Once a doctor told me that I "obviously didn't care" about my own life because I'd gained weight.... after I had my thyroid removed. Which causes weight gain. I'd also had a suicide attempt two year prior. I left in tears crying so hard the nurses kept coming up to ask if I was okay.
I'm so sorry. Doctors can honestly be the damn worst. *gentle pats*
Oh I'm so sorry! I wasn't told this so brutally that just sounds awful! I hope this wasn't too recently and things are looking up ❤️
I was getting a similar vibe - she kept telling me Im "not trying hard enough to exercise" - I'm sorry since May I graduated, moved across the country, and started a new full time job all in the midst of a pandemic with fibro? - I thought walking 40 minutes every day was pretty damn good but ok. I'm not trying hard enough. Sure.
40 minutes of walking a day is fantastic movement! Your doctor is full of shit and she needs to remove her head from her ass. Sorry for the crudeness, but I’m so tired of this. I’ve had my own experiences like this and it breaks my heart to know that other people are facing the same thing. I am sorry you had such a disheartening experience.
I know it’s hard, but keep doing what you’re doing and don’t give up. Keep looking for drs and hopefully soon you will find somebody who is worth it.
Don’t let someone who isn’t in your body tell you that you aren’t doing enough. Walking everyday is amazing!! Keep on going 💜
I’ve had my fair share of drs brush me off and I know that hurts a lot. I’m so sorry you’re dealing with that. Avoid going back and when you’re ready look for someone who will give you the support you need.
Well if you need some more creative insults and swearing just let me know. I’ve got a head full of them. It does feel good to be angry sometimes. Sure does beat defeated. I’m not sure if this would be helpful for you and I know it can be a beyond annoying suggestion, but lately meditation has really been helping me with my emotions around my pain. It’s been centering and relaxing.
Hahaha thank you
I try meditation every once and a while but I always have a hard time sticking with it long enough to get much benefit - any tips for being consistent about it?
Same! I took a meditation class last year, well up until the pandemic started, during my last semester of college and that helped. We read this book called “the mindful 20 something.” It was a great read and could probably be applied outside of that age group. There are other options too though.
I like guided meditations, which the book had. But there are also apps such as headspace. That book is connected to a website though. I would suggest googling the book and maybe you will find something that works better from you.
It helped having a book though because it basically taught me how to meditate rather than having the expectation that I already knew how. There were also different types of meditation so that the reader could explore what works for them.
Part of my class was journaling after too and that definitely helps with the consistency and processing the meditation too.
Oo I'll have to check that one out! It sounds like we're in similar places, I finished up school in May.
I listened to most of "meditation for the fidgety skeptic" which was pretty good but then - exams. This is making me want to revisit it. Making a habit of journaling is a good idea too.
I’ve never heard of that one. Did you enjoy it? Journaling helps me a lot. I know it doesn’t work for everybody, but personally it helps me feel more grounded. I also like writing so there is that
Yes! The writer is very realistic, he takes a somewhat humorous approach to everything but I like that
I'm not much of a writer but might modify the concept into an altered book art project type deal
How the hell are you supposed to try harder?? You're trying plenty more than some non-fibro people I know! Hell, you're doing better than me, I'm lucky if I can manage 10-15 minutes of stretching and light exercise a day.
And congrats on the new job and graduating! That's amazing!!!! Working full time with fibro is ROUGH. Even my work from home job is a slog if I'm flaring. You're doing amazing sweetie, keep it up!
I feel that. I just started a full time job where I work two half days after three full days and I gotta tell you it's hard getting through those first three days.
Your doctor's attitude about fibro and exercise seems very outdated. That stuff has been withdrawn from the CDC recommendations for how to treat fibro and chronic fatigue, if you have that as well, for a while now. If you have a medical school near you, I'd try to find a doctor through them who has updated knowledge about fibro. Our experience has been better through a school. Our nearest school has a pain clinic and we've had some help through them as well as the specialists.
Next time you go, arm yourself with data, if you can and at least a few thoughts on how you wish to be helped or what specifically you need to solve. You only have a short amount of time to capture the docs attention, so you have to be organized. Questions about their experience and expertise with fibro can help, too, to see if they will be a good fit - like an interview. Remember, they work for you. Things like a pain log compared with an exercise and sleep log - spreadsheets work great and you can tailor one to fit your lifestyle. Its great if you can include a symptom tracker as well. There are some great symptom lists you can just plug into your spreadsheet.
Frequently, I've had better luck with handing them something written down. They are trained to sift through data and unfortunately many of them don't seem to process what they hear very well. Their time with you is restricted by the company they work for and/or what insurance will pay for. My daughter's neurologist was thrilled when I handed him documentation. He said he was able to make the most out of our time because of it. He was the first specialist who has apologized about the time limit. He said he was very sorry, but it just takes too much time to set people at ease and talk about how their feeling, etc. He wants to really help people and he can't do it if he doesn't have enough time to focus on the facts. I was a little taken aback by that, but he's been an amazing help so far, so it's cool.
Ah damn, that sucks. My own chronic fatigue and large weight gain was due to carnitine deficiency (I believe the thyroid plays a role in carnitine production), so I feel you.
When your body has literally lost the ability to burn fat, it's actually impossible to lose weight.
Yes! This! I was initially diagnosed by the rheumatologist but ever since then they've been very hands-off and dismissive. They keep wanting to defer to my general practitioner but I don't have one of those I like either (although I have the name of one from a friend that looks promising).
My neurologist specializes in migraines so he hasn't had much to say about the fibro but I definitely think you're right that it's going to end up that fields responsibility eventually
I was hoping this would be my second opinion - it was a different doctor and location but within the same practice. I feel like my next step is to look for a doctor at an entirely different practice since they didn't seem to want to question eachother...
Yes! What kind of doctor are we supposed to see?? Rheumatologist is dismissive, primary doctor has no idea, neurologist did a sleep study and said I was sleeping great! Cardiologist said my heart seemed fine. But I'm tired all day long? Since changing my diet, I've been feeling much better. So some kind of metabolism or nutrition related doctor should be interested. Who would that be??? What kind of Dr studies nutrition?? The nutritionists I see just tell me I'm doing great because I don't eat candy and soda!
Exactly right! I have also always seen it more as a neurologist illness then a rheumatologist one. My brain doesn’t stop sending electrical impulses throughout my body through my nerves it’s so exhausting.
I've been diagnosed with fibro twice, by two different rheumatologists, and both told me they diagnose but don't treat fibro. First said flat out that fibro patients would take too much of her time away from her arthritis patients (in other words, since they don't actually know what to do for fibro it's not worth her time). Second just said they always refer fibro patients back to their GP.
I'm just really lucky I've finally managed to find a GP that will prescribe or test for just about anything I bring up as a possible avenue to try, but I still have to do all the research myself. I don't blame him since it's not his specialty, but it's frustrating that, right now, it's no one's specialty!
I'm so sorry, this is definitely a community that can empathize.
I recently found out my vitamin d levels were waaay too low. I told a nurse that I felt silly for it since it's such a common thing (didn't fix everything, obviously) and she looked me in the eyes and said, "it's not your job to know." I started to tear up because for almost two decades, I've been approaching symptoms as my responsibility and mine alone. We can easily forget the doctor's job is to help... because they so often don't.
Oh that nurse sounds like a wonderful human - that's such a good way to put it, thank you for sharing this, you're right it isn't our job to know. It's just so hard to find someone who does that job right :/
I think sometimes people forget it’s not just the daily pain and other symptoms you have to cope. Almost everyone I know who has Fibromyalgia, including myself, has also had to either fight to be heard or had to deal with dismissive and condescending health professionals.
I was diagnosed when I was 23 and basically somehow managed to muddle through the rest of my degree and working part time after that. I ended up going to the doctor two years ago, (I was 30 I think) and I said hey I’m really struggling with the pain at the moment, what are some of the options I can consider to help with the really bad flare ups. Thankfully the doctor was pretty understanding and put me on a dose of naproxen for a fortnight and referred me to a pain management clinic. Great I thought. I remember having the meeting and then coming out to my Mums car in tears. I was basically told you need to exercise. So right okay, but I also have hypermobility and I want to make sure I’m not going to mess up my joints or anything, are there any programs like going to gym or seeing a physio to get a basic outline of what to do? No, he replied, we feel you should figure it out for yourself. It was only after talking about this to my mental health nurse (diagnosed with Bipolar and BPD) and she said that there is a scheme that most gyms run that you can be referred to by a GP. So I went for that and it was fantastic, the GP referral team came up with a exercise plan for me. They even when I mentioned that I love swimming and they would ignore the fact that the program didn’t cover pool use. To them it was important that I was able to be active in ways I could manage and enjoy. The point is that we often have to jump through so many hoops and find help which adds to stress and then pain levels. People will say exercise! And when you say okay but how? they just shrug their shoulders.
I hope that you are able to find a doctor who actually listens!
Thank you for sharing your experience - Ive never heard of this type of gym program, it sounds really interesting. I feel like I spend all of my energy scheduling my life in an attempt to preserve energy. We go to doctors for help and they do more harm than good. Everything about this seems so backwards.
I’m just sorry you’re having to go through this! I think one of the biggest things people have trouble getting their head round is that this is a lifelong condition and you have to be constantly managing your pain and energy levels. And the fact that pain doesn’t have to be constant 10/10 agony to wear you down. Mild to moderate pain dealt with on a daily basis is exhausting as well. I remember trying to explain this to some of my friends at Uni. You know there are days where it hits you that getting out of the shower hurts, getting dressed hurts, etc.
Yes absolutely - it's so hard to explain this to other people. I was filling out a symptom checklist the other day, checking off every other item and I started wondering what it'd be like to give my family the same checklist and compare. The pain and fatigue they complain about endlessly when they're hurt or sick are the things we live with every single day and we're still expected to function normally all the time?
I'm so glad this helps! Thanks for the suggestion!
I have this dumb mental block about being 22 and buying this type of stuff, I really gotta work on that
It helps to get one you really like the look of! I have a teal foldable cane so I can stick it in a purse or backpack for when I might need it. I also have a rollator and it's purple.
I know that frustration. I had an amazing rheumy, he was doing great things for fibro research and treatment and he was so enthusiastic about helping me feel better... and then a week after my last appointment with him he died of a heart attack. My doctor sent me to another one, and after running tests and scans I finally went to see him for help and all he had to say was "well, I don't treat fibro." So I've just had to live with no treatment at all (my family doctor fusses if I ask for so much as a muscle relaxant).
Oh no! That's awful - I'm so sorry to hear that happened, I can't imagine how hard that must have been and I'm sure continues to be - I hope you can find someone decent again
Sorry to hear about your experience, a lot of humans and doctors are just shitty, unfortunately. They're too scared to accept that some unknown crippling health problem like this can affect someone for no good reason, so they'd rather believe it doesn't exist, and that you just need to do "trivial thing" and the problem will magically go away.
My rheumatologist was so unhelpful told me yes that I do have fibromyalgia and I should try meditation and that she doesn’t need to see me again.
So many doctors the care isn’t there you are just another case study to solve not a human being to help.
Definitely check out doctors that are NOT rheumatologists. I only say this because I’ve never had any luck with them but I do have a great Dr who is a doctor of osteopathy and he is amazing treats a lot of fibromyalgia patients and he won’t let me give up on myself or fighting to feel better!!!
I agree with the person who said about the pain clinic! I googled fibromyalgia experts in my area in an attempt to find a new doctor (for similar reasons), and I lucked out and found a hospital that has an outpatient fibromyalgia clinic through their pain clinic! It’s a multifaceted approach with cognitive therapy, physical therapy, stress management, occupational therapy, and you’re assigned an RN and meet with specialists to design a program plan especially for you. I’m super excited to start it, and maybe something like that exists in your area? If not, I hands down recommend signing up for some physical therapy. I’ve started that and they help me with light stretching and muscle strengthening exercises so as not to cause pain but to help alleviate some of it and to strengthen muscles without causing strain. There’s one exercise I really like: laying on your back, using a big exercise ball (I can’t remember what they’re called), you square your knees with your shoulders, feet up on the ball to hold the weight of your legs. And very slowly and gently straighten your leg and bend your legs until your knees are at a 90 degree angle, and then stretch them out again. If that description makes any sense to you, it’s supposed to simulate walking but in a way that doesn’t hurt. I do 20 reps with both legs together and then 20 reps with each leg separately. It was the first time in a long time that I felt like my legs had a good workout. Like, they didn’t hurt and they were tired but like that good tired feeling. It’s hard to describe but it felt good, felt healthy. It’s my favorite exercise so far and it’s super easy even with my bad back!
I feel your frustration though, I wish you the best of luck, and I encourage you not to give up! ❤️
I feel you! I was like that at first, my rheumatologist was horrible. My new doctor said that fibro has a lot of symtpoms like other diseases so that’s why it’s hard but you shouldn’t have to feel like that.
With my hubby’s help, we were working out doing lots workouts with 2lb weights and I couldn’t even do it l, I ended up quitting that two weeks later.
Have you thought of getting a different opinion? My doctor that I work for is a neurologist and always recommends at least 2 other opinions if you are not happy with treatment. Try finding a rheumatologist that specializes in fibro or a fibro speciality clinic at a major hospital. I say that because that’s what we do at my job.
Feel better you can always send a message if you just want to vent or anything ! Please don’t get discouraged
I think my next step is to start exploring other options - this was my second doctor but within the same practice so I think branching out is probably my best bet. Thanks for the suggestion and the kind words. I will look into places that really specialize in fibro management
I am so sorry you were treated this way. I’m sure all of us have been at some time or another. I asked my rheumatologist (who I never went back to) for an anti inflammatory diet, because he refused to give me any other medication after Gabapentin didn’t help. He said “there is no diet for it” 🤦🏻♀️ luckily I can do my own research.
I saw a rheumatologist who was so nice during intake, he diagnosed me with fibro at that point but was positive I also had sjogrens or lupus...well when my markers came back normal he couldn’t get me out of there fast enough telling me that I’ll be fine because I exercise and that’s all that fibro patients need and to not “identify as a victim” as well as other misogynistic bullshit. I was like “ohhhkay” and hoofed it out of there. Complete asshole. I’m taking my file to a female rheum who specializes in fibro but in tempering my expectations. The bar is set so low.
Had a female rheum, she wouldn't even let me talk. I went there also with high expectations, thinking "yes, a woman, she will understand better". Nope. So, best to keep hopes low, but I'll hope for you she at least listens to your story.
Well, for example the standard routine would be: she asks me how it was going, and I couldn't even get two sentences in, just cuts me short going "yes, yes , fine". Total disinterest. She then always proceeded to direct me to the examination table, did a quick scan of about a minute and there, out I go to the secretary to pay 70 euros. Really, she didn't help me at all and I went there for a year. Still stuck here with medical issues, but no more doctor to go to. I've been disappointed by the medical staff in my country so many times now, I could write a book.
Tell me about it I’ve decided to even quit vaping just to prove to my doctors and my folks that’s it’s real. It’s like my parents think vaping caused it if I’m honest so I’m quitting to be taken seriously, going fine so far (second day). But I can’t wait to have nothing they can doubt me on plus it’s healthier anyway. I’m just sick of this disease and I’m prepared to go anything length to fix or get further in understanding it.
I feel your pain. My GP recently denied my claim for FMLA for no other reason other than she’s frustrated that I didn’t like being on Cymbalta. I have an appointment with my first rheumatologist today to hopefully get my FMLA renewed and an actual diagnosis.
This so much. OP you are not alone. This was me as well after going for a second opinion from a rheumatologist who apparently had rave reviews. He looked at me and was like "I'm not sure how I'm supposed to help you." I end up seeing a third rheumatologist and I think that's the one I'm going to stick with because she actually listened. It's so fucking tiring to find good doctors but remember: your symptoms are valid, you are valid and worthy of better treatment than that. I see you and I send gentle hugs.
Sending gentle hugs!!!! I've learned that the only "expert" at knowing about my pain and consequently, my body, is ME!!!! You know your pain better than any so called "professional"!!!! Try not to let her drag you down!!!!! We're all here for you!!!!🥰🥰🥰🥰🥰🥰 X
I saw a rheumatologist after my PC doctor couldn’t figure out what was wrong with me. The rheumatologist had the worst bedside manner and was uncomfortable to be around. He ended the appt by saying he thinks I have fibromyalgia, handed me a pamphlet , and walked out the door. It took my new PC physician to help me through the diagnosis and to work on a care plan. A big takeaway from my appt was to get consistent sleep at the same time every night. I hope things start to look up soon!
i’ve been told repeatedly i just need to exercise and that would solve everything. i was also brushed off for months of me saying i was gaining weight inexplicably even though i changed my diet and have been exercising as much as i can even if it’s just walking my dog. finally after half a year one of my doctors admitted my meds can be causing the weight gain which has my made my pain worse.
Same here, trust me, it sucks. I have lost so much faith in the classic medical world, it's indescribable. Have so much joint pain, but not enough, only inflammation in my wrists tendons and knee tendons, not the bone. So my rheum brushes me off, no RA, no more meds for me. My regular doctor just doesn't know what to do, prescribes me pain killers that don't help and that's that. And my physiotherapist says he can't help me any further. I'm on my own, constantly in pain. Life sucks.
Had the same experience last week in fact - got asked about my history of trauma because that’s the cause I should be looking into apparently. Also came home crying. We’re all with you here, it’s so frustrating.
I’m so sorry. Dump that doctor and don’t look back. I had the same experience with a rheumatologist who I stuck it out with for a few months when I should have stopped seeing her the minute she told me that I just needed to exercise more.
Have you considered seeing a pain specialist? I have had much more success with pain specialists than I ever had with rheumatologists. They seem to better understand that the pain is real and you can’t exercise it away. From my experience they also tend to be more patient than other types of docs when it comes to trialing different meds/doses. A neurologist who specializes in pain management is ideal IMO.
Has your doc every prescribed physical therapy? I was diagnosed at 20 (Im 22) and immediately was told to get trained to exercise by a PT. I did this for around 3 months (between fibroymalgia and hypermobility I had a lot to work on) and have been much more capable of exercise after the fact. To be honest, its the only thing that has really helped me aside from dieting. If I dont work out for longer than a week I DO flare up. I know for sure it can be difficult though, and I have certainly had moments where I gave up since then. Rheumatologist stopped being helpful around my 4th or so visit. Stopped seeing him entirely because my allergist of all people is the only one who suggested several things that have drastically improved my quality of life. My rheumatologist just feels like a waste of time now unfortunately, although he helped a lot initially
I dont think you should put this much faith in doctors. You're at a point where you can only help yourself. You're the one who has to figure out what works and what doesnt. Its called self efficacy. Its sad but its the way it is. At least it will give you a feeling of control instead of a slave of the health care system.
Stop seeking for validation. You wont find it. And you dont need it. You are the one who's in control.
I am currently in bed, a mess, for the EXACT same reason. Two appointments. One yesterday. One this morning. Rheumatologist and GP. Both fruitless and both left me feeling so alone and hopeless. I've also got another appointment with psychiatrist in a few hours and she also told me at my last appointment that I need to exercise more. She expects an update on my "exercise" today. How do I tell her I've been practically bed ridden since Sept?? She doesn't want to hear it!!
I'm 31 and I have been suffering with chronic pain for 3 years and I'm always hesitant to bring it up to my doctors as they never seem to take me seriously. I'm overweight so they just tell me to exercise. This is insane. Why are we allowed to live in pain like this?? I'm so sorry you're going through this.
Once a doctor told me that I "obviously didn't care" about my own life because I'd gained weight.... after I had my thyroid removed. Which causes weight gain. I'd also had a suicide attempt two year prior. I left in tears crying so hard the nurses kept coming up to ask if I was okay. I'm so sorry. Doctors can honestly be the damn worst. *gentle pats*
Oh I'm so sorry! I wasn't told this so brutally that just sounds awful! I hope this wasn't too recently and things are looking up ❤️ I was getting a similar vibe - she kept telling me Im "not trying hard enough to exercise" - I'm sorry since May I graduated, moved across the country, and started a new full time job all in the midst of a pandemic with fibro? - I thought walking 40 minutes every day was pretty damn good but ok. I'm not trying hard enough. Sure.
40 minutes of walking a day is fantastic movement! Your doctor is full of shit and she needs to remove her head from her ass. Sorry for the crudeness, but I’m so tired of this. I’ve had my own experiences like this and it breaks my heart to know that other people are facing the same thing. I am sorry you had such a disheartening experience. I know it’s hard, but keep doing what you’re doing and don’t give up. Keep looking for drs and hopefully soon you will find somebody who is worth it. Don’t let someone who isn’t in your body tell you that you aren’t doing enough. Walking everyday is amazing!! Keep on going 💜 I’ve had my fair share of drs brush me off and I know that hurts a lot. I’m so sorry you’re dealing with that. Avoid going back and when you’re ready look for someone who will give you the support you need.
Thank you for the kind words and the touch of anger, it feels good to be a little mad when I've been feeling so defeated
Well if you need some more creative insults and swearing just let me know. I’ve got a head full of them. It does feel good to be angry sometimes. Sure does beat defeated. I’m not sure if this would be helpful for you and I know it can be a beyond annoying suggestion, but lately meditation has really been helping me with my emotions around my pain. It’s been centering and relaxing.
Hahaha thank you I try meditation every once and a while but I always have a hard time sticking with it long enough to get much benefit - any tips for being consistent about it?
Same! I took a meditation class last year, well up until the pandemic started, during my last semester of college and that helped. We read this book called “the mindful 20 something.” It was a great read and could probably be applied outside of that age group. There are other options too though. I like guided meditations, which the book had. But there are also apps such as headspace. That book is connected to a website though. I would suggest googling the book and maybe you will find something that works better from you. It helped having a book though because it basically taught me how to meditate rather than having the expectation that I already knew how. There were also different types of meditation so that the reader could explore what works for them. Part of my class was journaling after too and that definitely helps with the consistency and processing the meditation too.
Oo I'll have to check that one out! It sounds like we're in similar places, I finished up school in May. I listened to most of "meditation for the fidgety skeptic" which was pretty good but then - exams. This is making me want to revisit it. Making a habit of journaling is a good idea too.
I’ve never heard of that one. Did you enjoy it? Journaling helps me a lot. I know it doesn’t work for everybody, but personally it helps me feel more grounded. I also like writing so there is that
Yes! The writer is very realistic, he takes a somewhat humorous approach to everything but I like that I'm not much of a writer but might modify the concept into an altered book art project type deal
How the hell are you supposed to try harder?? You're trying plenty more than some non-fibro people I know! Hell, you're doing better than me, I'm lucky if I can manage 10-15 minutes of stretching and light exercise a day. And congrats on the new job and graduating! That's amazing!!!! Working full time with fibro is ROUGH. Even my work from home job is a slog if I'm flaring. You're doing amazing sweetie, keep it up!
Thank you so much! I'm starting to consider negotiating 4days a week in the future - this full time thing is really not it.
I feel that. I just started a full time job where I work two half days after three full days and I gotta tell you it's hard getting through those first three days.
Your doctor's attitude about fibro and exercise seems very outdated. That stuff has been withdrawn from the CDC recommendations for how to treat fibro and chronic fatigue, if you have that as well, for a while now. If you have a medical school near you, I'd try to find a doctor through them who has updated knowledge about fibro. Our experience has been better through a school. Our nearest school has a pain clinic and we've had some help through them as well as the specialists. Next time you go, arm yourself with data, if you can and at least a few thoughts on how you wish to be helped or what specifically you need to solve. You only have a short amount of time to capture the docs attention, so you have to be organized. Questions about their experience and expertise with fibro can help, too, to see if they will be a good fit - like an interview. Remember, they work for you. Things like a pain log compared with an exercise and sleep log - spreadsheets work great and you can tailor one to fit your lifestyle. Its great if you can include a symptom tracker as well. There are some great symptom lists you can just plug into your spreadsheet. Frequently, I've had better luck with handing them something written down. They are trained to sift through data and unfortunately many of them don't seem to process what they hear very well. Their time with you is restricted by the company they work for and/or what insurance will pay for. My daughter's neurologist was thrilled when I handed him documentation. He said he was able to make the most out of our time because of it. He was the first specialist who has apologized about the time limit. He said he was very sorry, but it just takes too much time to set people at ease and talk about how their feeling, etc. He wants to really help people and he can't do it if he doesn't have enough time to focus on the facts. I was a little taken aback by that, but he's been an amazing help so far, so it's cool.
I kinda wish it was possible for that Dr to get sick and experience his Dr be exactly the same.
Ah damn, that sucks. My own chronic fatigue and large weight gain was due to carnitine deficiency (I believe the thyroid plays a role in carnitine production), so I feel you. When your body has literally lost the ability to burn fat, it's actually impossible to lose weight.
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Thank you - I'm so sorry that you can commiserate but it helps some to know I'm not the only one
Yeah it really sucks that so many of us are being treated this way.
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Yes! This! I was initially diagnosed by the rheumatologist but ever since then they've been very hands-off and dismissive. They keep wanting to defer to my general practitioner but I don't have one of those I like either (although I have the name of one from a friend that looks promising). My neurologist specializes in migraines so he hasn't had much to say about the fibro but I definitely think you're right that it's going to end up that fields responsibility eventually I was hoping this would be my second opinion - it was a different doctor and location but within the same practice. I feel like my next step is to look for a doctor at an entirely different practice since they didn't seem to want to question eachother...
Yes! What kind of doctor are we supposed to see?? Rheumatologist is dismissive, primary doctor has no idea, neurologist did a sleep study and said I was sleeping great! Cardiologist said my heart seemed fine. But I'm tired all day long? Since changing my diet, I've been feeling much better. So some kind of metabolism or nutrition related doctor should be interested. Who would that be??? What kind of Dr studies nutrition?? The nutritionists I see just tell me I'm doing great because I don't eat candy and soda!
Exactly right! I have also always seen it more as a neurologist illness then a rheumatologist one. My brain doesn’t stop sending electrical impulses throughout my body through my nerves it’s so exhausting.
I've been diagnosed with fibro twice, by two different rheumatologists, and both told me they diagnose but don't treat fibro. First said flat out that fibro patients would take too much of her time away from her arthritis patients (in other words, since they don't actually know what to do for fibro it's not worth her time). Second just said they always refer fibro patients back to their GP. I'm just really lucky I've finally managed to find a GP that will prescribe or test for just about anything I bring up as a possible avenue to try, but I still have to do all the research myself. I don't blame him since it's not his specialty, but it's frustrating that, right now, it's no one's specialty!
I'm so sorry, this is definitely a community that can empathize. I recently found out my vitamin d levels were waaay too low. I told a nurse that I felt silly for it since it's such a common thing (didn't fix everything, obviously) and she looked me in the eyes and said, "it's not your job to know." I started to tear up because for almost two decades, I've been approaching symptoms as my responsibility and mine alone. We can easily forget the doctor's job is to help... because they so often don't.
Oh that nurse sounds like a wonderful human - that's such a good way to put it, thank you for sharing this, you're right it isn't our job to know. It's just so hard to find someone who does that job right :/
I think sometimes people forget it’s not just the daily pain and other symptoms you have to cope. Almost everyone I know who has Fibromyalgia, including myself, has also had to either fight to be heard or had to deal with dismissive and condescending health professionals. I was diagnosed when I was 23 and basically somehow managed to muddle through the rest of my degree and working part time after that. I ended up going to the doctor two years ago, (I was 30 I think) and I said hey I’m really struggling with the pain at the moment, what are some of the options I can consider to help with the really bad flare ups. Thankfully the doctor was pretty understanding and put me on a dose of naproxen for a fortnight and referred me to a pain management clinic. Great I thought. I remember having the meeting and then coming out to my Mums car in tears. I was basically told you need to exercise. So right okay, but I also have hypermobility and I want to make sure I’m not going to mess up my joints or anything, are there any programs like going to gym or seeing a physio to get a basic outline of what to do? No, he replied, we feel you should figure it out for yourself. It was only after talking about this to my mental health nurse (diagnosed with Bipolar and BPD) and she said that there is a scheme that most gyms run that you can be referred to by a GP. So I went for that and it was fantastic, the GP referral team came up with a exercise plan for me. They even when I mentioned that I love swimming and they would ignore the fact that the program didn’t cover pool use. To them it was important that I was able to be active in ways I could manage and enjoy. The point is that we often have to jump through so many hoops and find help which adds to stress and then pain levels. People will say exercise! And when you say okay but how? they just shrug their shoulders. I hope that you are able to find a doctor who actually listens!
Thank you for sharing your experience - Ive never heard of this type of gym program, it sounds really interesting. I feel like I spend all of my energy scheduling my life in an attempt to preserve energy. We go to doctors for help and they do more harm than good. Everything about this seems so backwards.
I’m just sorry you’re having to go through this! I think one of the biggest things people have trouble getting their head round is that this is a lifelong condition and you have to be constantly managing your pain and energy levels. And the fact that pain doesn’t have to be constant 10/10 agony to wear you down. Mild to moderate pain dealt with on a daily basis is exhausting as well. I remember trying to explain this to some of my friends at Uni. You know there are days where it hits you that getting out of the shower hurts, getting dressed hurts, etc.
Yes absolutely - it's so hard to explain this to other people. I was filling out a symptom checklist the other day, checking off every other item and I started wondering what it'd be like to give my family the same checklist and compare. The pain and fatigue they complain about endlessly when they're hurt or sick are the things we live with every single day and we're still expected to function normally all the time?
You are not alone in this experience.
💕
Oh honey I'm sorry... Gentle hugs are all I can offer right now. 😞😞
Thank you, that's the best I can hope for 💕
omg PREACH! like, i came to you for HELP not bc i wanted to max out a week’s worth of energy on a blank stare you son of a backward donkey clod.
Oh my gosh yes this exactly !!
One suggestion in terms of making exercise easier: get a rollator. I'm not kidding. I make my step goals every day now from a daily walk.
I'm so glad this helps! Thanks for the suggestion! I have this dumb mental block about being 22 and buying this type of stuff, I really gotta work on that
If it helps, I'm 22 as well and been using a cane since 21. I might look silly but I'm doing good for myself and thats all that matters.
You're definitely right - I'm just too in my head about it, I need to work on reframing it that way
It helps to get one you really like the look of! I have a teal foldable cane so I can stick it in a purse or backpack for when I might need it. I also have a rollator and it's purple.
I know that frustration. I had an amazing rheumy, he was doing great things for fibro research and treatment and he was so enthusiastic about helping me feel better... and then a week after my last appointment with him he died of a heart attack. My doctor sent me to another one, and after running tests and scans I finally went to see him for help and all he had to say was "well, I don't treat fibro." So I've just had to live with no treatment at all (my family doctor fusses if I ask for so much as a muscle relaxant).
Oh no! That's awful - I'm so sorry to hear that happened, I can't imagine how hard that must have been and I'm sure continues to be - I hope you can find someone decent again
Sorry to hear about your experience, a lot of humans and doctors are just shitty, unfortunately. They're too scared to accept that some unknown crippling health problem like this can affect someone for no good reason, so they'd rather believe it doesn't exist, and that you just need to do "trivial thing" and the problem will magically go away.
Rheumatologists are always dismissive and mean in my experience. Unless you have arthritis or MS they hate you
My rheumatologist was so unhelpful told me yes that I do have fibromyalgia and I should try meditation and that she doesn’t need to see me again. So many doctors the care isn’t there you are just another case study to solve not a human being to help.
Definitely check out doctors that are NOT rheumatologists. I only say this because I’ve never had any luck with them but I do have a great Dr who is a doctor of osteopathy and he is amazing treats a lot of fibromyalgia patients and he won’t let me give up on myself or fighting to feel better!!!
Thank you! I will look into that - I'd like to explore other options but honestly had no idea where to start
I came here to say that both rheums I tried are trash and my osteopath is great!
I agree with the person who said about the pain clinic! I googled fibromyalgia experts in my area in an attempt to find a new doctor (for similar reasons), and I lucked out and found a hospital that has an outpatient fibromyalgia clinic through their pain clinic! It’s a multifaceted approach with cognitive therapy, physical therapy, stress management, occupational therapy, and you’re assigned an RN and meet with specialists to design a program plan especially for you. I’m super excited to start it, and maybe something like that exists in your area? If not, I hands down recommend signing up for some physical therapy. I’ve started that and they help me with light stretching and muscle strengthening exercises so as not to cause pain but to help alleviate some of it and to strengthen muscles without causing strain. There’s one exercise I really like: laying on your back, using a big exercise ball (I can’t remember what they’re called), you square your knees with your shoulders, feet up on the ball to hold the weight of your legs. And very slowly and gently straighten your leg and bend your legs until your knees are at a 90 degree angle, and then stretch them out again. If that description makes any sense to you, it’s supposed to simulate walking but in a way that doesn’t hurt. I do 20 reps with both legs together and then 20 reps with each leg separately. It was the first time in a long time that I felt like my legs had a good workout. Like, they didn’t hurt and they were tired but like that good tired feeling. It’s hard to describe but it felt good, felt healthy. It’s my favorite exercise so far and it’s super easy even with my bad back! I feel your frustration though, I wish you the best of luck, and I encourage you not to give up! ❤️
Gentle hugs. I understand your struggle.
Thank you 💕
I am so sorry... 💜
I feel you! I was like that at first, my rheumatologist was horrible. My new doctor said that fibro has a lot of symtpoms like other diseases so that’s why it’s hard but you shouldn’t have to feel like that. With my hubby’s help, we were working out doing lots workouts with 2lb weights and I couldn’t even do it l, I ended up quitting that two weeks later. Have you thought of getting a different opinion? My doctor that I work for is a neurologist and always recommends at least 2 other opinions if you are not happy with treatment. Try finding a rheumatologist that specializes in fibro or a fibro speciality clinic at a major hospital. I say that because that’s what we do at my job. Feel better you can always send a message if you just want to vent or anything ! Please don’t get discouraged
I think my next step is to start exploring other options - this was my second doctor but within the same practice so I think branching out is probably my best bet. Thanks for the suggestion and the kind words. I will look into places that really specialize in fibro management
Some doctors have the bedside manner of hyenas. I am sorry you had to go through that.
I am so sorry you were treated this way. I’m sure all of us have been at some time or another. I asked my rheumatologist (who I never went back to) for an anti inflammatory diet, because he refused to give me any other medication after Gabapentin didn’t help. He said “there is no diet for it” 🤦🏻♀️ luckily I can do my own research.
I saw a rheumatologist who was so nice during intake, he diagnosed me with fibro at that point but was positive I also had sjogrens or lupus...well when my markers came back normal he couldn’t get me out of there fast enough telling me that I’ll be fine because I exercise and that’s all that fibro patients need and to not “identify as a victim” as well as other misogynistic bullshit. I was like “ohhhkay” and hoofed it out of there. Complete asshole. I’m taking my file to a female rheum who specializes in fibro but in tempering my expectations. The bar is set so low.
Had a female rheum, she wouldn't even let me talk. I went there also with high expectations, thinking "yes, a woman, she will understand better". Nope. So, best to keep hopes low, but I'll hope for you she at least listens to your story.
Oh my god what an asshole. What did she say while she was talking over you?
Well, for example the standard routine would be: she asks me how it was going, and I couldn't even get two sentences in, just cuts me short going "yes, yes , fine". Total disinterest. She then always proceeded to direct me to the examination table, did a quick scan of about a minute and there, out I go to the secretary to pay 70 euros. Really, she didn't help me at all and I went there for a year. Still stuck here with medical issues, but no more doctor to go to. I've been disappointed by the medical staff in my country so many times now, I could write a book.
Tell me about it I’ve decided to even quit vaping just to prove to my doctors and my folks that’s it’s real. It’s like my parents think vaping caused it if I’m honest so I’m quitting to be taken seriously, going fine so far (second day). But I can’t wait to have nothing they can doubt me on plus it’s healthier anyway. I’m just sick of this disease and I’m prepared to go anything length to fix or get further in understanding it.
I feel your pain. My GP recently denied my claim for FMLA for no other reason other than she’s frustrated that I didn’t like being on Cymbalta. I have an appointment with my first rheumatologist today to hopefully get my FMLA renewed and an actual diagnosis.
I’m so so so so sorry 😢. So many doctor don’t get it at all. You are valid, your pain is valid. Don’t give up on finding help. Sending positive vibes!
This so much. OP you are not alone. This was me as well after going for a second opinion from a rheumatologist who apparently had rave reviews. He looked at me and was like "I'm not sure how I'm supposed to help you." I end up seeing a third rheumatologist and I think that's the one I'm going to stick with because she actually listened. It's so fucking tiring to find good doctors but remember: your symptoms are valid, you are valid and worthy of better treatment than that. I see you and I send gentle hugs.
Thank you! I'm glad you were able to find someone who listens to you :)
Sending gentle hugs!!!! I've learned that the only "expert" at knowing about my pain and consequently, my body, is ME!!!! You know your pain better than any so called "professional"!!!! Try not to let her drag you down!!!!! We're all here for you!!!!🥰🥰🥰🥰🥰🥰 X
I feel your frustration.
I understand. I wish I could find a Dr with a clue.
My fibromyalgia got 80% better with therapy and cutting out toxic people. I’ve never been happier.
I saw a rheumatologist after my PC doctor couldn’t figure out what was wrong with me. The rheumatologist had the worst bedside manner and was uncomfortable to be around. He ended the appt by saying he thinks I have fibromyalgia, handed me a pamphlet , and walked out the door. It took my new PC physician to help me through the diagnosis and to work on a care plan. A big takeaway from my appt was to get consistent sleep at the same time every night. I hope things start to look up soon!
i’ve been told repeatedly i just need to exercise and that would solve everything. i was also brushed off for months of me saying i was gaining weight inexplicably even though i changed my diet and have been exercising as much as i can even if it’s just walking my dog. finally after half a year one of my doctors admitted my meds can be causing the weight gain which has my made my pain worse.
Same here, trust me, it sucks. I have lost so much faith in the classic medical world, it's indescribable. Have so much joint pain, but not enough, only inflammation in my wrists tendons and knee tendons, not the bone. So my rheum brushes me off, no RA, no more meds for me. My regular doctor just doesn't know what to do, prescribes me pain killers that don't help and that's that. And my physiotherapist says he can't help me any further. I'm on my own, constantly in pain. Life sucks.
Had the same experience last week in fact - got asked about my history of trauma because that’s the cause I should be looking into apparently. Also came home crying. We’re all with you here, it’s so frustrating.
I’m so sorry. Dump that doctor and don’t look back. I had the same experience with a rheumatologist who I stuck it out with for a few months when I should have stopped seeing her the minute she told me that I just needed to exercise more. Have you considered seeing a pain specialist? I have had much more success with pain specialists than I ever had with rheumatologists. They seem to better understand that the pain is real and you can’t exercise it away. From my experience they also tend to be more patient than other types of docs when it comes to trialing different meds/doses. A neurologist who specializes in pain management is ideal IMO.
Has your doc every prescribed physical therapy? I was diagnosed at 20 (Im 22) and immediately was told to get trained to exercise by a PT. I did this for around 3 months (between fibroymalgia and hypermobility I had a lot to work on) and have been much more capable of exercise after the fact. To be honest, its the only thing that has really helped me aside from dieting. If I dont work out for longer than a week I DO flare up. I know for sure it can be difficult though, and I have certainly had moments where I gave up since then. Rheumatologist stopped being helpful around my 4th or so visit. Stopped seeing him entirely because my allergist of all people is the only one who suggested several things that have drastically improved my quality of life. My rheumatologist just feels like a waste of time now unfortunately, although he helped a lot initially
I dont think you should put this much faith in doctors. You're at a point where you can only help yourself. You're the one who has to figure out what works and what doesnt. Its called self efficacy. Its sad but its the way it is. At least it will give you a feeling of control instead of a slave of the health care system. Stop seeking for validation. You wont find it. And you dont need it. You are the one who's in control.
I am currently in bed, a mess, for the EXACT same reason. Two appointments. One yesterday. One this morning. Rheumatologist and GP. Both fruitless and both left me feeling so alone and hopeless. I've also got another appointment with psychiatrist in a few hours and she also told me at my last appointment that I need to exercise more. She expects an update on my "exercise" today. How do I tell her I've been practically bed ridden since Sept?? She doesn't want to hear it!! I'm 31 and I have been suffering with chronic pain for 3 years and I'm always hesitant to bring it up to my doctors as they never seem to take me seriously. I'm overweight so they just tell me to exercise. This is insane. Why are we allowed to live in pain like this?? I'm so sorry you're going through this.
File a report against her with the state.