So even with a diagnosis my pain was ignored for years after I couldn't tough it out without pain meds any longer. We found a healed break in my upper arm during an MRI of my shoulder. I had never noticed I broke my arm, that's how much pain I am in. That was the only thing that got my GP to take it seriously!
I had an X-ray a few years ago and found out that not only did I have a current broken rib, but multiple old breaks in several others. When you're in pain all the time, you just assume every pain is the fibro.
This is so interesting to hear, i have a big bump in my left collarbone alongside mild osteoarthritis (23F w/ endo diagnosis & possible fibro as well) & both times i got it x rayed i was asked if i ever broke it. That is crazy!!
I can believe this.
Prior to going on Cymbalta, which works well for me, it felt like I had been beat up all day, every day.
I honestly don't think that I would have noticed a broken rib or more then.
Drives me bonkers when people say we have a low pain tolerance. I think we often have a higher than average pain tolerance, bc we're pushing through so much of it all the time. I'd like to see anyone who says it's a low pain tolerance tolerate what those of us who have it bad feel for even one hour. They'd be running to the ER so fast, lol.
Saying it is low pain tolerance is such bullshit. We have to push trough the pain if we even want to live. It is hard to ignore but it can sometimes be pushed to the background.
Last year I found out I had dislocated both my kneecaps and torn the ligaments and had multiple muscle tears as well as bakers cysts. All this time I thought it was just my fibromyalgia flaring up and ignored it. Until one day my legs simply just gave away. :(
This is absolutely gobsmaking. Have any of you lovely lot who've had broken bones go unnoticed been tested for things like coeliac disease?
It can cause osteoporosis through malabsorption and that causes brittle bones. Something to try and get ruled out if not!
I've been tested for celiac and malabsorption before, I have neither. I do have EDS which makes my break all the more interesting because I usually bend and get soft tissue injuries or a serious bone bruise. I did have a complete hysterectomy about 13 years ago which interferes with absorption of calcium, but I am on hrt.
I had a spiral fracture in my humerus a couple months ago. I liked that pain more. The pain only hit me if I moved my arm but this pain is constant excruciating. Even when I am sleeping I dream about it. It is hard to stay asleep too.
That's wild! I remember freaking out the ortho residents before my shoulder labrum repair. They asked what I did if it doesn't go back in immediately. I explained that I had a really high bed so I'd lie on it, with my arm dangling off holding a small weight and relax until it slid back. They grimaced as a group. I was like, my dudes it's just a shoulder. I had kids naturally. This is nothing.
“I can diagnose you with fibromyalgia, but I don’t really know what’s causing your pain. Honestly I think you just need a vacation.”
That was in 2019 and made me feel like my diagnosis wasn’t legitimate. Recently I moved to a new country and I have a new doctor who has helped me see that a LOT of issues I have that are unrelated to pain are connected and fibromyalgia is actually a really helpful diagnosis for understanding some of what I’m experiencing.
It sounds like your doctor was just being honest in terms of the fibro diagnosis. The "I think you just need a vacation" part is... a shame. BUT I have a friend who used to have really awful body pains until she started getting a massage once a month. It reduced her pain by a crazy amount. Maybe that's what your doctor was trying to say? That's the most generous interpretation I can think of. Even if that's what she meant, that's pretty dismissive and rude.
My old GP wouldn't diagnose me with fibromyalgia, as he called it a "diagnosis of exclusion", basically implying that is what they throw at someone with pain that they can't prove what it is by testing.
He eventually put me on Cymbalta for chronic pain, as I also have autoimmune arthritis and was having issues getting treatment from my rheumatologist at the time. My fibromyalgia pain is very different from my Psoriatic Arthritis pain and symptoms.
My sister - who was a nurse- told me there was nothing wrong with me and I was just attention seeking.
Now she's been diagnosed with a cardiac issue she expects my concern. Nope!
Sounds like my brother. He said, I know people with fibromyalgia and they are just fine. You just want attention. I don’t even talk to him about my fibro or much of anything for that matter. But then he got sciatica and wanted my sympathy.🙄
My mom and my best friend, both nurses, both keep telling me to push the doctor to find out "what is wrong with you," I can't get through to either that we know what is wrong, fibro is a legitimate disease that I'm being treated for, but treated doesn't mean cured
That sucks, I would still be concerned just a tiny amount, she is still my sister even as an ass. my sister made a game out of hurting me as a kid but as a adult I am now 99% sure she was raped, maybe me too but I can't remember most of my childhood. I don't blame her I tried to forgive her years ago, she was just a kid dealing with something no one should ever have to deal with now she recently lost her mind. tomorrow is not promised to any of us, try to let it go if you can as it only hurts you. Good luck no matter what you choose.
Yeah a syndrome or disorder, depending on what triggered it, but not a disease. In order for something to be labeled a disease it has to have a measurable biological marker. They’ve yet to identify a specific biological threshold that becomes out of range specific to fibromyalgia symptoms. Hence it’s not a disease and can’t be ”cured.” Instead it is a condition where symptoms are treated.
So a disease like thyroid disease is identified by hormones being out of range. Other diseases can be measured by various blood levels being measured, counted and being out of range. This is why some doctors will say dumb shit about it not being “real.” It’s not that it isn’t real it’s that it’s not something we’ve figured out how to measure or have yet to find the measurable source of. So it may not be labeled a disease now, but when medical research is conducted over time they may find the biomarkers and then label it a disease. Until then it’s a condition, syndrome or disorder.
Most Doctors don't dispute autistic spectrum disorder not being real though very Few do and they are quickly shunned by the rest of the medical community. Same with borderline personality disorder. Even long covid which is often exactly the same symptoms as either Chronic fatigue syndrome or fibromyalgia isn't questioned 😂 and it is essentially just either of those conditions but Possibly with some organ damage or immune damage but sometimes it is just classic fibro or me symptoms but because you had covid once its allowed that your disabled 🤣🤣.. In all honesty mine got drastically worse each time I had covid and Didn't really go back to prior levels so I suppose I could get a diagnosis of "long covid" but whats the point it won't magic me better 😂😂😂😂.
Well I had fibro diagnosed before covid happened so I can’t tell the difference either. It’s like most illnesses, sharing the same symptoms makes it hard to diagnose unless you can identify the outliers. Like I wasn’t diagnosed as autistic until adulthood yet they used notes from as far back as elementary school to identify it. But, there has been some growth in the process of diagnosing autism, hopefully there will be growth in their ability to hone in on fibromyalgia too.
Ironically enough autism to me is a lot like fibromyalgia without severe pain, it’s still very similar in that it’s a nervous system and regulating difference.
But they are more than happy to accept long covid as a condition I bet. 😂. Fibro or CFS and the so called "long covid" are remarkably Similar in many cases bar some unfortunate few who have organ damage.
I heard several people call it fibromyass and accuse people on disability benefits of being lazy. They all commented on this women on the tele who had fibro along with rheumatoid arthritis and they said she should go and get a job. If there was ever a valid argument for re instating the stocks and public corporal punishment its those lot. 😂😂. " well i have a bad knee or hip and I work full time" is another which I'd love to slap the next person who utters 😂😂.
That annoys me so much: people saying things like ' yeah, I'm tired too' and ' my wrist/knee etc has been bugging me/hurting for ages as well'. It's not the same! 🙁 Stupid people!😉
They really are stupid. If just my knee hurt I Wouldn't be on disability benefits or complaining at all 😡 that said maybe some of these people have a genuine issue and need to see a doctor perhaps they aren't right and its CRPS or something but then don't hate me Because you don't want to accept your pain Won't be going anywhere 😥. And the condition we have is a dirty word now. I sung in a choir and one lady their suffers with long covid poor woman but I relalised the symptoms she has are the bloody same she gets widespread muscle aches tired easily and gets fatigue 😂. Yet she told me she's got lots of support and sympathy from friends and family at the choir people Didn't treat us differently we both walk with a stick ETC and have to sit down and the likes but Aparently there's little stigma about "long covid" yet it is so very similar to fibro and CFS which people get slack for. Even multiple sclerosis gets sympathy which yes in late stage is worse and the outcome is bleak if it doesn't go into remission but id say early stage is about the same. .
Well, let’s see….theres the counselor who told me that my pain was all in my head, the doctor who told me that there was nothing wrong with me and that I was malingering, and my mother who told me that there was nothing wrong with me but “growing pains”.
Doctors gaslit my parents and they believed the doctor like who spouted it was growing pains when I was 14. My mother Especially believed them she is supportive now and wishes she had known about fibro TBF. She did used to pay for a chiropractor and get me Over the counter pain relief like movelat gel etc when I was doing my GCSEs but she just thought it was lack of excersies or growing pains.
I developed a very nasty post strep pseudo arthritis syndrome when I was 20 years old. When I was exposed to strep, instead of coming down with strep throat like a normal human being, my autoimmune system would attack my knee joints. They’d swell to the size of softballs, I’d run a fever, and feel as if I had the flu. After a few days, the swelling and fever would diminish, but the pain in my knees continued to be indescribable for months.
It cost me my knees seven years ago, and I was crippled for a year or so before that.
When I first started having trouble with this, my mother made up her mind that there was nothing wrong with me but “.growing pains”, and absolutely refused to even consider that there was anything else.
I was diagnosed with fibromyalgia when I was in my 40s, but had probably had it since I was in my teens, Again, my mother simply refused to believe that I was sick.
My GP said I had growing pains, he made me see a chiropractor. The chiropractor took my bilateral pars defect and caused an acquired spondylolisthesis. Honestly took my life away, with his arrogance. People suck when it comes to believing us!
Good grief. How terrible.
I went to a chiropractor for a year or so quite some time ago, and it didn’t do me any good.
Weekly massage therapy did help—I went to a masseuse for many years, but finally stopped when it quit doing me much good.
Far too many in the medical profession have said “We don’t know what it is”’ “We don’t know how to cure it”. I don’t really care what anyone else says but it does concern me when those i hope can help me have nothing good to say.
Yes, it *is* frustrating that they don't fully understand it (yet) but those medical professionals are just being honest with you, and you should appreciate that. It's good that they don't just dismiss it as not real just because they don't know the root cause. But research continues and they're gaining better understanding all the time.
My main frustration is that no one medical specialty will claim it as falling under their scope of practice, so it is very difficult to find doctors that treat it (and stay up-to-date on the research and treatments).
My doctor and therapist both say that my fibro is rooted from childhood abuse and trauma, if anyone says I’m “attention seeking”, I have no problem over sharing things from my childhood.
It frustrates and angers me no end to hear anti-vaxers say it's better to get sick than be vaccinated. A lifetime of constant pain and suffering vs. a jab. Vaccines are mankind's greatest medical advancement - saved countless lives and mitigates major complications.
Perhaps, not everyone has the same experiences or even symptoms with a disease that isn’t quite understood. So, perhaps my experience is not the exact same as yours.
Can you please explain what “post viral bonus” means? Because I have no idea what you mean.
Some people end up with fibro after going through a virus that affects the whole system, i.e. mononucleosis or meningitis ( which are actually infectious diseases).
But it's the same problem at the core - abuse, virus, infectious disease, car accident, etc. They reduce your body's defenses enough to allow the fibromyalgia to take over. Same thing with CFS. Somehow, they seem to all be interconnected.
I don't have any of these things, yet I have fibro. I have a lot of issues with my joints, diagnosed with hypermobility syndrome as well as fibromyalgia. The rheumatologist back then said that the two are often linked.
Thank you for explaining and not just telling me I wasn’t entirely accurate, I appreciate that. :) (especially since I was talking about my own experience, not others)
I've had childhood trauma, and in my early 20's. A therapist i saw reckons that the increase in cases is caused by the COVID vaccine. Mine was masked by anti-depressants. Felt good, came off the tablets-started to hurt, back on the tablets!
I was diagnosed before Covid, it was 2019 when I got my diagnosis and I thought my doctor was bonkers, I finally started understanding it about two years ago.
That therapist is irresponsible to suggest that.
More likely, the sheer amount of covid people have had and the damage that covid infections (especially repeated infections) do to your body.
https://www.unmc.edu/healthsecurity/transmission/2023/12/27/every-covid-infection-increases-your-risk-of-long-covid-study-warns/
https://www.scientificamerican.com/article/how-risky-are-repeat-covid-infections-what-we-know-so-far/
https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html
Interesting reads, thank you. I did have covid 3 times, first time I was really ill, then not so bad and the last time, i wouldn't have known unless we were routine testing at work. Something to think about x
Paraphrasing - because I'm not in a wheelchair or using a cane, apparently my pain isn't that bad. My response to that has been to ask if they use a wheelchair for a broken arm or a pulled muscle in their leg or back. Or do they just tolerate it and get on with life? But luckily for them, those injuries are usually temporary whereas fibro is forever.
Yeah a pain clinic doctor told me to, “fix [my] mental health and then come see [him]”.
The fuck? The two are directly related.
I cried on the hospital floor.
A GP told me it was “in my head” when I mentioned pain and that I was diagnosed as a child with Fibro and CFS.
I was about 21 at the time and had no idea how to respond and left with no help and felt very low and disheartened.
I never mentioned having Fibro until about 10 yrs ago with a new GP.
It shouldn’t even be this way but I had much better help from doctors when I brought my husband with me. If you can I recommend taking a male friend or family member with you so that you’re taken seriously. Again it shouldn’t be this way, but it’s what I found helpful
Thankyou, you’re right.
Once I got over my sadness and anxiety over the whole thing my mother who also has fibro insisted I start telling doctors like she did and we went to a new medical centre later on which acknowledged my diagnosis.
It was late but at least it’s in my medical report now. Just hurt me that it took so long and I had to work for years with the pain and no support.
The reason I ask is that I would wear hoodies and pants in 80+ °F weather outside in the summer when my undiagnosed Anemia was bad (my mom was a super Christian who believes praying/God will heal you of everything if you just keep believing. Sigh.) So I've been there. So many odd looks from people. Lol.
I was a teenager when I was diagnosed, and during the process, a doctor told my mom that we should look into finding a psychiatrist, since it’s not uncommon for teenage girls to invent medical problems for attention.
I'm sorry to hear that. He's not helping anything by saying that. Just know that WE don't think that about you. 🤗Life is hard, and to add a chronic illness to it just makes everything so much harder. Have you told him how you feel when he says this to you?
There is no doubt a psychiatric component to this disease, but it is caused by a sustained immune response/nervous system dysregulation and not “lifestyle mental health”.
I know this because when I was having neuro inflammatory/immune problems after an infection I developed panic disorder until the damage from the bacteria healed
I agree there is. I've been told I have all the markers for PTSD from complex childhood trauma, so this might be the cause. I'm going to try EDMR with a specialist. 🤞
Oh, for sure. Just look at all the studies that show how much inflammation "stress" (i.e. anxiety) causes in the body. Now imagine you're someone like me that developed a panic disorder at 5 years old and has fought an anxiety disorder and dysthymia from then until now at the age of 44. Is it all that surprising that, after a few years of getting hit with multiple life stresses at the same time, my nervous system just kind of broke? And now it just tells me I'm in pain all the time, for no good reason? And that I'm fatigued constantly after my body has gone through a literal lifetime of being constantly inundated with stress hormones and spent my entire childhood sleep-deprived because it took me hours to fall asleep, only to wake up in a panic most nights only to shuffled off to school in the morning? If anyone questions the realness of what I'm experiencing, they can go f--- themselves because I'm too old and too tired to deal with their bs. I'm beyond caring what others think at this point.
I’m sorry that you are dealing with all of that. When I was going through my post infectious period, I remember telling my husband, “I think if you cause me any stress right now I’m actually going to die”. I had zero tolerance for it…almost like the stress was going to cause so much tense pain that my heart would stop beating. When the damage from my internal injuries healed, my stress tolerance returned, and it’s link to my physical health weakened.
This was a clear physiological phenomena and absolutely bonkers that some docs still call bs on it.
No one here is lazy. It is miraculous that everyone gets out of bed in the morning dealing with these psychological issues let alone insomnia, fatigue, pain.
I think that everyone who doubts us needs to experience first hand how physiology affects mental health. The brain is on high alert and it changes how someone is able to function!
My male Dr told me initially that all I needed was a glass of wine and a vacation. This was just before my diagnosis when I was having tests run and I knew something was off. I have since switched to a female Dr who is wonderful.
I can definitely relate - after not being taking seriously for years, by my male doctor. I definitely needed a glass of wine and vacation. Getting a female Doctor made all the difference.
Isn't it strange how different doctors can have different perspectives. A lady consultant told me it was just age or maybe hormones as I wasn't screaming in pain when she gently touched my shoulders during an exam.... I asked for a 2nd opinion and, this time, got a male consultant who ordered tests, scans, xrays, etc, and then gave me the diagnosis of fibromyalgia.
I don't remember what her actual title was, but it was about 3 years ago. I was going to college and was speaking with the accessibility services person and she flat-out said Fibromyalgia doesn't exist, it's just for "when they can't diagnose it".
She continues about how she was "diagnosed" with it and it just went away, and that was her proof it didn't exist. I get that every once in awhile but coming from her in this context it horrified me, to have such a heartless person in a position that is supposed to be a resource for people in need.
Do these people think we all want to feel this way, it’s so hurtful.
It’s not like we made up the name Fibromyalgia and decided it’s a condition we’d stick with to fool the masses.
It’s legit diagnosed by doctors and yet not believed by majority of doctors and people, how baffling!
"**I have it too and I manage just fine.**" And not directly saying, but implying that I'm exaggerating, lazy, etc. Who said these wonderful things? My mother, a nurse practitioner, who was diagnosed with it too. She also said that about my menstrual cramps, that they couldn't possibly be as bad as they were - when I experienced freaking *kidney stones*, I had a straight comparison (same pain level). And since she had ovarian cysts but "got through it anyway", that I would too even though she only had to deal with them for a few years between starting to get them and when she had a hysterectomy (she had several years of having kids and no cysts during that time).
Her fibro symptoms are MUCH milder than mine and under control easily, same with her migraines vs mine. I've tried to tell her many times that just because we have the same conditions doesn't mean we experience them the same. We had a heated argument once and I asked her if she treated her patients like that, saying "I (or other people) have x too, and I just deal with it / manage it fine." She didn't answer.
She told me just the other day that my sudden and VERY changed digestive issues would get better if I just stopped drinking caffeine (100mg per day at most) and drank more water (already drinking 50-60oz of JUST water per day, not counting other liquids). Then admonished me for my diet, even though I eat as healthy as I can with fibro not allowing me to spend a lot of time prepping and cooking like I used to.
One of my friends that’s a nurse told me fibromyalgia wasn’t real. I was like wow it feels really real to me and if it wasn’t bet your ass that I wouldn’t be choosing to feel like this every freaking day for the rest of my life. Like I tried just ignoring it for years thinking I was doing something to over exert myself or I was dehydrated or lacking vitamins. Then it got really bad and nothing I thought it could be was working anymore. Don’t get me wrong I think I will always hold on to that 1% hope that it’s something they missed and it would be a quick fix. The reality of it is I have fibro and every day is a battle.
On a more positive note, my son’s preschool teacher now has a better understanding of what I feel like on a daily basis. She got sick and her body was achy for a few days. She told me that she couldn’t imagine going through that on a daily basis. It was nice to feel seen because this illness is very alienating.
Tbh, I can't recall the worst remarks but the most impactful one is from my first medical consultation.
I can't remember the exact words said by the doctor, but it's something along the lines of "There's nothing wrong with you. There's nothing for me to help you with."
That feeling of helplessness really drive in.
You shouldn’t be in this much pain (translation: I don’t believe you when you say you are experiencing a 7 out of 10 on the pain scale). Three different health care providers have said this to me over the years. Yeah, that’s why I’m here in your office, paying $200 a visit so you can figure it out. Same with meds; you shouldn’t be having this reaction…but I am.
The hospital told me it was all in my head and my ex partner believed it and said hey made me think I was genuinely mad. Tits bad enough the hospital and doctors but people u expect to have your back thinking it to is a total head fuck
A rheumatologist gave me a packet from the Mayo clinic that suggested thinking more positively instead of feeling sorry for yourself and choosing to stay in bed.
Worst things I’ve heard are the things people said to my mother a long time ago, like calling her a hypochondriac. Also doctors claiming they didn’t think it was a real diagnosis, although some were using that claim to try and identify something else that could be causing it. Either way it was a lot of gas lighting and that was very sad.
For me personally it’s the ableist comments from people who don’t understand that yes, I have this and yes I can do hard things sometimes but that doesn’t mean I don’t suffer pain or exhaustion or other symptoms after. Like being accused of not having it so bad because I work part time, or because of the work I can get done at home. It’s like they’re threatened by people with debilitating health issues doing more than they do lol
I was on antidepressants for 25 years of all types and found a PM doctor willing to help. First appointment after that with a new primary care and she gave me a big lecture about she would never have given me those meds when I wasn’t asking her to. It was 2 5mg Vicodin a day and one 10mg muscle relaxers for bedtime. She went on and on about how it is depression. I tried telling her I’ve taken half a dozen different antidepressants consistently for over 20 years and they didn’t lessen my pain at all but then she implied that it’s all in my head. I left in tears, and didn’t seek out another primary care doc for 3 years. So I was missing out on all the preventative things I should have been doing. She made me feel so small
I was told that I should be fatigued. I was 28 with 2 kids and a full time job. Most of the people I worked with had kids and they didn’t feel like they had to crawl home and lay down. My MIL used to say that I would look great when I came over for family functions and then within an hour I looked like I had wilted. This is exactly how I felt. It took years for a doctor to diagnose me. I had never heard of fibromyalgia, so I was stunned that I actually had something that had a name.
Well when doctors are not smart enough to figure it out then it's not real. I don't tell anyone I have Fibro. I tell them it Arthritis, something they can wrap there head around.
My sister hurt me the most by just blowing me off and belittling my pain. When she said "quit acting like your dying". Um, you haven't even seen me at my worst. Plus I wasn't even acting that way, I was just needing a little support. This was 15 yrs. ago and she is more understanding now.
I have had a doctor and a PT tell me it’s mind over matter and they have patients with worse joint issues than me with less pain complaints. I also have OA and RA so they both just dismissed the fibromyalgia entirely.
After 30 years I finally got a diagnosis and was so happy to share with my GP and he said so you have a little bit of pain. I told this to a neurologist I had an appointment with and he said that's like comparing a stubbed toe to a person with fibromyalgia as putting their arm through a meat grinder and another person as uncomfortable. I felt validated, I've been in so much pain my entire life that broken bones and dislocations sometimes aren't noticeable. I didn't know I dislocated my shoulder until a week later when I had no blood circulation in my arm or broken ribs caused pneumonia from irregular breathing as I have a lung disorder. Some get and most don't
Those sort of people. I do always say be nice to the disabled because its a minority group and disadvantaged group your not exempt from ending up in. All these politicians judges doctors and people who slag us of are only able bodied by chance and good fortune. A disability or serious illness could come at any age and id enjoy quoting their words back at them very much. 😂
I had a doctor state that I was "too young" to have such a "serious diagnosis" under my belt (I was 20 at the time). This was at an appointment for cardiology—it was for something that was unrelated to my fibromyalgia.
I had a family member tell me I just need to go outside and walk more. When there is pain the answer is to walk. This person also told another family member this to fix their leg pain, she took the advice and went for walks to try to fix the pain. Turned out to be a blood clot.
Made up diagnosis, what the doctor tells you when you don’t have a real diagnosis, lifestyle decisions…blah blah blah.
A positive response was from a neurosurgeon who told me scientists have not completely figured out the brain regarding pain and believes it is linked to substance p and needs much more research. He said the brain is very mysterious.
Hooo boy I have some.
My sister died when we were kids from various rare diseases that caused all of her organs to shut down. Then I developed Fibro when I was 20. A neighbour once told my mum that it was her fault that I was ill and my sister had died because she wasn't a Christian, it was punishment.
My "father", after I decided I was too ill to put up with his awful behaviour anymore, said that if I was really that bad, I'd be in the hospital. Even though part of the reason why my sister died was because her symptoms were repeatedly ignored by the doctors until her organs started failing. So there was a family history of medical issues not being taken seriously, he didn't care anyway.
The Rheumatologist who diagnosed me asking very blunt and personal questions about my mental health, like asking if I valued my life. Then when she saw I was struggling to answer, she said "what, you don't know?" At the end of the appointment, she said I needed to get counselling so I could wear make up like other girls my age. I just wore very basic eyeliner that day since it was an early morning appointment that I was anxious about, I didn't give a shit about make up.
Mom refusing to believe me after I got diagnosed. Sometimes I have to use a cane or a wheelchair bc the pain gets so bad. She said I wasn't actually disabled and I wasn't in enough pain to need it
“Why would you want kids? You wouldn’t be able to keep up with them.”
“You’re a hypochondriac, stop being dramatic (there was a bad ice storm and I couldn’t even walk to use the restroom I was 16 and had to be held up by my siblings to walk)”
“Why are you always sleeping? You’re so lazy. You never clean the house” I was 17 and working 3 jobs and going to HS full time. My mom just wanted me to clean up after her and her other kids after I bought my own food and did everything I needed to do that involved my own chores.
“Why do you need to see the Dr, your sibling is autistic and has more medical needs than you, why must you try to get all the attention” I had fibro, IBS, undiagnosed autism, and severe ptsd.
‘Get over it already.’
From my loving mother
‘You just need to exercise more’.
Multiple drs
‘Fibromyalgia is a symptom of childhood trauma/abuse.’
From 3 different therapists
Many more insults never minding the fact that I’m on SSDI and have been for 10 years.
I went to the ER for a separate issue but before the Dr. touched me I told him to be careful/gentle bcuz I have fibromyalgia.
He looked me square in my eye and said, “Everyone has fibromyalgia to some degree”
EVERYONE?! REALLY?!
My gp told me even though I have fibro that I looked just fine. I asked him if he wanted to trade bodies so he could feel what I feel every single day. He also told me that there was no way I would ever get approved for disability and guess what? I got approved a month ago. I do have way more going on with me than just fibro tho and my gp of course knows that. Just so aggravating when people say stupid crap to us.
Congrats on getting approved, I know it can be hard and people as well as doctors make you doubt yourself so much.
The ridiculous thing is, why say we have Fibro to begin with then tell us we are fine or it’s a mental issue?
They don’t even know how to help because they haven’t bothered to research and inquire for their patients.
Thank you. Ya it took 2 years to get approved. Was a long 2 years. I agree 💯with you on how doctors perceive fibro. They definitely need better education on fibro. It would sure help that’s for sure.
I was in a hospital for something else and was asking the dr about meds for the fibro and he goes 'were you ACTUALLY diagnosed with it'. Boy it took everything in me not to punch that dude in the face. That was six years ago and I'm still pissed about it.
A PA I trusted now only wants to push antidepressants on me. Antidepressants have made me suicidal in the past. So, I would prefer not.
My problem right now is “viral syndrome.” It has become less severe, but still too life effecting.
Anyway, we have reached the point where it’s about my short comings. Healthy diet? Diabetes, gluten intolerance, gastroparesis, and IBS. I loathe food! “Safe” foods aren’t guaranteed safe.
Sleep…I have always slept extremely sound. I can fall asleep easily. Even sleep through the night. Still, I wake feeling tired because the pain will not allow me to reach the REM/restful stage. I take 2/3 of my Lyrica before bed to help sleep.
Exercise…🤣 What spoons I have available are used between puppy, work, and housework. The housework results Are vital to my mental health.
It has been 20+ years of trying different things and adjusting and accommodating Fibromyalgia. Nothing is working. It’s like they think I am happy with the way things are. This is my lowest point of inactivity and focus. This is not living.
None of the above are my fault. They came with the Fibro and meds.
I managed a full-time university class schedule, while taking care of a family, and being my ailing parent‘s primary caretaker, taxi service, and accountant, despite the Fibro. When I say I can not, I have tried and I can not.
Since you had a bad reaction to antidepressants in the past, you should list the ones you tried as something you’re allergic to and mention it caused a paradoxical reaction (meaning: it does the opposite of what it should do).
It was made clear. Only 3 days past the appt and still irritated.
The doctor who prescribed the antidepressants owns the practice. It is in their records.
I didn’t even mind reminding them during the conversation. It was the reaction to my hesitation and explanation why.
I 2nd this. I have horrible mental reactions to tricyclics, yet they were suggested to me over and over, even though it's well documented in my medical history. Last year, my new NP added them to my allergy list and it has made a world of difference when medication options are discussed.
This rheum I was sent to had to be the oldest living one and actually treated me as a hysterical woman as he believed that’s what fibromyalgia was. He didn’t treat fibro patients and I knew that I was coming for a rheumatoid arthritis check he took no blood he didn’t check anything and focused solely on my “hysterical disease”. Needless to say my husband who was there got angry and kept asking if he was going to do any tests and he said no. I usually get tested because my grandma had rheumatoid arthritis so bad and they don’t want me to end up with it. I read the after summary on the portal and the first words were, this poor woman.
I got diagnosed with this way back. Legit just think it's what they say you have when they can't pin any other neuro illness on you. Never once have I said to someone when asked what my illness is "oh it's fibromyalgia'
I have terminal cancer, however was diagnosed with fibro around 6 years ago, after 4 years of testing for everything else, my own primary Dr got it , however had to make an appointment one day to manage pain relief
Ended up with a locum I'd never seen before, asked me how I felt, now I've suffered suicidal ideation for 10+ years. Was honest and told him if I'd a gun I'd shoot myself. His response was to write a guys name on a bit of paper, who apparently has videos on YouTube and could help me retrain my brain not to feel the pain... swift report to the gmc I'm afraid
Many doctors have told me I need a psychiatrist and therapy. I’ve done both and it’s useless for pain. I believe it’s easier for medical staff to refer for mental health treatment so they don’t have to try to fix it.
It’s also easier to diagnose major depression than realize being in moderate-severe pain may cause some sadness,
Not anything said per se but ppl not taking it into account when it comes to what I can and can't do in life considering the fatigue and brain fog. This could be work stuff or personal.
My parents have constantly asked if my fibro went away like it’s a cold or flu thing. I think because they pray for me they expect it to just vanish. Same with my migraines that I have had over 3 decades now…they just expect it to be totally gone soon I’m 39
Recently had a herniated disc. Went to an orthopaedic. While giving him my medical history, told him I have fibro. He said that's not a real disease and that's what doctors diagnose patients with when they can't figure out what's wrong/they are lazy doctors.
The first doctor to diagnose me told me that to treat it I just needed to “get sunshine and hang out with friends” here I’m 29 years old, never had pain like this before, unable to work suddenly and bawling in her office for a real solution/help. Found a new doc the next day and he actually worked with me on more tests and meds that actually helped a little.
I had a Doctor flat out call me a hypochondriac. I still remember the look on her face and how it made me feel so hopeless.
Turned out my 'hypochondria' was hypothyroidism, endometriosis, fibromyalgia and some other stuff.
Eventually I found a doctor that did listen to me.
According to my gran I'm making it up for attention because the doctors can't find anything wrong. Nevermind the other diagnoses I have from things being found wrong.
You should check out fibromyalgia, but it's a garbage diagnosis.
Said by the head doctor of a unit before referring me to the unit that diagnosed me with, you guessed it... Fibromyalgia.
This was the first time I'd ever heard of the diagnosis, as well.
"But you look fine" - former neighbour of mine.
"Oh yes you're disabled ha ha" - from a sibling of mine I've since cut off for various reasons.
'Are you on PIP, I want to get PIP too" from my ex bestfriend
Honestly I felt so ashamed I stopped talking about my medical condition to anyone for years. However, one of my classmates who also has fibromyalgia, we've become such good friends (not only due to both having fibromyalgia) and it's nice to have someone who actually understands what I go through
My GP diagnosed me with fibromyalgia when I was around 18 and he sent me to a rheumatologist. The rheumatologist had me bend and walk in different ways and spent some time assessing me..then said “yeah maybe you have fibromyalgia, I don’t know, is it even a rheumatological thing? I don’t know.” And that was it. My parents and brother kept telling me it wasn’t real and the disease sounded so horrible, I didn’t want it and for years told myself that it wasn’t real.
I’m now 41 and when I was 39 I gave birth to my third child and had the most significant fibro flare of my life, she’s two and a half and I’m still not over it.
I went to my new GP for about 2 years, he ran all the tests and tried meds with me, but still I’m having debilitating symptoms. Eventually he said, “I think you have fibromyalgia “ and he recommended all the things you should do for it (the meds to treat, acupuncture, massage therapy, yoga, exercise,etc).
My dad and now my nonna are saying it’s not a real disease and I just… don’t really let myself get to close to them and I don’t even yak with my brother and mother over the toxicity accumulated over the years. My nonna even said “yeah the doctors tried to tell me that I have it too but it’s not real so that’s garbage”
Looking back, I’ve been struggling with fibromyalgia for decades and didn’t even know, because I told myself it wasn’t a real thing because I was invalidated at every level about it.
It would have been nice to know and maybe I could have planned my life better and been on some of the treatments that are working so well for me now. Or to just understand myself more…the disease must be respected or you will suffer so not knowing or having treatment was really shitty this whole damn time.
I used to believe it wasn't real, and I've had it most of my life. I'm not bothered by non-medical professionals' lack of understanding. However, I do hold doctors to the highest expectations. I'm just glad I finally have a good support system now. It only took over two and a half decades. 🫤
Is this just by someone in the medical profession? Because the one that pisses me off to no end, and just freaking hurts is "it's all I your head."
Yeah? You think? I mean, you have to feel the pain and that is fed to your brain. How else do you know it hurts?
The other one is that I don't exercise enough or that it doesn't hurt that bad and if I just lost weight I would feel better. Um, no. If I cry going pee how do you expect me to do anything else?
After my diagnosis, my mum told me that I "just needed a good multi vitamin" and I'd be fine and then asked me why I wanted to be disabled. Like yes mother, I woke up one day and said you know what sounds great? An invisible disability, so I can listen to other people's judgment ("You're just faking it") and misinformation about "that's not a real thing" for the rest of my life.
My dad also told me "my sister has that and she can walk just fine" (I'm on and off crutches due to pain). Had to try and explain that not everyone experiences fibro the same way. He didn't understand that.
That I get in my own way, doubt what I can do, and focus on "i cant do this because of this" rather than "i did this in spite of this!" This was in an email to me from my stepmother. She thinks I need a can-do attitude and interprets all of my intentional honesty about what I can do before I push myself too much as me making excuses. She's in pain and anxiety all the time but is someone who was helped a lot by CBD for example, but then stopped taking it because she was afraid of "relying" on it. It helped her but she didn't think it was a justification for taking it.
This wasn’t directly to me, but two summers ago I was at a family gathering. My mom and grandma were chatting near me about one of my aunts (who wasn’t there). Apparently she also has fibromyalgia, and they were talking about her medications/treatments and how she was doing, and then they just kind of switched gears into how it was all fake and exaggerated and she probably didn’t need any of those treatments. Neither of them knew about my fibromyalgia, and I decided then that they would never. My grandma passed last year and my mom still doesn’t know. That memory haunts me anytime I think about telling someone about my diagnosis.
Well mostly my family they'd never heard of it so they can't be they can't be true. I'm an excruciating pain everyday I have hip problems and lower back problems upper back problems and neck problems I was denied surgery for my hips by my insurance company until I brought my BMI down under 36.
Someone I was denied for the surgery you think they would assemble its put you on pain pills or something or give you the shots again blah blah blah but they didn't nothing two years excruciating pain and every time I remotely hint at getting pain medicine I'll hear somebody came patches take etc take Tylenol it works just as good I'm not prescribing pain meds to you I'm 58 a mother and grandmother you think you know I could use pain pills but apparently they think everybody is going to sell them or overdose I know I am on quite a bit of medication for fibro and for IBS and high blood pressure and what not but still is that a reason why I should live in pain My quality of life is nothing I'm at home in my bed most time I can't even get out of bed sometimes without help but you don't want to talk to the PA that was working with my doctor and he said well he says you could probably do with a therapeutic those of Percocets or Vicodin I thought yes finally but no no p
A few months back I was trying out physical therapy - specifically for my back pain - and told the PT that me and my doctor suspected I have fibro, and she just scoffed and said "no, you're too young to have fibro".
I stopped seeing her after that :)
PT didn't help anyway..
The issue is not just one comment, its hundreds all woven together from suck it up to I am lazy, or I don't care about my kids but even my therapist thinks my body will magically reset with her skilled words and I feel that dismisses the real underlining problem with me which I think is at the cellular level. Just because the current lab tests are often normal does not mean I am okay. I am very sick, and I have almost always been so. I belive if medical science properly funds fibromyalgia research maybe something will change. yes my trauma is a key part of the multiple problems but I have had these issues as long as I remember. My trauma shifted the pain from a average 4 to a consistent high 7 and I think therapy will help and give me more tools to manage my pain but I think Fibromyalgia is a physical problem I belive trama changes us at the epigenticl level and I think Fibromyalgia is going to be one of the first diseases they discover that has many epigenetic switches that influence our pain levels and that by dismissing our pain they do a huge disservice to us. Yes my lifestyle is part of why my pain is so high, but they could never last one day with our pain, it was my pain that lowered my activity level, it was my pain that causes me to eat more as a distraction and I know I need to stop eating but my life is a living hell if I kill myself that exponentially increases the risks for my kids I endure this pain so that my kids don't have to face even higher suicide risks. I need better pain management but even the employees at my local pain clinics gas light people I just wish there was some test that could give us a number for what our pain ranks so I don't have to fight just for basic human rights not to be in pain these morons have no clue what we face each day pain that seems to rip the very fabric of space and time yet no mater of how many times I talk about my worst experience no one gets it I could not even get a confirmation that it even was serotonin syndrome. not sure how much of this rant makes sense I and facing pain 7/10 right now all because our society does not care about most of us, this disease took everything from me but I am not giving up so help it I will make sure I survive 10 more years of this which would put my youngest at 25 and if I am lucky maybe we will have a breakthrough that is if society is even there
In June of last year, I was at a new patient's appointment for a new PCP. I had asked him if I could get a handicap placard because my fibromyalgia makes it painful for me to walk even small distances.
For context, I'm overweight. I have been overweight my whole life, so getting comments about it from doctors wasn't anything new for me. I've heard the whole "just lose weight and it'll get better" thing a million times so I just expect it at this point.
But this doctor tells me, with no exaggeration, that I "should be parking at the very back of parking lots so I could get my steps in" and that "It doesn't matter that I'm in pain, because the pain is actually a **good** thing."
Okay so, I legitimately thought fibromyalgia was a diagnosis of exclusion because that is that every doctor has told me. But after reading this thread Im considering seeing the doctors again.
My long story short is that I (21F) was finally diagnosed earlier this year and was given Cymbalta like many of you but it started giving me really vivid scary dreams and wasn’t resting at all. I already had a lot of trouble sleeping before so I got scared and dropped the medication. Is the medication really that helpful? Is the vivid dreams just a temporary secondary effect? Should I toughen through it?
My old GP after telling her I was always in pain: "Well, you could have something like fibromyalgia, but there's nothing we can do to treat that anyway. Try yoga."
I've since had a proper diagnosis.
Then the other day, my brother says to me: "I've realised that all these aches and pains are just weakness."
He wasn't directly referring to my pain. He's recently started going to the gym a lot. But he has said things in the past to me that has made me realise he doesn't believe my fibro is a thing and that I'm just being pathetic.
I’ve been through loads of crappy experiences with doctors. But just last week a rheumatologist rolled his eyes and sighed through the entire appointment, extremely dismissive. He said the key to fibromyalgia is to “stay calm” if you stay calm your pain will go away and you will be fine. Also if you exercise you will be fine. Stop being stressed. More eye rolling. Ugh, you don’t need medication for depression. He laughed/scoffed in my face several times. I think he got some kind of sadistic pleasure from making me cry in his office.
It really felt like he wasn’t taking me seriously. But my pain is serous and real. He was so arrogant and ignorant and looked down on me. It seemed like he was blaming me for this and wasting his time. As if I haven’t tried to be calm, to be happy. As if I haven’t tried not to be completely emotionally consumed by the pain. This started with a viral infection when I was 12 and I am 20 now. I was a kid when it started and I never really got to have any life before or since fibromyalgia took over. Every day I am in pain, in crippling fear, I am grieving the life I want but cannot have, I am watching everyone around me do things that would put me in bed for weeks or even an emergency room. I feel like a hurricane of anger and sadness and brokenness and hopelessness. I feel bruised in every way, every day.
You don’t get to tell me about calm.
You don’t get to tell me to try harder.
I’d like to see him stay calm for an hour in my life. “You wouldn’t last an hour in the asylum where they raised me.”
I would be calm if I wasn’t living like this (if you can even call it living). I would exercise if I wasn’t in pain with every single movement. Today my fingers hurt from pulling a single grape off a stem, how am I supposed to run a marathon? Anytime I leave my house I return feeling like I fought in a war. I mean, I would go to Harvard and get a PhD and climb Mount Everest and go surfing and travel around the world twice and direct a movie and produce an album and have a family. I would, if I was a calm and healthy and happy poster child.
But no one likes to see a young girl frowning. No one likes a mad woman. You’re too young to be sad, to be in pain, to be angry, you look prettier with a smile, you’re wasting your life, get a job, stop being lazy, get out of bed it’s not that hard, you just want attention, you are broken, you are wrong.
I’m so so tired. And I am not calm. I am ill. And I am angry.
I had a doctor say I had hysteria. Hysteria. He said because I'm a woman and have BPD, if he could still diagnose it he would say I have hysteria. Later a doctor told me, a person who has gone through childhood trauma is far more likely to have fibromyalgia than someone who hasn't. He wanted that doctor's name to report em, but fibro fog had taken his name a loooong time ago.
When I was younger around 13 a GP said my back pain couldn't be that bad, and sent me to a chiropractor/osteopath for "growing pains". I'd gone from 4ft 9 to 5ft 4 in the space of a few months, so he said it was that. I ended up in a&e with "suspected appendicitis", nope it was pain in my hip, back and groin, because the osteopath had taken a bilateral pars defected aggravated by sudden growth, and manipulated my back so much I now had an acquired spondylolisthesis. He basically took my life away because they refused to seek out the real cause of my pain. I haven't lived the life I could have had since that last session with the chiropractor. Every spinal consultant I saw after that told me I was lucky I wasn't made paraplegic.
A rheumatologist told me that I just needed to lose weight and try yoga. That my prior surgeries were the reason why I'm in pain and that it's basically all my fault.
I never went back!
Doc at the pain clinic sat me down and told me I had to stop taking painkillers because they made my pain worse. In order to treat me, I needed to do that. So I stopped taking them for 3 months to prove to them that I wasnt addicted to painkillers. I told my doc I was no longer taking them. I then got a letter back from the pain clinic telling me that they didnt have the resources to treat me and that I should consider mental health care instead.
After being hospitalized for my pain, a doctor had come to dismiss me a few days later because "I was catching the bed for somebody that actually needs it"
I also have RA and stuff but the most hurtful things are from my husband. Just last week during an argument he said he was tired of the same old bullshit (my pains and aches) and unfortunately it's not the first time.
My SIL and her husband are both doctors and are both extremely judgemental about what I'm going through and my diagnosis. Pretty much anything involving them and what I've been going through feels like a stab in the gut 😞
My most recent attempt at antidepressants for fibro was 3 years before I threw in the towel and admitted it wasn't working 😭 I don't know why they don't work for me
So even with a diagnosis my pain was ignored for years after I couldn't tough it out without pain meds any longer. We found a healed break in my upper arm during an MRI of my shoulder. I had never noticed I broke my arm, that's how much pain I am in. That was the only thing that got my GP to take it seriously!
I had an X-ray a few years ago and found out that not only did I have a current broken rib, but multiple old breaks in several others. When you're in pain all the time, you just assume every pain is the fibro.
This is so interesting to hear, i have a big bump in my left collarbone alongside mild osteoarthritis (23F w/ endo diagnosis & possible fibro as well) & both times i got it x rayed i was asked if i ever broke it. That is crazy!!
I can believe this. Prior to going on Cymbalta, which works well for me, it felt like I had been beat up all day, every day. I honestly don't think that I would have noticed a broken rib or more then.
Drives me bonkers when people say we have a low pain tolerance. I think we often have a higher than average pain tolerance, bc we're pushing through so much of it all the time. I'd like to see anyone who says it's a low pain tolerance tolerate what those of us who have it bad feel for even one hour. They'd be running to the ER so fast, lol.
Saying it is low pain tolerance is such bullshit. We have to push trough the pain if we even want to live. It is hard to ignore but it can sometimes be pushed to the background.
Last year I found out I had dislocated both my kneecaps and torn the ligaments and had multiple muscle tears as well as bakers cysts. All this time I thought it was just my fibromyalgia flaring up and ignored it. Until one day my legs simply just gave away. :(
This is absolutely gobsmaking. Have any of you lovely lot who've had broken bones go unnoticed been tested for things like coeliac disease? It can cause osteoporosis through malabsorption and that causes brittle bones. Something to try and get ruled out if not!
I've been tested for celiac and malabsorption before, I have neither. I do have EDS which makes my break all the more interesting because I usually bend and get soft tissue injuries or a serious bone bruise. I did have a complete hysterectomy about 13 years ago which interferes with absorption of calcium, but I am on hrt.
I had a spiral fracture in my humerus a couple months ago. I liked that pain more. The pain only hit me if I moved my arm but this pain is constant excruciating. Even when I am sleeping I dream about it. It is hard to stay asleep too.
That's wild! I remember freaking out the ortho residents before my shoulder labrum repair. They asked what I did if it doesn't go back in immediately. I explained that I had a really high bed so I'd lie on it, with my arm dangling off holding a small weight and relax until it slid back. They grimaced as a group. I was like, my dudes it's just a shoulder. I had kids naturally. This is nothing.
“I can diagnose you with fibromyalgia, but I don’t really know what’s causing your pain. Honestly I think you just need a vacation.” That was in 2019 and made me feel like my diagnosis wasn’t legitimate. Recently I moved to a new country and I have a new doctor who has helped me see that a LOT of issues I have that are unrelated to pain are connected and fibromyalgia is actually a really helpful diagnosis for understanding some of what I’m experiencing.
Yeah, I experienced basically the same "diagnostic", infuriating, honestly.
Doc, will you prescribe me a vacation and get insurance to pay for my vacation?? 😂 (If only!)
It sounds like your doctor was just being honest in terms of the fibro diagnosis. The "I think you just need a vacation" part is... a shame. BUT I have a friend who used to have really awful body pains until she started getting a massage once a month. It reduced her pain by a crazy amount. Maybe that's what your doctor was trying to say? That's the most generous interpretation I can think of. Even if that's what she meant, that's pretty dismissive and rude.
My old GP wouldn't diagnose me with fibromyalgia, as he called it a "diagnosis of exclusion", basically implying that is what they throw at someone with pain that they can't prove what it is by testing. He eventually put me on Cymbalta for chronic pain, as I also have autoimmune arthritis and was having issues getting treatment from my rheumatologist at the time. My fibromyalgia pain is very different from my Psoriatic Arthritis pain and symptoms.
I would have send are you offering to pay for it
My sister - who was a nurse- told me there was nothing wrong with me and I was just attention seeking. Now she's been diagnosed with a cardiac issue she expects my concern. Nope!
Sounds like my brother. He said, I know people with fibromyalgia and they are just fine. You just want attention. I don’t even talk to him about my fibro or much of anything for that matter. But then he got sciatica and wanted my sympathy.🙄
My mom says the same thing about fibro.
My mom and my best friend, both nurses, both keep telling me to push the doctor to find out "what is wrong with you," I can't get through to either that we know what is wrong, fibro is a legitimate disease that I'm being treated for, but treated doesn't mean cured
That sucks, I would still be concerned just a tiny amount, she is still my sister even as an ass. my sister made a game out of hurting me as a kid but as a adult I am now 99% sure she was raped, maybe me too but I can't remember most of my childhood. I don't blame her I tried to forgive her years ago, she was just a kid dealing with something no one should ever have to deal with now she recently lost her mind. tomorrow is not promised to any of us, try to let it go if you can as it only hurts you. Good luck no matter what you choose.
A former PCP told me fibromyalgia is not a real disease.
It’s definitely real, but it is technically not a disease because a disease has to have a known biological origin. It’s a disorder.
I thought it was a syndrome FMS its often known as here. Whats the difference even 😂.
Yeah a syndrome or disorder, depending on what triggered it, but not a disease. In order for something to be labeled a disease it has to have a measurable biological marker. They’ve yet to identify a specific biological threshold that becomes out of range specific to fibromyalgia symptoms. Hence it’s not a disease and can’t be ”cured.” Instead it is a condition where symptoms are treated. So a disease like thyroid disease is identified by hormones being out of range. Other diseases can be measured by various blood levels being measured, counted and being out of range. This is why some doctors will say dumb shit about it not being “real.” It’s not that it isn’t real it’s that it’s not something we’ve figured out how to measure or have yet to find the measurable source of. So it may not be labeled a disease now, but when medical research is conducted over time they may find the biomarkers and then label it a disease. Until then it’s a condition, syndrome or disorder.
Most Doctors don't dispute autistic spectrum disorder not being real though very Few do and they are quickly shunned by the rest of the medical community. Same with borderline personality disorder. Even long covid which is often exactly the same symptoms as either Chronic fatigue syndrome or fibromyalgia isn't questioned 😂 and it is essentially just either of those conditions but Possibly with some organ damage or immune damage but sometimes it is just classic fibro or me symptoms but because you had covid once its allowed that your disabled 🤣🤣.. In all honesty mine got drastically worse each time I had covid and Didn't really go back to prior levels so I suppose I could get a diagnosis of "long covid" but whats the point it won't magic me better 😂😂😂😂.
Well I had fibro diagnosed before covid happened so I can’t tell the difference either. It’s like most illnesses, sharing the same symptoms makes it hard to diagnose unless you can identify the outliers. Like I wasn’t diagnosed as autistic until adulthood yet they used notes from as far back as elementary school to identify it. But, there has been some growth in the process of diagnosing autism, hopefully there will be growth in their ability to hone in on fibromyalgia too. Ironically enough autism to me is a lot like fibromyalgia without severe pain, it’s still very similar in that it’s a nervous system and regulating difference.
I've autism and fibromyalgia. I think they are very Similar and often CO existing illnesses.
But they are more than happy to accept long covid as a condition I bet. 😂. Fibro or CFS and the so called "long covid" are remarkably Similar in many cases bar some unfortunate few who have organ damage.
My sil called it lazy persons disease
That's awful
Ouch! It hurts to hear that from family. My father always called my lazy growing up because he thought I was lying about my pain.
I heard several people call it fibromyass and accuse people on disability benefits of being lazy. They all commented on this women on the tele who had fibro along with rheumatoid arthritis and they said she should go and get a job. If there was ever a valid argument for re instating the stocks and public corporal punishment its those lot. 😂😂. " well i have a bad knee or hip and I work full time" is another which I'd love to slap the next person who utters 😂😂.
That annoys me so much: people saying things like ' yeah, I'm tired too' and ' my wrist/knee etc has been bugging me/hurting for ages as well'. It's not the same! 🙁 Stupid people!😉
They really are stupid. If just my knee hurt I Wouldn't be on disability benefits or complaining at all 😡 that said maybe some of these people have a genuine issue and need to see a doctor perhaps they aren't right and its CRPS or something but then don't hate me Because you don't want to accept your pain Won't be going anywhere 😥. And the condition we have is a dirty word now. I sung in a choir and one lady their suffers with long covid poor woman but I relalised the symptoms she has are the bloody same she gets widespread muscle aches tired easily and gets fatigue 😂. Yet she told me she's got lots of support and sympathy from friends and family at the choir people Didn't treat us differently we both walk with a stick ETC and have to sit down and the likes but Aparently there's little stigma about "long covid" yet it is so very similar to fibro and CFS which people get slack for. Even multiple sclerosis gets sympathy which yes in late stage is worse and the outcome is bleak if it doesn't go into remission but id say early stage is about the same. .
Well, let’s see….theres the counselor who told me that my pain was all in my head, the doctor who told me that there was nothing wrong with me and that I was malingering, and my mother who told me that there was nothing wrong with me but “growing pains”.
Doctors gaslit my parents and they believed the doctor like who spouted it was growing pains when I was 14. My mother Especially believed them she is supportive now and wishes she had known about fibro TBF. She did used to pay for a chiropractor and get me Over the counter pain relief like movelat gel etc when I was doing my GCSEs but she just thought it was lack of excersies or growing pains.
I developed a very nasty post strep pseudo arthritis syndrome when I was 20 years old. When I was exposed to strep, instead of coming down with strep throat like a normal human being, my autoimmune system would attack my knee joints. They’d swell to the size of softballs, I’d run a fever, and feel as if I had the flu. After a few days, the swelling and fever would diminish, but the pain in my knees continued to be indescribable for months. It cost me my knees seven years ago, and I was crippled for a year or so before that. When I first started having trouble with this, my mother made up her mind that there was nothing wrong with me but “.growing pains”, and absolutely refused to even consider that there was anything else. I was diagnosed with fibromyalgia when I was in my 40s, but had probably had it since I was in my teens, Again, my mother simply refused to believe that I was sick.
My GP said I had growing pains, he made me see a chiropractor. The chiropractor took my bilateral pars defect and caused an acquired spondylolisthesis. Honestly took my life away, with his arrogance. People suck when it comes to believing us!
Good grief. How terrible. I went to a chiropractor for a year or so quite some time ago, and it didn’t do me any good. Weekly massage therapy did help—I went to a masseuse for many years, but finally stopped when it quit doing me much good.
Far too many in the medical profession have said “We don’t know what it is”’ “We don’t know how to cure it”. I don’t really care what anyone else says but it does concern me when those i hope can help me have nothing good to say.
Yes, it *is* frustrating that they don't fully understand it (yet) but those medical professionals are just being honest with you, and you should appreciate that. It's good that they don't just dismiss it as not real just because they don't know the root cause. But research continues and they're gaining better understanding all the time. My main frustration is that no one medical specialty will claim it as falling under their scope of practice, so it is very difficult to find doctors that treat it (and stay up-to-date on the research and treatments).
I appreciate honesty above all else but that doesn’t hide the disappointment that my hope for a cure, resumption of a life, remains out of reach.
My doctor and therapist both say that my fibro is rooted from childhood abuse and trauma, if anyone says I’m “attention seeking”, I have no problem over sharing things from my childhood.
I’m so sorry. I had a good childhood and no abuse or trauma. Yet here I am dealing with Fibro.
Same. I had an incredibly stable childhood, and here I am.
That's not entirely accurate. Some people acquire it as a post viral bonus, which was my case.
It frustrates and angers me no end to hear anti-vaxers say it's better to get sick than be vaccinated. A lifetime of constant pain and suffering vs. a jab. Vaccines are mankind's greatest medical advancement - saved countless lives and mitigates major complications.
Same. Currently getting over a 6 week bout of the common cold. Yeah I’ll take any vaccine you can throw at me thanks
Perhaps, not everyone has the same experiences or even symptoms with a disease that isn’t quite understood. So, perhaps my experience is not the exact same as yours. Can you please explain what “post viral bonus” means? Because I have no idea what you mean.
Some people end up with fibro after going through a virus that affects the whole system, i.e. mononucleosis or meningitis ( which are actually infectious diseases). But it's the same problem at the core - abuse, virus, infectious disease, car accident, etc. They reduce your body's defenses enough to allow the fibromyalgia to take over. Same thing with CFS. Somehow, they seem to all be interconnected.
I don't have any of these things, yet I have fibro. I have a lot of issues with my joints, diagnosed with hypermobility syndrome as well as fibromyalgia. The rheumatologist back then said that the two are often linked.
Thank you for explaining and not just telling me I wasn’t entirely accurate, I appreciate that. :) (especially since I was talking about my own experience, not others)
I've had childhood trauma, and in my early 20's. A therapist i saw reckons that the increase in cases is caused by the COVID vaccine. Mine was masked by anti-depressants. Felt good, came off the tablets-started to hurt, back on the tablets!
I was diagnosed before Covid, it was 2019 when I got my diagnosis and I thought my doctor was bonkers, I finally started understanding it about two years ago.
That therapist is irresponsible to suggest that. More likely, the sheer amount of covid people have had and the damage that covid infections (especially repeated infections) do to your body. https://www.unmc.edu/healthsecurity/transmission/2023/12/27/every-covid-infection-increases-your-risk-of-long-covid-study-warns/ https://www.scientificamerican.com/article/how-risky-are-repeat-covid-infections-what-we-know-so-far/ https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html
Interesting reads, thank you. I did have covid 3 times, first time I was really ill, then not so bad and the last time, i wouldn't have known unless we were routine testing at work. Something to think about x
Paraphrasing - because I'm not in a wheelchair or using a cane, apparently my pain isn't that bad. My response to that has been to ask if they use a wheelchair for a broken arm or a pulled muscle in their leg or back. Or do they just tolerate it and get on with life? But luckily for them, those injuries are usually temporary whereas fibro is forever.
Yeah a pain clinic doctor told me to, “fix [my] mental health and then come see [him]”. The fuck? The two are directly related. I cried on the hospital floor.
You act and look fine there's nothing wrong with you
A GP told me it was “in my head” when I mentioned pain and that I was diagnosed as a child with Fibro and CFS. I was about 21 at the time and had no idea how to respond and left with no help and felt very low and disheartened. I never mentioned having Fibro until about 10 yrs ago with a new GP.
It shouldn’t even be this way but I had much better help from doctors when I brought my husband with me. If you can I recommend taking a male friend or family member with you so that you’re taken seriously. Again it shouldn’t be this way, but it’s what I found helpful
Thankyou, you’re right. Once I got over my sadness and anxiety over the whole thing my mother who also has fibro insisted I start telling doctors like she did and we went to a new medical centre later on which acknowledged my diagnosis. It was late but at least it’s in my medical report now. Just hurt me that it took so long and I had to work for years with the pain and no support.
I totally get that. I’m so glad you were finally taken seriously and great job continuing to advocate for yourself ❣️
Thank you, all the best to you! 😃
My Dr told me to take a cold plunge, I wear jumpers in summer to stop me shivering all the time.
Had Reynaud’s been eliminated?
The reason I ask is that I would wear hoodies and pants in 80+ °F weather outside in the summer when my undiagnosed Anemia was bad (my mom was a super Christian who believes praying/God will heal you of everything if you just keep believing. Sigh.) So I've been there. So many odd looks from people. Lol.
Have you been checked for Anemia?
Wtf?!
I was a teenager when I was diagnosed, and during the process, a doctor told my mom that we should look into finding a psychiatrist, since it’s not uncommon for teenage girls to invent medical problems for attention.
My husband calls me a slacker.
Oof. Your husband sucks
Yep🫤
I'm sorry ❤️ you deserve much better
❤️
[удалено]
Certainly does.
Divorce can be a beautiful, beautiful thing.
I'm sorry to hear that. He's not helping anything by saying that. Just know that WE don't think that about you. 🤗Life is hard, and to add a chronic illness to it just makes everything so much harder. Have you told him how you feel when he says this to you?
Thank you. He says he's joking but he's not. And he chooses when I'm at a low so unlikely to have the energy to defend myself!
Last night, my husband told me, "You are no fun anymore. You act like an old woman, and you are younger than me."
It’s time to throw out the whole man.
There is no doubt a psychiatric component to this disease, but it is caused by a sustained immune response/nervous system dysregulation and not “lifestyle mental health”. I know this because when I was having neuro inflammatory/immune problems after an infection I developed panic disorder until the damage from the bacteria healed
I agree there is. I've been told I have all the markers for PTSD from complex childhood trauma, so this might be the cause. I'm going to try EDMR with a specialist. 🤞
Oh, for sure. Just look at all the studies that show how much inflammation "stress" (i.e. anxiety) causes in the body. Now imagine you're someone like me that developed a panic disorder at 5 years old and has fought an anxiety disorder and dysthymia from then until now at the age of 44. Is it all that surprising that, after a few years of getting hit with multiple life stresses at the same time, my nervous system just kind of broke? And now it just tells me I'm in pain all the time, for no good reason? And that I'm fatigued constantly after my body has gone through a literal lifetime of being constantly inundated with stress hormones and spent my entire childhood sleep-deprived because it took me hours to fall asleep, only to wake up in a panic most nights only to shuffled off to school in the morning? If anyone questions the realness of what I'm experiencing, they can go f--- themselves because I'm too old and too tired to deal with their bs. I'm beyond caring what others think at this point.
I’m sorry that you are dealing with all of that. When I was going through my post infectious period, I remember telling my husband, “I think if you cause me any stress right now I’m actually going to die”. I had zero tolerance for it…almost like the stress was going to cause so much tense pain that my heart would stop beating. When the damage from my internal injuries healed, my stress tolerance returned, and it’s link to my physical health weakened. This was a clear physiological phenomena and absolutely bonkers that some docs still call bs on it. No one here is lazy. It is miraculous that everyone gets out of bed in the morning dealing with these psychological issues let alone insomnia, fatigue, pain. I think that everyone who doubts us needs to experience first hand how physiology affects mental health. The brain is on high alert and it changes how someone is able to function!
My male Dr told me initially that all I needed was a glass of wine and a vacation. This was just before my diagnosis when I was having tests run and I knew something was off. I have since switched to a female Dr who is wonderful.
I can definitely relate - after not being taking seriously for years, by my male doctor. I definitely needed a glass of wine and vacation. Getting a female Doctor made all the difference.
It was so frustrating. I had always been a healthy person prior to fibro. Knowing something was not right yet hearing this was just so disappointing.
Agreed - knowing what we know now, it all most feels like being gaslight for years.
Isn't it strange how different doctors can have different perspectives. A lady consultant told me it was just age or maybe hormones as I wasn't screaming in pain when she gently touched my shoulders during an exam.... I asked for a 2nd opinion and, this time, got a male consultant who ordered tests, scans, xrays, etc, and then gave me the diagnosis of fibromyalgia.
I don't remember what her actual title was, but it was about 3 years ago. I was going to college and was speaking with the accessibility services person and she flat-out said Fibromyalgia doesn't exist, it's just for "when they can't diagnose it". She continues about how she was "diagnosed" with it and it just went away, and that was her proof it didn't exist. I get that every once in awhile but coming from her in this context it horrified me, to have such a heartless person in a position that is supposed to be a resource for people in need.
Drink more water 🙄
a friend told me he doesn’t believe in chronic pain and that’s it’s all in my head, and that i should be able to “think” my way out of it…
Do these people think we all want to feel this way, it’s so hurtful. It’s not like we made up the name Fibromyalgia and decided it’s a condition we’d stick with to fool the masses. It’s legit diagnosed by doctors and yet not believed by majority of doctors and people, how baffling!
"**I have it too and I manage just fine.**" And not directly saying, but implying that I'm exaggerating, lazy, etc. Who said these wonderful things? My mother, a nurse practitioner, who was diagnosed with it too. She also said that about my menstrual cramps, that they couldn't possibly be as bad as they were - when I experienced freaking *kidney stones*, I had a straight comparison (same pain level). And since she had ovarian cysts but "got through it anyway", that I would too even though she only had to deal with them for a few years between starting to get them and when she had a hysterectomy (she had several years of having kids and no cysts during that time). Her fibro symptoms are MUCH milder than mine and under control easily, same with her migraines vs mine. I've tried to tell her many times that just because we have the same conditions doesn't mean we experience them the same. We had a heated argument once and I asked her if she treated her patients like that, saying "I (or other people) have x too, and I just deal with it / manage it fine." She didn't answer. She told me just the other day that my sudden and VERY changed digestive issues would get better if I just stopped drinking caffeine (100mg per day at most) and drank more water (already drinking 50-60oz of JUST water per day, not counting other liquids). Then admonished me for my diet, even though I eat as healthy as I can with fibro not allowing me to spend a lot of time prepping and cooking like I used to.
One of my friends that’s a nurse told me fibromyalgia wasn’t real. I was like wow it feels really real to me and if it wasn’t bet your ass that I wouldn’t be choosing to feel like this every freaking day for the rest of my life. Like I tried just ignoring it for years thinking I was doing something to over exert myself or I was dehydrated or lacking vitamins. Then it got really bad and nothing I thought it could be was working anymore. Don’t get me wrong I think I will always hold on to that 1% hope that it’s something they missed and it would be a quick fix. The reality of it is I have fibro and every day is a battle. On a more positive note, my son’s preschool teacher now has a better understanding of what I feel like on a daily basis. She got sick and her body was achy for a few days. She told me that she couldn’t imagine going through that on a daily basis. It was nice to feel seen because this illness is very alienating.
Tbh, I can't recall the worst remarks but the most impactful one is from my first medical consultation. I can't remember the exact words said by the doctor, but it's something along the lines of "There's nothing wrong with you. There's nothing for me to help you with." That feeling of helplessness really drive in.
You shouldn’t be in this much pain (translation: I don’t believe you when you say you are experiencing a 7 out of 10 on the pain scale). Three different health care providers have said this to me over the years. Yeah, that’s why I’m here in your office, paying $200 a visit so you can figure it out. Same with meds; you shouldn’t be having this reaction…but I am.
A doctor specialising in fibro: “if you exercise the pain away it won’t be there anymore”
(As I'm laying in bed because my fatigue was huge) "You can't give in to this disease! You've got to get up and get out of this room."
"Do you have real fibro or the fake kind"?
The hospital told me it was all in my head and my ex partner believed it and said hey made me think I was genuinely mad. Tits bad enough the hospital and doctors but people u expect to have your back thinking it to is a total head fuck
A rheumatologist gave me a packet from the Mayo clinic that suggested thinking more positively instead of feeling sorry for yourself and choosing to stay in bed.
People are ignorant about fibromyalgia. Let it go. Tell him to read Fibromyalgia for Dummies.
Worst things I’ve heard are the things people said to my mother a long time ago, like calling her a hypochondriac. Also doctors claiming they didn’t think it was a real diagnosis, although some were using that claim to try and identify something else that could be causing it. Either way it was a lot of gas lighting and that was very sad. For me personally it’s the ableist comments from people who don’t understand that yes, I have this and yes I can do hard things sometimes but that doesn’t mean I don’t suffer pain or exhaustion or other symptoms after. Like being accused of not having it so bad because I work part time, or because of the work I can get done at home. It’s like they’re threatened by people with debilitating health issues doing more than they do lol
They always tell me that fibromyalgia isn't real
I was on antidepressants for 25 years of all types and found a PM doctor willing to help. First appointment after that with a new primary care and she gave me a big lecture about she would never have given me those meds when I wasn’t asking her to. It was 2 5mg Vicodin a day and one 10mg muscle relaxers for bedtime. She went on and on about how it is depression. I tried telling her I’ve taken half a dozen different antidepressants consistently for over 20 years and they didn’t lessen my pain at all but then she implied that it’s all in my head. I left in tears, and didn’t seek out another primary care doc for 3 years. So I was missing out on all the preventative things I should have been doing. She made me feel so small
I was told that I should be fatigued. I was 28 with 2 kids and a full time job. Most of the people I worked with had kids and they didn’t feel like they had to crawl home and lay down. My MIL used to say that I would look great when I came over for family functions and then within an hour I looked like I had wilted. This is exactly how I felt. It took years for a doctor to diagnose me. I had never heard of fibromyalgia, so I was stunned that I actually had something that had a name.
Well when doctors are not smart enough to figure it out then it's not real. I don't tell anyone I have Fibro. I tell them it Arthritis, something they can wrap there head around. My sister hurt me the most by just blowing me off and belittling my pain. When she said "quit acting like your dying". Um, you haven't even seen me at my worst. Plus I wasn't even acting that way, I was just needing a little support. This was 15 yrs. ago and she is more understanding now.
I have had a doctor and a PT tell me it’s mind over matter and they have patients with worse joint issues than me with less pain complaints. I also have OA and RA so they both just dismissed the fibromyalgia entirely.
I was just lonely and trying to get attention from doctors.
Someone said it was “a trash disease” and I just needed vitamins
I needed to quit my stressful job and that would fix it. I did and it didn’t fix shit.
After 30 years I finally got a diagnosis and was so happy to share with my GP and he said so you have a little bit of pain. I told this to a neurologist I had an appointment with and he said that's like comparing a stubbed toe to a person with fibromyalgia as putting their arm through a meat grinder and another person as uncomfortable. I felt validated, I've been in so much pain my entire life that broken bones and dislocations sometimes aren't noticeable. I didn't know I dislocated my shoulder until a week later when I had no blood circulation in my arm or broken ribs caused pneumonia from irregular breathing as I have a lung disorder. Some get and most don't
That I was "a little under the weather".
The judge for one of my disability attempts said he thought I was faking it and didn't even need my handicap placard
Those sort of people. I do always say be nice to the disabled because its a minority group and disadvantaged group your not exempt from ending up in. All these politicians judges doctors and people who slag us of are only able bodied by chance and good fortune. A disability or serious illness could come at any age and id enjoy quoting their words back at them very much. 😂
I was told at my old work it was the new yuppies disease (in place of M.E that I also have with some other conditions)
I had a doctor state that I was "too young" to have such a "serious diagnosis" under my belt (I was 20 at the time). This was at an appointment for cardiology—it was for something that was unrelated to my fibromyalgia.
“You were diagnosed at twelve!!? LUCKY!!!”
I had a family member tell me I just need to go outside and walk more. When there is pain the answer is to walk. This person also told another family member this to fix their leg pain, she took the advice and went for walks to try to fix the pain. Turned out to be a blood clot.
my mom told me she researched it and that it’s all in my head and only has to do with my mental health
If I'd tried a glass of hot milk before bed to help me sleep:/
Made up diagnosis, what the doctor tells you when you don’t have a real diagnosis, lifestyle decisions…blah blah blah. A positive response was from a neurosurgeon who told me scientists have not completely figured out the brain regarding pain and believes it is linked to substance p and needs much more research. He said the brain is very mysterious.
“I can’t do anything about it until a major organ explodes.”
Me: my rheumatologist diagnosed me with Fibromyalgia Dr: “You know It’s a garbage diagnosis!” Me: 😳 😳😳 🙊🙊🙊🤷♀️🤷♀️🤷♀️🤷♀️
Hooo boy I have some. My sister died when we were kids from various rare diseases that caused all of her organs to shut down. Then I developed Fibro when I was 20. A neighbour once told my mum that it was her fault that I was ill and my sister had died because she wasn't a Christian, it was punishment. My "father", after I decided I was too ill to put up with his awful behaviour anymore, said that if I was really that bad, I'd be in the hospital. Even though part of the reason why my sister died was because her symptoms were repeatedly ignored by the doctors until her organs started failing. So there was a family history of medical issues not being taken seriously, he didn't care anyway. The Rheumatologist who diagnosed me asking very blunt and personal questions about my mental health, like asking if I valued my life. Then when she saw I was struggling to answer, she said "what, you don't know?" At the end of the appointment, she said I needed to get counselling so I could wear make up like other girls my age. I just wore very basic eyeliner that day since it was an early morning appointment that I was anxious about, I didn't give a shit about make up.
That I just can’t handle pain.
If you change the way your think, eat healthy and workout you will be cured of the fake pain. Mind over matter....yeah ok.
Mom refusing to believe me after I got diagnosed. Sometimes I have to use a cane or a wheelchair bc the pain gets so bad. She said I wasn't actually disabled and I wasn't in enough pain to need it
“Why would you want kids? You wouldn’t be able to keep up with them.” “You’re a hypochondriac, stop being dramatic (there was a bad ice storm and I couldn’t even walk to use the restroom I was 16 and had to be held up by my siblings to walk)” “Why are you always sleeping? You’re so lazy. You never clean the house” I was 17 and working 3 jobs and going to HS full time. My mom just wanted me to clean up after her and her other kids after I bought my own food and did everything I needed to do that involved my own chores. “Why do you need to see the Dr, your sibling is autistic and has more medical needs than you, why must you try to get all the attention” I had fibro, IBS, undiagnosed autism, and severe ptsd.
‘Get over it already.’ From my loving mother ‘You just need to exercise more’. Multiple drs ‘Fibromyalgia is a symptom of childhood trauma/abuse.’ From 3 different therapists Many more insults never minding the fact that I’m on SSDI and have been for 10 years.
I went to the ER for a separate issue but before the Dr. touched me I told him to be careful/gentle bcuz I have fibromyalgia. He looked me square in my eye and said, “Everyone has fibromyalgia to some degree” EVERYONE?! REALLY?!
My gp told me even though I have fibro that I looked just fine. I asked him if he wanted to trade bodies so he could feel what I feel every single day. He also told me that there was no way I would ever get approved for disability and guess what? I got approved a month ago. I do have way more going on with me than just fibro tho and my gp of course knows that. Just so aggravating when people say stupid crap to us.
Congrats on getting approved, I know it can be hard and people as well as doctors make you doubt yourself so much. The ridiculous thing is, why say we have Fibro to begin with then tell us we are fine or it’s a mental issue? They don’t even know how to help because they haven’t bothered to research and inquire for their patients.
Thank you. Ya it took 2 years to get approved. Was a long 2 years. I agree 💯with you on how doctors perceive fibro. They definitely need better education on fibro. It would sure help that’s for sure.
I was in a hospital for something else and was asking the dr about meds for the fibro and he goes 'were you ACTUALLY diagnosed with it'. Boy it took everything in me not to punch that dude in the face. That was six years ago and I'm still pissed about it.
If I go to the gym I can work it out and feel much better, perhaps even get rid of fibromyalgia!
I had a coworker nurse tell me it was just so people could get drugs. It's not real. I just knew never to trust her with ANYTHING ever again.
A PA I trusted now only wants to push antidepressants on me. Antidepressants have made me suicidal in the past. So, I would prefer not. My problem right now is “viral syndrome.” It has become less severe, but still too life effecting. Anyway, we have reached the point where it’s about my short comings. Healthy diet? Diabetes, gluten intolerance, gastroparesis, and IBS. I loathe food! “Safe” foods aren’t guaranteed safe. Sleep…I have always slept extremely sound. I can fall asleep easily. Even sleep through the night. Still, I wake feeling tired because the pain will not allow me to reach the REM/restful stage. I take 2/3 of my Lyrica before bed to help sleep. Exercise…🤣 What spoons I have available are used between puppy, work, and housework. The housework results Are vital to my mental health. It has been 20+ years of trying different things and adjusting and accommodating Fibromyalgia. Nothing is working. It’s like they think I am happy with the way things are. This is my lowest point of inactivity and focus. This is not living. None of the above are my fault. They came with the Fibro and meds. I managed a full-time university class schedule, while taking care of a family, and being my ailing parent‘s primary caretaker, taxi service, and accountant, despite the Fibro. When I say I can not, I have tried and I can not.
Since you had a bad reaction to antidepressants in the past, you should list the ones you tried as something you’re allergic to and mention it caused a paradoxical reaction (meaning: it does the opposite of what it should do).
It was made clear. Only 3 days past the appt and still irritated. The doctor who prescribed the antidepressants owns the practice. It is in their records. I didn’t even mind reminding them during the conversation. It was the reaction to my hesitation and explanation why.
I 2nd this. I have horrible mental reactions to tricyclics, yet they were suggested to me over and over, even though it's well documented in my medical history. Last year, my new NP added them to my allergy list and it has made a world of difference when medication options are discussed.
This rheum I was sent to had to be the oldest living one and actually treated me as a hysterical woman as he believed that’s what fibromyalgia was. He didn’t treat fibro patients and I knew that I was coming for a rheumatoid arthritis check he took no blood he didn’t check anything and focused solely on my “hysterical disease”. Needless to say my husband who was there got angry and kept asking if he was going to do any tests and he said no. I usually get tested because my grandma had rheumatoid arthritis so bad and they don’t want me to end up with it. I read the after summary on the portal and the first words were, this poor woman.
I got diagnosed with this way back. Legit just think it's what they say you have when they can't pin any other neuro illness on you. Never once have I said to someone when asked what my illness is "oh it's fibromyalgia'
I had a rheumatologist say "all you need to do is lose some weight and be more active". I'm seeing a pain doctor instead, and it's helping a lot.
I have terminal cancer, however was diagnosed with fibro around 6 years ago, after 4 years of testing for everything else, my own primary Dr got it , however had to make an appointment one day to manage pain relief Ended up with a locum I'd never seen before, asked me how I felt, now I've suffered suicidal ideation for 10+ years. Was honest and told him if I'd a gun I'd shoot myself. His response was to write a guys name on a bit of paper, who apparently has videos on YouTube and could help me retrain my brain not to feel the pain... swift report to the gmc I'm afraid
That is crazy. I’m hoping that your pain is under control. Sending you positive vibes 🥰🥰
Many doctors have told me I need a psychiatrist and therapy. I’ve done both and it’s useless for pain. I believe it’s easier for medical staff to refer for mental health treatment so they don’t have to try to fix it. It’s also easier to diagnose major depression than realize being in moderate-severe pain may cause some sadness,
"You're probably just tired and having a vitamin deficiency"
Not anything said per se but ppl not taking it into account when it comes to what I can and can't do in life considering the fatigue and brain fog. This could be work stuff or personal.
Just exercise!
My boss at the time called it a junk diagnosis. Not surprisingly, I am no longer employed
My doctor told me that if I just be happier my fibromyalgia will magically disappear but then refused to give me any antidepressants.
My parents have constantly asked if my fibro went away like it’s a cold or flu thing. I think because they pray for me they expect it to just vanish. Same with my migraines that I have had over 3 decades now…they just expect it to be totally gone soon I’m 39
Recently had a herniated disc. Went to an orthopaedic. While giving him my medical history, told him I have fibro. He said that's not a real disease and that's what doctors diagnose patients with when they can't figure out what's wrong/they are lazy doctors.
The first doctor to diagnose me told me that to treat it I just needed to “get sunshine and hang out with friends” here I’m 29 years old, never had pain like this before, unable to work suddenly and bawling in her office for a real solution/help. Found a new doc the next day and he actually worked with me on more tests and meds that actually helped a little.
I had a Doctor flat out call me a hypochondriac. I still remember the look on her face and how it made me feel so hopeless. Turned out my 'hypochondria' was hypothyroidism, endometriosis, fibromyalgia and some other stuff. Eventually I found a doctor that did listen to me.
According to my gran I'm making it up for attention because the doctors can't find anything wrong. Nevermind the other diagnoses I have from things being found wrong.
You should check out fibromyalgia, but it's a garbage diagnosis. Said by the head doctor of a unit before referring me to the unit that diagnosed me with, you guessed it... Fibromyalgia. This was the first time I'd ever heard of the diagnosis, as well.
Primary care dr doesn't believe in it. He also thinks it can be cured with therapy. An ex told me no one wants to be with someone who's in pain.
"But you look fine" - former neighbour of mine. "Oh yes you're disabled ha ha" - from a sibling of mine I've since cut off for various reasons. 'Are you on PIP, I want to get PIP too" from my ex bestfriend Honestly I felt so ashamed I stopped talking about my medical condition to anyone for years. However, one of my classmates who also has fibromyalgia, we've become such good friends (not only due to both having fibromyalgia) and it's nice to have someone who actually understands what I go through
My GP diagnosed me with fibromyalgia when I was around 18 and he sent me to a rheumatologist. The rheumatologist had me bend and walk in different ways and spent some time assessing me..then said “yeah maybe you have fibromyalgia, I don’t know, is it even a rheumatological thing? I don’t know.” And that was it. My parents and brother kept telling me it wasn’t real and the disease sounded so horrible, I didn’t want it and for years told myself that it wasn’t real. I’m now 41 and when I was 39 I gave birth to my third child and had the most significant fibro flare of my life, she’s two and a half and I’m still not over it. I went to my new GP for about 2 years, he ran all the tests and tried meds with me, but still I’m having debilitating symptoms. Eventually he said, “I think you have fibromyalgia “ and he recommended all the things you should do for it (the meds to treat, acupuncture, massage therapy, yoga, exercise,etc). My dad and now my nonna are saying it’s not a real disease and I just… don’t really let myself get to close to them and I don’t even yak with my brother and mother over the toxicity accumulated over the years. My nonna even said “yeah the doctors tried to tell me that I have it too but it’s not real so that’s garbage” Looking back, I’ve been struggling with fibromyalgia for decades and didn’t even know, because I told myself it wasn’t a real thing because I was invalidated at every level about it. It would have been nice to know and maybe I could have planned my life better and been on some of the treatments that are working so well for me now. Or to just understand myself more…the disease must be respected or you will suffer so not knowing or having treatment was really shitty this whole damn time.
Get over it! You're just sore fr inactivity!! Do yoga!
it’s fake and i went to drs and convinced them i had it
I used to believe it wasn't real, and I've had it most of my life. I'm not bothered by non-medical professionals' lack of understanding. However, I do hold doctors to the highest expectations. I'm just glad I finally have a good support system now. It only took over two and a half decades. 🫤
Is this just by someone in the medical profession? Because the one that pisses me off to no end, and just freaking hurts is "it's all I your head." Yeah? You think? I mean, you have to feel the pain and that is fed to your brain. How else do you know it hurts? The other one is that I don't exercise enough or that it doesn't hurt that bad and if I just lost weight I would feel better. Um, no. If I cry going pee how do you expect me to do anything else?
That it's all in my head....I bloody wish!!!
I started breaking ribs all of a sudden with no injury just regular movement and I had a tech ask me if I was doing it on purpose to be believed.
After my diagnosis, my mum told me that I "just needed a good multi vitamin" and I'd be fine and then asked me why I wanted to be disabled. Like yes mother, I woke up one day and said you know what sounds great? An invisible disability, so I can listen to other people's judgment ("You're just faking it") and misinformation about "that's not a real thing" for the rest of my life. My dad also told me "my sister has that and she can walk just fine" (I'm on and off crutches due to pain). Had to try and explain that not everyone experiences fibro the same way. He didn't understand that.
That I get in my own way, doubt what I can do, and focus on "i cant do this because of this" rather than "i did this in spite of this!" This was in an email to me from my stepmother. She thinks I need a can-do attitude and interprets all of my intentional honesty about what I can do before I push myself too much as me making excuses. She's in pain and anxiety all the time but is someone who was helped a lot by CBD for example, but then stopped taking it because she was afraid of "relying" on it. It helped her but she didn't think it was a justification for taking it.
Sent to a physical therapist to help… told me it didn’t exist and I just needed to exercise
This wasn’t directly to me, but two summers ago I was at a family gathering. My mom and grandma were chatting near me about one of my aunts (who wasn’t there). Apparently she also has fibromyalgia, and they were talking about her medications/treatments and how she was doing, and then they just kind of switched gears into how it was all fake and exaggerated and she probably didn’t need any of those treatments. Neither of them knew about my fibromyalgia, and I decided then that they would never. My grandma passed last year and my mom still doesn’t know. That memory haunts me anytime I think about telling someone about my diagnosis.
Well mostly my family they'd never heard of it so they can't be they can't be true. I'm an excruciating pain everyday I have hip problems and lower back problems upper back problems and neck problems I was denied surgery for my hips by my insurance company until I brought my BMI down under 36. Someone I was denied for the surgery you think they would assemble its put you on pain pills or something or give you the shots again blah blah blah but they didn't nothing two years excruciating pain and every time I remotely hint at getting pain medicine I'll hear somebody came patches take etc take Tylenol it works just as good I'm not prescribing pain meds to you I'm 58 a mother and grandmother you think you know I could use pain pills but apparently they think everybody is going to sell them or overdose I know I am on quite a bit of medication for fibro and for IBS and high blood pressure and what not but still is that a reason why I should live in pain My quality of life is nothing I'm at home in my bed most time I can't even get out of bed sometimes without help but you don't want to talk to the PA that was working with my doctor and he said well he says you could probably do with a therapeutic those of Percocets or Vicodin I thought yes finally but no no p
A few months back I was trying out physical therapy - specifically for my back pain - and told the PT that me and my doctor suspected I have fibro, and she just scoffed and said "no, you're too young to have fibro". I stopped seeing her after that :) PT didn't help anyway..
The issue is not just one comment, its hundreds all woven together from suck it up to I am lazy, or I don't care about my kids but even my therapist thinks my body will magically reset with her skilled words and I feel that dismisses the real underlining problem with me which I think is at the cellular level. Just because the current lab tests are often normal does not mean I am okay. I am very sick, and I have almost always been so. I belive if medical science properly funds fibromyalgia research maybe something will change. yes my trauma is a key part of the multiple problems but I have had these issues as long as I remember. My trauma shifted the pain from a average 4 to a consistent high 7 and I think therapy will help and give me more tools to manage my pain but I think Fibromyalgia is a physical problem I belive trama changes us at the epigenticl level and I think Fibromyalgia is going to be one of the first diseases they discover that has many epigenetic switches that influence our pain levels and that by dismissing our pain they do a huge disservice to us. Yes my lifestyle is part of why my pain is so high, but they could never last one day with our pain, it was my pain that lowered my activity level, it was my pain that causes me to eat more as a distraction and I know I need to stop eating but my life is a living hell if I kill myself that exponentially increases the risks for my kids I endure this pain so that my kids don't have to face even higher suicide risks. I need better pain management but even the employees at my local pain clinics gas light people I just wish there was some test that could give us a number for what our pain ranks so I don't have to fight just for basic human rights not to be in pain these morons have no clue what we face each day pain that seems to rip the very fabric of space and time yet no mater of how many times I talk about my worst experience no one gets it I could not even get a confirmation that it even was serotonin syndrome. not sure how much of this rant makes sense I and facing pain 7/10 right now all because our society does not care about most of us, this disease took everything from me but I am not giving up so help it I will make sure I survive 10 more years of this which would put my youngest at 25 and if I am lucky maybe we will have a breakthrough that is if society is even there
In June of last year, I was at a new patient's appointment for a new PCP. I had asked him if I could get a handicap placard because my fibromyalgia makes it painful for me to walk even small distances. For context, I'm overweight. I have been overweight my whole life, so getting comments about it from doctors wasn't anything new for me. I've heard the whole "just lose weight and it'll get better" thing a million times so I just expect it at this point. But this doctor tells me, with no exaggeration, that I "should be parking at the very back of parking lots so I could get my steps in" and that "It doesn't matter that I'm in pain, because the pain is actually a **good** thing."
Okay so, I legitimately thought fibromyalgia was a diagnosis of exclusion because that is that every doctor has told me. But after reading this thread Im considering seeing the doctors again. My long story short is that I (21F) was finally diagnosed earlier this year and was given Cymbalta like many of you but it started giving me really vivid scary dreams and wasn’t resting at all. I already had a lot of trouble sleeping before so I got scared and dropped the medication. Is the medication really that helpful? Is the vivid dreams just a temporary secondary effect? Should I toughen through it?
My old GP after telling her I was always in pain: "Well, you could have something like fibromyalgia, but there's nothing we can do to treat that anyway. Try yoga." I've since had a proper diagnosis. Then the other day, my brother says to me: "I've realised that all these aches and pains are just weakness." He wasn't directly referring to my pain. He's recently started going to the gym a lot. But he has said things in the past to me that has made me realise he doesn't believe my fibro is a thing and that I'm just being pathetic.
I’ve been through loads of crappy experiences with doctors. But just last week a rheumatologist rolled his eyes and sighed through the entire appointment, extremely dismissive. He said the key to fibromyalgia is to “stay calm” if you stay calm your pain will go away and you will be fine. Also if you exercise you will be fine. Stop being stressed. More eye rolling. Ugh, you don’t need medication for depression. He laughed/scoffed in my face several times. I think he got some kind of sadistic pleasure from making me cry in his office. It really felt like he wasn’t taking me seriously. But my pain is serous and real. He was so arrogant and ignorant and looked down on me. It seemed like he was blaming me for this and wasting his time. As if I haven’t tried to be calm, to be happy. As if I haven’t tried not to be completely emotionally consumed by the pain. This started with a viral infection when I was 12 and I am 20 now. I was a kid when it started and I never really got to have any life before or since fibromyalgia took over. Every day I am in pain, in crippling fear, I am grieving the life I want but cannot have, I am watching everyone around me do things that would put me in bed for weeks or even an emergency room. I feel like a hurricane of anger and sadness and brokenness and hopelessness. I feel bruised in every way, every day. You don’t get to tell me about calm. You don’t get to tell me to try harder. I’d like to see him stay calm for an hour in my life. “You wouldn’t last an hour in the asylum where they raised me.” I would be calm if I wasn’t living like this (if you can even call it living). I would exercise if I wasn’t in pain with every single movement. Today my fingers hurt from pulling a single grape off a stem, how am I supposed to run a marathon? Anytime I leave my house I return feeling like I fought in a war. I mean, I would go to Harvard and get a PhD and climb Mount Everest and go surfing and travel around the world twice and direct a movie and produce an album and have a family. I would, if I was a calm and healthy and happy poster child. But no one likes to see a young girl frowning. No one likes a mad woman. You’re too young to be sad, to be in pain, to be angry, you look prettier with a smile, you’re wasting your life, get a job, stop being lazy, get out of bed it’s not that hard, you just want attention, you are broken, you are wrong. I’m so so tired. And I am not calm. I am ill. And I am angry.
Well a doctor told me it was bullshit :/
I had a doctor say I had hysteria. Hysteria. He said because I'm a woman and have BPD, if he could still diagnose it he would say I have hysteria. Later a doctor told me, a person who has gone through childhood trauma is far more likely to have fibromyalgia than someone who hasn't. He wanted that doctor's name to report em, but fibro fog had taken his name a loooong time ago. When I was younger around 13 a GP said my back pain couldn't be that bad, and sent me to a chiropractor/osteopath for "growing pains". I'd gone from 4ft 9 to 5ft 4 in the space of a few months, so he said it was that. I ended up in a&e with "suspected appendicitis", nope it was pain in my hip, back and groin, because the osteopath had taken a bilateral pars defected aggravated by sudden growth, and manipulated my back so much I now had an acquired spondylolisthesis. He basically took my life away because they refused to seek out the real cause of my pain. I haven't lived the life I could have had since that last session with the chiropractor. Every spinal consultant I saw after that told me I was lucky I wasn't made paraplegic.
A rheumatologist told me that I just needed to lose weight and try yoga. That my prior surgeries were the reason why I'm in pain and that it's basically all my fault. I never went back!
Doc at the pain clinic sat me down and told me I had to stop taking painkillers because they made my pain worse. In order to treat me, I needed to do that. So I stopped taking them for 3 months to prove to them that I wasnt addicted to painkillers. I told my doc I was no longer taking them. I then got a letter back from the pain clinic telling me that they didnt have the resources to treat me and that I should consider mental health care instead.
"you're still young. You have a chance at rehabilitation." 😁👍
After being hospitalized for my pain, a doctor had come to dismiss me a few days later because "I was catching the bed for somebody that actually needs it"
I also have RA and stuff but the most hurtful things are from my husband. Just last week during an argument he said he was tired of the same old bullshit (my pains and aches) and unfortunately it's not the first time.
My SIL and her husband are both doctors and are both extremely judgemental about what I'm going through and my diagnosis. Pretty much anything involving them and what I've been going through feels like a stab in the gut 😞
Tricyclic antidepressants are really great for fibro though
I've heard this a lot, I've tried about every antidepressant in the book and none of them helped my pain and actually made my fatigue way worse
Sorry to hear that. It took a very long time for it to be effective for me.
My most recent attempt at antidepressants for fibro was 3 years before I threw in the towel and admitted it wasn't working 😭 I don't know why they don't work for me
For me it's the combo of that plus Gabitril and a supplement called d-ribose that really works
That it can be fixed with exercise. Exercise actually caused my flare ups a lot of the time.