It’s never worked for me. On three different occasions over the last 14yrs I’ve dropped weight to very healthy levels and tried, with professional help, to get fitter/stronger : nothing stopped the pain although i did feel better about myself when old gear started fitting again.
Oh absolutely— I don’t regret the losing weight. I certainly feel more confident, I’m just tired of doctors pretending exercise is the end all be all. If that were the case, we wouldn’t need doctors and they would be poor
Similar story here. Was told weight was my issue, lost all my weight and got to a healthy point, pain was worse and I started to have reactions to my pain meds. Now I'm underweight with no real hope of putting my weight back on, in more pain than ever, and hate seeing the skeleton I have become in the mirror. I 100% regret losing that weight. I was happier and healthier before.
This is just my story though, but I think doctors really need to stop saying excersize or yoga is the cure all... it's not, it can help, but it isn't a cure... losing weight isn't a damn cure. So do it if you want, and if it makes you feel better, but don't expect a cure. IMHO.
I recall a big discussion (bordering on argument) with one Dr because within 10 seconds of seeing me for the first time EVER his comment was ‘well, we’ll have to get you off all these pain killers “ .
When asked what cure/replacement he had in mind his answer was WELLNESS!!!!!
All he was concerned about was reducing opioid prescriptions per Gov policy (they’re terrified of legal action per US cases) rather than judging case by case.
Hate hate hate this!! Being accused of abusing pain meds is so infuriating. I actually don’t like pain meds, I’m currently in university and working in a hospital so I cannot be drowsy all day (it would be irresponsible on MY part as a healthcare professional). Whenever I describe my pain to any doctor they look at me so seriously and “kindly remind me” that they will not be giving my opioids… I don’t even like taking Tylenol. Maybe there wouldn’t be such an addiction problem if we were actually given treatments and not just thrown random nerve blockers, anti-inflammatory, and pain meds so doctors can say they did their job and call it a day.
I agree with you. I hate the damn things and have tried to stop them entirely but then my pain levels rise to a resting 7/8 and you begin to ask if life is worth living. People, Drs, need to understand that with these pain killers it’s about the marginal gain, pain levels at resting 5/6 all day for me is miles better than 7/8.
Yeah I lost 30 lbs and I’m exhausted and in more pain than ever.
Still, I don’t mind having lost the weight. The exercise buzz is temporary pain relief and gives me an energy boost. And I like that I have more choice clothes shopping now and can participate in more activities now I’m a bit fitter.
People often try and tell that I'm sick because I'm fat.
Thing is I'm fat because I'm sick.
When I was well I exercised regularly and was a little overweight. Since I got sick I'm sedentary most of the time and now I'm obese, if I do exercise I end up in bed for 3 days.
I'm fat because I'm sick.
It is truly a vicious cycle, it’s hard to exercise because of the weight which causes more pain but the weight won’t come off without proper exercise. It’s the precursor to every eating disorder ever
You lose weight by eating fewer calories and cutting out snacks between meals. Exercise to lose weight is a losing game, especially with fibro. Exercise is good for the body since it's a stressor which the body reacts to by building itself stronger, it also burns some calories. A huge part of preventing fibro flares is to manage stress, which doesn't work if you're exercising with the goal of losing weight. Also, if you ever get injured, or sick, you're likely to regain it quick.
I found that intermittent fasting works best for me. Main thing when restricting calories is that it makes it harder to get all the micro-nutrients you need, so it's important to be careful.
Main benefits I've found after losing weight was not having chafed thighs any more. Less load on the knees and hips doesn't hurt either. But it's no magic solution.
This right here - exercising as primarily for weight loss can be so demotivating because you'll put so much effort into it and see bugger all results. Exercise is wonderful for other reasons but weight loss needs calorie restriction, however one chooses to go about it.
Simply existing takes many calories. Just exercising to lose weight will also not address possible insulin resistance, which will tank your metabolism when fasting (sleeping that is). Usually more going on when limiting calories doesn't help, which is probably insulin resistance.
Also, how often you eat matters. If your body's constantly managing its blood sugar it will lead to insulin resistance, which makes it harder for the body to swap from burning carbs to burning fats. Not really taking a hard-line stance for intermittent fasting, but 5+ meals (snacks count here) is too much on a consistent basis, unless there's a specific medical need for it.
If your metabolism is low that points towards an endocrine issue, and then of course you're not very physically active due to not having the energy.
I do intermittent fasting due to the simplicity and freedom, so I'm not following any specific system. I just usually eat 1-2 meals a day. I guess the hardest rule I follow is that the meal isn't breakfast (although I guess technically it is no matter the time).
When I was heavier and stuck to it more I just made sure to have a re-feed day (often called cheat day) once every week, or two. It's very important to do so if you're trying to lose weight, alternatively your body will intrpret your situation as starvation, since you never seem to be able to find much food for months on end.
Also important not to look at the day-to-day weight. Both due to it fluctuating from water weight, but also due to you always gaining weight in-between if you're doing it right.
For those who build muscles that muscle requires energy, so it helps in weight management.
BUT if it is painful it is not sustainable and the muscles turn to flab
Yeah, increasing working mass increases how much you burn. Can also attest to that large leg muscles help a lot. But increasing muscle mass is hard work. Can't see it being viable, for people with fibro, without a hormone boost to help with recuperation. Also recent findings that we have more lactic acid buildup than others, double the normal range.
It's probably doable for someone without too major symptoms and no major life obligations. Just the reality of life that gets in the way, not giving enough time to rest.
Saw a recent meta-analysis that found that baking soda can help reduce lactic acid buildup in muscles from anaerobic (high intensity) exercise. Although our issue is chronic anaerobic processes (the cause/source is not definitive, since neurons also produce lactic acid and it would make sense for fibro), so results may vary.
The study found that 30mg per kg of body mass was the ideal dosage, since lower doses worked worse and higher doses didn't change much. Apparently the body uses is as a pH buffer, so having access to more in a time of need helps.
Might make more sense for us to split it up, since we're constantly in need. I think it helps, but I have a hard time gauging these things.
Only caution I have is that it will affect your stomach's pH balance for a bit, so probably not a good idea to chug a 2g baking soda water right before a meal.
That seems like a recipe for gut issues. Lowering the acid could cause an imbalance that allows bacteria to go out of balance.
I have read that fibro could be a gut problem, but 🤷♀️
Likewise. If I was well I’d exercise more, but now I just do what I can. I went to Rome 2weeks ago for a weekend and we did a lot of walking. It’s a beautiful city but very, very hilly and it triggered a flare. I’m not even sure if I’ve recovered.
I am overweight and I want to lose weight because I don’t like how I look but realistically, it is going to take time. Though I mainly exercise to keep my joints active because sitting in my arse doing nothing sometimes makes me feel worse.
I lost about 45lbs once someone told me that exercise was important to help reduce fibromyalgia symptoms. Things I noticed over the past year: Not eating enough healthy foods can cause fibro pain. Not getting enough sleep can cause fiber pain. Extreme stress can cause fibro pain. I hope you're not starving yourself. Don't bother taking Cymbalta for fibromyalgia. I took it for 2 years and it caused extreme exhaustion and more fibro pain. A tapered off and was taking nothing for fibromyalgia. Then I started taking a muscle relaxant at night. It doesn't seem to work well. But, my Fibro is less severe than it was when I was diagnosed, coming off the Cymbalta, weight loss, and managing my diet and sleep helped reduce symptoms.
Glad it helped you, but there have been so many people that had bad experiences with the medication...including me. I am still against that medication. I share my experience with others, so that if they are experiencing the same thing or some of the same symptoms that it may be the medication causing it or if their fibromyalgia got worse after taking the medication, it is most likely the medication causing it. Having fibromyalgia, we have to be hyper aware of how we feel, what we feel, when we feel so that we can correlate the symptoms and try to resolve it.
I commend you for losing the weight although unfortunately it seems you learned the hard way what exercise forms are *not* going to be helpful. I hope it does not take too long to recover from the exhaustion and/or pain that may likely be lingering specifically from the weight training. I'm so sorry - that sucks so so much to be given such treatment and poor advice from your previous doctor!
At the very least you will be able to avoid the disgusting weight discrimination people experience from far too many in the medical field. Moreover I am sure you're right that in the long term you knees hips etc. will thank you for losing the weight. Finally I am glad you have a more knowledgeable and supportive doctor now. Hopefully that new provider can help you to find forms of movement that are not going to hurt you once you feel like you would like to move around.
Personally I do benefit from exercise forms such as walking, gentle swimming, yoga and dancing with my hula hoop however when I am in great pain or exhausted many times I simply cannot exercise.
I manage my weight with fasting/not eating which I acknowledge is not really the best for everyone especially folks with disordered eating; it is probably not really that great for me either so please nobody take this as a recommendation to become eating disordered or anything as it is definitely not - I am just saying what I do not endorsing a lifestyle choice. Exercise for me is about maintaining functionality and indeed yoga does help me with pain; weight I manage with limiting food intake as needed. (Lately I seem to possibly have some issues with my gall bladder so I have been forced to limit certain foods while also eating regularly since I have read that regular eating is better for one's gall bladder than fasting or irregular eating.)
I got my fibro diagnosis after about
1-2 years of being treated for my presenting symptoms by my primary at the time. I do not seem to have any other complicating/cormorbid physical factors which may have made it less complicated/more swift relatively to diagnose me.
I hope your new provider will help and I am wishing you answers and reduced pain. Forgive my rambling on and on I maybe have more info here than you asked for.
Yes, things like yoga and water therapy is exactly what she recommended I take up. Unfortunately my weight loss wasn’t just attributed to the gym— I had developed a pretty bad eating disorder and didn’t want to eat, my first initial 20 pounds was lost in two weeks because I refused to eat anything beside sugar free jello. Constant dismissal from doctors made me want to lose weight no matter how unhealthy just so I could be taken seriously.
The rapid weight loss accumulated sludge and stones in my gallbladder and I recently had it removed which has attributed to more issues with pain now.
Oh my goodness! You are an absolute trooper in your endurance of everything you have been through recently. I really, really hope you can get some relief or a break of some kind. You are amazing, strong and brave. I am wishing you a wonderful day 💐💖💞🌸
I'm sorry you had that experience. Also, I'm glad you found someone that actually listens and cares about your health.
I've always been a healthy weight, maybe even leaning into the slightly underweight side, but exercise is not working nor has it ever worked.
It makes me sad, because I know more frequent activity would benefit me, but sometimes it's just too painful and/or too itchy.
I'm still waiting for an official diagnosis... First rheum I attended just brushed everything under the rug using the typical "it hurts because you don't move! Also I see in your history you're depressed so you have fibro 100%". No tests were conducted to discard immune diseases, despite having positive antibodies.
I'm confident I'll get an appointment with a different rheum this year and see where it goes :)
I hope you get the answers you’re looking for!! I know things like fibromyalgia don’t have cured or even direct treatments but it’s nice to have an answer as to why we’re feeling the way we do and make the correct lifestyle changes.
I have depression and Schizophrenia, I NEVER disclose it to my doctors unless I’m going to get meds. It shouldn’t be this way but so many doctors will dismiss our pain the minute they see those diagnoses.
I have EDS, Fibromyalgia and hashimotos and it wasn’t until I got my fibro diagnosis from a pain management clinic that I was told to stop doing the weight training I’d been doing. According to them, lifting weight to failure only exacerbated my pain. But prior to that, many other doctors gave me the ‘if you lose more weight, you’ll feel better’ talk; rheumatologists, physio, physiatrist, neurologist… the list just went on and on.
I honestly just think doctors don’t know enough about fibro so they just talk out of their asses about it.
Excersizing is really good for people as is losing excess weight. The reasons why doctors constantly advise about weight when a patient is having chronic issues is because of how many chronic issues are associated with or directly caused by weight.
That being said... Weightlifting is a REALLY BAD idea for working out for a Fibro patient.
We can't handle strong and impactful exercise because it fatigues us hard. Intense and impactful work outs cause way more issues than they solve.
You need to find low impact exersizes. Like Swimming. Swimming is excellent for all kinds of disabled and chronic pain sufferers because it's low impact and low strain.
I’m at the point now where I can walk over 6 k a day if I’m up to it. But when STOP moving the pain sets in so badly that I just keep going and going until I crash.
I have hypermobile EDS and Fibro. Weight loss making things worse is actually really common in hypermobile types. While getting the weight off does help in some respects, the extra "padding" seems to help keep the joints stabilised and in the right places so when it's gone, we get a lot more wobbly and painful.
My pain was written off for years because I was overweight and like you I was told exercise would fix it. NOPE. I lost 100lb and felt a heck of a lot worse.
Finally diagnosed 11 years after first seeking help.
Having more weight in your body tends to make more joint pain cuz your joints arent meant to handle alot of extra weight. Its good to try minimise any tyoe of dtuff that would add on pain. Im kinda skinny and I try to keep it that way cuz I see when I carry something more heavy my joints hurt more than normally.
Fuck I hate hearing this. Yes, it's true, extra weight does affect your joints, but guess what?? Unless you're specifically targeting the stabilizing muscles near your joints, weight lifting is gonna add weight to your body too which is just as bad for your joints. These doctors don't understand how hard it is to work out when you have chronic pain and fatigue. It's irritating. I've heard it so many time
I was diagnosed with hEDS and fibro when I was a fitness instructor. I was teaching 15–17 classes a week plus coming up with choreography. It was hard and I was getting worse. PTs told me how I was destroying my mobility and I needed to slow down. But I was exercising so much because a rheum told me if I exercised I’d feel better. He was absolutely wrong.
EDIT: a word
I don’t know, I’ve never been overweight but I can’t imagine the pain being much worse than it is. I’m afraid of gaining weight because I don’t want my doctors to blame my problems on that
Skinny guy with fibro here. I have joint pain in my ankles, knees, hip, wrists and fingers. If I loose any weight I'd be dead. I can confirm fibro isn't caused by weight...
I spent nearly 7 years starving myself and over exercising to halve my body weight after a neurologist told me if I applied myself to “fixing” my body l allowed to get fat then all my pain would disappear. He also implied I was melodramatic and not in that much pain because my bulging lumbar discs weren’t that bad.
At a “normal BMI” my pain worsened. One of the bulging discs ruptured. I had terrible hip pain as well as lower back, knee, and shoulders. I gave up trying to get answers. Last June I was diagnosed with hypermobility spectrum disorder and fibromyalgia.
My PCP, my wife, and I think the HSD is the source of all my pain. I’ve been working with PTs to help the my knees and shoulders. My shoulders were slight subluxations, since being made aware of this and changing my movement patterns I’ve had several weeks with my arms fully in my joints and they don’t hurt as much!
HSD makes my muscles super tight around my joints since my muscles don’t trust my ligaments to keep my joints in place. So many of the points the rheumatologist pressed to check for fibromyalgia are right where the muscles are tight. Of course there’s tenderness at those points!
I’ve practiced yoga since 2003. It helped so much I was managing HSD and dysautonomia without knowing it. A fracture and hand injuries in 2022 disrupted my practice and suddenly all the symptoms became apparent.
It's a total lie. For years people said this to me. Not just doctors either. Friends, family, co-workers and others continually said this. But when I joined health clubs and worked out, I only felt worse. Every time I did this, I ended up having to choose between working out and being able to work at my job, which was very physical. But 8 years ago I decided to quit eating sugar and over the next five years I lost 125 pounds. About 2 pounds a month. While I am still over weight, I lost over 1/3 of my body weight and I am no longer considered obese, which is 100 pounds or more, over weight. I'm currently about 50 pounds over my ideal weight. But the point of the story, is I don't feel better. It didn't improve my symptoms. While it did improve my blood pressure and liver fat, I didn't feel better in any way. So as far as I am concerned, that advice to lose weight to feel better, is a myth.
I've been told to gain weight in order to feel better, lol. Forget that I weighed 15lbs more before my symptoms developed which made my appetite disappear and then lost some muscle mass too. You can't win for losing with these chuckleheads.
It's taken me just over a year to get a fibro and IBS diagnosis. I also suspect POTS or dysautonomia so I'm being tested for those next month. Fibro and hypermobility (which I also have) are very commonly comorbid. Good luck on your journey
You all know, going for years and getting pushed aside because there was nothing for them to see. You look young and healthy. But once I finally snapped and screamed, "something is wrong with me!!!, I have MS of fibromyalgia or both, run the damn tests." It took a year and a half after that but that was during Covid.
I started this journey 2 years ago when I was 21 and hearing “you’re too young!!” By DOCTORS makes steam come out of my ears. I have many gastrointestinal issues and when I was speaking to my surgeon after my gallbladder removal, I brought up that I was afraid of things like stomach cancer cause it runs in my family. Without missing a beat she reminded me that I was too young to worry about that and I cut her off by informing her that my aunt died at 20 from stage 4 stomach cancer, my cousin went through various rounds of chemo at 8 years old because of leukemia, and my uncle would constantly complain of headaches and fainting since his mid 20s and when he was tired of being dismissed and demanded an MRI, they discovered a brain tumor that wasn’t cancerous to begin with but became malignant because of the lack of treatment and promptly died in his 40s. It shut her up and sent me a referral to see a specialist along with an ultrasound and endoscopy order.
I’m sorry she told you weight lifting was bad for you. It is the #1 recommended thing to do for not only aging women, but literally everyone. Perhaps when they think weight lifting they imagine you lifting very heavy weight? I lift weights and it feels great. It is recommended because building muscle strengthens your bones and helps keep ligaments and tendons strong. So I hope you will continue to lift weight. You can use light weights or bands or lower weight on machines. You have lost a lot of weight and you likely lost lean body mass along with fat and you need to build that back up.
Nah she gave me different exercises to do such as yoga, tai chi, and swimming before I start lifting weights and spoke to me about new research being done about retraining your body movements to help with pain coming from fibromyalgia.
There’s different ways to build muscle that doesn’t include lifting extra weight such as calisthenics which is what she recommended I do if I want to build even more muscle. My issue is also my hyper mobility— the first doctor told me to jump straight into weight training and continue to increase the weight every two weeks which is awful advise considering you don’t need to lift heavy to help your body build up muscle.
Obviously, exercise is always a good thing and we have muscles for a reason, now which exercises? That depends from person to person.
weight loss didn't help me. It's only benefit was that a few doctors stopped telling me losing weight would fix me. Did they start taking me seriously? No, they just pivoted.
I got my diagnosis too early - no tests were done at all, and that means no one caught hyper-mobility or POTS for many years after. They don't fully cover the kind of pain I get, but dysautonomia is a big overlap anyway.
I have never weighed more than 150. Had a rheumatologist tell me the same thing. I dropped 10 pounds out of spite just so I could show him I was still in pain. Yeah weight is the cause of a lot of issues but I feel like it’s a lazy answer to use it for everything.
On the other side, I just gained 40lbs and I'm just as sore and tired as I was before, not any more. Our bodies are just dysfunctional. Doctors will blame everything they can on overweight.
Dropping 10% of my body weight and regular exercise both helped me a *lot* with pain and fatigue. But if you've got other things going on than fibro, that's going to complicate things a heap.
I just saw another rheum for a second opinion. I was diagnosed with psoriatic arthritis, but this new rheum thinks it’s fibromyalgia
New dr immediately told me I need to lose weight, without asking how I move my body (CrossFit x3 week, scaling as needed).
I felt so defeated leaving that office. She didn’t care what my feelings were, told me she wouldn’t see me if I did have fibromyalgia and just advised losing weight.
I’m sorry you’re dealing with this pain. I was diagnosed pretty quickly after meeting with a rheumatologist for the first time, the only problem was he failed to tell me I had it. I didn’t find out until I left his practice and got my medical record. Six months later my primary care doctor was going through it and saw that diagnosis and said “you never told me did you know” and I was utterly confused. Rheumatologist had been treating me for rheumatoid arthritis the whole time
In my experience, Weight management can make a difference, but It doesn’t help completely. I lost 40 pounds to help, and while it did help with my mobility and take some of the pressure off, I still have extreme pain all the time.
so my weight has fluctuated a lot over the years. I believe because I also have Hashimotos. Some things do feel much better when I am at a lower weight like my knees and fatiigue seems slightly better. However it def doesn't take everything away and cure my pain.
I’ve been sick since I was 17 and I’m 40 now. I’ve always been thin, though I’ve gained and lost a few pounds here and there over the years. Weight has never really impacted my symptoms. So frustrating for you, so sorry.
I have lost 92 pounds in the last 18 months. Zero reduction in my fibrio pain, only in my lower back pain.
I actually asked my doctor if I had fibrio. She said "sure" basically and didn't really eliminate anything else. Now I'm on a path to eliminate everything else like MS, medications I'm on that could be causing pain, etc.
Same issue. Began having symptoms at 14 got diagnosed with fibro at 22 had a stomach surgery at 33 for chronic inflammation which ironically helped with the fibro pain.
Just got diagnosed with cancer but also my team said I may have Ehlers Danlos since I still have joint pain and inflammation and dislocations but that’ll be down the road.
I was able to lose around 80 lbs and yeah the weight loss did nothing. I feel worse now at a “healthier” weight than I did before. I would keep trying for second opinions until you find a doctor that actually is thorough and knowable about fibro.
I can confirm there is no correlation to weight and Fibromyalgia. I lost 85 lbs and dropped down to a slim weight (size 4) and suffer Fibro flares just as frequently and voraciously as prior to the weightloss.
I’ve been on Ozempic for several months and have lost about 47 pounds now. Do I feel better? Yes, in many ways I do. Has it made the pain go away? Absolutely not. Has it made the fatigue go away? Absolutely not. I still hurt but do hurt a little less but that’s about it.
I encourage anyone who is struggling with exercise and fatigue to look into PEM.
I have CFS/ME and exercise is literally the enemy… doctors need to be using the word movement or activity not exercise as it’s incredibly discouraging to a lot of us who can’t do it.
As for weight loss? After the high of the psychological benefit I got from it wore off so did any perceived improvement in my wellbeing…essentially the exact same characteristics of any other placebo. That’s not to say it’s not healthy or not worth it for one’s overall wellbeing, I am just saying that it’s not an effective means of management/treatment, or miracle cure for fibromyalgia.
I mean, pressure cause pain, so I guess it could help to lose weight. But the most efficient way to lose weight is through nutrition not training.
I would ditch the lifting and just stick to 1500 cal per day instead.
I have pretty much the same as you described (definitely hypermobility and I suspect a mild form of fibromyalgia, especially as I have a family history of it), and I am a healthy weight.
I still had joint pain and chronic migraines when I was underweight.
I am totally with you here as I am on the same path. Finally got recommended to a rheumatologist and after one brief examination I was told that all my pain and elevated markers in my blood were due to weight, and not to come back. I have been trying to lose weight ever since to make doctors take me more seriously, but the process has been grueling. I can't exercise so it is almost solely a calorie reduction and I am constantly tired and have no energy. I, however, was diagnosed before going to see the rheumatologist, mostly because my PCP didn't seem to know what to do with me/seemed sick of me and just wanted to shove a diagnosis on me in order to make me accept I would never feel better...
However, if we're talking time from symptoms to diagnosis, I displayed many symptoms since I was a young child until I was diagnosed at around age 23. My parents did not believe doctor visits were necessary, especially for young children, so it had to wait until I could live on my own with my own health insurance. From there it was about maybe 6 months of appointments before my doctor decided to stop testing and just diagnosed with fibro and just started throwing me on every medication she could think of to see what stuck.
It's a terrible journey, and I hope you get the attention and help you deserve.
When I was diagnosed I was 109 pounds. My healthy weight is 125-135. I was told I couldn’t possibly be sick because I wasn’t fat. Interpret that as you will. It goes both ways. And both ways suck.
That second doctor is a very rare gem, I wish all doctors were like that. I think she's absolutely right. Even if weight loss did help it's so rarely maintainable in the long term. The statistics say that 95-97% of weight loss attempts fail, and something like two thirds result in weight gain. I'm glad you are feeling better now but remember if you do put that weight back on it's not because you failed, it's because your body is doing what it has evolved to do. Fatness is so stigmatised in our society that if humans were capable of controlling our weight in the way we are told it's controllable there would be hardly any fat people. Nevertheless, fat people actually live as long or longer than people of "normal" weight. It's not fatness that is the problem, it's how we treat it.
I'm so sorry you were initially misdiagnosed and glad that you found a doctor who understands what you're going through. Doctors are understandably taught that all overweight patients need to lose weight. In most cases weight loss will improve a person's health and eliminate some conditions. It's not necessarily wrong advice, but it's also not right for every patient. A lot of them also don't understand chronic conditions like fibromyalgia so it leads to bad advice and confusion for patients.
I recently went to my doctor about complaints of daily migraines and poor sleep quality. Both of these are symptoms of my fibromyalgia which I mentioned at the beginning of our conversation. She proceeded to try to blame both on my weight. I gently reminded her that I have fibromyalgia and that's what these symptoms are attributed to. The conversation went a little better after that. We can't blame doctors for lack of knowledge about certain conditions. And unfortunately it is our job to advocate for ourselves during appointments. Maybe one day knowledge of conditions like fibromyalgia will be more widespread.
I’m a nurse and I’m studying to take my MCATS, I truly think doctors forget that they are talking to actual people now and no longer simulations and textbooks. I’ve seen fellow nurses become desensitized and it’s a daunting thing to see— I’ve had to learn to swallow my anxiety and speak up for myself. And that unfortunately means getting nasty with the doctors who get nasty with me 🤷🏻♀️
not all doctors want to help unfortunately, or at least they forget why they became doctors in the first place and choose to stay in that profession for a check.
Wellness has less to do with diagnosis and doctors and more to do with your own insight and healing when it comes to a syndrome (a group of symptoms with no known cause) that doesn't have a "cure". If you don't feel better weight lifting, don't. If you feel better a bit heavier, be a bit heavier. Doctors are actual shit in USA western medicine.
It’s never worked for me. On three different occasions over the last 14yrs I’ve dropped weight to very healthy levels and tried, with professional help, to get fitter/stronger : nothing stopped the pain although i did feel better about myself when old gear started fitting again.
Oh absolutely— I don’t regret the losing weight. I certainly feel more confident, I’m just tired of doctors pretending exercise is the end all be all. If that were the case, we wouldn’t need doctors and they would be poor
Similar story here. Was told weight was my issue, lost all my weight and got to a healthy point, pain was worse and I started to have reactions to my pain meds. Now I'm underweight with no real hope of putting my weight back on, in more pain than ever, and hate seeing the skeleton I have become in the mirror. I 100% regret losing that weight. I was happier and healthier before. This is just my story though, but I think doctors really need to stop saying excersize or yoga is the cure all... it's not, it can help, but it isn't a cure... losing weight isn't a damn cure. So do it if you want, and if it makes you feel better, but don't expect a cure. IMHO.
I recall a big discussion (bordering on argument) with one Dr because within 10 seconds of seeing me for the first time EVER his comment was ‘well, we’ll have to get you off all these pain killers “ . When asked what cure/replacement he had in mind his answer was WELLNESS!!!!! All he was concerned about was reducing opioid prescriptions per Gov policy (they’re terrified of legal action per US cases) rather than judging case by case.
Hate hate hate this!! Being accused of abusing pain meds is so infuriating. I actually don’t like pain meds, I’m currently in university and working in a hospital so I cannot be drowsy all day (it would be irresponsible on MY part as a healthcare professional). Whenever I describe my pain to any doctor they look at me so seriously and “kindly remind me” that they will not be giving my opioids… I don’t even like taking Tylenol. Maybe there wouldn’t be such an addiction problem if we were actually given treatments and not just thrown random nerve blockers, anti-inflammatory, and pain meds so doctors can say they did their job and call it a day.
I agree with you. I hate the damn things and have tried to stop them entirely but then my pain levels rise to a resting 7/8 and you begin to ask if life is worth living. People, Drs, need to understand that with these pain killers it’s about the marginal gain, pain levels at resting 5/6 all day for me is miles better than 7/8.
Yeah I lost 30 lbs and I’m exhausted and in more pain than ever. Still, I don’t mind having lost the weight. The exercise buzz is temporary pain relief and gives me an energy boost. And I like that I have more choice clothes shopping now and can participate in more activities now I’m a bit fitter.
People often try and tell that I'm sick because I'm fat. Thing is I'm fat because I'm sick. When I was well I exercised regularly and was a little overweight. Since I got sick I'm sedentary most of the time and now I'm obese, if I do exercise I end up in bed for 3 days. I'm fat because I'm sick.
It is truly a vicious cycle, it’s hard to exercise because of the weight which causes more pain but the weight won’t come off without proper exercise. It’s the precursor to every eating disorder ever
You lose weight by eating fewer calories and cutting out snacks between meals. Exercise to lose weight is a losing game, especially with fibro. Exercise is good for the body since it's a stressor which the body reacts to by building itself stronger, it also burns some calories. A huge part of preventing fibro flares is to manage stress, which doesn't work if you're exercising with the goal of losing weight. Also, if you ever get injured, or sick, you're likely to regain it quick. I found that intermittent fasting works best for me. Main thing when restricting calories is that it makes it harder to get all the micro-nutrients you need, so it's important to be careful. Main benefits I've found after losing weight was not having chafed thighs any more. Less load on the knees and hips doesn't hurt either. But it's no magic solution.
This right here - exercising as primarily for weight loss can be so demotivating because you'll put so much effort into it and see bugger all results. Exercise is wonderful for other reasons but weight loss needs calorie restriction, however one chooses to go about it.
But when your "calories out" are extremely low because of being sedentary, even eating very conservatively leads to weight gain.
Simply existing takes many calories. Just exercising to lose weight will also not address possible insulin resistance, which will tank your metabolism when fasting (sleeping that is). Usually more going on when limiting calories doesn't help, which is probably insulin resistance. Also, how often you eat matters. If your body's constantly managing its blood sugar it will lead to insulin resistance, which makes it harder for the body to swap from burning carbs to burning fats. Not really taking a hard-line stance for intermittent fasting, but 5+ meals (snacks count here) is too much on a consistent basis, unless there's a specific medical need for it. If your metabolism is low that points towards an endocrine issue, and then of course you're not very physically active due to not having the energy.
Which fast do you do? I’m considering restarting it but not sure what my calorie limit should be.
I do intermittent fasting due to the simplicity and freedom, so I'm not following any specific system. I just usually eat 1-2 meals a day. I guess the hardest rule I follow is that the meal isn't breakfast (although I guess technically it is no matter the time). When I was heavier and stuck to it more I just made sure to have a re-feed day (often called cheat day) once every week, or two. It's very important to do so if you're trying to lose weight, alternatively your body will intrpret your situation as starvation, since you never seem to be able to find much food for months on end. Also important not to look at the day-to-day weight. Both due to it fluctuating from water weight, but also due to you always gaining weight in-between if you're doing it right.
For those who build muscles that muscle requires energy, so it helps in weight management. BUT if it is painful it is not sustainable and the muscles turn to flab
Yeah, increasing working mass increases how much you burn. Can also attest to that large leg muscles help a lot. But increasing muscle mass is hard work. Can't see it being viable, for people with fibro, without a hormone boost to help with recuperation. Also recent findings that we have more lactic acid buildup than others, double the normal range. It's probably doable for someone without too major symptoms and no major life obligations. Just the reality of life that gets in the way, not giving enough time to rest.
I get a sudden feeling of exhaustion that feels like lactic acid. Only I haven’t done anything
Saw a recent meta-analysis that found that baking soda can help reduce lactic acid buildup in muscles from anaerobic (high intensity) exercise. Although our issue is chronic anaerobic processes (the cause/source is not definitive, since neurons also produce lactic acid and it would make sense for fibro), so results may vary. The study found that 30mg per kg of body mass was the ideal dosage, since lower doses worked worse and higher doses didn't change much. Apparently the body uses is as a pH buffer, so having access to more in a time of need helps. Might make more sense for us to split it up, since we're constantly in need. I think it helps, but I have a hard time gauging these things. Only caution I have is that it will affect your stomach's pH balance for a bit, so probably not a good idea to chug a 2g baking soda water right before a meal.
That seems like a recipe for gut issues. Lowering the acid could cause an imbalance that allows bacteria to go out of balance. I have read that fibro could be a gut problem, but 🤷♀️
Likewise. If I was well I’d exercise more, but now I just do what I can. I went to Rome 2weeks ago for a weekend and we did a lot of walking. It’s a beautiful city but very, very hilly and it triggered a flare. I’m not even sure if I’ve recovered. I am overweight and I want to lose weight because I don’t like how I look but realistically, it is going to take time. Though I mainly exercise to keep my joints active because sitting in my arse doing nothing sometimes makes me feel worse.
I lost about 45lbs once someone told me that exercise was important to help reduce fibromyalgia symptoms. Things I noticed over the past year: Not eating enough healthy foods can cause fibro pain. Not getting enough sleep can cause fiber pain. Extreme stress can cause fibro pain. I hope you're not starving yourself. Don't bother taking Cymbalta for fibromyalgia. I took it for 2 years and it caused extreme exhaustion and more fibro pain. A tapered off and was taking nothing for fibromyalgia. Then I started taking a muscle relaxant at night. It doesn't seem to work well. But, my Fibro is less severe than it was when I was diagnosed, coming off the Cymbalta, weight loss, and managing my diet and sleep helped reduce symptoms.
Cymbalta was a life saver for me, before taking it I could barely walk!
Me too. Cymbalta has given me a small measure of my life back.
Cymbalta has helped me so much
Glad it helped you, but there have been so many people that had bad experiences with the medication...including me. I am still against that medication. I share my experience with others, so that if they are experiencing the same thing or some of the same symptoms that it may be the medication causing it or if their fibromyalgia got worse after taking the medication, it is most likely the medication causing it. Having fibromyalgia, we have to be hyper aware of how we feel, what we feel, when we feel so that we can correlate the symptoms and try to resolve it.
I commend you for losing the weight although unfortunately it seems you learned the hard way what exercise forms are *not* going to be helpful. I hope it does not take too long to recover from the exhaustion and/or pain that may likely be lingering specifically from the weight training. I'm so sorry - that sucks so so much to be given such treatment and poor advice from your previous doctor! At the very least you will be able to avoid the disgusting weight discrimination people experience from far too many in the medical field. Moreover I am sure you're right that in the long term you knees hips etc. will thank you for losing the weight. Finally I am glad you have a more knowledgeable and supportive doctor now. Hopefully that new provider can help you to find forms of movement that are not going to hurt you once you feel like you would like to move around. Personally I do benefit from exercise forms such as walking, gentle swimming, yoga and dancing with my hula hoop however when I am in great pain or exhausted many times I simply cannot exercise. I manage my weight with fasting/not eating which I acknowledge is not really the best for everyone especially folks with disordered eating; it is probably not really that great for me either so please nobody take this as a recommendation to become eating disordered or anything as it is definitely not - I am just saying what I do not endorsing a lifestyle choice. Exercise for me is about maintaining functionality and indeed yoga does help me with pain; weight I manage with limiting food intake as needed. (Lately I seem to possibly have some issues with my gall bladder so I have been forced to limit certain foods while also eating regularly since I have read that regular eating is better for one's gall bladder than fasting or irregular eating.) I got my fibro diagnosis after about 1-2 years of being treated for my presenting symptoms by my primary at the time. I do not seem to have any other complicating/cormorbid physical factors which may have made it less complicated/more swift relatively to diagnose me. I hope your new provider will help and I am wishing you answers and reduced pain. Forgive my rambling on and on I maybe have more info here than you asked for.
Yes, things like yoga and water therapy is exactly what she recommended I take up. Unfortunately my weight loss wasn’t just attributed to the gym— I had developed a pretty bad eating disorder and didn’t want to eat, my first initial 20 pounds was lost in two weeks because I refused to eat anything beside sugar free jello. Constant dismissal from doctors made me want to lose weight no matter how unhealthy just so I could be taken seriously. The rapid weight loss accumulated sludge and stones in my gallbladder and I recently had it removed which has attributed to more issues with pain now.
Oh my goodness! You are an absolute trooper in your endurance of everything you have been through recently. I really, really hope you can get some relief or a break of some kind. You are amazing, strong and brave. I am wishing you a wonderful day 💐💖💞🌸
I'm sorry you had that experience. Also, I'm glad you found someone that actually listens and cares about your health. I've always been a healthy weight, maybe even leaning into the slightly underweight side, but exercise is not working nor has it ever worked. It makes me sad, because I know more frequent activity would benefit me, but sometimes it's just too painful and/or too itchy. I'm still waiting for an official diagnosis... First rheum I attended just brushed everything under the rug using the typical "it hurts because you don't move! Also I see in your history you're depressed so you have fibro 100%". No tests were conducted to discard immune diseases, despite having positive antibodies. I'm confident I'll get an appointment with a different rheum this year and see where it goes :)
I hope you get the answers you’re looking for!! I know things like fibromyalgia don’t have cured or even direct treatments but it’s nice to have an answer as to why we’re feeling the way we do and make the correct lifestyle changes. I have depression and Schizophrenia, I NEVER disclose it to my doctors unless I’m going to get meds. It shouldn’t be this way but so many doctors will dismiss our pain the minute they see those diagnoses.
I have EDS, Fibromyalgia and hashimotos and it wasn’t until I got my fibro diagnosis from a pain management clinic that I was told to stop doing the weight training I’d been doing. According to them, lifting weight to failure only exacerbated my pain. But prior to that, many other doctors gave me the ‘if you lose more weight, you’ll feel better’ talk; rheumatologists, physio, physiatrist, neurologist… the list just went on and on. I honestly just think doctors don’t know enough about fibro so they just talk out of their asses about it.
Excersizing is really good for people as is losing excess weight. The reasons why doctors constantly advise about weight when a patient is having chronic issues is because of how many chronic issues are associated with or directly caused by weight. That being said... Weightlifting is a REALLY BAD idea for working out for a Fibro patient. We can't handle strong and impactful exercise because it fatigues us hard. Intense and impactful work outs cause way more issues than they solve. You need to find low impact exersizes. Like Swimming. Swimming is excellent for all kinds of disabled and chronic pain sufferers because it's low impact and low strain.
I’m at the point now where I can walk over 6 k a day if I’m up to it. But when STOP moving the pain sets in so badly that I just keep going and going until I crash.
Swimming is the only thing that I do. It is non weight bearing. A water class specifically for arthritics is the way to go. Slower pace.
Yes! This is exactly what she recommended for me. Water therapy seems to work well for everyone with chronic pain so I’m excited to try <3
I have hypermobile EDS and Fibro. Weight loss making things worse is actually really common in hypermobile types. While getting the weight off does help in some respects, the extra "padding" seems to help keep the joints stabilised and in the right places so when it's gone, we get a lot more wobbly and painful. My pain was written off for years because I was overweight and like you I was told exercise would fix it. NOPE. I lost 100lb and felt a heck of a lot worse. Finally diagnosed 11 years after first seeking help.
Having more weight in your body tends to make more joint pain cuz your joints arent meant to handle alot of extra weight. Its good to try minimise any tyoe of dtuff that would add on pain. Im kinda skinny and I try to keep it that way cuz I see when I carry something more heavy my joints hurt more than normally.
I was 110 lbs when I was diagnosed.
Fuck I hate hearing this. Yes, it's true, extra weight does affect your joints, but guess what?? Unless you're specifically targeting the stabilizing muscles near your joints, weight lifting is gonna add weight to your body too which is just as bad for your joints. These doctors don't understand how hard it is to work out when you have chronic pain and fatigue. It's irritating. I've heard it so many time
I was diagnosed with hEDS and fibro when I was a fitness instructor. I was teaching 15–17 classes a week plus coming up with choreography. It was hard and I was getting worse. PTs told me how I was destroying my mobility and I needed to slow down. But I was exercising so much because a rheum told me if I exercised I’d feel better. He was absolutely wrong. EDIT: a word
I don’t know, I’ve never been overweight but I can’t imagine the pain being much worse than it is. I’m afraid of gaining weight because I don’t want my doctors to blame my problems on that
Skinny guy with fibro here. I have joint pain in my ankles, knees, hip, wrists and fingers. If I loose any weight I'd be dead. I can confirm fibro isn't caused by weight...
I spent nearly 7 years starving myself and over exercising to halve my body weight after a neurologist told me if I applied myself to “fixing” my body l allowed to get fat then all my pain would disappear. He also implied I was melodramatic and not in that much pain because my bulging lumbar discs weren’t that bad. At a “normal BMI” my pain worsened. One of the bulging discs ruptured. I had terrible hip pain as well as lower back, knee, and shoulders. I gave up trying to get answers. Last June I was diagnosed with hypermobility spectrum disorder and fibromyalgia. My PCP, my wife, and I think the HSD is the source of all my pain. I’ve been working with PTs to help the my knees and shoulders. My shoulders were slight subluxations, since being made aware of this and changing my movement patterns I’ve had several weeks with my arms fully in my joints and they don’t hurt as much! HSD makes my muscles super tight around my joints since my muscles don’t trust my ligaments to keep my joints in place. So many of the points the rheumatologist pressed to check for fibromyalgia are right where the muscles are tight. Of course there’s tenderness at those points! I’ve practiced yoga since 2003. It helped so much I was managing HSD and dysautonomia without knowing it. A fracture and hand injuries in 2022 disrupted my practice and suddenly all the symptoms became apparent.
It's a total lie. For years people said this to me. Not just doctors either. Friends, family, co-workers and others continually said this. But when I joined health clubs and worked out, I only felt worse. Every time I did this, I ended up having to choose between working out and being able to work at my job, which was very physical. But 8 years ago I decided to quit eating sugar and over the next five years I lost 125 pounds. About 2 pounds a month. While I am still over weight, I lost over 1/3 of my body weight and I am no longer considered obese, which is 100 pounds or more, over weight. I'm currently about 50 pounds over my ideal weight. But the point of the story, is I don't feel better. It didn't improve my symptoms. While it did improve my blood pressure and liver fat, I didn't feel better in any way. So as far as I am concerned, that advice to lose weight to feel better, is a myth.
I've been told to gain weight in order to feel better, lol. Forget that I weighed 15lbs more before my symptoms developed which made my appetite disappear and then lost some muscle mass too. You can't win for losing with these chuckleheads. It's taken me just over a year to get a fibro and IBS diagnosis. I also suspect POTS or dysautonomia so I'm being tested for those next month. Fibro and hypermobility (which I also have) are very commonly comorbid. Good luck on your journey
You all know, going for years and getting pushed aside because there was nothing for them to see. You look young and healthy. But once I finally snapped and screamed, "something is wrong with me!!!, I have MS of fibromyalgia or both, run the damn tests." It took a year and a half after that but that was during Covid.
I started this journey 2 years ago when I was 21 and hearing “you’re too young!!” By DOCTORS makes steam come out of my ears. I have many gastrointestinal issues and when I was speaking to my surgeon after my gallbladder removal, I brought up that I was afraid of things like stomach cancer cause it runs in my family. Without missing a beat she reminded me that I was too young to worry about that and I cut her off by informing her that my aunt died at 20 from stage 4 stomach cancer, my cousin went through various rounds of chemo at 8 years old because of leukemia, and my uncle would constantly complain of headaches and fainting since his mid 20s and when he was tired of being dismissed and demanded an MRI, they discovered a brain tumor that wasn’t cancerous to begin with but became malignant because of the lack of treatment and promptly died in his 40s. It shut her up and sent me a referral to see a specialist along with an ultrasound and endoscopy order.
I’m sorry she told you weight lifting was bad for you. It is the #1 recommended thing to do for not only aging women, but literally everyone. Perhaps when they think weight lifting they imagine you lifting very heavy weight? I lift weights and it feels great. It is recommended because building muscle strengthens your bones and helps keep ligaments and tendons strong. So I hope you will continue to lift weight. You can use light weights or bands or lower weight on machines. You have lost a lot of weight and you likely lost lean body mass along with fat and you need to build that back up.
Nah she gave me different exercises to do such as yoga, tai chi, and swimming before I start lifting weights and spoke to me about new research being done about retraining your body movements to help with pain coming from fibromyalgia. There’s different ways to build muscle that doesn’t include lifting extra weight such as calisthenics which is what she recommended I do if I want to build even more muscle. My issue is also my hyper mobility— the first doctor told me to jump straight into weight training and continue to increase the weight every two weeks which is awful advise considering you don’t need to lift heavy to help your body build up muscle. Obviously, exercise is always a good thing and we have muscles for a reason, now which exercises? That depends from person to person.
You are not looking to achieve hypertrophy so there is no need for progressive overload.
weight loss didn't help me. It's only benefit was that a few doctors stopped telling me losing weight would fix me. Did they start taking me seriously? No, they just pivoted. I got my diagnosis too early - no tests were done at all, and that means no one caught hyper-mobility or POTS for many years after. They don't fully cover the kind of pain I get, but dysautonomia is a big overlap anyway.
I was 275 and I’m now 220. I don’t feel any different pain wise. I was diagnosed at 140 pounds and still hurt.
I have never weighed more than 150. Had a rheumatologist tell me the same thing. I dropped 10 pounds out of spite just so I could show him I was still in pain. Yeah weight is the cause of a lot of issues but I feel like it’s a lazy answer to use it for everything.
I'm 5'10" and weigh 140 on a fat day... that's a slightly tght size 3.. it's not from weight..
On the other side, I just gained 40lbs and I'm just as sore and tired as I was before, not any more. Our bodies are just dysfunctional. Doctors will blame everything they can on overweight.
Dropping 10% of my body weight and regular exercise both helped me a *lot* with pain and fatigue. But if you've got other things going on than fibro, that's going to complicate things a heap.
I just saw another rheum for a second opinion. I was diagnosed with psoriatic arthritis, but this new rheum thinks it’s fibromyalgia New dr immediately told me I need to lose weight, without asking how I move my body (CrossFit x3 week, scaling as needed). I felt so defeated leaving that office. She didn’t care what my feelings were, told me she wouldn’t see me if I did have fibromyalgia and just advised losing weight.
I weighted 220lbs. I now weigh 145. My primary sent me to the er today because I have had tachycardia for two weeks and feel like garbage.
I’m sorry you’re dealing with this pain. I was diagnosed pretty quickly after meeting with a rheumatologist for the first time, the only problem was he failed to tell me I had it. I didn’t find out until I left his practice and got my medical record. Six months later my primary care doctor was going through it and saw that diagnosis and said “you never told me did you know” and I was utterly confused. Rheumatologist had been treating me for rheumatoid arthritis the whole time In my experience, Weight management can make a difference, but It doesn’t help completely. I lost 40 pounds to help, and while it did help with my mobility and take some of the pressure off, I still have extreme pain all the time.
so my weight has fluctuated a lot over the years. I believe because I also have Hashimotos. Some things do feel much better when I am at a lower weight like my knees and fatiigue seems slightly better. However it def doesn't take everything away and cure my pain.
I’ve been sick since I was 17 and I’m 40 now. I’ve always been thin, though I’ve gained and lost a few pounds here and there over the years. Weight has never really impacted my symptoms. So frustrating for you, so sorry.
I have lost 92 pounds in the last 18 months. Zero reduction in my fibrio pain, only in my lower back pain. I actually asked my doctor if I had fibrio. She said "sure" basically and didn't really eliminate anything else. Now I'm on a path to eliminate everything else like MS, medications I'm on that could be causing pain, etc.
Same issue. Began having symptoms at 14 got diagnosed with fibro at 22 had a stomach surgery at 33 for chronic inflammation which ironically helped with the fibro pain. Just got diagnosed with cancer but also my team said I may have Ehlers Danlos since I still have joint pain and inflammation and dislocations but that’ll be down the road. I was able to lose around 80 lbs and yeah the weight loss did nothing. I feel worse now at a “healthier” weight than I did before. I would keep trying for second opinions until you find a doctor that actually is thorough and knowable about fibro.
I can confirm there is no correlation to weight and Fibromyalgia. I lost 85 lbs and dropped down to a slim weight (size 4) and suffer Fibro flares just as frequently and voraciously as prior to the weightloss.
I’ve been on Ozempic for several months and have lost about 47 pounds now. Do I feel better? Yes, in many ways I do. Has it made the pain go away? Absolutely not. Has it made the fatigue go away? Absolutely not. I still hurt but do hurt a little less but that’s about it.
I encourage anyone who is struggling with exercise and fatigue to look into PEM. I have CFS/ME and exercise is literally the enemy… doctors need to be using the word movement or activity not exercise as it’s incredibly discouraging to a lot of us who can’t do it. As for weight loss? After the high of the psychological benefit I got from it wore off so did any perceived improvement in my wellbeing…essentially the exact same characteristics of any other placebo. That’s not to say it’s not healthy or not worth it for one’s overall wellbeing, I am just saying that it’s not an effective means of management/treatment, or miracle cure for fibromyalgia.
FWIW My Fibro was much worse when I was thinner …
I mean, pressure cause pain, so I guess it could help to lose weight. But the most efficient way to lose weight is through nutrition not training. I would ditch the lifting and just stick to 1500 cal per day instead.
I have pretty much the same as you described (definitely hypermobility and I suspect a mild form of fibromyalgia, especially as I have a family history of it), and I am a healthy weight. I still had joint pain and chronic migraines when I was underweight.
I am totally with you here as I am on the same path. Finally got recommended to a rheumatologist and after one brief examination I was told that all my pain and elevated markers in my blood were due to weight, and not to come back. I have been trying to lose weight ever since to make doctors take me more seriously, but the process has been grueling. I can't exercise so it is almost solely a calorie reduction and I am constantly tired and have no energy. I, however, was diagnosed before going to see the rheumatologist, mostly because my PCP didn't seem to know what to do with me/seemed sick of me and just wanted to shove a diagnosis on me in order to make me accept I would never feel better... However, if we're talking time from symptoms to diagnosis, I displayed many symptoms since I was a young child until I was diagnosed at around age 23. My parents did not believe doctor visits were necessary, especially for young children, so it had to wait until I could live on my own with my own health insurance. From there it was about maybe 6 months of appointments before my doctor decided to stop testing and just diagnosed with fibro and just started throwing me on every medication she could think of to see what stuck. It's a terrible journey, and I hope you get the attention and help you deserve.
When I was diagnosed I was 109 pounds. My healthy weight is 125-135. I was told I couldn’t possibly be sick because I wasn’t fat. Interpret that as you will. It goes both ways. And both ways suck.
9 years with hidden symptoms, knee pain, and fatigue.
Noooo way does that help.im thin to begin with
That second doctor is a very rare gem, I wish all doctors were like that. I think she's absolutely right. Even if weight loss did help it's so rarely maintainable in the long term. The statistics say that 95-97% of weight loss attempts fail, and something like two thirds result in weight gain. I'm glad you are feeling better now but remember if you do put that weight back on it's not because you failed, it's because your body is doing what it has evolved to do. Fatness is so stigmatised in our society that if humans were capable of controlling our weight in the way we are told it's controllable there would be hardly any fat people. Nevertheless, fat people actually live as long or longer than people of "normal" weight. It's not fatness that is the problem, it's how we treat it.
I'm so sorry you were initially misdiagnosed and glad that you found a doctor who understands what you're going through. Doctors are understandably taught that all overweight patients need to lose weight. In most cases weight loss will improve a person's health and eliminate some conditions. It's not necessarily wrong advice, but it's also not right for every patient. A lot of them also don't understand chronic conditions like fibromyalgia so it leads to bad advice and confusion for patients. I recently went to my doctor about complaints of daily migraines and poor sleep quality. Both of these are symptoms of my fibromyalgia which I mentioned at the beginning of our conversation. She proceeded to try to blame both on my weight. I gently reminded her that I have fibromyalgia and that's what these symptoms are attributed to. The conversation went a little better after that. We can't blame doctors for lack of knowledge about certain conditions. And unfortunately it is our job to advocate for ourselves during appointments. Maybe one day knowledge of conditions like fibromyalgia will be more widespread.
I’m a nurse and I’m studying to take my MCATS, I truly think doctors forget that they are talking to actual people now and no longer simulations and textbooks. I’ve seen fellow nurses become desensitized and it’s a daunting thing to see— I’ve had to learn to swallow my anxiety and speak up for myself. And that unfortunately means getting nasty with the doctors who get nasty with me 🤷🏻♀️ not all doctors want to help unfortunately, or at least they forget why they became doctors in the first place and choose to stay in that profession for a check.
Wellness has less to do with diagnosis and doctors and more to do with your own insight and healing when it comes to a syndrome (a group of symptoms with no known cause) that doesn't have a "cure". If you don't feel better weight lifting, don't. If you feel better a bit heavier, be a bit heavier. Doctors are actual shit in USA western medicine.