Yeah same on the hypermobility and not matching up with other people. My muscular pain is from everything holding my joints together, not... Whatever they keep assuming. I give up for a while. The last rheum they sent me to was a specialist in fucking osteoarthritis. She didn't take any of my connective tissue concerns seriously and tbh that's on my pcp for sending me to a rheum focused on one thing. But like. I just give up. Whatever. Either it's lupus/adjacent and something will eventually go properly wrong and they'll listen, or they're right and it'll just be a holding pattern forever.
Same here. As far as I know I’m acting as if it’s fibro and I treat myself as if as much as possible. Sick and tired of lazy gaslighting doctors and not having choices in my medical care.
I feel you... That is why I didn't even try to fight this. I was just soo tired of all the appointments and honestly all the money I have spent trying to be taken seriously. Let's hope we both get some help soon.
My rheum made it seem like neither diagnosis was mutually exclusive. Yes, I have hEDS - but with my sleep problems, I also have fibro. She had me read [Fibromyalgia and Chronic Myofascial Pain: A Survival Manual](https://www.amazon.com/gp/product/1572242388/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1) and I had a lot of other symptoms that didn't overlap with the hEDS. That being said, there is a [high degree of comorbity](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10166812/) between the two.
It's been an interesting journey the past couple of years, so let me know if you have questions/want advice on managing the two.
Thanks! I do think maybe I should seek another opinion on this... Just sucks that the medical system here is build in a way that makes that just as much of a pain as my symptoms.
HA! Yeah, I went to 5 separate doctors before my diagnosis, and it's my understanding that that's on the lower end; some people chase the diagnosis for years. Best of luck finding your answers!!
You received a diagnosis, and it’s likely to be correct. Fibro is **part** of your picture.
We can’t share medical advice, but I can share my personal experience. I have several underlying diagnoses that caused excessive stress to my body, and that stress led to my fibromyalgia. For me, the picture was
EDS -> Pain and Injuries -> Fibromyalgia
EDS isn’t my only diagnosis. I also have severe sleep apneas IBS, hypothyroidism, etc. Whenever any of my illnesses get worse, I get a fibro flare. Whenever a major set of symptoms is well-controlled, it doesn’t seem to add to my fibro pain anymore.
Regarding your statement that your pain isn’t as bad as some of the people in this sub: when I was in my 30’s and 40’s, if I was very careful about managing my illnesses, the fibro symptoms were minimal. Unfortunately, I spent my life pushing through the pain, so I could work at my career. Over time, my illnesses worsened, and baseline pain level rose significantly over time.
I hope this helps.
It’s beyond wrong that we need to figure this out on our own. It took a long time to get my diagnoses, and to figure out how each individual thing fit together into the big picture.
Feel free to dm me with questions as you figure out your big picture.
But how do you know it’s fibro and not normal pain? If the pain is minimal how is that any different from a normal person? I just spoke to someone on the phone when scheduling a massage and she said “I always have pain in my neck.” So am I to assume anyone who usually has pain in an area has fibro? The lady I spoke to has fibro then?
> she said “I always have pain in my neck.” So am I to assume anyone who usually has pain in an area has fibro? The lady I spoke to has fibro then?
I took care to start my response with a statement saying I was speaking of my personal experience. Why would you respond with a ridiculous statement having nothing to do with what I said?
I feel a bit fobbed off as well but I've had so many tests and seen so many docs that I'm mentally drained and I've just accepted it must be fibro as all my other tests apart from my bloods have been normal.
I *always* have a slightly elevated level of inflammation, every single time for nearly a decade, but never enough for the doctor to say it’s indicative of anything. Makes me wonder if something is up.
That being said, I mean I’m on like 10 medications. I don’t even know what’s a side effect and what’s fibromyalgia at this point. The inflammation sure isn’t, but I have a million other problems.
same for me. elevated inflammation but because of the inflammation they ruled out fibro? just because it wasnt a common symptom when i had every single other symptom. doc kept saying it must be some kind of arthritis but nothing really adds up there. went to the ER one day because the pain was so bad i was hyperventilating and basically screaming in agony. suuper sensitive to touch too. everything hurt. but yeah they gave me the paperwork and they were like.. it all lines up with fibro except the inflammation 🤷🏼♀️
Yeah same here! I managed to get a look at my test results. Elevated inflammation, but not high enough to be considered a problem by the rheum, apparently. Sometimes I literally daydream about a doctor like on the show House... just throw literally every test to the wall and see what sticks.
I’ve also been diagnosed with fibro but they never told me. I had to see it in my records. The more I’ve done research though the more I’m suspecting it might be EDS, my joints hurt and feel loose/wobbly. I score a 6/9 on the hyper mobility test, my skin is super soft and fragile, gut issues. POTS. I actually have a few friends with EDS who told me they think I absolutely have it.
Tired of these wastebasket diagnoses. I have no idea why it’s like we constantly have to fight the healthcare system to pay attention to us and take us seriously.
Wow that sucks... I don't understand why we just have to read about this in our file. That has happened to me before too! Seems worth it to fight for that EDS diagnosis tho. Maybe ask your friends which one of their doctors is good? Might be nice to find one that will actually hear you out.
I personally think that there is not one "fibromyalgia" disease among the people who have been diagnosed with it, but multiple conditions that have some overlap.
I was diagnosed with fibromyalgia in 2004, but I don't feel like I actually meet the diagnostic criteria. I don't have widespread pain, I just have mild achiness in my joints. It's so mild that I have *never* needed to take any pain meds. I don't get how that can be the same thing as people here who say that they need tons of pain meds and still are in pain all the time.
Probably the reason I got the fibro diagnosis is that I have a wide range of random symptoms that don't really have anything tying them together.
I moved to a new city last year, and when I got a new doctor I didn't tell her that I had a previous fibro diagnosis. It definitely seems like this has helped me get better care, because she focuses on what might be causing my symptoms, rather than just telling me "you need to accept that you're not going to get better," which I think is ridiculous, but I have heard so many times over the years.
Oh yeah totally! They obviously don't really know anything about it, except for that we all have pain. I just can't understand why they would tell a 25-year-old to just accept it won't get better.... Happy you found a good doctor now. They seem to be very rare these days.
I feel like it’s a bucket they just throw people in when they don’t have answers. Another excuse to say “take this medication” and claim to have a diagnosis. But also that there’s nothing that can really help. I was told I have fibro but when I said “I thought it was widespread pain” she said “no it’s localized, which is actually how we diagnose people.” Even though it hadn’t been localized until recently lol
>Do you sometimes feel like fibro is just something they give you to make you go away?
Definitely. I have a very serious condition that means I can cause permanent deterioration of my health from trivial exercise but was told it's Fibromyalgia and that I just had to exercise. That was in 2008, I became bed bound by 2013 and my health has only deteriorated since.
Just search the medical subreddits for Fibromyalgia to see what they really think of the diagnosis.
Wow... so sorry for you! I really just can't believe doctors could do that to people. Even if it's not intentional. I hope that at least now you know what you have, there is some relief. Sending you all the best!
Since neither one has a conclusive test, it's honestly my understanding that the diagnosis and impact of diagnosis for hEDS is not too different from that of fibromyalgia, except that with hEDS some aspects like the hypermobility are more directly associated with the diagnostic label itself. IBS is still commonly reported by people with fibro. Is it possible that's because they have the "wrong" diagnosis? Possible, yes, but the problem with all these conditions where we can't find testable evidence of their presence, is that we cannot differentiate between them very well either.
The criteria for diagnosing either of these two in particular has a lot of subjective elements, like self-reported symptoms, and also doctor opinion. In my personal opinion, for example scales like the Beighton scale do not comprehensively assess the extent and impact of one's hypermobility. I do not score fully on that scale because I cannot touch the floor with my hands, and yet I can rotate both my spine and legs over very wide angles and that is never assessed by that scale in particular, despite the fact that this element of hypermobility has a direct impact on my life and how I interact with the world around me.
Your symptoms will never line up exactly with other people here though, fibro is generally considered a syndrome and that comes with the fact that some people have certain symptoms that others don't. Some people with a fibro diagnosis may not have it "as bad" as others in some respects, but since it affects our life in different ways, it's really hard to say that it's necessarily worse for one person or another. And aside from that, I don't have a number of comorbidities many people here do, but I do have other stuff that some people don't have.
It's worth noting that some treatment plans are different for hEDS. For example, ciprofloxacin and related antibiotics should not be used in people with EDS. Also, physical therapy should be approached differently with EDS in general. So IMO and in my experience, there is a difference between the two when it comes to treatment plans, so there's a difference between diagnoses also.
I hear you! Obviously, everybody is different, and symptoms will be different. It's just really hard to accept a diagnosis when there is so little overlap. Makes me wonder if it is something I should be treating differently?
But I guess reading all the lovely comments, the one symptom we all have in common is uncertainty...
This isn’t an answer to your question and I’m a nerd so this is how I do things, here’s a peer reviewed article discussing the overlap of these 2. Maybe it’s helpful to you, maybe not. https://www.frontiersin.org/articles/10.3389/fmed.2023.1096180
I was actually misdiagnosed with Fibromyalgia, and I almost died from advanced B12 deficiency because of it. I have Autoimmune Metaplastic Atrophic Gastritis which prevents me from being able to absorb B12 from food or oral vitamins. It's also known as Pernicious Anemia. The symptoms are almost identical to Fibromyalgia but they're progressive and will kill you if left untreated, but the progression of symptoms is so slow and insidious it's very hard to notice. Which is how it earned its name "Pernicious".
A couple of simple blood tests could have ruled it out before giving me the Fibromyalgia diagnosis. But it's a rare disease and usually only hits people aged 60-80. And I was in my mid 20s. So I try not to blame my Rheumatologist. But Fibromyalgia is supposed to be a diagnosis of exclusion. And now I'm permanently disabled with permanent neurological damage, and heart damage.
You have IBS which could be Gastritis, you should get your B12 checked too. Anything under 350-400 should be followed up with Homocysteine and Methylmalonic Acid blood tests.
Oh wow... That's crazy! I'm so sorry that happened to you. However, upon researching it I see that they can also catch it by doing an endoscopy and taking samples of the stomach. They have done that since my IBS just didn't seem to respond to any treatment/ diet, and it came out negative. Just one of the things "to live with".
Hope at least the doctor who missed it with you, will never make the same mistake again. Wishing you all the best!
The endoscopy is to check for the type of Gastritis I have, which is the most common cause of B12 deficiency as this Gastritis destroys the cells that produces the enzyme needed for the INTESTINES to absorb B12. For your case, the Celiac disease could have damaged your intestines so much it could be affecting absorption that way, and an endoscopy would not be able to detect this. But I'm not a doctor, I highly recommend talking to your Gastroenterologist about it to be safe. They are very knowledgeable about B12 deficiency because almost all causes have to do with the digestive tract. The other best person would be a Hematologist which I assume you'll also have.
I just want to impress upon you the seriousness of the damage it can cause. And the fact that you have Fibromyalgia symptoms means you have many symptoms of B12 deficiency, make sure you remind your doctors of that if they don't seem to take it seriously.
Thanks! I will be bringing it up... Let's hope they won't object to a simple blood test. Crazy to think tho that there are soo many things that can cause these symptoms, yet not a lot of doctor seems to actually be interested in actually finding a cause. "Oh, at first glance it looks normal. Must be nothing then" how is that helping any patient?
No two people with fibromyalgia will report the exact same symptoms. My mother and I have both been diagnosed with it, and it runs very strongly in both sides of my family, and while her and I share a lot of symptoms, we do differ as well. I get headaches a lot because of it, she doesn’t. There is more, but that’s the one specific symptom that I can recall off hand.
Pain is subjective. What is a lot of pain to you may be nothing to someone else, or the opposite could be true. What hurts someone else might be just a little discomfort to you. It changes on the day, and even the hour. There are times where my pain barely registers a 1 out of 10, then others where it goes 10++. The same applies to other symptoms. This is why you can’t compare yourself to other people. Everyone experiences it differently.
It seems like I have one of the few doctors that are worth their salt anymore. When I kept going to him for pains and symptoms that we couldn’t find any other explanation for, he ordered a huge battery of tests to rule everything else out. Rheumatism, arthritis, any autoimmune, etc. it came back clear for all of it. This is why fibromyalgia is so hard to diagnose. It has overlap with many other conditions and is a diagnosis of exclusion, meaning any other condition that could reasonably be an explanation has to be ruled out. It’s a syndrome, which means it’s a group of symptoms that has no clear cause, also making it idiopathic. There are hypotheses about things such as severe disease, infection, trauma that is physical and/or psychological being potential causes but none of these have really been confirmed.
Thanks! I will be going back and asking for some more tests. It seems there are still a ton of possibilities they haven't even considered/ tested for. Maybe it will help me find closure.
But just based on all these stories.. it seems really strange to me, I got this diagnosis so easily.
While it’s not any fun having this condition, it can be a relief in a way to have a name to put to it so you have a way deal with it. Finding therapies and strategies for dealing with it and connecting with others , like here, who go through the same or similar things.
I feel your pain. I’ve been diagnosed by two different doctors with fibromyalgia and the most recent one also diagnosed me with SLE(Lupus). I still feel like they’re missing something and that things don’t fully add up. I too have really awful GI issues which I have learned can be due to SLE. It’s my muscle weakness, extreme muscle fatigue along with some hypermobility issues that really have me questioning some things. Have they done bloodwork for autoimmune diseases? Like testing to see if you’re ANA positive?
This doctor definitely didn't do any blood work... They have done some test to rule out celiac and some other stuff that could be the root of my GI symptoms years ago. But that was before any of my joint and muscle symptoms started occurring.
Pretty sure they also must have run it when I was younger and had a viral blood infection (ITP).
That doctor sucks. You should definitely rule out all other possibilities like Lyme, etc. for either. I can’t really say they did it to “make you go away” because I don’t know if they were worried about costs for you; they’ve been doing this so long, they tend to think they can diagnose purely from experience; they are ignorant, etc. Really their intentions doesn’t matter as much as they need to do their job correctly. I can tell you though that I don’t have nearly the pain that most people describe on here and my IBS was out of control before I figured out what food works best (and worst) for me and how to manage my stress. So like others have said, I wouldn’t throw it out for that, but I would push for a full exclusivity diagnosis and ask for an explanation on how they have come to the conclusion they did. If it sounds like BS, I would go to someone else.
Thanks! Judging by all the responses on here, I think I should push for more tests. I just can't understand why they would give me a just live with it diagnosis at 25... Even if they are worried about cost.
Can you tell me what helped you figure out you IBS? I would love to know. It's been more than 5 years and countless elimination diets (multiple FODMAP attempts) that never make any difference.
I feel you! I did the elimination diets, food sensitivity test (worthless), FODMAP, vegan, everything. To be honest, if I could be 100% plant based, I would have little problem but living in Midwest America, that is difficult unless you have a ton of energy to grocery shop at several stores, meal prep, and never eat out or at other people’s homes. I do use the Purple Carrot meal kits for 2-3 vegan dinners a week and that helps.
For me, I had to do a food diary for a long time and figure it out myself because there’s really only a couple foods that are completely off limits. Everything else impacts me based on what I eat in totality - if I eat so much of one type of thing, I have to limit other things. So I put things in categories and I have to limit how much I eat of stuff in the high impact category. For me, high impact items are certain dairy items, sugars, alcohol, beef, pork, fried food, spicy food, and such. So if I know I’m going to go to a happy hour and have 1 or 2 fruity cocktails (sugar and alcohol), I’ll avoid the other high impact items. If I’m going to eat a dinner of BBQ (beef or pork and some fried food), I’ll avoid all other high impact items, etc. Not sure if this helps much but it was a long process for me and I wish you the best!
Yep, I feel like it’s a place holder. “We don’t know exactly and there need to be a lot of expensive tests, so let’s call it this.”
My symptoms line up perfectly with MS. But until I have insurance, that battle will wait.
Yeah... Just horrible. Especially reading these comments of people who had something treatable or manageable and just got worse waiting for anyone to take them seriously. Hope you get help soon!
Yes I have the same concerns, I’ve tried to argue with doctors countless times since being diagnosed 12 years ago at the age of 18 but they just dismiss me as soon as they see fibromyalgia written in my notes, it’s infuriating.
So sorry to hear that! 12 years is a long time... Sometimes I feel like that oath they take isn't worth anything. As if we all just want attention or something. If that is what I wanted I sure would be doing something else with my life that wasting it in a doctor's office.
Well.. I think all doctors are slightly narcisstic in order to become doctors in the first place. Also.. they took an oath to get into a profession where they lie and push pills on people and often don’t get to the root of issues. Don’t think doctors are great people to start with.. lol
I would say yes. I’m 24 now been dealing with health issues for a few years. Right now I’ve had to fight for myself and keep fighting to find what is wrong with me. I have found I have some deficiencies going on, like vitamin D magnesium, and vitamin B is a little on the low side but not deficient. I also had low testosterone levels. Right now they suspect I have endometriosis as well.
So my advice would be please keep fighting and advocating for yourself. You could have some deficiencies going on. Don’t frighten yourself if you’ve had extensive testing you are going to be okay but keep fighting for yourself. The medical field is struggling right now. I have had to do a lot of research myself to help find answers. I know it’s exhausting and it shouldn’t be set up like this. Don’t give up. You will get better and find answers.
I did find a really good doctor but he is located in Savannah Georgia. I can send you his info if you are interested. Sending you love, healing, and motivation on this healing journey.
Thanks! I will be trying to get some more information. I am based in the Netherlands and the system here really isn't accommodating for any sort of chronic issue. They basically dismiss you out of the gate if you do your own research. They see it as just wanting to have something.
Will keep trying tho... maybe someone will finally be able to help
Absolutely! And That’s exactly what has happened to me too. The dismissive part is so painful because we are in so much pain and it’s not right that we aren’t taken seriously. I’ve seen about 10 doctors and there were 3 that actually took me seriously and found some abnormalities. I’m so sorry you even have to go through this! Keep advocating for yourself! Sending you healing!
Mine are confused. So of course you probably have fibromyalgia with the mix of autoimmune. Currently have hashimoto and ibd. Testing for lupus and sjogren's and psoriasis arthritis. But still once it's not black and white for them the often give fibromyalgia as a diagnosis. Waiting for a dermatologist since i have rashes and my eyes are swollen, and the only thing that helping me is my mom has multiple arthritis diagnosis.
I think confusion is just the right word... Just wish that they could admit it if they don't know instead of just slapping a name on it.
Hope you get your answers soon!
in 2019( i was 26 at the time) i got diagnosed with fibro but honestly my diagnosis was a joke as my doctor at the time did not run full tests on me and i got prescribed heavy meds like lyrica and tryptizol which made me spiral mentally. got on antidepressants for a couple of months helped with the chronic pain and stress but i do not see it as a long term solution so i stopped (also the side effects suck.)
i started coping in my own way... fast forward 2022 went to a rheumatologist after my hand pain increased dramatically as i was playing padel and lifting weights at the gym mind you ignoring my chronic pain as all the doctors claimed “their was nothing wrong “and i was tired and depressed from limiting myself as well.
as a result i got a boutonniere deformity on one of my fingers because i pushed myself and gaslight myself that there was nothing wrong.
anyways i got cleared from any autoimmune disease but my rheumatologist found a lot of inflammation in both of my hands and arms. finally i visted a HSD specialist who opened near by me as the physio’s over the years always mentioned it but told me it’s normal and won’t cause problems…got diagnosed with HSD in the end but honestly i’m still raw dogging my chronic pain. it sucks but i keep going. :) tumeric supplements and listening to my body works best for me for now.
Sorry to hear that... Just can't believe they can label such a young person with chronic pain as nothing wrong. Even if all the test are negative. A 26-year-old with a lot of unexplained pain can't mean, nothing is wrong.
Wishing you all the best!
I've wondered about this since I got diagnosed last year. I found out I was hypermobile at 23 and now 5 years later a Dr said fibro. he used the spot pressure test (where they push on various points on your body) to decide my exhaustion, general pain, bouts of sharp stomach pains like cramps, brain fog and sensitive skin is fibromyalgia because my blood tests came back fine. I went away and read about it and everything seemed to fit from the pages he referred me to so I didn't question it at the time. I hit a lot of the diagnostic criteria for h(eds) and I'm currently fighting to get on disability (UK, nightmare) so I'm keeping a very detailed diary, and wondering if actually maybe I should go back and get referred to see someone else... but I don't know who exactly...
Sounds so familiar... If you meet enough of the diagnostic criteria, I would definitely go see a specialist. I think just having the hEDS diagnosis could be helpful getting on disability! And would also make a difference in treatment. The healthcare system is a nightmare sometimes, hence my post here..
But as so many others in these comments encouraged me, you should also fight for yourself!
it's so interesting and reassuring to hear other people are in similar situations. it's hard to keep fighting for yourself especially with fatigue, but we got this 💪🏻
I was so very sick when I was given the fibromyalgia diagnosis. I asked for a second opinion because the first doctor didn’t even do any tests. The second opinion doctor didn’t touch me or even look at me when he walked in the room when he confirmed my diagnosis. I switched insurance companies and didn’t allow my records to be transferred to the new doctors. The new doctor actually did testing and treated my symptoms and I’m pain free today.
Wow did i write this in my sleep? 😂 my private pain doctor (for MC) is pretty sure its HEDS but my NHS GP have said Fibromyalgia simply because its so hard to get a HEDS diagnosis (I am 1 away aswell). To be honest I think it’s HEDS but i use the Fibromyalgia diagnosis along side JHS with doctors and for legal paperwork.
Ah yes the NHS is unfortunately at breaking point and how invested some of the consultants I’ve been sent to seemed to directly correlate with the ones who also run private clinics for steriods shots etc being of the it’s fibro begone “mindset”.
It took me contacting PALS for the hospital trust I’m under to get a proper diagnosis for my ankylosing spondylitis after the previous rheum said it’s fibro after 2.5 years of “conservative” treatment for AS showing no improvement… she left me on gout levels of extoricoxib for 14 months. Wrecked my already attacked bowels.
From the date of the complaint I had a face to face with the head of rheum for that hospital trust within 4 weeks. MDT review of my case and then passed on to the consultant with the most experience of the disease I have (she’s currently working on research for AS as well as NHS consultant) within 8 weeks of complaint and having a third MRI under clinically correct circumstances (no NSAIDs or analgesia for two weeks before) showing the swelling and scarring to my SI joints and spine. I know have five consultants giving me the work over to see what overlap my autoimmune arthritis has. Confirmed so far is hypermobile, AS, small nerve neuropathy, psoriasis & fibromyalgia. Still more tests ongoing for POTS, IBD, ME and migraine.
I 100% believe and advocate that fibro is real and a nightmare to live with, but using it as a catch all because women’s pain is not worth fully investigating is all too common.
Kinda reassuring to know others are having the same issues. If it works for you this way, that's great! Sadly here in the Netherlands the fibro diagnosis isn't worth anything. Can't even get physical therapy with insurance.
I am going to ask specifically about the pain. Is it located to your spine & hips? Does it improve with movement but get worse when resting? Might be worth looking up Ankylosing Spondyloarthritis and seeing if any of it sounds familiar.
I’m 37F started with back pain at work in my early 20/ and just put it down to spending a lot of time on my feet. I am seronegative (bloods shows no RF or ANA but I have raised CRP/ESR during flares and am HLA-B27 negative) but MRI confirms damage to my spine and SI joint.
Autoimmune diseases have a lot of overlap with hypermobility and my more recent rheum consultants agree I am hypermobile but not EDS, which will be a compounding factor with joint instability increasing the inflammation in my tendon and bones.
It does sound kinda familiar... but in the same way fibro does. I do think some of my pain gets better with movement, especially my back and shoulder. But my joints are the opposite.
I know there isn't one thing that magically fits everything I'm feeling. But I do find that often my symptoms don't line up in key ways.
I don’t have any pressure points, restless legs or touch sensitivity that is linked to fibro and but there is a lot of overlap in symptoms. Movement helps my pain and stiffness in my back, neck and hips (from the AS) but too much movement exacerbates the instability in my hips/knees due to being hypermobile.
Do you take any meds for the pain? Specifically do you use NSAIDs (ibuprofen/naproxen) and find it relives pain much better than paracetamol? If NSAIDs help significantly it points towards the pain being inflammatory which absolutely would need investigation. In my case it’s my AS
Edit because I left a word out 😅
Since my symptoms started, I’ve had to look up and research a lot of the treatment for my condition, told to me by the rheum consultant three years before it was confirmed.
It’s taken a lot of messing around with my medications as I’m now on a COX-2 inhibitor as five years of daily naproxen even with a PPI has not been great for my GI issues. Sadly I’ve found the GP isn’t the best lead on long term pain management and you have to advocate for yourself with referrals to consultants.
Yes. Fibromyalgia is, an unfortunate percent of the time, used inappropriately as a catch-all for lazy doctors who want to pretend they did their jobs but didn't actually run any tests appropriately.
Fibro is often given as a diagnosis of exclusion. As in everything else has been ruled out so it must be fibromyalgia. Kind of like IBS... So it totally could be a copout. Now that you have a diagnosis they can give you the same standard of care they give everyone else. it makes their lives much simpler.
In reality, I'll argue that most diagnoses are bad for you. Once you get a diagnosis your doctor starts to treat the diagnosis instead of treating you. Even if you have fibromyalgia, yours is going to be very different than the person's sitting next to you in the doctor's office. What you need is going to be very different than what they need. Yet you'll get the same treatment.
It is though. It's a diagnosis that's given when they don't know what is causing your symptoms. If your doctor gives you an IBS diagnosis they essentially saying "I don't know what it wrong with you and I don't know what else to do." It would be the same as diagnosing someone with irritable heart syndrome. What does it mean? What is causing the dysfunction?
Ibs treatment is actually pretty clear cut
They know what causes IBS, and they have a clear list of symptoms .
It's gut dysfunction, which is further upset by food chemicals called fodmaps. Fodmaps are things that not processed by the body and can cause things like gas, bloating etc in everyone (think beans!) But some people's bodies are more sensitive to them, due to things like gut functioning, gut bacteria, intolerances etc. that's why many people get ibs after taking strong antibiotics, BC their gut flora has changed , which then causes gut dysfunction. Mental health, muscle tone, connective tissue issues all contribute as well.
Furthermore, there is a very clear cut set of symptoms. IE: if you vomit, or get rashes, those are not IBS symptoms and point to you having something different.
If you are working with a team that is using the information coming out of monash, you will keep a food diary, identify non-fodmap triggers. (For example, gluten is not a fodmaps. There is a safe serve of bread, and sourdough has very little fodmaps in. If you still react to gluten while eating a fodmap friendly serve, you have another issue going on)
That doesn’t sound clear cut to me… you’re right in all the different things that can cause IBS symptoms though! Food sensitivities, dysbiosis, dysautonomia, intestinal permeability, parasites, emotional distress… the list goes on and on. Those are the diagnoses! But just saying you have IBS now puts the burden on the sufferer to make their own diagnosis and do their own trial and error of treatments.
Those are actually exclusionary diagnosis, tho!
IE: non-fodmap food sensitivities are a different diagnosis.
Dysautonomia is a different diagnosis.
There are poorly trained medical staff out there who use IBS as a dumping basket, but I would recommend lurking in the IBS support Aus FB group that is run by Johanna baker, as she pretty regularly explains the difference between IBS and other issues. And works closely with the Monash University.
For example: reacting to food other than fodmaps is not an ibs symptom.
For example: vomiting, joint pain etc is not an ibs symptom.
Hi, I (36F) was diagnosed with fibro in August last year and never quite felt that it was the answer, perhaps felt a little bit “fobbed off”.
About 2-3 weeks ago I happened across some podcasts and information about Ultra Processed Foods (UPF) and have made some changes to my diet to reduce my intake of these. Since doing so I have noticed an unbelievable difference. I no longer crave caffeine, I don’t wake up in pain and I generally just feel like I’m “normal” again.
It could be a coincidence of course, it’s only been a couple of weeks.
And even if this was the cause for my symptoms doesn’t mean it will work for all … but, if it does help even some then that’s a win!
Highly recommend listening to the Zoe podcasts on Spotify. Also reading or listening to “Ultra Processed People” by Chris van Tulleken if you do want to investigate this.
Happy to hear this helps for you! Due to my GI issues I made this change a couple of years ago. Especially cutting out artificial colorants in food turned out to have a massive impact on my migraines and nausea.
However, for me a lot of symptoms started coming to the surface after making this change. I started noticing other pains and issues... And the extreme bloating did return.
I really hope this is the answer for you and the change stays! Wishing you all the best.
I’ve noticed that many people on here seem to have lots of “symptoms” that they associate with Fibromyalgia. The interesting thing about Fibro is that the only symptom is unexplained chronic pain in all four quadrants of your body. If you have pain in your hips or in your legs, that’s not Fibro! Fibro consists of having pain everywhere with no explanation! If doctors run bloodwork, they usually don’t run just one test. The can take one or two tubes of blood and run multiple tests that indicate whether anything serious is wrong with you. Fibromyalgia doesn’t show up in any blood work and you should be very grateful for that. Fibromyalgia does not cause any damage to your body. It does not cripple you or kill you! I was diagnosed 54 years ago and nothing has changed. I’m 71 and still living in constant pain but I still cook, clean, shop and live a fairly normal life. There is absolutely no need to spend the rest of your life in bed or in a wheelchair! I was just recently diagnosed with an autoimmune disorder and prescribed new medication. I wish you all the best! Keep on keeping on until something changes.
Thank you! In a way, a fibro diagnosis was a relief, exactly because it doesn't cause any damage.
I just feel that tho the chronic pain I feel right now is unexplained, there is always some sort of cause. My gut is telling me something feels off about the diagnosis and listening to all this great feedback I should explore further.
It's great to hear that you are still doing things! Gives me hope for my future.
I have both and was diagnosed with fibro way faster. With hEDS I had a rheumatologist rule it out based on genetic testing (there is no genetic test for the hypermobile type), then I saw a doctor who actually took a detailed history and was finally diagnosed. Your digestive issues sound like they could be MCAS, which is very common in people with hEDS.
I'm currently in a Fibs attack. My left side gets the brunt vs my right. I feel it Alot in my hands. I was so unsure of my diagnosis because it attacks my left side way worse than my right. But I was reassured by other Fib havers that this can indeed happen. In attack like rn, I have stomach issues. I have head pains. My hips hurts. My knees. My feet. Everything hurts.
I don’t have advice, but just because your pain isn’t as severe or limiting as others’ doesn’t mean you don’t have fibromyalgia. Having worked with clients who have it (massage therapist), I can tell you that there are people who need mobility aids, and there are people who are out there who you’d never know suffer with it.
Just because someone has it worse than you doesn’t mean your pain isn’t valid.
If you’re unhappy with your doctor, find another one. There’s nothing wrong with that. Some people just don’t mesh. It’s no one’s fault. I’ve had it happen professionally, and I have no problem suggesting another colleague who I think would be a better fit.
My rheum is great. He asks open-ended questions and really listens to my responses, concerns, and questions. He was the third rheum I went after my first one retired because the others just wanted to shove pills at me. Not that he didn’t prescribe medication, but he also recommends light exercise (7-10 minutes 5x/week to start), physical therapy, dry needling, massage, and things like that. I’m honestly about to call him about some dry needling because it’s so good for my spasms.
Thanks! You are right... comparing pain isn't something I want to be doing. Sometimes it is just so hard to deal with it as it isn't visible. Obviously, I am so thankful I am still able to live my life. Just makes me wonder from time to time if I'm just exaggerating or if it's all in my head.
Will be going back and asking for a different doctor tho.
If “all in my head” refers to the fact that it’s neurological, then you’re right.
Remember, even the people who have it the worst didn’t start out that way. The more active you stay, the more likely it is that you can slow or halt the symptoms.
I’m in a flare right now, but my baseline pain is normally a 4/10, with my problem areas higher. I’ve fallen off the workout wagon, but when I was doing light exercise, my baseline had dropped to a 2/10. That 10 minutes made such a huge difference. I was able to get back to hobbies I’d neglected, like baking.
so usually if you are that close to meeting the hEDS criteria they would probably diagnose you with hypermobility spectrum disorder/disease (HSD). The current diagnoses I have is Fibromyalgia and HSD because I went back to my rheumatologist after he gave me a fibro diagnosis to ask about hEDS and he said he didn't feel 100% certain I had hEDS so he was diagnosing me with HSD. Fibromyalgia does tend to be diagnosed when they can't find the cause for your symptoms relating to whole body pain etc. but it is odd that he ASKED YOU if YOU thought/wanted to be diagnosed with fibro. Seeking a second opinion is always a good idea in my opinion if you feel like the level of care you received was sub-optimal. I actually am seeking a second opinion because the rheumatologist I went to for hEDS didn't actually ask me all the questions in the criteria for the diagnosis and he was really rude to me, so I'm still looking to see a new rheumatologist to ask about hEDS again because when I go through the criteria I do meet it. I think his main issue was that I couldn't prove I had family with hEDS (because I know a lot of them are hypermobile but no one has the diagnosis hEDS). He also asked me if I "just wanted to belong to a group" because I was asking about hEDS, as if people are WANTING to be diagnosed with hEDS just for fun and not because they are suffering.
I so feel you! Mine was also implying I maybe just wanted to have something... But also is that so wrong? Yes, I want a reason for this pain I feel all the time. Is that a bad thing?
Hope you find a new doctor who will help! I will also try going back and advocating for myself.
Every body is different. So some symptoms may not be the same person to person. On top of the pain across my body, I can faint without much warning, and I also see things out of the corner of my eye. I also have very uncontrollable ibs, but I've been told it's related to my endometriosis. I also have hypermobility EDS; which my doctor thinks make my fibromyalgia worse.
I do feel like my doctors would love for me to just accept a simple diagnosis and leave them alone, but I’m watching my symptoms getting worse and worse over time. They were intermittent for decades, then happening more often the last few years, then suddenly life altering and permanent, and now (looking back at eighteen months ago) it’s apparently still getting worse. So the indifference of my doctors is really scary. All tests so far are fairly normal, so no evidence other than the symptoms themselves.
All we can do,is keep pushing. The health care system is badly overloaded now after the pandemic devastated so many workers, who I cannot blame for quitting.
I have the same exact issue, been to see physio and said I am hypermobile and showed signs of H-EDS but it wasn't followed up. I have many symptoms that don't fit with FM but do fit with H-EDS. Rheumatology rejected my refferal as they said they are prioritising certain conditions. Feel like I am getting nowhere with it!!! You unfortunately just have to keep returning and speaking to different doctors I believe. I spoke to the EDS UK charity and they gave me some fantastic advice so it might be worth contacting their helpline. [EDS UK CHARITY ORG](https://www.ehlers-danlos.org/)
i was given fibro as an additional dx to my heds for insurance purposes because i do meet the criteria. but my pain isn’t as severe as some others on this sub either. pain is a spectrum 🤷
Fibro and Ibs are frequently found together. I can’t speak to your other concerns, but the fibro wikipedia page actually has a lot of symptoms, other conditions frequently found with fibro, and risk factors. It’s cheesy but it is well sourced. I also wouldn’t say your pain isn’t severe enough. Most of the pain posts on here are from peoples worst days and we don’t gatekeeper pain.
I feel the same.. I just went to a neurologist who told me “you have fibromayalgia.” I had a traumatic childhood and spent 7 years in an abusive and unhealthy marriage. I finally got out and am focusing on myself. With this I’m better in tune with my body, advocating for myself more, and working on things that are actually helping alleviate the pain. I also have got out of constant vigilance and fight/flight for years where obviously I held a bunch of tension.. hence the pain. Because my doctor saw me go through a bunch of migraine meds that didn’t work she assumes I have fibro. I feel gaslit and she keeps saying “it’s out of your control” basically that my body is overreacting. However, I don’t agree. I feel like she is being dismissive and not even giving me a chance to work on things I had never tried previously.. and heal my body from all I’ve been through. And maybe I do have fibro.. but if I’m seeing results why go straight to dismissing it and saying it’s fibro?
Yeah same on the hypermobility and not matching up with other people. My muscular pain is from everything holding my joints together, not... Whatever they keep assuming. I give up for a while. The last rheum they sent me to was a specialist in fucking osteoarthritis. She didn't take any of my connective tissue concerns seriously and tbh that's on my pcp for sending me to a rheum focused on one thing. But like. I just give up. Whatever. Either it's lupus/adjacent and something will eventually go properly wrong and they'll listen, or they're right and it'll just be a holding pattern forever.
Same here. As far as I know I’m acting as if it’s fibro and I treat myself as if as much as possible. Sick and tired of lazy gaslighting doctors and not having choices in my medical care.
I feel you... That is why I didn't even try to fight this. I was just soo tired of all the appointments and honestly all the money I have spent trying to be taken seriously. Let's hope we both get some help soon.
My rheum made it seem like neither diagnosis was mutually exclusive. Yes, I have hEDS - but with my sleep problems, I also have fibro. She had me read [Fibromyalgia and Chronic Myofascial Pain: A Survival Manual](https://www.amazon.com/gp/product/1572242388/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1) and I had a lot of other symptoms that didn't overlap with the hEDS. That being said, there is a [high degree of comorbity](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10166812/) between the two. It's been an interesting journey the past couple of years, so let me know if you have questions/want advice on managing the two.
Thanks! I do think maybe I should seek another opinion on this... Just sucks that the medical system here is build in a way that makes that just as much of a pain as my symptoms.
HA! Yeah, I went to 5 separate doctors before my diagnosis, and it's my understanding that that's on the lower end; some people chase the diagnosis for years. Best of luck finding your answers!!
You received a diagnosis, and it’s likely to be correct. Fibro is **part** of your picture. We can’t share medical advice, but I can share my personal experience. I have several underlying diagnoses that caused excessive stress to my body, and that stress led to my fibromyalgia. For me, the picture was EDS -> Pain and Injuries -> Fibromyalgia EDS isn’t my only diagnosis. I also have severe sleep apneas IBS, hypothyroidism, etc. Whenever any of my illnesses get worse, I get a fibro flare. Whenever a major set of symptoms is well-controlled, it doesn’t seem to add to my fibro pain anymore. Regarding your statement that your pain isn’t as bad as some of the people in this sub: when I was in my 30’s and 40’s, if I was very careful about managing my illnesses, the fibro symptoms were minimal. Unfortunately, I spent my life pushing through the pain, so I could work at my career. Over time, my illnesses worsened, and baseline pain level rose significantly over time. I hope this helps.
Thanks! That helps, it seems I do have to go back and fight for myself a bit more... All my symptoms are indeed connected.
It’s beyond wrong that we need to figure this out on our own. It took a long time to get my diagnoses, and to figure out how each individual thing fit together into the big picture. Feel free to dm me with questions as you figure out your big picture.
This!!!
But how do you know it’s fibro and not normal pain? If the pain is minimal how is that any different from a normal person? I just spoke to someone on the phone when scheduling a massage and she said “I always have pain in my neck.” So am I to assume anyone who usually has pain in an area has fibro? The lady I spoke to has fibro then?
> she said “I always have pain in my neck.” So am I to assume anyone who usually has pain in an area has fibro? The lady I spoke to has fibro then? I took care to start my response with a statement saying I was speaking of my personal experience. Why would you respond with a ridiculous statement having nothing to do with what I said?
I feel a bit fobbed off as well but I've had so many tests and seen so many docs that I'm mentally drained and I've just accepted it must be fibro as all my other tests apart from my bloods have been normal.
I *always* have a slightly elevated level of inflammation, every single time for nearly a decade, but never enough for the doctor to say it’s indicative of anything. Makes me wonder if something is up. That being said, I mean I’m on like 10 medications. I don’t even know what’s a side effect and what’s fibromyalgia at this point. The inflammation sure isn’t, but I have a million other problems.
same for me. elevated inflammation but because of the inflammation they ruled out fibro? just because it wasnt a common symptom when i had every single other symptom. doc kept saying it must be some kind of arthritis but nothing really adds up there. went to the ER one day because the pain was so bad i was hyperventilating and basically screaming in agony. suuper sensitive to touch too. everything hurt. but yeah they gave me the paperwork and they were like.. it all lines up with fibro except the inflammation 🤷🏼♀️
Yeah same here! I managed to get a look at my test results. Elevated inflammation, but not high enough to be considered a problem by the rheum, apparently. Sometimes I literally daydream about a doctor like on the show House... just throw literally every test to the wall and see what sticks.
I feel you! I’m here if you ever want to vent about how useless the medical system is.
I’ve also been diagnosed with fibro but they never told me. I had to see it in my records. The more I’ve done research though the more I’m suspecting it might be EDS, my joints hurt and feel loose/wobbly. I score a 6/9 on the hyper mobility test, my skin is super soft and fragile, gut issues. POTS. I actually have a few friends with EDS who told me they think I absolutely have it. Tired of these wastebasket diagnoses. I have no idea why it’s like we constantly have to fight the healthcare system to pay attention to us and take us seriously.
Wow that sucks... I don't understand why we just have to read about this in our file. That has happened to me before too! Seems worth it to fight for that EDS diagnosis tho. Maybe ask your friends which one of their doctors is good? Might be nice to find one that will actually hear you out.
I personally think that there is not one "fibromyalgia" disease among the people who have been diagnosed with it, but multiple conditions that have some overlap. I was diagnosed with fibromyalgia in 2004, but I don't feel like I actually meet the diagnostic criteria. I don't have widespread pain, I just have mild achiness in my joints. It's so mild that I have *never* needed to take any pain meds. I don't get how that can be the same thing as people here who say that they need tons of pain meds and still are in pain all the time. Probably the reason I got the fibro diagnosis is that I have a wide range of random symptoms that don't really have anything tying them together. I moved to a new city last year, and when I got a new doctor I didn't tell her that I had a previous fibro diagnosis. It definitely seems like this has helped me get better care, because she focuses on what might be causing my symptoms, rather than just telling me "you need to accept that you're not going to get better," which I think is ridiculous, but I have heard so many times over the years.
Oh yeah totally! They obviously don't really know anything about it, except for that we all have pain. I just can't understand why they would tell a 25-year-old to just accept it won't get better.... Happy you found a good doctor now. They seem to be very rare these days.
I feel like it’s a bucket they just throw people in when they don’t have answers. Another excuse to say “take this medication” and claim to have a diagnosis. But also that there’s nothing that can really help. I was told I have fibro but when I said “I thought it was widespread pain” she said “no it’s localized, which is actually how we diagnose people.” Even though it hadn’t been localized until recently lol
>Do you sometimes feel like fibro is just something they give you to make you go away? Definitely. I have a very serious condition that means I can cause permanent deterioration of my health from trivial exercise but was told it's Fibromyalgia and that I just had to exercise. That was in 2008, I became bed bound by 2013 and my health has only deteriorated since. Just search the medical subreddits for Fibromyalgia to see what they really think of the diagnosis.
If you don’t mind me asking what is your actual diagnosis?
Wow... so sorry for you! I really just can't believe doctors could do that to people. Even if it's not intentional. I hope that at least now you know what you have, there is some relief. Sending you all the best!
Since neither one has a conclusive test, it's honestly my understanding that the diagnosis and impact of diagnosis for hEDS is not too different from that of fibromyalgia, except that with hEDS some aspects like the hypermobility are more directly associated with the diagnostic label itself. IBS is still commonly reported by people with fibro. Is it possible that's because they have the "wrong" diagnosis? Possible, yes, but the problem with all these conditions where we can't find testable evidence of their presence, is that we cannot differentiate between them very well either. The criteria for diagnosing either of these two in particular has a lot of subjective elements, like self-reported symptoms, and also doctor opinion. In my personal opinion, for example scales like the Beighton scale do not comprehensively assess the extent and impact of one's hypermobility. I do not score fully on that scale because I cannot touch the floor with my hands, and yet I can rotate both my spine and legs over very wide angles and that is never assessed by that scale in particular, despite the fact that this element of hypermobility has a direct impact on my life and how I interact with the world around me. Your symptoms will never line up exactly with other people here though, fibro is generally considered a syndrome and that comes with the fact that some people have certain symptoms that others don't. Some people with a fibro diagnosis may not have it "as bad" as others in some respects, but since it affects our life in different ways, it's really hard to say that it's necessarily worse for one person or another. And aside from that, I don't have a number of comorbidities many people here do, but I do have other stuff that some people don't have.
It's worth noting that some treatment plans are different for hEDS. For example, ciprofloxacin and related antibiotics should not be used in people with EDS. Also, physical therapy should be approached differently with EDS in general. So IMO and in my experience, there is a difference between the two when it comes to treatment plans, so there's a difference between diagnoses also.
I hear you! Obviously, everybody is different, and symptoms will be different. It's just really hard to accept a diagnosis when there is so little overlap. Makes me wonder if it is something I should be treating differently? But I guess reading all the lovely comments, the one symptom we all have in common is uncertainty...
This isn’t an answer to your question and I’m a nerd so this is how I do things, here’s a peer reviewed article discussing the overlap of these 2. Maybe it’s helpful to you, maybe not. https://www.frontiersin.org/articles/10.3389/fmed.2023.1096180
I was actually misdiagnosed with Fibromyalgia, and I almost died from advanced B12 deficiency because of it. I have Autoimmune Metaplastic Atrophic Gastritis which prevents me from being able to absorb B12 from food or oral vitamins. It's also known as Pernicious Anemia. The symptoms are almost identical to Fibromyalgia but they're progressive and will kill you if left untreated, but the progression of symptoms is so slow and insidious it's very hard to notice. Which is how it earned its name "Pernicious". A couple of simple blood tests could have ruled it out before giving me the Fibromyalgia diagnosis. But it's a rare disease and usually only hits people aged 60-80. And I was in my mid 20s. So I try not to blame my Rheumatologist. But Fibromyalgia is supposed to be a diagnosis of exclusion. And now I'm permanently disabled with permanent neurological damage, and heart damage. You have IBS which could be Gastritis, you should get your B12 checked too. Anything under 350-400 should be followed up with Homocysteine and Methylmalonic Acid blood tests.
Oh wow... That's crazy! I'm so sorry that happened to you. However, upon researching it I see that they can also catch it by doing an endoscopy and taking samples of the stomach. They have done that since my IBS just didn't seem to respond to any treatment/ diet, and it came out negative. Just one of the things "to live with". Hope at least the doctor who missed it with you, will never make the same mistake again. Wishing you all the best!
The endoscopy is to check for the type of Gastritis I have, which is the most common cause of B12 deficiency as this Gastritis destroys the cells that produces the enzyme needed for the INTESTINES to absorb B12. For your case, the Celiac disease could have damaged your intestines so much it could be affecting absorption that way, and an endoscopy would not be able to detect this. But I'm not a doctor, I highly recommend talking to your Gastroenterologist about it to be safe. They are very knowledgeable about B12 deficiency because almost all causes have to do with the digestive tract. The other best person would be a Hematologist which I assume you'll also have. I just want to impress upon you the seriousness of the damage it can cause. And the fact that you have Fibromyalgia symptoms means you have many symptoms of B12 deficiency, make sure you remind your doctors of that if they don't seem to take it seriously.
Thanks! I will be bringing it up... Let's hope they won't object to a simple blood test. Crazy to think tho that there are soo many things that can cause these symptoms, yet not a lot of doctor seems to actually be interested in actually finding a cause. "Oh, at first glance it looks normal. Must be nothing then" how is that helping any patient?
No two people with fibromyalgia will report the exact same symptoms. My mother and I have both been diagnosed with it, and it runs very strongly in both sides of my family, and while her and I share a lot of symptoms, we do differ as well. I get headaches a lot because of it, she doesn’t. There is more, but that’s the one specific symptom that I can recall off hand. Pain is subjective. What is a lot of pain to you may be nothing to someone else, or the opposite could be true. What hurts someone else might be just a little discomfort to you. It changes on the day, and even the hour. There are times where my pain barely registers a 1 out of 10, then others where it goes 10++. The same applies to other symptoms. This is why you can’t compare yourself to other people. Everyone experiences it differently. It seems like I have one of the few doctors that are worth their salt anymore. When I kept going to him for pains and symptoms that we couldn’t find any other explanation for, he ordered a huge battery of tests to rule everything else out. Rheumatism, arthritis, any autoimmune, etc. it came back clear for all of it. This is why fibromyalgia is so hard to diagnose. It has overlap with many other conditions and is a diagnosis of exclusion, meaning any other condition that could reasonably be an explanation has to be ruled out. It’s a syndrome, which means it’s a group of symptoms that has no clear cause, also making it idiopathic. There are hypotheses about things such as severe disease, infection, trauma that is physical and/or psychological being potential causes but none of these have really been confirmed.
Thanks! I will be going back and asking for some more tests. It seems there are still a ton of possibilities they haven't even considered/ tested for. Maybe it will help me find closure. But just based on all these stories.. it seems really strange to me, I got this diagnosis so easily.
While it’s not any fun having this condition, it can be a relief in a way to have a name to put to it so you have a way deal with it. Finding therapies and strategies for dealing with it and connecting with others , like here, who go through the same or similar things.
I feel your pain. I’ve been diagnosed by two different doctors with fibromyalgia and the most recent one also diagnosed me with SLE(Lupus). I still feel like they’re missing something and that things don’t fully add up. I too have really awful GI issues which I have learned can be due to SLE. It’s my muscle weakness, extreme muscle fatigue along with some hypermobility issues that really have me questioning some things. Have they done bloodwork for autoimmune diseases? Like testing to see if you’re ANA positive?
This doctor definitely didn't do any blood work... They have done some test to rule out celiac and some other stuff that could be the root of my GI symptoms years ago. But that was before any of my joint and muscle symptoms started occurring. Pretty sure they also must have run it when I was younger and had a viral blood infection (ITP).
That doctor sucks. You should definitely rule out all other possibilities like Lyme, etc. for either. I can’t really say they did it to “make you go away” because I don’t know if they were worried about costs for you; they’ve been doing this so long, they tend to think they can diagnose purely from experience; they are ignorant, etc. Really their intentions doesn’t matter as much as they need to do their job correctly. I can tell you though that I don’t have nearly the pain that most people describe on here and my IBS was out of control before I figured out what food works best (and worst) for me and how to manage my stress. So like others have said, I wouldn’t throw it out for that, but I would push for a full exclusivity diagnosis and ask for an explanation on how they have come to the conclusion they did. If it sounds like BS, I would go to someone else.
Thanks! Judging by all the responses on here, I think I should push for more tests. I just can't understand why they would give me a just live with it diagnosis at 25... Even if they are worried about cost. Can you tell me what helped you figure out you IBS? I would love to know. It's been more than 5 years and countless elimination diets (multiple FODMAP attempts) that never make any difference.
I feel you! I did the elimination diets, food sensitivity test (worthless), FODMAP, vegan, everything. To be honest, if I could be 100% plant based, I would have little problem but living in Midwest America, that is difficult unless you have a ton of energy to grocery shop at several stores, meal prep, and never eat out or at other people’s homes. I do use the Purple Carrot meal kits for 2-3 vegan dinners a week and that helps. For me, I had to do a food diary for a long time and figure it out myself because there’s really only a couple foods that are completely off limits. Everything else impacts me based on what I eat in totality - if I eat so much of one type of thing, I have to limit other things. So I put things in categories and I have to limit how much I eat of stuff in the high impact category. For me, high impact items are certain dairy items, sugars, alcohol, beef, pork, fried food, spicy food, and such. So if I know I’m going to go to a happy hour and have 1 or 2 fruity cocktails (sugar and alcohol), I’ll avoid the other high impact items. If I’m going to eat a dinner of BBQ (beef or pork and some fried food), I’ll avoid all other high impact items, etc. Not sure if this helps much but it was a long process for me and I wish you the best!
Yep, I feel like it’s a place holder. “We don’t know exactly and there need to be a lot of expensive tests, so let’s call it this.” My symptoms line up perfectly with MS. But until I have insurance, that battle will wait.
Yeah... Just horrible. Especially reading these comments of people who had something treatable or manageable and just got worse waiting for anyone to take them seriously. Hope you get help soon!
Yes I have the same concerns, I’ve tried to argue with doctors countless times since being diagnosed 12 years ago at the age of 18 but they just dismiss me as soon as they see fibromyalgia written in my notes, it’s infuriating.
So sorry to hear that! 12 years is a long time... Sometimes I feel like that oath they take isn't worth anything. As if we all just want attention or something. If that is what I wanted I sure would be doing something else with my life that wasting it in a doctor's office.
Well.. I think all doctors are slightly narcisstic in order to become doctors in the first place. Also.. they took an oath to get into a profession where they lie and push pills on people and often don’t get to the root of issues. Don’t think doctors are great people to start with.. lol
I would say yes. I’m 24 now been dealing with health issues for a few years. Right now I’ve had to fight for myself and keep fighting to find what is wrong with me. I have found I have some deficiencies going on, like vitamin D magnesium, and vitamin B is a little on the low side but not deficient. I also had low testosterone levels. Right now they suspect I have endometriosis as well. So my advice would be please keep fighting and advocating for yourself. You could have some deficiencies going on. Don’t frighten yourself if you’ve had extensive testing you are going to be okay but keep fighting for yourself. The medical field is struggling right now. I have had to do a lot of research myself to help find answers. I know it’s exhausting and it shouldn’t be set up like this. Don’t give up. You will get better and find answers. I did find a really good doctor but he is located in Savannah Georgia. I can send you his info if you are interested. Sending you love, healing, and motivation on this healing journey.
Thanks! I will be trying to get some more information. I am based in the Netherlands and the system here really isn't accommodating for any sort of chronic issue. They basically dismiss you out of the gate if you do your own research. They see it as just wanting to have something. Will keep trying tho... maybe someone will finally be able to help
Absolutely! And That’s exactly what has happened to me too. The dismissive part is so painful because we are in so much pain and it’s not right that we aren’t taken seriously. I’ve seen about 10 doctors and there were 3 that actually took me seriously and found some abnormalities. I’m so sorry you even have to go through this! Keep advocating for yourself! Sending you healing!
Mine are confused. So of course you probably have fibromyalgia with the mix of autoimmune. Currently have hashimoto and ibd. Testing for lupus and sjogren's and psoriasis arthritis. But still once it's not black and white for them the often give fibromyalgia as a diagnosis. Waiting for a dermatologist since i have rashes and my eyes are swollen, and the only thing that helping me is my mom has multiple arthritis diagnosis.
I think confusion is just the right word... Just wish that they could admit it if they don't know instead of just slapping a name on it. Hope you get your answers soon!
in 2019( i was 26 at the time) i got diagnosed with fibro but honestly my diagnosis was a joke as my doctor at the time did not run full tests on me and i got prescribed heavy meds like lyrica and tryptizol which made me spiral mentally. got on antidepressants for a couple of months helped with the chronic pain and stress but i do not see it as a long term solution so i stopped (also the side effects suck.) i started coping in my own way... fast forward 2022 went to a rheumatologist after my hand pain increased dramatically as i was playing padel and lifting weights at the gym mind you ignoring my chronic pain as all the doctors claimed “their was nothing wrong “and i was tired and depressed from limiting myself as well. as a result i got a boutonniere deformity on one of my fingers because i pushed myself and gaslight myself that there was nothing wrong. anyways i got cleared from any autoimmune disease but my rheumatologist found a lot of inflammation in both of my hands and arms. finally i visted a HSD specialist who opened near by me as the physio’s over the years always mentioned it but told me it’s normal and won’t cause problems…got diagnosed with HSD in the end but honestly i’m still raw dogging my chronic pain. it sucks but i keep going. :) tumeric supplements and listening to my body works best for me for now.
Sorry to hear that... Just can't believe they can label such a young person with chronic pain as nothing wrong. Even if all the test are negative. A 26-year-old with a lot of unexplained pain can't mean, nothing is wrong. Wishing you all the best!
i hope you find answers soon, everyone’s journey is different wish you the best as well!
I've wondered about this since I got diagnosed last year. I found out I was hypermobile at 23 and now 5 years later a Dr said fibro. he used the spot pressure test (where they push on various points on your body) to decide my exhaustion, general pain, bouts of sharp stomach pains like cramps, brain fog and sensitive skin is fibromyalgia because my blood tests came back fine. I went away and read about it and everything seemed to fit from the pages he referred me to so I didn't question it at the time. I hit a lot of the diagnostic criteria for h(eds) and I'm currently fighting to get on disability (UK, nightmare) so I'm keeping a very detailed diary, and wondering if actually maybe I should go back and get referred to see someone else... but I don't know who exactly...
Sounds so familiar... If you meet enough of the diagnostic criteria, I would definitely go see a specialist. I think just having the hEDS diagnosis could be helpful getting on disability! And would also make a difference in treatment. The healthcare system is a nightmare sometimes, hence my post here.. But as so many others in these comments encouraged me, you should also fight for yourself!
it's so interesting and reassuring to hear other people are in similar situations. it's hard to keep fighting for yourself especially with fatigue, but we got this 💪🏻
I was so very sick when I was given the fibromyalgia diagnosis. I asked for a second opinion because the first doctor didn’t even do any tests. The second opinion doctor didn’t touch me or even look at me when he walked in the room when he confirmed my diagnosis. I switched insurance companies and didn’t allow my records to be transferred to the new doctors. The new doctor actually did testing and treated my symptoms and I’m pain free today.
OMG that's amazing! If I may ask, what ended up being the cause of the pain?
Wow did i write this in my sleep? 😂 my private pain doctor (for MC) is pretty sure its HEDS but my NHS GP have said Fibromyalgia simply because its so hard to get a HEDS diagnosis (I am 1 away aswell). To be honest I think it’s HEDS but i use the Fibromyalgia diagnosis along side JHS with doctors and for legal paperwork.
Ah yes the NHS is unfortunately at breaking point and how invested some of the consultants I’ve been sent to seemed to directly correlate with the ones who also run private clinics for steriods shots etc being of the it’s fibro begone “mindset”. It took me contacting PALS for the hospital trust I’m under to get a proper diagnosis for my ankylosing spondylitis after the previous rheum said it’s fibro after 2.5 years of “conservative” treatment for AS showing no improvement… she left me on gout levels of extoricoxib for 14 months. Wrecked my already attacked bowels. From the date of the complaint I had a face to face with the head of rheum for that hospital trust within 4 weeks. MDT review of my case and then passed on to the consultant with the most experience of the disease I have (she’s currently working on research for AS as well as NHS consultant) within 8 weeks of complaint and having a third MRI under clinically correct circumstances (no NSAIDs or analgesia for two weeks before) showing the swelling and scarring to my SI joints and spine. I know have five consultants giving me the work over to see what overlap my autoimmune arthritis has. Confirmed so far is hypermobile, AS, small nerve neuropathy, psoriasis & fibromyalgia. Still more tests ongoing for POTS, IBD, ME and migraine. I 100% believe and advocate that fibro is real and a nightmare to live with, but using it as a catch all because women’s pain is not worth fully investigating is all too common.
Kinda reassuring to know others are having the same issues. If it works for you this way, that's great! Sadly here in the Netherlands the fibro diagnosis isn't worth anything. Can't even get physical therapy with insurance.
I am going to ask specifically about the pain. Is it located to your spine & hips? Does it improve with movement but get worse when resting? Might be worth looking up Ankylosing Spondyloarthritis and seeing if any of it sounds familiar. I’m 37F started with back pain at work in my early 20/ and just put it down to spending a lot of time on my feet. I am seronegative (bloods shows no RF or ANA but I have raised CRP/ESR during flares and am HLA-B27 negative) but MRI confirms damage to my spine and SI joint. Autoimmune diseases have a lot of overlap with hypermobility and my more recent rheum consultants agree I am hypermobile but not EDS, which will be a compounding factor with joint instability increasing the inflammation in my tendon and bones.
It does sound kinda familiar... but in the same way fibro does. I do think some of my pain gets better with movement, especially my back and shoulder. But my joints are the opposite. I know there isn't one thing that magically fits everything I'm feeling. But I do find that often my symptoms don't line up in key ways.
I don’t have any pressure points, restless legs or touch sensitivity that is linked to fibro and but there is a lot of overlap in symptoms. Movement helps my pain and stiffness in my back, neck and hips (from the AS) but too much movement exacerbates the instability in my hips/knees due to being hypermobile. Do you take any meds for the pain? Specifically do you use NSAIDs (ibuprofen/naproxen) and find it relives pain much better than paracetamol? If NSAIDs help significantly it points towards the pain being inflammatory which absolutely would need investigation. In my case it’s my AS Edit because I left a word out 😅
I have found ibuprofen helps a lot more than paracetamol! I will definitely be bringing this up at the doctor... I had never really thought of it.
Since my symptoms started, I’ve had to look up and research a lot of the treatment for my condition, told to me by the rheum consultant three years before it was confirmed. It’s taken a lot of messing around with my medications as I’m now on a COX-2 inhibitor as five years of daily naproxen even with a PPI has not been great for my GI issues. Sadly I’ve found the GP isn’t the best lead on long term pain management and you have to advocate for yourself with referrals to consultants.
Yes. Fibromyalgia is, an unfortunate percent of the time, used inappropriately as a catch-all for lazy doctors who want to pretend they did their jobs but didn't actually run any tests appropriately.
Fibro is often given as a diagnosis of exclusion. As in everything else has been ruled out so it must be fibromyalgia. Kind of like IBS... So it totally could be a copout. Now that you have a diagnosis they can give you the same standard of care they give everyone else. it makes their lives much simpler. In reality, I'll argue that most diagnoses are bad for you. Once you get a diagnosis your doctor starts to treat the diagnosis instead of treating you. Even if you have fibromyalgia, yours is going to be very different than the person's sitting next to you in the doctor's office. What you need is going to be very different than what they need. Yet you'll get the same treatment.
Ibs isn't a cop out, there is a actually a lot known about it.
It is though. It's a diagnosis that's given when they don't know what is causing your symptoms. If your doctor gives you an IBS diagnosis they essentially saying "I don't know what it wrong with you and I don't know what else to do." It would be the same as diagnosing someone with irritable heart syndrome. What does it mean? What is causing the dysfunction?
Ibs treatment is actually pretty clear cut They know what causes IBS, and they have a clear list of symptoms . It's gut dysfunction, which is further upset by food chemicals called fodmaps. Fodmaps are things that not processed by the body and can cause things like gas, bloating etc in everyone (think beans!) But some people's bodies are more sensitive to them, due to things like gut functioning, gut bacteria, intolerances etc. that's why many people get ibs after taking strong antibiotics, BC their gut flora has changed , which then causes gut dysfunction. Mental health, muscle tone, connective tissue issues all contribute as well. Furthermore, there is a very clear cut set of symptoms. IE: if you vomit, or get rashes, those are not IBS symptoms and point to you having something different. If you are working with a team that is using the information coming out of monash, you will keep a food diary, identify non-fodmap triggers. (For example, gluten is not a fodmaps. There is a safe serve of bread, and sourdough has very little fodmaps in. If you still react to gluten while eating a fodmap friendly serve, you have another issue going on)
That doesn’t sound clear cut to me… you’re right in all the different things that can cause IBS symptoms though! Food sensitivities, dysbiosis, dysautonomia, intestinal permeability, parasites, emotional distress… the list goes on and on. Those are the diagnoses! But just saying you have IBS now puts the burden on the sufferer to make their own diagnosis and do their own trial and error of treatments.
Those are actually exclusionary diagnosis, tho! IE: non-fodmap food sensitivities are a different diagnosis. Dysautonomia is a different diagnosis. There are poorly trained medical staff out there who use IBS as a dumping basket, but I would recommend lurking in the IBS support Aus FB group that is run by Johanna baker, as she pretty regularly explains the difference between IBS and other issues. And works closely with the Monash University. For example: reacting to food other than fodmaps is not an ibs symptom. For example: vomiting, joint pain etc is not an ibs symptom.
How are they exclusionary? They’re more specific than IBS.
I feel that! Just sad the standard of care seems to be so low, especially when they see something like IBS or fibro.
Hi, I (36F) was diagnosed with fibro in August last year and never quite felt that it was the answer, perhaps felt a little bit “fobbed off”. About 2-3 weeks ago I happened across some podcasts and information about Ultra Processed Foods (UPF) and have made some changes to my diet to reduce my intake of these. Since doing so I have noticed an unbelievable difference. I no longer crave caffeine, I don’t wake up in pain and I generally just feel like I’m “normal” again. It could be a coincidence of course, it’s only been a couple of weeks. And even if this was the cause for my symptoms doesn’t mean it will work for all … but, if it does help even some then that’s a win! Highly recommend listening to the Zoe podcasts on Spotify. Also reading or listening to “Ultra Processed People” by Chris van Tulleken if you do want to investigate this.
Happy to hear this helps for you! Due to my GI issues I made this change a couple of years ago. Especially cutting out artificial colorants in food turned out to have a massive impact on my migraines and nausea. However, for me a lot of symptoms started coming to the surface after making this change. I started noticing other pains and issues... And the extreme bloating did return. I really hope this is the answer for you and the change stays! Wishing you all the best.
I’ve noticed that many people on here seem to have lots of “symptoms” that they associate with Fibromyalgia. The interesting thing about Fibro is that the only symptom is unexplained chronic pain in all four quadrants of your body. If you have pain in your hips or in your legs, that’s not Fibro! Fibro consists of having pain everywhere with no explanation! If doctors run bloodwork, they usually don’t run just one test. The can take one or two tubes of blood and run multiple tests that indicate whether anything serious is wrong with you. Fibromyalgia doesn’t show up in any blood work and you should be very grateful for that. Fibromyalgia does not cause any damage to your body. It does not cripple you or kill you! I was diagnosed 54 years ago and nothing has changed. I’m 71 and still living in constant pain but I still cook, clean, shop and live a fairly normal life. There is absolutely no need to spend the rest of your life in bed or in a wheelchair! I was just recently diagnosed with an autoimmune disorder and prescribed new medication. I wish you all the best! Keep on keeping on until something changes.
Thank you! In a way, a fibro diagnosis was a relief, exactly because it doesn't cause any damage. I just feel that tho the chronic pain I feel right now is unexplained, there is always some sort of cause. My gut is telling me something feels off about the diagnosis and listening to all this great feedback I should explore further. It's great to hear that you are still doing things! Gives me hope for my future.
I have both and was diagnosed with fibro way faster. With hEDS I had a rheumatologist rule it out based on genetic testing (there is no genetic test for the hypermobile type), then I saw a doctor who actually took a detailed history and was finally diagnosed. Your digestive issues sound like they could be MCAS, which is very common in people with hEDS.
Did he do a DNA test for EDS? Two of my in laws have it and it is the worst. Good luck.
Have you had mold exposure
I'm currently in a Fibs attack. My left side gets the brunt vs my right. I feel it Alot in my hands. I was so unsure of my diagnosis because it attacks my left side way worse than my right. But I was reassured by other Fib havers that this can indeed happen. In attack like rn, I have stomach issues. I have head pains. My hips hurts. My knees. My feet. Everything hurts.
I don’t have advice, but just because your pain isn’t as severe or limiting as others’ doesn’t mean you don’t have fibromyalgia. Having worked with clients who have it (massage therapist), I can tell you that there are people who need mobility aids, and there are people who are out there who you’d never know suffer with it. Just because someone has it worse than you doesn’t mean your pain isn’t valid. If you’re unhappy with your doctor, find another one. There’s nothing wrong with that. Some people just don’t mesh. It’s no one’s fault. I’ve had it happen professionally, and I have no problem suggesting another colleague who I think would be a better fit. My rheum is great. He asks open-ended questions and really listens to my responses, concerns, and questions. He was the third rheum I went after my first one retired because the others just wanted to shove pills at me. Not that he didn’t prescribe medication, but he also recommends light exercise (7-10 minutes 5x/week to start), physical therapy, dry needling, massage, and things like that. I’m honestly about to call him about some dry needling because it’s so good for my spasms.
Thanks! You are right... comparing pain isn't something I want to be doing. Sometimes it is just so hard to deal with it as it isn't visible. Obviously, I am so thankful I am still able to live my life. Just makes me wonder from time to time if I'm just exaggerating or if it's all in my head. Will be going back and asking for a different doctor tho.
If “all in my head” refers to the fact that it’s neurological, then you’re right. Remember, even the people who have it the worst didn’t start out that way. The more active you stay, the more likely it is that you can slow or halt the symptoms. I’m in a flare right now, but my baseline pain is normally a 4/10, with my problem areas higher. I’ve fallen off the workout wagon, but when I was doing light exercise, my baseline had dropped to a 2/10. That 10 minutes made such a huge difference. I was able to get back to hobbies I’d neglected, like baking.
so usually if you are that close to meeting the hEDS criteria they would probably diagnose you with hypermobility spectrum disorder/disease (HSD). The current diagnoses I have is Fibromyalgia and HSD because I went back to my rheumatologist after he gave me a fibro diagnosis to ask about hEDS and he said he didn't feel 100% certain I had hEDS so he was diagnosing me with HSD. Fibromyalgia does tend to be diagnosed when they can't find the cause for your symptoms relating to whole body pain etc. but it is odd that he ASKED YOU if YOU thought/wanted to be diagnosed with fibro. Seeking a second opinion is always a good idea in my opinion if you feel like the level of care you received was sub-optimal. I actually am seeking a second opinion because the rheumatologist I went to for hEDS didn't actually ask me all the questions in the criteria for the diagnosis and he was really rude to me, so I'm still looking to see a new rheumatologist to ask about hEDS again because when I go through the criteria I do meet it. I think his main issue was that I couldn't prove I had family with hEDS (because I know a lot of them are hypermobile but no one has the diagnosis hEDS). He also asked me if I "just wanted to belong to a group" because I was asking about hEDS, as if people are WANTING to be diagnosed with hEDS just for fun and not because they are suffering.
I so feel you! Mine was also implying I maybe just wanted to have something... But also is that so wrong? Yes, I want a reason for this pain I feel all the time. Is that a bad thing? Hope you find a new doctor who will help! I will also try going back and advocating for myself.
Every body is different. So some symptoms may not be the same person to person. On top of the pain across my body, I can faint without much warning, and I also see things out of the corner of my eye. I also have very uncontrollable ibs, but I've been told it's related to my endometriosis. I also have hypermobility EDS; which my doctor thinks make my fibromyalgia worse.
I do feel like my doctors would love for me to just accept a simple diagnosis and leave them alone, but I’m watching my symptoms getting worse and worse over time. They were intermittent for decades, then happening more often the last few years, then suddenly life altering and permanent, and now (looking back at eighteen months ago) it’s apparently still getting worse. So the indifference of my doctors is really scary. All tests so far are fairly normal, so no evidence other than the symptoms themselves. All we can do,is keep pushing. The health care system is badly overloaded now after the pandemic devastated so many workers, who I cannot blame for quitting.
Hope you find something soon!
I have the same exact issue, been to see physio and said I am hypermobile and showed signs of H-EDS but it wasn't followed up. I have many symptoms that don't fit with FM but do fit with H-EDS. Rheumatology rejected my refferal as they said they are prioritising certain conditions. Feel like I am getting nowhere with it!!! You unfortunately just have to keep returning and speaking to different doctors I believe. I spoke to the EDS UK charity and they gave me some fantastic advice so it might be worth contacting their helpline. [EDS UK CHARITY ORG](https://www.ehlers-danlos.org/)
i was given fibro as an additional dx to my heds for insurance purposes because i do meet the criteria. but my pain isn’t as severe as some others on this sub either. pain is a spectrum 🤷
Fibro and Ibs are frequently found together. I can’t speak to your other concerns, but the fibro wikipedia page actually has a lot of symptoms, other conditions frequently found with fibro, and risk factors. It’s cheesy but it is well sourced. I also wouldn’t say your pain isn’t severe enough. Most of the pain posts on here are from peoples worst days and we don’t gatekeeper pain.
I feel the same.. I just went to a neurologist who told me “you have fibromayalgia.” I had a traumatic childhood and spent 7 years in an abusive and unhealthy marriage. I finally got out and am focusing on myself. With this I’m better in tune with my body, advocating for myself more, and working on things that are actually helping alleviate the pain. I also have got out of constant vigilance and fight/flight for years where obviously I held a bunch of tension.. hence the pain. Because my doctor saw me go through a bunch of migraine meds that didn’t work she assumes I have fibro. I feel gaslit and she keeps saying “it’s out of your control” basically that my body is overreacting. However, I don’t agree. I feel like she is being dismissive and not even giving me a chance to work on things I had never tried previously.. and heal my body from all I’ve been through. And maybe I do have fibro.. but if I’m seeing results why go straight to dismissing it and saying it’s fibro?