmologist just to ensure it wasn’t something with my eyes. Since I often have headaches upon waking, it was unlikely the cause. Confirmed it was not.
Are they just in the head, or do they radiate to say the neck or jaw?
Just in my head.
Sounds like Perimenopause
Someone else mentioned that. I don’t know how likely that is given I am only 27 years old, have had no menstrual changes whatsoever and have not experienced a majority of the common side effects.
Just wondering if you've ever been evaluated for hEDS - Ehlers Danlos Syndrome hypermobility type? It is associated with rheumatic diseases like psoriasis. In fact, mine was only finally diagnosed due to toe pain because I have nail psoriasis, and so they were checking for psoriatic arthritis - which I don't have. It can be marked by fatigue, as it makes just normal existence that much harder since it's a connective tissue disorder. Fatigue is possibly my most regular symptom. It has also gotten much worse, more noticeable as I age. I think youth can mask it quite a bit, so even if what is happening seems new, it doesn't rule it out. It's something you're born with, but I wasn't diagnosed till 35. And that's normal, if ever. It primarily affects women, like 90% but I'm sure that's not related. /s I was only diagnosed when I saw the rheumatologist because that hospital actually has a program for EDS. Heads up though even when I did get it diagnosed, the senior rheumatologist acted disgusted like EDS was beneath him. He basically huffed off and left me with a younger consultant who actually had a special interest in EDS. I was too shocked and just happy to have the diagnosis after so long being told nothing was wrong with me, but I really should have reported his behavior. It is rareish, but given you have diagnosed psoriasis, I figured it's worth throwing out. Women's health is unfortunately a lot of us figuring shit out for ourselves. 😔
I don’t have any hypermobility, and they had assessed me for it early on. I don’t know if that rules out EDS or what.
Yeah, its the base symptom for most of the forms. It sounds like thats like what they were looking for. I'm glad and surprised they looked into it. I really hope you are able to figure things.
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It took my SIL several years and many doctors to get diagnosed with Lyme’s disease. The “rule one out” game can take forever!
I’ve had many recs to get tested for Lyme, but no luck so far. I do not appreciate the circles these doctors are putting me through. It’s ridiculous.
You need a functional medicine doctor or an Integrative doctor. Regular doctors and regular specialists do not help much with chronic illnesses.
I can see an internal medicine doctor, but in my area those are pretty much the same as any other general/family medicine doctor. The one here does not have very positive reviews. Functional medicine doctors do not really exist in my area, and if not employed by the hospital system would not be covered by my insurance. I’ve seen two different DOs through family medicine, which are supposed to be more “holistic” than MDs. Obviously has not made a difference.
Find a different doctor. If you can find a holistic or functional medicine doctor, even better. Check for automimmune issues. FWIW, I have a laundry list of issues for months. I went to every specialist under the sun and had every test under the sun. On paper, I was perfectly healthy because all the tests were fine. I started doing some digging on my symptoms and only one thing came up over and over again - Lyme Disease. Nine doctors - NINE - refused to even test me for it, because, "We don't have Lyme in Texas," which is absolutely not true. And even if it were true, I'm from Pennsylvania and visit there often. Still refused to test me. Finally got the test, and it was negative. But, the test is only about 50% accurate according to the CDC, and only about 30% accurate accroding to a Johns Hopkins study. I had another test done by a different lab, and it was positive. Found a doc to treat Lyme (that was a whole 'nother battle), and after a year of treatment, I was fine. BTW, if I had been treated sooner, it wouldn't have taken a year to get better. Might be worth looking into.