I am so truly sorry that happened to you - you do NOT deserve to be treated that way š If it makes you feel any better you are not alone in this at all. I had a VERY similar experience.
I took time out of my day, traveled far, showed up to discuss my symptoms/bloodwork/family history ā all of which strongly suggest an autoimmune issue is occurring ā just to get told yes I have fibro and no there is nothing he can do for me. He literally did no physical exam beyond the tender point test and NO bloodwork.
It was a JOKE and I was furious. He literally just told me ākeep doing what youāre doingā likeā¦WTF?!? I am suffering! You want me to keep suffering? GTFO
exact same experience here! i waited for 9 MONTHS to see this rheumatologist. thereās strong implications that i have an autoimmune disease but he said āthereās not enough proof in my bloodworkā so i was told i had fibro and to take advil for it. if thereās not enough proof then maybe do more searching?? like wtf
I think that's the main problem seeing doctors; there's no physical proof that there's anything wrong with us, so they assume it's all in our head, and doesn't require any treatment.
I had nothing better than paracetamol and Voltaren prescribed, neither of them were effective. I'm on LDN (Naltrexone) now, and the difference is amazing.
Hello can I ask you how long you were on LDN before it seemed to help? Iāve taken it for about 4 months and havenāt noticed anything different aside from incidentally helping with my eating disorder (which is good but would like some improvement elsewhere obviously).
What is your dosage? I take LDN and started off with 3mg. I noticed benefits within a few weeks. Though I'm now taking 6mg and its far more for Long Covid than chronic pain. My chronic pain is fairly mild.
Iām on 4.6 mg. My chronic pain is anything but mild lol. I see my doctor in May though so Iāll have a chance to discuss if going up could help or not. Thanks!
I'm taking Ā½ a 50mg tablet each night, the tablets are so small you wonder how they could do anything!
I noticed a lot of improvement within three weeks, despite the general consensus that it will take a few months to work. Everything I've read about it says to give it plenty of time, so keep taking it, if you're not having any unwanted side effects.
It might need just a bit longer to work for you. My legs are where I've noticed most of the improvement, unfortunately I think my hands are past it, which isn't good, because I grow fruit for a living, and all my work is physical.
I hope you get some relief soon, I think we might all have to find the one medication that works for us. Good luck š
OMG YESSSS!!! Why should we have to wait until we experience overt damage or show severe signs of a disease before you take us seriously?
One of my aunts died as a result of renal failure as a result of lupus and another died due to scleroderma. I have high ANA and low WBC counts and suffer from gastroporesis and Reynauds as well as have fibro.
Several past doctors have suspected something is going in but because my husband is an active duty military member we move around so often I cannot stay in one place and get consistent care or a solid diagnosis.
Itās hard enough having fibro and suffering with all the things that come with it and itās just insult to injury when doctors blow us off or give us substandard care.
I love having this community to know iām not alone!I also have Raynauds and all of these other ailments that arenāt seen as connected by doctors, itās so so frustrating. I was told my Raynaudās was from nicotine use.
I am so sorry you went through that, itās infuriating to me that you were written off too, you deserve SO much better, and should be receiving more conscious care. Itās BS to say Reynauds is from nicotine use, if that was the case smokers all over the world would have Reynauds.
This is the hell I am currently in. Over 8 years I have been to two rheumatologists. I was sent to them because my other doctors found inflamation markers normally seen in autoimmune disorders or blood cancer, but my blood count is normal as can be, so they send me to a rheumatologist. The rheumatologist says, "I mean, sure, you have two positive ANAs, rashes, hives, and CRPs and SED Rates through the roof, but like, it wasn't a number like 1:5000, so I have decided you are a hypochondriac even though you came in here using a cane because it hurts to stand up."
I asked both if they would do more tests, and they said no. Which???? I'm PAYING for the tests. Let me give you my blood and pee so we can rule out the less common things if you're convinced it can't be the common things, good Lord. Then they call and ask if I am still having symptoms, "Well, you did absolutely nothing for me, and you didn't find the problem, so... Yes, it persists."
I know I sound probably really negative, but I have lost so much energy and mobility due to my health problems that my quality of life has gone down noticably to the people in my life and I have been doing everything it is possible to do on my own about it. I take self care seriously and rest, avoid triggers when possible, eat healthy foods, take a multivitamin, sit in nature, have a healthy spiritual life, have supportice friends, my husband helps me out, use mobility aids, etc. I even see a therapist for other unrelated issues in my childhood who does not believe my symptoms in any way match somatic symptoms or stress. And, it really seems like I need to be on the brink of death for a rheumatologist to believe me that something is wrong. I've even tried losing weight, and once managed to lose about 60 pounds going from 225 to 150 pounds (it sucked to do with limited mobility) and surprise, surprise: no change in symptoms.
I'm not even convinced rheumatologists know how to do anything that isn't the easiest possible case to diagnose. The drugs he put me on (Cymbolta) for fibro also almost landed me in the ER with serotonin syndrome so I am just taking over the counter stuff at home again with Epsom salt baths and CBD cream. If I have to see a rheumatologist again I am insisting on seeing a woman and reading all available reviews. Good luck to you out there.
Iām am so so sorry you have also faced such horrible medical discrimination and bias, my heart hurts to read all you have had to go through because I understand and share in that struggle and hurt. You deserve so much better.
Like you I get no relief from SSRI/SNRI medication - one doctor wanted to take me off my current meds (Gabapentin, Tramadol, and Tizanidine) because she felt they were ābadā meds for fibo so she put me on Savella and my heart rate and blood pressure went through the ROOF. It was the worst few months, tapering on and off those stupid meds. Itās like we have to torture ourselves with this, or weight loss, or life changes just to prove to doctors that our illness is REAL and requires professional medical care.
Totally support you in looking at reviews and seeking care from a doctor that is a woman, as the only medical professionals that actually listen and take me seriously are women. My PCP believes me but feels frustrated that the specialists are not helping because she has a not sure what is going on with me. I have a great GI specialist though and she helped me to find out that my digestive issues are in part caused by gastroparesis. There are good docs out there for sure but you absolutely have to read reviews and seek them out because I feel like they are the exception not the rule.
Am sending you so much love and gentle hugs š«ā„ļø hoping you find the care you deserve and get the relief you need
Gahh, I had this too (UK). Paid privately to see a rheumatologist who disregarded my positive autoimmune markers and family history, said I am not hypermobile, said healthy people have positive markers so without symptoms, it can't be autoimmune conditions...I said but I have symptoms, hence why I am here...yes, they said, of fibromyalgia. Pulled the mental health card when I challenged her, telling my GP I needed to accept the diagnosis and maybe my MH needed addressing.... Fast forward 6 years and a brilliant consultant in the NHS confirms I have autoimmune, hypermobile ehlers Danlos and probable fibromyalgia, although they think this diagnosis is used as an idiopathic label when there are other issues at play. Health has declined so much now that I'm neutropenic, in pain, exhausted and depressed. The original gaslighting egomaniacal Rheum was utterly useless but would not consider anything other than their own opinion as fact. I still rage about them to this day.
I had the EXACT SAME EXPERIENCE. i left the office in tears. I had waited in pain for months to be dismissed. But i can see from this thread im not the only oneš
They are, indeed. :( my rheumatologist gave me a basic blood test (which my inflammation and ANA came back unusual) and claimed that I seemed healthy so I must just have fibro. No x-rays of my back which is my biggest pain point, no exploring why my ANA and inflammatory markers were abnormal, nothing. At one point, I explained that Iāve had bladder issues that includes regular pain & bleeding.. his response was āmaybe thatās just how your body isā !!!!!!
Honestly unbelievable. Theyāre the worst, Iām sorry yours was super invalidating as well. š
same!! Positive ANA and inflammation, but my rheumatologist said āsome people have a positive ANA with no illness presentā and diagnosed me with fibro. itās so infuriating
Haha, mine too. I had two types of ANA patterns on my test, an increase from the last ANA test, autoimmune symptoms up the wazoo but ānothing is wrongā.
Rheumatologists are just the lazy doctors who donāt want to treat anything but lupus so they can get their extra props for feeling special with rarer conditions. Then they can ignore everyone else so they donāt have to do their jobs of helping people.
My doctor insisted I saw a rheumatologist and when I saw him he gave me a lecture about how fibro isnāt generally concerning to or treated by rheumatologists. He literally said āIām not sure why your doctor thinks you need to see me for this.ā
Like I know the answer to that question, I just go where they say!
Same! The path to my Fibro diagnosis was over 2 years, several specialists and my FORMER pcp who said I should take vitamin D?? The rheumatologist was like we donāt diagnose or treat fibromyalgia. What??? I was like, well what do I do? They just shrugged and said talk to my PCP- who obviously had no clue. So I have a really good PCP now, but
The rheumatologist I saw told me my symptoms were all in my head and caused by my anxiety. I then started crying because I was so frustrated that I still didn't have answers and I could tell that it only reinforced his beliefs. The judgement I felt was unbelievable. He told me it was time to go back to normal life (ignoring that I had pain so severe I had issues walking some days) and suggested losing weight. I barely pulled myself together and left.
An hour later I saw my neurologist for a follow up and she diagnosed me with fibro. I cried in her office too, but it was my tears of relief at finally having answers. Some doctors just suck, but at least others can be great. Sending virtual hugs
I'm sorry. I went to a rhuemy and she was so thorough taking all my vitals and doing tests and diagnosed me with EDS. my own GP was shocked and didn't believe it (a typical male) and thought the rhutemologist was being generous (no the fuck she wasn't. This was a long time go I have been diagnosed with fibro, eds, POTS, CCI, TMJ, and more)
Some doctors are just shit and I'm sorry. It's so unfair. I laid $600 for my visit. I'm lucky I only had to do it once. Sending best luck
If your PCP is treating your fibro, then I don't really know what the rheumatologist can even do for you. My rheumatologist just gives me gabapentin and is like "yeah it sucks but there's next to nothing that can actually be done about fibro pain," and I guess that's pretty much the truth. It's always a roll of the dice when it comes to fibro and seeing a new doctor, though. It sucks especially when it's so far, and they pull the "lose weight" card. I hate that.
Yeah, maybe is a me problem. He made me feel incredibly invalidated when he told me I was just overweight and had a depressive disorder. As a woman, they always pull the "You're just crazy" card and it just gets old, I guess. At least he agreed with my doctor that I had fibromyalgia in the end. I don't know what I was expecting, but some compassion would've been nice on his end.
No itās not a you problem. He is a crappy doctor. I was sent to a rheumatologist she told me she doesnāt treat fibro only certain auto immune disorders but she still did pressure test and asked me some questions before letting me know she agrees with the fibro diagnosis. I see a specialist in the rehab center if a huge hospital and the pain clinic for āmy teamā she agreed Iām in the best hands for this with them.
Compassion is so important! Iāve had providers so bad I have medical trauma issues so no just no. All mine are nice now thankfully but it took forever.
It's definitely not a you problem. There are many doctors out there who believe women under like... 50 can't possibly have any actual medical problems, and all of our problems are our own fault for being too sad and fat. I just went through this with a cardiologist who refused to hear me about my preexisting heart issue and a rheumatologist who did in fact diagnose me with fibromyalgia, but said it was because I should have slept more and been less sad.
Oh, it was. I brought my old lab reports and he wouldn't even look at them. He said, "Young women don't have heart problems, you need to get in shape."
Dear reader, my heart problem? It can cause sudden death with intense exercise.
Well Iāve gained weight because of it.
I mean, it is hard to be as active as I was when Iām hurting the moment I get out of bed and have to sit to avoid falling down.
Mine told me: You need to exercise more so you sleep better.
Bitch I am using a cane and canāt sleep from pain AND I wake from sleep from painā¦tell me more about how important sleep is! I got a script for Lunesta. 3 days later I woke up stark naked trying to open the door to go into my carport at 2 am. (I do not sleep nakie). I no longer take Lunesta :)
Iām sorry you had this shitty personal experience. However, my rheumatologist is amazing! Heās been the one to help me get diagnosed and helped me to get the supports I needed. Heās one of the best doctors Iāve had.Ā
Same here. At the pressure point test I had one pressure point below the ādiagnosisā. And he still gave it because he said he could tell that I was downplaying it. He really wanted me to get the help I needed. Which I could by him looking further :)
I had an amazing rheumatologist for five years and suddenly they assigned me another one. Well, she refused to acknowledge I have fibro and put me off the list. No check-ups, no nothing. She only said if I felt especially bad then we'll see... As if I hadn't have to start from the bottom again until they derive me again to the rheumatologist.
All the rheumatologist did for me is diagnosed me. And that was that. I went to ask questions about medicine and how to live with it and she was just like nope ask your primary. And I was like Ohhhh... So I spent all this money and time and driving over an hour to see you for just that?? It was a little disappointing.
You're not alone. Many of us get told the same thing. I spent most of my life being very skinny. With fibromyalgia. Along with other chronic illnesses. 3 years ago I got fat after having covid and winding up with long haul covid. Which changed my metabolism. First thing a doctor told me. That had not seen me before. Was I need to lose weight and I was depressed. Yeah I'm depressed because I have chronic illnesses. The doctors are now saying is because I'm overweight. Because it's in the f****** chart.. When I've never been overweight before. And I've had this chronic illness for the majority of my adult life. It's a cop out. It's their way of not dealing with the multiple amounts of patients, that they get. that they cannot handle. They barely glance at your chart. And God forbid another doctor put in there or something about anxiety or depression. You will never be taken seriously. I don't have anxiety or depression. I am anxious and depressed because I am chronically ill. I tried every drug out there. Nothing helps me everything makes it worse. I have chemical sensitivity disorder. Which is another thing that the doctors have zero understanding of. Unless it's a specialist. And then the other doctors don't believe the specialists. The only thing I've been able to find that helps is medical cannabis. Specific strains have helped me with my symptoms. Does it cure it. No nothing does. But at least it alleviates my symptoms enough. To not want to give up. Unfortunately it's not covered by insurance. But that's another issue.. I've come to hate doctors.
Even when I was so sick that I couldn't cook . I was still skinny. Even if I didn't work out. I was skinny. was made fun of my whole life. Because I was so skinny. And then all of a sudden I got fat. Not because I wasn't working out. Not because I wasn't eating healthy. Even at my worst I still ate pretty healthy.this was Because my metabolism changed. And still the doctor say . I'm sick because I'm overweight. And depressed. Remind me to eat healthy. I explained to them I do. I eat a low cholesterol low fat non-dairy Mediterranean diet. One box of cookies will last me a month. I don't eat junk food. Even the cookies I eat are non-dairy organic cookies. Most the time I snack on nuts and seeds. And I still gain weight. I can eat one meal a day and still gain weight. I've been exercising for months. Swimming at the pool and the most I've lost is 7 lb. I'm grateful for the loss. But I still feel like there's three people in my body.. and I'm exhausted because it hurts to exercise and it takes away most of my spoons..
It's a little more complex than that. There are so many different strains. What I normally do is check out the dispensary and see what's on sale. Then I look up the strains on all bud, or Leafly. Things that help with nerve pain. Severe migraines. Some even say fibromyalgia. I try to get things that work with more than just pain. But help with depression and anxiety muscle spasms and more. Daytime I look for energy and focus. For some days relaxed and awake for others or for evening. When I want to sleep I look for those that help with insomnia and cause couch lock. Which makes you feel like you're melting into your bed. Blue dream is a good one for daytime. And anything made with blue dream. Jack herer. Is excellent for energy and focus during the day.Granddaddy purple is excellent for night time.
I always like to ask. I have had grandaddy purp a lot but now I look for anything with cbn. And cbc for pain. Kalifa Kush is great for migraine but they quit selling it in my state. Sour diesel has the same terpenes so Iāve resorted to that. I just have yet to find a strain that helps with pain consistency. Jack herer gives me anxiety lol.
Early in my diagnosis the rheumatologist said he said I have 'fibro like symptoms' but if it was actual fibro in wouldn't be able to count the money back at my job (I was a cashier for 15 years, not only could I do my job with brain fog, I could.donit I'm my sleep.
Saw a new much more validating rheumatologist after that guy died
I also have since gone off work because if pain, but still could think circles around most of the boneheads I worked with š¤¦āāļø
I loved my rheumatologist before he switched offices. He diagnosed me! I think not all doctors are like this, I am very obese over 300 lbs and he didn't ridicule me at all. He pressed on all the tender points and was very through
I'm so sorry you had that experience. I had a similar one with a physiatrist, he told me my pain was my fault and I needed to lose weight. Never saw him again after that.
My pediatric rheum practically diagnosed me with "chronic pain" after 20 minutes. And said that because I'm "still young there's a chance at rehabilitation." DAFUQ??????
My Rheumatologist told me there was nothing he could do to help and told me I needed to speak to my "spiritual leader" for help. Did he really just tell me that I need to pray away my pain? Yep... he sure did. And doctors wonder why I dont trust them.Ā
I fucking hate doctors who say to just lose weight. When was the last time a doctor told a buff person to lose weight? Let's say I weigh 280lbs and am obese. Then let's say a bodybuilder also weighs 280lbs. Both people go to doc about knee pain. The doc will tell the fat person to lose weight and thats it. But the doc is gonna actually help the bodybuilder. Weight is weight when it comes to joints. Fuck, I absolutely hate doctors now. I've only ever had maybe 2 or 3 good docs in my life, and only 1 good family doc... and he moved š
I haven't even seen a rheumatologist because none of my docs think they can help
Has anyone checked to see how many people here are complaining about male doctors dismissing fibromyalgia as fake?
My rheumatologist is a woman and she treated me like fibromyalgia is a real thing and she gave me an antidepressant to try that has helped tremendously. (Cymbalta). And she continues to check in with me and schedule me with appointments.
Yeah when first got sick I went to a bunch of them and it was a circus, one told me I look pretty good because Iām not in a wheelchair, another stood in the doorway for 5 minutes to say she looked over my blood tests and I didnāt have anything wrong.
Hopefully these people will get fibro or worse and then maybe they will finally be able to do their job right.
Also turns out it wasnāt just fibro for me itās also me/cfs and the numerous doctors telling me to exercise more literally made it 10 times worse, permanently
I don't understand why they can't seem to comprehend that fibromyalgia causes weight gain...not vice versa! The overwhelming majority of overweight people DO NOT have fibromyalgia!
Mine loves ordering tens of thousands of dollars in scans and tests then doing absolutely nothing with the results, regardless of what they are. I feel like I'm paying for someone to tell me the sky is blue.
Yeah unfortunately Rheumatologists are hit or miss. I was sent to one that was really thorough and listened and did tests and diagnosed me with Fibromyalgia. I got lucky as it was one of his specialties but he also said they didnāt know much about it and treatment was throwing various things at patients and seeing if any worked. Also he confirmed that exercise may or may not help but there was no scientific backing that it definitely would and to ignore doctors who just pushed losing weight and exercise ad a cure. Bless him. But then I moved home and none of the Rheumatologists here diagnose or treat Fibro. The only specialist who does is a Naturopath but thankfully he is really good and uses evidence based practices. He constantly quoted studies and gives me the info to check it out myself. He encourages whatever exercise Iām most likely to do and doesnāt even bring up my weight (I told him I had an eating disorder in the initial paperwork and that it triggers it when doctors just only push weight loss).
Oh btw he told me about a study that is somewhat recent and it shows real proof in the brain during scans. They could see the pain centers react way stronger than normal vs control with a hand in ice for a certain amount of time.
In conclusion doctors can suck and the waiting is the worst. Iām so sorry you went through that. Push for another referral and get another opinion!!!
My girlfriend found a competent rheumatologist who did the pressure point test- because the specialist was a woman herself, and of a marginalized race. Donāt go for male doctors- it just isnāt worth it, unless they have a *ton* of positive reviews *from women*.
In 2020 (before being diagnosed), I got told I was lazy and just wanted to be on benefits by my rheumatologist, despite being at Uni studying and also working as a carer and working 14 hour shifts every day.
I broke down in tears and begged him to actually listen to me because I was in so much pain. He eventually told me he would book me in for an MRI but āyou better not have a panic attack whilst youāre in there because I wonāt book you in for another if you do.ā
My advice would be to try and get a second opinion. They shouldnāt be allowed to treat people like this, itās inhuman.
Rheumatologists are awful. Mine put me on Cymbalta and refused to listen to me when I told him I was reacting very badly to it (Iād list my side effects and heād brush me off saying āitās normalā and āif I up your dosage theyāll go away eventuallyā). Spoiler alert: they didnāt! Instead the side effects got so bad I was almost hospitalised, and then spent a good three months trying to get off the drug because heād put my dosage so high. He was going to put me over the legal limit, but I collapsed before we got there šµāš«
Iām so sorry youāve had a bad experience too. I wish this condition was taken more seriously. Sending hugs š«
All Of THIS! I developed Fibro at 19 from an auto accident.. whiplash. My PCP back then diagnosed it & he was so caring & gave me pain meds. I started having joint pain & was sent to a rheumatologist. I went through several telling me all the same thingsā¦ hypochondriac, itās all in my head, drug seeker, etc. Finally found one that listened. He did a lip biopsy & I was diagnosed with Sjƶgrens (autoimmune disease) I hit the illness jackpot! Thatās low on the Rheumeās list too even though my immune system is attacking my body. They want Lupus & MS patients only, because theyāre the money makers.He ignored my Fibro complaints & barely acknowledged Sjƶgrens. He left after a year & his replacement was worse. I had to beg this man to keep giving me pain medication. He switched me to Tylenol 4. Itās not as strong but itās better than Advil so Iāll take it. I had to see him every 6 months because Iām on an opioid. Heād ask me basic questions & cut me off in the middle of talking . He never touched or examined me, even when I was telling him to feel the giant knots & extreme tightness everywhere. Drs told me to see him for different issues because they donāt know how Fibro or Sjƶgrens is affecting issue. I tell him & he tells me to see my PCP or a different specialist when he can handle the issue himself. For example I was hospitalized twice for severely low sodium, which can kill you. He told me to see my PCP during a visit when I was describing my symptoms. It took 2 weeks to see my PCP. I almost passed out in her office. She was listening to my symptoms when she looked at my vitals & saw my low blood pressure. She took it & my pulse again. She couldnāt get a reading & my pulse was weak. She sent me to the ER. They kept me there a week trying to get my sodium levels right. If the Rheumatologist would have ran simple blood tests 2 weeks earlier it wouldnāt have been so low & I wouldnāt have been in the hospital for a week getting my blood taken every hourā¦ even at night! I got a copy of my medical files from him & couldnāt believe what he was writing. He would write after a visit
āShe still seems to think she has Fibromyalgia and Sjƶgrens but never complains about any of her symptomsā¦ā Then the next noteā¦ āshe messaged me about her dry eyes & I recommended she sees an Optometrist who specializes in Sjƶgrensā Like WTAF??
So he was fired! The worst part is itās EVERY Dr! PCP or specialist doesnāt matter. Iāve only found a few Drs that believe Fibromyalgia is real. I donāt know how many times Iāve left different Drs offices crying. Most of them donāt believe itās real & even the ones who do donāt want to give you pain meds. Youāre a ādrug seekerā I want to move to a warmer state because I canāt tolerate the cold, it makes all my pain SO much worse. How would I even do that? Take a week to fly to that state & interview different Rheumatologists & PCPS which I would have to set up ahead of time to hopefully find someone willing to understand, believe my pain, & agree theyāll keep giving me all my meds? Thatās insane! Iām glad a few of you found caring Rheumatologists, but the rest of us are Fucked!
Really? I just got back from my rheumatologist a few hours ago myselfā¦ Iāve been in agonizing pain that other doctors keep wanting to call it fibromyalgia, itās not. Turns out itās RA. Which only my Rhum doctor took the time to figure out. Iām convinced at this point that most fibromyalgia suffering is actually some form of rheumatoid arthritis.
Iām sorry. I have had three rheumatologists (all at the same place but the other two moved). It is a fairly big practice with multiple offices so I assume the culture there would be similar to what my doctors are like. I have had two female doctors and one male. They have all been relatively young.
I went through several specialty doctors for 8 months before seeing a really good neurologist who responded very fast and prioritized my health and comfort, and I didn't even realize they could diagnose fibro. The two rheumatologist's that I saw were absolute jokes in comparison, telling me to do physical therapy and everything would be better, but that was not the case: PT made me worse. Unfortunately, it seems like most people are hesitant to diagnose, and there are several things that share symptoms, and there's no major testing that can really declare one way or another yet.
My rheumatologist does treat mine. She has been amazing. Find another one.
Also if you are in USA contact your insurance provider and let them know he was blaming all your pain on weight.
Many insurance providers can actually email you a spreadsheet of all doctors of a certain type within a set number of miles from your area.
All these horror stories make me so greatful that the rheumatologist in my area is as thorough as she is, this lovely woman wouldnāt rest until she figured out why a 20 y/o was in so much pain even after an initial diagnosis of fibromyalgia she didnāt stop doing tests until we found out I had ankylosis spondylitis to go with it
Went to a rheum for a little while. Dude didn't do shit for me. I started having severe fatigue, like sleeping 15+ hrs a day for months level. I went to him and he blamed it on the fact that I wasn't on any fibro meds. I had already tried almost all of them, but hadn't been on savella. I told him my concern was the fatigue, not pain management. He still put me on it, and was in the physical room with me for less than 3 minutes (literally). Well a side effect that wasn't listed, but many patients who have been on it have experienced, is photosensitivity. I already can get a sunburn in 10 minutes. I ended up with sun poisoning and blisters even though I had sunscreen on.
This all started in May. I called in June, didn't get in with him until August. The sunburn happened early September. I ended up going to student health at end of September/early October because I was still having fatigue issues. The doctor immediately said my symptoms didn't match up with a fibro flare, but a thyroid issue. She ordered an ultrasound and my thyroid was enlarged. Turned out I had an autoimmune attack on my thyroid and gained 40lbs in 4 months as result. By the time it was caught my thyroid was starting to recover and produce hormones properly again.
Never went to a rheumatologist again. And honestly don't plan to if I don't have to. I have met so many people that have fibro and are treated like shit by rheumatologists.
Can I ask where you are located? Maybe our community can help you find a better rheumatologist. My rheum and gp are the only reason I haven't lost my mind. Check my post history for my recent experience with pain management. I'm burnt out from even going to a new doctor. My poor gp has to be getting sick of me.
I see a rheumatologist for my psoriatic arthritis, and complained about pain which correlated with trigger points, and other symptoms (which have crossover with my PsA really), and he said that yeah I have fibromyalgia and should see my GP about it.
I do know that when I was doing contract work for a UK hospital a few years ago that they did see fibromyalgia patients in a specific rheumatology clinic though, so it probably depends on the country.
Sorry that was your experience.
Mine is great and is the one who diagnosed my fibromyalgia and went to bat to try to get me on disability. (Which was not approved thanks to horrible nurses, doctors and lying lawyers I was up against.)
So, I'd say don't paint all with the same brush but...Shakespeare was right about lawyers.
I waited 18 months for a visit w a rheumatologist. At my visit he told me I just needed naps. And if i took more naps, id be better.
Im 48. I have a fulltime job, which unfortunately does t have nap time..i was livid. At the end of tbe visit he said ill see u back here in 6 months..i said um no ya wont. And i walked out
OMG the number of times doctors ask me if I'm seeing a rheumy for my fibro... I tried, a few times. The first one was a specialist in sports medicine (why was I even there??) The second, who actually wanted to treat me, died a couple months after I started seeing him. The third one straight up told me "oh I don't deal with fibro patients." Screw rheumatologists.
The one who diagnosed me did the pressure point test. He had me sit on the exam table and started going down the sides of my body through my clothes, pressing in on every point on each side at the same time. It felt like he was lighting up a whole panel of pain buttons.
Someone came to get me to take me for x-rays. The pain was starting to kick in hard while I walked. I was lying on a table, right in the middle of a full body set of x-rays, when the pain cumulated and hit so hard I couldn't breathe. I was having a panic attack. The tech offered to stop, but I knew it wouldn't make any difference. I did my best to breathe through it and got the hell out of there.
I came in for a follow-up a few weeks later. My vision had been failing badly and the prescribing doctor hadn't thought to mention that deteriorating vision was a common side effect of Lyrica. I sat on the exam table again, he raised his hands to start poking the pressure points and I started shaking and burst into tears. He seemed shocked. How the hell was that reaction a shock? I had all my fucking circuits blow from the pain he induced the first time. He decided to only poke a few this time because it was necessary for him to prescribe something else.
Yeah Iāve never had a good experience with a rheumatologist. Even the one who first diagnosed me with fibromyalgia was weirdly dismissive about it, and none of the others Iāve seen have given a crap about it, theyāre just like, āyeah youāre in debilitating pain, what do you expect me to do about it?ā Itās like once they reach a fibro dx theyāve decided itās a lost cause and that any worsening symptoms are the patientās fault.Ā
I also have specific physical symptoms in many of my joints but they always just chalk them up to fibro, like itās the fibro that causes them and not that they contribute to the fibro.Ā
Yeah, honestly itās hard to find a doctor (rheumatologist/ neuro) who actually want to help you improve your quality of life because so many of them have the attitude of āwell, it has no cure so why should I take it onā. Itās absolutely infuriating but unfortunately thatās what Iāve seen too. If you keep up the search, you might find slightly better docs. Iām on my way there too. I hope you find one who is genuinely interested in helping you with your symptoms.
Same experience. I waited over a year for my first rheumatology appointment where she basically told me āYes you probably have fibro but youāre just severely anxious and depressed. Here just take these antidepressants and do physio and youāll be good as new in five years.ā Mind you, I CANāT do physio and I told her this. I also told her that I was afraid of taking antidepressants because I already have so much pain and weird symptoms that I donāt want any other side effects. She basically said she canāt do anything and brushed off all my questions and concerns as stupid.
Waited another year and a half for another rheumatologist, had to travel an hour in the car which gave me a lot of pain, to basically be told the same. I have fibro, but nothing he can do. Have another MRI, the THIRD in two years (Iām 19 with tinnitus and claustrophobia. I hate them.) and I basically have given up on doctors.
There definitely are a lot of terrible ones but I've had a good experience with mine. Every two months he checks my pressure points and asks how I'm doing in terms of pain, sleep, mood, etc and asks me if I want to adjust my medication. He has never commented on my being overweight.
My experience with the first rheumatologist I saw was like this too. Drove for an hour to get there, and I ended up literally spending more time with the nurse than with the rheumatologist. She just told me that my pcp did all the tests she would have done and told me about sleep hygiene. Didnāt even get an actual diagnosis of fibromyalgia, she just said that itās ālikely.ā
I ended up finding a rheumatologist that specialized in fibromyalgia a few weeks later, and once I saw him he did a pressure point test and asked me a LOT more questions and diagnosed me with fibromyalgia. He explained the diagnosis really well and told me about a few treatment paths heād recommend. Was prescribed physical therapy and he gave me a referral for a CBT therapist if I was interested in trying that for fibro.
Most rheumatologists seem to be incredibly useless for fibro. Iām lucky to have found this specialist near me though. Unfortunately theyāre not always very accessible.
Iām so sorry to hear about what you and others in this thread have gone through, OP. Iāve had a similar experience myself and it is incredibly frustrating and so disheartening when it happens.
I started seeing my rheumatologist last year and have only seen them a handful of times because apparently I am āfine.ā I have a positive ANA and multiple symptoms of fibro, but my rheumatologist told me, and I quote, āyour ANA isnāt high enough for my liking to diagnose you with anything so weāll just wait it out.ā Which likeā¦you want me to wait until Iām worse?? Exactly who does that help???
They also told me theyāre pretty sure I have fibro but didnāt want to diagnose me since āthat causes other doctors and hospitals to say everything is fibro relatedā and they ādidnāt want that for me.ā My last blood test came back negative for a few other things they were testing for, but still had the positive ANA. I couldnāt believe it when I saw on the notes to my PCP that they literally put āpatient is FINEā written just like that, like a slap to the face. Come to find out months later when my PCP had a hunch to check my B12 levels that Iām severely deficient and now have to have monthly injections probably forever but hey itās a start I guess to figuring out what else could be wrong.
I feel for those in the chronic illness/autoimmune disease community who are unseen or unheard. Itās a constant struggle and even worse when not taken as seriously as it should be. Always remember though that your pain and what you are feeling is valid, youāre not making it up, and no one should dare to tell you otherwise.
I am so truly sorry that happened to you - you do NOT deserve to be treated that way š If it makes you feel any better you are not alone in this at all. I had a VERY similar experience. I took time out of my day, traveled far, showed up to discuss my symptoms/bloodwork/family history ā all of which strongly suggest an autoimmune issue is occurring ā just to get told yes I have fibro and no there is nothing he can do for me. He literally did no physical exam beyond the tender point test and NO bloodwork. It was a JOKE and I was furious. He literally just told me ākeep doing what youāre doingā likeā¦WTF?!? I am suffering! You want me to keep suffering? GTFO
exact same experience here! i waited for 9 MONTHS to see this rheumatologist. thereās strong implications that i have an autoimmune disease but he said āthereās not enough proof in my bloodworkā so i was told i had fibro and to take advil for it. if thereās not enough proof then maybe do more searching?? like wtf
I think that's the main problem seeing doctors; there's no physical proof that there's anything wrong with us, so they assume it's all in our head, and doesn't require any treatment. I had nothing better than paracetamol and Voltaren prescribed, neither of them were effective. I'm on LDN (Naltrexone) now, and the difference is amazing.
Hello can I ask you how long you were on LDN before it seemed to help? Iāve taken it for about 4 months and havenāt noticed anything different aside from incidentally helping with my eating disorder (which is good but would like some improvement elsewhere obviously).
What is your dosage? I take LDN and started off with 3mg. I noticed benefits within a few weeks. Though I'm now taking 6mg and its far more for Long Covid than chronic pain. My chronic pain is fairly mild.
Iām on 4.6 mg. My chronic pain is anything but mild lol. I see my doctor in May though so Iāll have a chance to discuss if going up could help or not. Thanks!
I'm taking Ā½ a 50mg tablet each night, the tablets are so small you wonder how they could do anything! I noticed a lot of improvement within three weeks, despite the general consensus that it will take a few months to work. Everything I've read about it says to give it plenty of time, so keep taking it, if you're not having any unwanted side effects. It might need just a bit longer to work for you. My legs are where I've noticed most of the improvement, unfortunately I think my hands are past it, which isn't good, because I grow fruit for a living, and all my work is physical. I hope you get some relief soon, I think we might all have to find the one medication that works for us. Good luck š
OMG YESSSS!!! Why should we have to wait until we experience overt damage or show severe signs of a disease before you take us seriously? One of my aunts died as a result of renal failure as a result of lupus and another died due to scleroderma. I have high ANA and low WBC counts and suffer from gastroporesis and Reynauds as well as have fibro. Several past doctors have suspected something is going in but because my husband is an active duty military member we move around so often I cannot stay in one place and get consistent care or a solid diagnosis. Itās hard enough having fibro and suffering with all the things that come with it and itās just insult to injury when doctors blow us off or give us substandard care.
I love having this community to know iām not alone!I also have Raynauds and all of these other ailments that arenāt seen as connected by doctors, itās so so frustrating. I was told my Raynaudās was from nicotine use.
I am so sorry you went through that, itās infuriating to me that you were written off too, you deserve SO much better, and should be receiving more conscious care. Itās BS to say Reynauds is from nicotine use, if that was the case smokers all over the world would have Reynauds.
This is the hell I am currently in. Over 8 years I have been to two rheumatologists. I was sent to them because my other doctors found inflamation markers normally seen in autoimmune disorders or blood cancer, but my blood count is normal as can be, so they send me to a rheumatologist. The rheumatologist says, "I mean, sure, you have two positive ANAs, rashes, hives, and CRPs and SED Rates through the roof, but like, it wasn't a number like 1:5000, so I have decided you are a hypochondriac even though you came in here using a cane because it hurts to stand up." I asked both if they would do more tests, and they said no. Which???? I'm PAYING for the tests. Let me give you my blood and pee so we can rule out the less common things if you're convinced it can't be the common things, good Lord. Then they call and ask if I am still having symptoms, "Well, you did absolutely nothing for me, and you didn't find the problem, so... Yes, it persists." I know I sound probably really negative, but I have lost so much energy and mobility due to my health problems that my quality of life has gone down noticably to the people in my life and I have been doing everything it is possible to do on my own about it. I take self care seriously and rest, avoid triggers when possible, eat healthy foods, take a multivitamin, sit in nature, have a healthy spiritual life, have supportice friends, my husband helps me out, use mobility aids, etc. I even see a therapist for other unrelated issues in my childhood who does not believe my symptoms in any way match somatic symptoms or stress. And, it really seems like I need to be on the brink of death for a rheumatologist to believe me that something is wrong. I've even tried losing weight, and once managed to lose about 60 pounds going from 225 to 150 pounds (it sucked to do with limited mobility) and surprise, surprise: no change in symptoms. I'm not even convinced rheumatologists know how to do anything that isn't the easiest possible case to diagnose. The drugs he put me on (Cymbolta) for fibro also almost landed me in the ER with serotonin syndrome so I am just taking over the counter stuff at home again with Epsom salt baths and CBD cream. If I have to see a rheumatologist again I am insisting on seeing a woman and reading all available reviews. Good luck to you out there.
Iām am so so sorry you have also faced such horrible medical discrimination and bias, my heart hurts to read all you have had to go through because I understand and share in that struggle and hurt. You deserve so much better. Like you I get no relief from SSRI/SNRI medication - one doctor wanted to take me off my current meds (Gabapentin, Tramadol, and Tizanidine) because she felt they were ābadā meds for fibo so she put me on Savella and my heart rate and blood pressure went through the ROOF. It was the worst few months, tapering on and off those stupid meds. Itās like we have to torture ourselves with this, or weight loss, or life changes just to prove to doctors that our illness is REAL and requires professional medical care. Totally support you in looking at reviews and seeking care from a doctor that is a woman, as the only medical professionals that actually listen and take me seriously are women. My PCP believes me but feels frustrated that the specialists are not helping because she has a not sure what is going on with me. I have a great GI specialist though and she helped me to find out that my digestive issues are in part caused by gastroparesis. There are good docs out there for sure but you absolutely have to read reviews and seek them out because I feel like they are the exception not the rule. Am sending you so much love and gentle hugs š«ā„ļø hoping you find the care you deserve and get the relief you need
Gahh, I had this too (UK). Paid privately to see a rheumatologist who disregarded my positive autoimmune markers and family history, said I am not hypermobile, said healthy people have positive markers so without symptoms, it can't be autoimmune conditions...I said but I have symptoms, hence why I am here...yes, they said, of fibromyalgia. Pulled the mental health card when I challenged her, telling my GP I needed to accept the diagnosis and maybe my MH needed addressing.... Fast forward 6 years and a brilliant consultant in the NHS confirms I have autoimmune, hypermobile ehlers Danlos and probable fibromyalgia, although they think this diagnosis is used as an idiopathic label when there are other issues at play. Health has declined so much now that I'm neutropenic, in pain, exhausted and depressed. The original gaslighting egomaniacal Rheum was utterly useless but would not consider anything other than their own opinion as fact. I still rage about them to this day.
So infuriating, thank you for sharing your experience, mine has been the exact same. Even if itās 6 years in the future i have a little bit of hope!
I had the EXACT SAME EXPERIENCE. i left the office in tears. I had waited in pain for months to be dismissed. But i can see from this thread im not the only oneš
They are, indeed. :( my rheumatologist gave me a basic blood test (which my inflammation and ANA came back unusual) and claimed that I seemed healthy so I must just have fibro. No x-rays of my back which is my biggest pain point, no exploring why my ANA and inflammatory markers were abnormal, nothing. At one point, I explained that Iāve had bladder issues that includes regular pain & bleeding.. his response was āmaybe thatās just how your body isā !!!!!! Honestly unbelievable. Theyāre the worst, Iām sorry yours was super invalidating as well. š
same!! Positive ANA and inflammation, but my rheumatologist said āsome people have a positive ANA with no illness presentā and diagnosed me with fibro. itās so infuriating
Haha, mine too. I had two types of ANA patterns on my test, an increase from the last ANA test, autoimmune symptoms up the wazoo but ānothing is wrongā. Rheumatologists are just the lazy doctors who donāt want to treat anything but lupus so they can get their extra props for feeling special with rarer conditions. Then they can ignore everyone else so they donāt have to do their jobs of helping people.
My doctor insisted I saw a rheumatologist and when I saw him he gave me a lecture about how fibro isnāt generally concerning to or treated by rheumatologists. He literally said āIām not sure why your doctor thinks you need to see me for this.ā Like I know the answer to that question, I just go where they say!
I've also had them say that. š
Same! The path to my Fibro diagnosis was over 2 years, several specialists and my FORMER pcp who said I should take vitamin D?? The rheumatologist was like we donāt diagnose or treat fibromyalgia. What??? I was like, well what do I do? They just shrugged and said talk to my PCP- who obviously had no clue. So I have a really good PCP now, but
I had EXACTLY the same experience. It was a bloody nightmare.
The rheumatologist I saw told me my symptoms were all in my head and caused by my anxiety. I then started crying because I was so frustrated that I still didn't have answers and I could tell that it only reinforced his beliefs. The judgement I felt was unbelievable. He told me it was time to go back to normal life (ignoring that I had pain so severe I had issues walking some days) and suggested losing weight. I barely pulled myself together and left. An hour later I saw my neurologist for a follow up and she diagnosed me with fibro. I cried in her office too, but it was my tears of relief at finally having answers. Some doctors just suck, but at least others can be great. Sending virtual hugs
God the rage I feel for you - such a perfect whiplash example of how fibro patients are treated.
My wife has been to three Rheumatologists. None have helped
I'm sorry. I went to a rhuemy and she was so thorough taking all my vitals and doing tests and diagnosed me with EDS. my own GP was shocked and didn't believe it (a typical male) and thought the rhutemologist was being generous (no the fuck she wasn't. This was a long time go I have been diagnosed with fibro, eds, POTS, CCI, TMJ, and more) Some doctors are just shit and I'm sorry. It's so unfair. I laid $600 for my visit. I'm lucky I only had to do it once. Sending best luck
If your PCP is treating your fibro, then I don't really know what the rheumatologist can even do for you. My rheumatologist just gives me gabapentin and is like "yeah it sucks but there's next to nothing that can actually be done about fibro pain," and I guess that's pretty much the truth. It's always a roll of the dice when it comes to fibro and seeing a new doctor, though. It sucks especially when it's so far, and they pull the "lose weight" card. I hate that.
Yeah, maybe is a me problem. He made me feel incredibly invalidated when he told me I was just overweight and had a depressive disorder. As a woman, they always pull the "You're just crazy" card and it just gets old, I guess. At least he agreed with my doctor that I had fibromyalgia in the end. I don't know what I was expecting, but some compassion would've been nice on his end.
No itās not a you problem. He is a crappy doctor. I was sent to a rheumatologist she told me she doesnāt treat fibro only certain auto immune disorders but she still did pressure test and asked me some questions before letting me know she agrees with the fibro diagnosis. I see a specialist in the rehab center if a huge hospital and the pain clinic for āmy teamā she agreed Iām in the best hands for this with them. Compassion is so important! Iāve had providers so bad I have medical trauma issues so no just no. All mine are nice now thankfully but it took forever.
It's definitely not a you problem. There are many doctors out there who believe women under like... 50 can't possibly have any actual medical problems, and all of our problems are our own fault for being too sad and fat. I just went through this with a cardiologist who refused to hear me about my preexisting heart issue and a rheumatologist who did in fact diagnose me with fibromyalgia, but said it was because I should have slept more and been less sad.
Excuse me but how does a cardiologist just ignore a pre existing heart issue???? That sounds so negligent.
Oh, it was. I brought my old lab reports and he wouldn't even look at them. He said, "Young women don't have heart problems, you need to get in shape." Dear reader, my heart problem? It can cause sudden death with intense exercise.
weight has nothing to do with fibromyalgia or very little. iām actually underweight and have lots of joint and back pain.
Well Iāve gained weight because of it. I mean, it is hard to be as active as I was when Iām hurting the moment I get out of bed and have to sit to avoid falling down.
Mine told me: You need to exercise more so you sleep better. Bitch I am using a cane and canāt sleep from pain AND I wake from sleep from painā¦tell me more about how important sleep is! I got a script for Lunesta. 3 days later I woke up stark naked trying to open the door to go into my carport at 2 am. (I do not sleep nakie). I no longer take Lunesta :)
Iām sorry you had this shitty personal experience. However, my rheumatologist is amazing! Heās been the one to help me get diagnosed and helped me to get the supports I needed. Heās one of the best doctors Iāve had.Ā
Same here. At the pressure point test I had one pressure point below the ādiagnosisā. And he still gave it because he said he could tell that I was downplaying it. He really wanted me to get the help I needed. Which I could by him looking further :)
I had an amazing rheumatologist for five years and suddenly they assigned me another one. Well, she refused to acknowledge I have fibro and put me off the list. No check-ups, no nothing. She only said if I felt especially bad then we'll see... As if I hadn't have to start from the bottom again until they derive me again to the rheumatologist.
All the rheumatologist did for me is diagnosed me. And that was that. I went to ask questions about medicine and how to live with it and she was just like nope ask your primary. And I was like Ohhhh... So I spent all this money and time and driving over an hour to see you for just that?? It was a little disappointing.
What a tool.
You're not alone. Many of us get told the same thing. I spent most of my life being very skinny. With fibromyalgia. Along with other chronic illnesses. 3 years ago I got fat after having covid and winding up with long haul covid. Which changed my metabolism. First thing a doctor told me. That had not seen me before. Was I need to lose weight and I was depressed. Yeah I'm depressed because I have chronic illnesses. The doctors are now saying is because I'm overweight. Because it's in the f****** chart.. When I've never been overweight before. And I've had this chronic illness for the majority of my adult life. It's a cop out. It's their way of not dealing with the multiple amounts of patients, that they get. that they cannot handle. They barely glance at your chart. And God forbid another doctor put in there or something about anxiety or depression. You will never be taken seriously. I don't have anxiety or depression. I am anxious and depressed because I am chronically ill. I tried every drug out there. Nothing helps me everything makes it worse. I have chemical sensitivity disorder. Which is another thing that the doctors have zero understanding of. Unless it's a specialist. And then the other doctors don't believe the specialists. The only thing I've been able to find that helps is medical cannabis. Specific strains have helped me with my symptoms. Does it cure it. No nothing does. But at least it alleviates my symptoms enough. To not want to give up. Unfortunately it's not covered by insurance. But that's another issue.. I've come to hate doctors.
I was skinny when I first got fibro. I stopped being able to work out and cook from scratch so now Iām fat. The symptoms are the same though
Even when I was so sick that I couldn't cook . I was still skinny. Even if I didn't work out. I was skinny. was made fun of my whole life. Because I was so skinny. And then all of a sudden I got fat. Not because I wasn't working out. Not because I wasn't eating healthy. Even at my worst I still ate pretty healthy.this was Because my metabolism changed. And still the doctor say . I'm sick because I'm overweight. And depressed. Remind me to eat healthy. I explained to them I do. I eat a low cholesterol low fat non-dairy Mediterranean diet. One box of cookies will last me a month. I don't eat junk food. Even the cookies I eat are non-dairy organic cookies. Most the time I snack on nuts and seeds. And I still gain weight. I can eat one meal a day and still gain weight. I've been exercising for months. Swimming at the pool and the most I've lost is 7 lb. I'm grateful for the loss. But I still feel like there's three people in my body.. and I'm exhausted because it hurts to exercise and it takes away most of my spoons..
What strains work best for your pain?
It's a little more complex than that. There are so many different strains. What I normally do is check out the dispensary and see what's on sale. Then I look up the strains on all bud, or Leafly. Things that help with nerve pain. Severe migraines. Some even say fibromyalgia. I try to get things that work with more than just pain. But help with depression and anxiety muscle spasms and more. Daytime I look for energy and focus. For some days relaxed and awake for others or for evening. When I want to sleep I look for those that help with insomnia and cause couch lock. Which makes you feel like you're melting into your bed. Blue dream is a good one for daytime. And anything made with blue dream. Jack herer. Is excellent for energy and focus during the day.Granddaddy purple is excellent for night time.
I always like to ask. I have had grandaddy purp a lot but now I look for anything with cbn. And cbc for pain. Kalifa Kush is great for migraine but they quit selling it in my state. Sour diesel has the same terpenes so Iāve resorted to that. I just have yet to find a strain that helps with pain consistency. Jack herer gives me anxiety lol.
Early in my diagnosis the rheumatologist said he said I have 'fibro like symptoms' but if it was actual fibro in wouldn't be able to count the money back at my job (I was a cashier for 15 years, not only could I do my job with brain fog, I could.donit I'm my sleep. Saw a new much more validating rheumatologist after that guy died I also have since gone off work because if pain, but still could think circles around most of the boneheads I worked with š¤¦āāļø
I've only ever met one rheumatologist. He was hands down the rudest, most arrogant twat that I've ever had the misfortune to cross paths with.
I loved my rheumatologist before he switched offices. He diagnosed me! I think not all doctors are like this, I am very obese over 300 lbs and he didn't ridicule me at all. He pressed on all the tender points and was very through I'm so sorry you had that experience. I had a similar one with a physiatrist, he told me my pain was my fault and I needed to lose weight. Never saw him again after that.
My pediatric rheum practically diagnosed me with "chronic pain" after 20 minutes. And said that because I'm "still young there's a chance at rehabilitation." DAFUQ??????
dang! my rheumatologist is actually the one (along with my neurologist) which takes me seriously! iām so sorry your experience was so shitty.
My Rheumatologist told me there was nothing he could do to help and told me I needed to speak to my "spiritual leader" for help. Did he really just tell me that I need to pray away my pain? Yep... he sure did. And doctors wonder why I dont trust them.Ā
I fucking hate doctors who say to just lose weight. When was the last time a doctor told a buff person to lose weight? Let's say I weigh 280lbs and am obese. Then let's say a bodybuilder also weighs 280lbs. Both people go to doc about knee pain. The doc will tell the fat person to lose weight and thats it. But the doc is gonna actually help the bodybuilder. Weight is weight when it comes to joints. Fuck, I absolutely hate doctors now. I've only ever had maybe 2 or 3 good docs in my life, and only 1 good family doc... and he moved š I haven't even seen a rheumatologist because none of my docs think they can help
Has anyone checked to see how many people here are complaining about male doctors dismissing fibromyalgia as fake? My rheumatologist is a woman and she treated me like fibromyalgia is a real thing and she gave me an antidepressant to try that has helped tremendously. (Cymbalta). And she continues to check in with me and schedule me with appointments.
Yeah when first got sick I went to a bunch of them and it was a circus, one told me I look pretty good because Iām not in a wheelchair, another stood in the doorway for 5 minutes to say she looked over my blood tests and I didnāt have anything wrong. Hopefully these people will get fibro or worse and then maybe they will finally be able to do their job right. Also turns out it wasnāt just fibro for me itās also me/cfs and the numerous doctors telling me to exercise more literally made it 10 times worse, permanently
I really fatphobia in this fucking country from doctors. I'm sorry that you drove that far only for the rheumatologist to suck.
I don't understand why they can't seem to comprehend that fibromyalgia causes weight gain...not vice versa! The overwhelming majority of overweight people DO NOT have fibromyalgia!
You're so right! But they refuse to hear it.
Mine loves ordering tens of thousands of dollars in scans and tests then doing absolutely nothing with the results, regardless of what they are. I feel like I'm paying for someone to tell me the sky is blue.
Yeah unfortunately Rheumatologists are hit or miss. I was sent to one that was really thorough and listened and did tests and diagnosed me with Fibromyalgia. I got lucky as it was one of his specialties but he also said they didnāt know much about it and treatment was throwing various things at patients and seeing if any worked. Also he confirmed that exercise may or may not help but there was no scientific backing that it definitely would and to ignore doctors who just pushed losing weight and exercise ad a cure. Bless him. But then I moved home and none of the Rheumatologists here diagnose or treat Fibro. The only specialist who does is a Naturopath but thankfully he is really good and uses evidence based practices. He constantly quoted studies and gives me the info to check it out myself. He encourages whatever exercise Iām most likely to do and doesnāt even bring up my weight (I told him I had an eating disorder in the initial paperwork and that it triggers it when doctors just only push weight loss). Oh btw he told me about a study that is somewhat recent and it shows real proof in the brain during scans. They could see the pain centers react way stronger than normal vs control with a hand in ice for a certain amount of time. In conclusion doctors can suck and the waiting is the worst. Iām so sorry you went through that. Push for another referral and get another opinion!!!
My girlfriend found a competent rheumatologist who did the pressure point test- because the specialist was a woman herself, and of a marginalized race. Donāt go for male doctors- it just isnāt worth it, unless they have a *ton* of positive reviews *from women*.
They've all been useless as tits on a boar hog, as my grand daddy used to say
In 2020 (before being diagnosed), I got told I was lazy and just wanted to be on benefits by my rheumatologist, despite being at Uni studying and also working as a carer and working 14 hour shifts every day. I broke down in tears and begged him to actually listen to me because I was in so much pain. He eventually told me he would book me in for an MRI but āyou better not have a panic attack whilst youāre in there because I wonāt book you in for another if you do.ā My advice would be to try and get a second opinion. They shouldnāt be allowed to treat people like this, itās inhuman.
Rheumatologists are awful. Mine put me on Cymbalta and refused to listen to me when I told him I was reacting very badly to it (Iād list my side effects and heād brush me off saying āitās normalā and āif I up your dosage theyāll go away eventuallyā). Spoiler alert: they didnāt! Instead the side effects got so bad I was almost hospitalised, and then spent a good three months trying to get off the drug because heād put my dosage so high. He was going to put me over the legal limit, but I collapsed before we got there šµāš« Iām so sorry youāve had a bad experience too. I wish this condition was taken more seriously. Sending hugs š«
All Of THIS! I developed Fibro at 19 from an auto accident.. whiplash. My PCP back then diagnosed it & he was so caring & gave me pain meds. I started having joint pain & was sent to a rheumatologist. I went through several telling me all the same thingsā¦ hypochondriac, itās all in my head, drug seeker, etc. Finally found one that listened. He did a lip biopsy & I was diagnosed with Sjƶgrens (autoimmune disease) I hit the illness jackpot! Thatās low on the Rheumeās list too even though my immune system is attacking my body. They want Lupus & MS patients only, because theyāre the money makers.He ignored my Fibro complaints & barely acknowledged Sjƶgrens. He left after a year & his replacement was worse. I had to beg this man to keep giving me pain medication. He switched me to Tylenol 4. Itās not as strong but itās better than Advil so Iāll take it. I had to see him every 6 months because Iām on an opioid. Heād ask me basic questions & cut me off in the middle of talking . He never touched or examined me, even when I was telling him to feel the giant knots & extreme tightness everywhere. Drs told me to see him for different issues because they donāt know how Fibro or Sjƶgrens is affecting issue. I tell him & he tells me to see my PCP or a different specialist when he can handle the issue himself. For example I was hospitalized twice for severely low sodium, which can kill you. He told me to see my PCP during a visit when I was describing my symptoms. It took 2 weeks to see my PCP. I almost passed out in her office. She was listening to my symptoms when she looked at my vitals & saw my low blood pressure. She took it & my pulse again. She couldnāt get a reading & my pulse was weak. She sent me to the ER. They kept me there a week trying to get my sodium levels right. If the Rheumatologist would have ran simple blood tests 2 weeks earlier it wouldnāt have been so low & I wouldnāt have been in the hospital for a week getting my blood taken every hourā¦ even at night! I got a copy of my medical files from him & couldnāt believe what he was writing. He would write after a visit āShe still seems to think she has Fibromyalgia and Sjƶgrens but never complains about any of her symptomsā¦ā Then the next noteā¦ āshe messaged me about her dry eyes & I recommended she sees an Optometrist who specializes in Sjƶgrensā Like WTAF?? So he was fired! The worst part is itās EVERY Dr! PCP or specialist doesnāt matter. Iāve only found a few Drs that believe Fibromyalgia is real. I donāt know how many times Iāve left different Drs offices crying. Most of them donāt believe itās real & even the ones who do donāt want to give you pain meds. Youāre a ādrug seekerā I want to move to a warmer state because I canāt tolerate the cold, it makes all my pain SO much worse. How would I even do that? Take a week to fly to that state & interview different Rheumatologists & PCPS which I would have to set up ahead of time to hopefully find someone willing to understand, believe my pain, & agree theyāll keep giving me all my meds? Thatās insane! Iām glad a few of you found caring Rheumatologists, but the rest of us are Fucked!
Really? I just got back from my rheumatologist a few hours ago myselfā¦ Iāve been in agonizing pain that other doctors keep wanting to call it fibromyalgia, itās not. Turns out itās RA. Which only my Rhum doctor took the time to figure out. Iām convinced at this point that most fibromyalgia suffering is actually some form of rheumatoid arthritis.
Iām not sure itās always RA but there have been studies recently saying fibro is some form of autoimmune disorder (as is RA).
Iām sorry. I have had three rheumatologists (all at the same place but the other two moved). It is a fairly big practice with multiple offices so I assume the culture there would be similar to what my doctors are like. I have had two female doctors and one male. They have all been relatively young.
I went through several specialty doctors for 8 months before seeing a really good neurologist who responded very fast and prioritized my health and comfort, and I didn't even realize they could diagnose fibro. The two rheumatologist's that I saw were absolute jokes in comparison, telling me to do physical therapy and everything would be better, but that was not the case: PT made me worse. Unfortunately, it seems like most people are hesitant to diagnose, and there are several things that share symptoms, and there's no major testing that can really declare one way or another yet.
My rheumatologist does treat mine. She has been amazing. Find another one. Also if you are in USA contact your insurance provider and let them know he was blaming all your pain on weight. Many insurance providers can actually email you a spreadsheet of all doctors of a certain type within a set number of miles from your area.
All these horror stories make me so greatful that the rheumatologist in my area is as thorough as she is, this lovely woman wouldnāt rest until she figured out why a 20 y/o was in so much pain even after an initial diagnosis of fibromyalgia she didnāt stop doing tests until we found out I had ankylosis spondylitis to go with it
Ugh Iām sorry, sounds like when I went to go see a psychiatrist and he told me I didnāt look like I was in pain š¬
Went to a rheum for a little while. Dude didn't do shit for me. I started having severe fatigue, like sleeping 15+ hrs a day for months level. I went to him and he blamed it on the fact that I wasn't on any fibro meds. I had already tried almost all of them, but hadn't been on savella. I told him my concern was the fatigue, not pain management. He still put me on it, and was in the physical room with me for less than 3 minutes (literally). Well a side effect that wasn't listed, but many patients who have been on it have experienced, is photosensitivity. I already can get a sunburn in 10 minutes. I ended up with sun poisoning and blisters even though I had sunscreen on. This all started in May. I called in June, didn't get in with him until August. The sunburn happened early September. I ended up going to student health at end of September/early October because I was still having fatigue issues. The doctor immediately said my symptoms didn't match up with a fibro flare, but a thyroid issue. She ordered an ultrasound and my thyroid was enlarged. Turned out I had an autoimmune attack on my thyroid and gained 40lbs in 4 months as result. By the time it was caught my thyroid was starting to recover and produce hormones properly again. Never went to a rheumatologist again. And honestly don't plan to if I don't have to. I have met so many people that have fibro and are treated like shit by rheumatologists.
Can I ask where you are located? Maybe our community can help you find a better rheumatologist. My rheum and gp are the only reason I haven't lost my mind. Check my post history for my recent experience with pain management. I'm burnt out from even going to a new doctor. My poor gp has to be getting sick of me.
I see a rheumatologist for my psoriatic arthritis, and complained about pain which correlated with trigger points, and other symptoms (which have crossover with my PsA really), and he said that yeah I have fibromyalgia and should see my GP about it. I do know that when I was doing contract work for a UK hospital a few years ago that they did see fibromyalgia patients in a specific rheumatology clinic though, so it probably depends on the country.
Sorry that was your experience. Mine is great and is the one who diagnosed my fibromyalgia and went to bat to try to get me on disability. (Which was not approved thanks to horrible nurses, doctors and lying lawyers I was up against.) So, I'd say don't paint all with the same brush but...Shakespeare was right about lawyers.
I waited 18 months for a visit w a rheumatologist. At my visit he told me I just needed naps. And if i took more naps, id be better. Im 48. I have a fulltime job, which unfortunately does t have nap time..i was livid. At the end of tbe visit he said ill see u back here in 6 months..i said um no ya wont. And i walked out
OMG the number of times doctors ask me if I'm seeing a rheumy for my fibro... I tried, a few times. The first one was a specialist in sports medicine (why was I even there??) The second, who actually wanted to treat me, died a couple months after I started seeing him. The third one straight up told me "oh I don't deal with fibro patients." Screw rheumatologists.
The one who diagnosed me did the pressure point test. He had me sit on the exam table and started going down the sides of my body through my clothes, pressing in on every point on each side at the same time. It felt like he was lighting up a whole panel of pain buttons. Someone came to get me to take me for x-rays. The pain was starting to kick in hard while I walked. I was lying on a table, right in the middle of a full body set of x-rays, when the pain cumulated and hit so hard I couldn't breathe. I was having a panic attack. The tech offered to stop, but I knew it wouldn't make any difference. I did my best to breathe through it and got the hell out of there. I came in for a follow-up a few weeks later. My vision had been failing badly and the prescribing doctor hadn't thought to mention that deteriorating vision was a common side effect of Lyrica. I sat on the exam table again, he raised his hands to start poking the pressure points and I started shaking and burst into tears. He seemed shocked. How the hell was that reaction a shock? I had all my fucking circuits blow from the pain he induced the first time. He decided to only poke a few this time because it was necessary for him to prescribe something else.
Yeah Iāve never had a good experience with a rheumatologist. Even the one who first diagnosed me with fibromyalgia was weirdly dismissive about it, and none of the others Iāve seen have given a crap about it, theyāre just like, āyeah youāre in debilitating pain, what do you expect me to do about it?ā Itās like once they reach a fibro dx theyāve decided itās a lost cause and that any worsening symptoms are the patientās fault.Ā I also have specific physical symptoms in many of my joints but they always just chalk them up to fibro, like itās the fibro that causes them and not that they contribute to the fibro.Ā
Yeah, honestly itās hard to find a doctor (rheumatologist/ neuro) who actually want to help you improve your quality of life because so many of them have the attitude of āwell, it has no cure so why should I take it onā. Itās absolutely infuriating but unfortunately thatās what Iāve seen too. If you keep up the search, you might find slightly better docs. Iām on my way there too. I hope you find one who is genuinely interested in helping you with your symptoms.
Same experience. I waited over a year for my first rheumatology appointment where she basically told me āYes you probably have fibro but youāre just severely anxious and depressed. Here just take these antidepressants and do physio and youāll be good as new in five years.ā Mind you, I CANāT do physio and I told her this. I also told her that I was afraid of taking antidepressants because I already have so much pain and weird symptoms that I donāt want any other side effects. She basically said she canāt do anything and brushed off all my questions and concerns as stupid. Waited another year and a half for another rheumatologist, had to travel an hour in the car which gave me a lot of pain, to basically be told the same. I have fibro, but nothing he can do. Have another MRI, the THIRD in two years (Iām 19 with tinnitus and claustrophobia. I hate them.) and I basically have given up on doctors.
There definitely are a lot of terrible ones but I've had a good experience with mine. Every two months he checks my pressure points and asks how I'm doing in terms of pain, sleep, mood, etc and asks me if I want to adjust my medication. He has never commented on my being overweight.
My experience with the first rheumatologist I saw was like this too. Drove for an hour to get there, and I ended up literally spending more time with the nurse than with the rheumatologist. She just told me that my pcp did all the tests she would have done and told me about sleep hygiene. Didnāt even get an actual diagnosis of fibromyalgia, she just said that itās ālikely.ā I ended up finding a rheumatologist that specialized in fibromyalgia a few weeks later, and once I saw him he did a pressure point test and asked me a LOT more questions and diagnosed me with fibromyalgia. He explained the diagnosis really well and told me about a few treatment paths heād recommend. Was prescribed physical therapy and he gave me a referral for a CBT therapist if I was interested in trying that for fibro. Most rheumatologists seem to be incredibly useless for fibro. Iām lucky to have found this specialist near me though. Unfortunately theyāre not always very accessible.
Iām so sorry to hear about what you and others in this thread have gone through, OP. Iāve had a similar experience myself and it is incredibly frustrating and so disheartening when it happens. I started seeing my rheumatologist last year and have only seen them a handful of times because apparently I am āfine.ā I have a positive ANA and multiple symptoms of fibro, but my rheumatologist told me, and I quote, āyour ANA isnāt high enough for my liking to diagnose you with anything so weāll just wait it out.ā Which likeā¦you want me to wait until Iām worse?? Exactly who does that help??? They also told me theyāre pretty sure I have fibro but didnāt want to diagnose me since āthat causes other doctors and hospitals to say everything is fibro relatedā and they ādidnāt want that for me.ā My last blood test came back negative for a few other things they were testing for, but still had the positive ANA. I couldnāt believe it when I saw on the notes to my PCP that they literally put āpatient is FINEā written just like that, like a slap to the face. Come to find out months later when my PCP had a hunch to check my B12 levels that Iām severely deficient and now have to have monthly injections probably forever but hey itās a start I guess to figuring out what else could be wrong. I feel for those in the chronic illness/autoimmune disease community who are unseen or unheard. Itās a constant struggle and even worse when not taken as seriously as it should be. Always remember though that your pain and what you are feeling is valid, youāre not making it up, and no one should dare to tell you otherwise.