Wednesday, June 22, 2011

10 Things "NOT" To Say To Someone Who Has Fibromyalgia

The following was written by my Fibromyalgia friend, Pam Ryan. Those with Fibromyalgia and Chronic Fatigue Syndrome will nod their head in agreement and a well-known understanding. Those who do not understand, will be wiser.


"10 THINGS "NOT" TO SAY TO SOMEONE WHO HAS FIBROMYALGIA...
by Pam Scott-Ryan on Wednesday, June 22, 2011



10. We all get more aches and pains as we get older.

The pain of fibromyalgia is much more severe than the normal aches and pains associated with aging. Little things that shouldn't hurt at all can be excruciatingly painful. Plus, most people develop FM long before they should be experiencing age-related aches and pains.

9. I think I have that, too – I'm always tired.

This statement shows a basic misunderstanding of the severity of the fatigue associated with FM. The fatigue of fibromyalgia is so much more than just being tired. It is an all-encompassing exhaustion. You are like someone pulled your plug, cutting of your source of power. It's kind of like taking the batteries out of the Energizer bunny.

8. My friend has fibromyalgia and still manages to work. Maybe you just need a job (hobby, etc.) to take your mind off the pain.

Translation – you must be lazy. The fact is, the severity of FM symptoms varies. Some people have fairly mild symptoms and are able to continue working. Some continue working longer than they probably should because they have no other choice, but they suffer tremendously. Others are so disabled they are confined to a wheelchair much of the time. While getting involved in a project can help to distract your mind from the pain for short periods of time, if you have a more severe case, it doesn't work well enough to allow you to consistently work a 40-hour week. And it doesn't help dispel the extreme fatigue that usually accompanies FM.

7. My doctor says fibromyalgia isn't a real disease; it's just a wastebasket diagnosis.

First of all, this doctor obviously hasn't kept up with the latest research, which clearly demonstrates that FM is a very real, physical disease. Also, to date the FDA has approved three medications to treat fibromyalgia and they generally don't approve medications for imaginary illnesses. There are a few doctors who will tell patients they have fibromyalgia if they can't figure out what is causing their symptoms and just want to get the patients off their back, but I have to question the ethics of a doctor who would do that.

6. If you got more sleep, you'd feel better.

Well, duh! One of the major problems with fibromyalgia is that something prevents the body from going into the deepest stage of sleep, when the body naturally restores and replenishes itself. Even if you manage to stay asleep for several hours, you're most likely not going to awaken feeling refreshed. And most sleep medications do little to help you achieve that deep sleep. They may help you get more hours of sleep, but probably will still not give you the deep sleep you need.

5. I read about this new product that cures fibromyalgia.

This can be one of the toughest comments to deal with because it is usually said by well-meaning friends or relatives who genuinely want you to feel better. The products are frequently some kind of “natural” supplement being sold through a multi-level marketing plan and are very expensive. If those making the suggestions are casual acquaintances, I generally just tell them I appreciate their concern and will look into the product. However, if it's someone closer to me who is likely to keep asking if I've tried the product, I go on to explain that there are dozens of products out there claiming to cure or at least improve FM and I just can't afford to try them all. Read Let the Buyer Beware for tips on how to evaluate product claims.

4. At least it's not fatal.

My first thought in response to this comment is always, “Yeah, but sometimes I wish it was. At least then I'd know there was an end to the pain.” I rarely say that, though. Of course I'm glad it's not fatal. But that doesn't help reduce the level of my pain or the depth of my fatigue. Nor does it help to raise research funding or bring attention to the needs of FM patients. Understandably, people tend to be more interested in preventing death than in improving the quality of life. Maybe I should start actually saying what I'm thinking when someone makes this comment. At least it might get their attention.

3. You just need to exercise more.

Often this is another way of insinuating that you're lazy. This comment in particular has always bugged me. Perhaps it's because I used to be a dancer and aerobics instructor. If more exercise were the answer, I'd be all over it. Yes, exercise is an important component of any fibromyalgia treatment plan, but it's only one part and it has to be approached slowly and carefully to avoid triggering a flare. Read Fibromyalgia and Exercise for more information on how to incorporate exercise into your FM treatment plan.

2. But you don't look sick.

This comment puts the FM patient between the proverbial rock and hard place. If we let ourselves go and show how we actually feel, people are uncomfortable and don't want to be around us. On the other hand, if we manage to fix ourselves up and put on a brave face, no one realizes we're sick. If you think about it, most chronic illnesses are invisible. My dad had heart disease but looked great until the moment he died from a massive heart attack. My mom had pancreatic cancer but looked fine. She didn't even know anything was wrong until it was too far gone to treat. She didn't “look sick” until the last couple of weeks of her life when she was confined to bed. Just because someone doesn't have visible sores or a crippling deformity doesn't mean there's not a serious illness just under the surface.

Ta Daaa...... Here it is - the number one thing you should NOT say to a fibromyalgia patient:


1. It's all in your head.

This is the all-time worst and most insulting thing you can say to someone with fibromyalgia. I used to launch into an explanation of how FM is a very real physical illness, complete with symptoms, etc. Now I simply say, “You're right, it is in my head. Researchers have found that there is a problem with how my brain processes pain signals.” Enough said."


I hope this article allows you to think before you comment. Fibromyalgia and Chronic Fatigue Syndrome are real diseases. Although the person looks like there is nothing wrong, if you watch, you will notice how they gingerly stand from a sitting position or lower themselves into a chair. You will notice periodically that they substitute a word for another. Their cognitive process works as if the electricity can't get through the line without interruption. Their balance is not as good as it once was. They have trouble lifting a ten pound bag of potatoes. They are always physically and mentally tired. Be observant of your friends with Chronic Diseases, including Fibromyalgia and Chronic Fatigue Syndrome. Your friendship with be better for it.



You can .... be of help to those with Chronic Diseases, ask how


You can .... explain your Chronic symptoms to your friends. If you are like me, you will cry while explaining.


You can .... take a nap today .... do it!

46 comments:

  1. Dear Deb and Pam,
    Thank You, Thank You,

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  2. I'm a new reader to your blog, having just set up my own and scouring the net for other like me. This post rocks, and I've just included you in my blog roll. I must have heard nearly every single one of these over the last few years, and you're right, mostly from well meaning family and friends. Your post made me laugh, in a sad way, because I know EXACTLY what you mean.

    Thanks for sharing. You have a great blog.

    L x

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  3. I have heard all of these too. I am lucky enough to be able to manage mine at this time but I know that can change at any time. Good post Debbie. B

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  4. Thank you!! I am going to print this and give it to a few people, hopefully reading it will help them understand why when speaking I often can't string a sentence together! It's so reassuring to know that there are people out there in cyber world who understand

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  5. Number 11 should be "Oh, I used to have Fibromyalgia, but I got rid of it". Great article and thanks!

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  6. JaneAvril's comment on a #11, I've heard many many times "OH, I used to have that..." GRRR, I just want to strangle people when they say that to me.
    Great post btw, I may have to share this on my blog also (with full credits to the wonderful author of course!) This just has some great information that needs to get out there. I hear many of these things daily and it is so frustrating to combat them without batting people over the head or just crying in frustrating because they just don't understand. Thanks so much Deb, and thank you to Pam for writing this top 10 list. Gentle fibro hugs!

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  7. I work with a lot of fibromyalgia patients and believe me--their pain and symptoms are real! I'm going to forward these tips to a few of my patients to spread the word. Thanks for your effort to educate.

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  8. Lisa Marie Price, thank you for continuing to help your patients.

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  9. Goooooood hell, yup that's a great list. I HATE hearing those things. And I haven't been officially diagnosed, but dangit, they ring true.

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  10. Thank you for the list; I was diagnosed 17 years ago by an Orthopedic Surgeon. Anyone getting good advice or relief for the condition?

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  11. Thank you Deb... I was accused of "scamming disability"... well that really made me blow up! I'm normally a peaceful person but I blew at that one. #1, it wasn't easy to get on it as you know and #2, who would CHOOSE to be on it, the money is not that great! I do part time playing music, it takes my mind off my pain, but I am reduced to the amount of practice I can put in, a half an hour spaced out over the day. I'm going to post this on my facebook! Thanks so much!

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  12. Thank you!! I am going to print this and give it to a few people, hopefully reading it will help them understand why when speaking I often can't string a sentence together! It's so reassuring to know that there are people out there in cyber world who understand

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  13. Nearly half of patients diagnosed with fibromyalgia relies on alternative therapy to try to improve the symptoms of his illness, and one in three sees success, at least in part. These therapies allow only 3 per cent of those affected leaves the conventional treatment. I read in Findrxonline it is better to use alternative therapies who buy pain relievers like oxycodone and vicodin online due to side effects.

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  14. I completely relate to all of these symptoms 14 years ago. After teaching for over 20 years, I had to take a total disability. The good news is I have been able to get completely out of pain and get off drugs. The energy and sleep are so much better. It did take some time and some work, but I kept working to identify and correct what was out out of balance in my body. I was so tired of just covering up symptoms with medications. Since I regained my health, I retrained as a nutritional consultant and have been trying to help others. I have written a book to share what has helped me and others I have worked with. it is endorsed by Dr. Jacob Teitelbaum www.reversingchronicdisease.com

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  15. Thank you for sharing this, Deb. I am trying to learn more about Fibro, and your blog paints a very realistic picture. I look forward to learning more here, and how I may be able to help with Softub. Softub is not a cure, but does provide a great source of natural pain relief through Hydrotherapy.

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  16. As a hypnotherapist I am very aware of the power of your mind and how we can create pain for attention. (Having done it for 20yrs myself) You might not like it, but its true. Don't put don't others for their ignorance of your 'illness'. Sometimes they are trying to help. Fibromyalgia is a permanent state of negativity which cripples your body and mind. If it was anything else then there would be evidence and a cause of the pain. Also it is treated with psychiatric drugs which says it all really.

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  17. Thank you for this. Several of my friends have fibromyalgia and have told me they think I do as well, based on my symptoms. I try to be patient and understanding with my friends and not say any of these things, but I do get frustrated with friends who do nothing but complain about their fibromyalgia while not making any attempt to manage it. From my reading, and please correct me if I'm wrong, caffeine and alcohol can seriously exacerbate the symptoms. So in my mind, drinking coffee all morning and then alcohol every afternoon/evening are probably not the best ideas when it comes to managing your illness. I do understand that exercise can actually make symptoms worse so it's important to go slow and find what works; nevertheless some form of exercise will help with symptoms. Thanks, again, for this list. I'm going to share your blog with my friends.

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  18. I just started a blog for my family to read and learn about FMS. May I borrow this for them to read?

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  19. I love this!! Just found your blog :) I wish there was a way to direct link this for posting! I want to post on Facebook but not sure the best way to do this. I also live in Oregon:) and was just "Officially" diagnosed yesterday but have probably had for 20 years, now that the Dr went over my history. I just always found a reason for my pain and exhaustion until I literally couldn't move anymore and had to take a leave of absence. found out 2 months later that Vit D level was extremely low ( 4) OHSU refused consult until It normalizes. At least they were the ones that requested the lab work or I would still be on deaths door! I was able to get consult with Dr in my town yeah ! Still in a bit of denial hoping it was just the low Vitamin D but beginning to realize I've been sick for a long time, I've just tried to ignore as much as I can, and have had attendance issues at work for years even with FMLA for migraines! thanks again

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  20. This is an excellent list! Thank you. I too wish I could post it on Facebook.

    If you are interested in additions, I would suggest:

    If you are selling something, please do not use my condition as an excuse to try to sell your product to me. If you are really concerned and you really think what you are selling might be helpful to me, then offer me a free sample or offer to sell your stuff to me at your cost. I cannot believe your lines about being "in it to help people and not for the money" when you are in fact profiting from, or trying to profit from, my misery.

    Also, please do not try to pass yourself off as knowledgeable about fibromyalgia by tossing around the term "fibro" as though you are vastly experienced and intimately familiar with it. I am living with it around the clock, day after day, year after year, and you are not. All right? (In my experience, this nonsense comes from the same folks who try to sell me stuff.)

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  21. Thank you for putting in writing all the frustrating comments I have had to hear for the past 18 months,from living with fibromyalgia. I am a wife ,an active outgoing mom of 2 teenaged girls and a nurse. I have worked for the past 30yrs . I have a great family ,lots of friends, I have travelled and I love my nursing job.I was diagnosed apx 6 yrs ago with fibro but it didn't slow me down. I still ran and exercised regularily. Unfortunately ,my life changed dramatically 18 months ago.I had a" flare " or "flare up " and have not been able to work and I am not that fun-loving person I once was.Constant chronic pain has changed me. This is a very difficult disease to live with .I was told there is no cure . I have done pretty much everything to help myself. I exercise , take my prescribed meds ,meditate ,pace myself, take short naps and look after my so called depression by seeing a psychiatrist. All this and I gotta say I feel no different. Its a hard diagnosis to accept and a harder one to live with. For me its frustrating when its suggested to me to "go to bed " ,when I have pain. This does not take my pain away ,it just makes me feel isolated !!

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  22. I am newly diagnosed but have been fighting to get GP's to listen for many years. I saw a Rheumatologist on Monday and woo hoo finally someone with half a brain. Unfortunately this diagnosis is a double edged sword. I ask myself what my future holds. I have taken a lot of sick days in the last two years and I struggle just to do the basics each day.There is a post from a hypnotherapist on here and reading between the lines was saying its all in the mind. let me tell you I have spent "thousands" on hypnotherapy to "cure" this. I believe in the power of the mind and its only that power that keeps me going each day but my mind can't cure me cause my brain is faulty. Deb thanks for posting your list it helps x

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  23. Thank you seriously for posting this.

    I was formally diagnosed around 14 months ago after a previous two years of steadily worsening symptoms and some mistakes. I was told I had everything, from insomnia, chronic fatigue syndrome, ME and then finally Fibro.

    I'm a uni student, and because of the fibro I have recieved disabled student support, which have supplied me with equiptment and finance aids. I am a sufferer who has varying levels of severity in my symptoms.

    Originally I just had the fatigue, the aches didn't manifest until 7-8 months after my diagnosis. And now I have some days when appart from a sleepiness and lethargy I feel "normal", and then I have days when even movement is impossible until late afternoon, and then I can only manage to make something basic to eat before basically passing out again..

    Some of my friends, who I love to pieces, have said similar things to me, and at first I could shrug them off and laugh but now they do get to me at times. Especially one friend who is having financial and equiptment troubles and doesn't qualify for aid, she is the most likely to come out with these things and I know that she doesn't realise how frustrating it is to be told to basically shrug it off, when you've probably tried that already.

    I'll definately be passing this on, and I may even start my own blog.

    Thank you!

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    1. From your friend's perspective, though, it must be equally frustrating to see someone getting money because they're tired and in pain. I don't really see how money can help fibro, so I can see why someone would be frustrated to see you getting money when they need it.

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  24. I just stumbled onto your post after another frustrating week of get togethers with friends that I came away feeling very insecure and a bit like a hypochondriac. I was just diagnosed a year ago, but the docs figure I have had it for at least 15. I have chronic pain, horrid insomnia, body temperatures that feel in the 1000's when i try to sleep, a brain that skips a beat or a whole topic in public and at times low self esteem. I am an art teacher, a professional gardener and a potter and I am watching my life fall apart. I feel as if I want to leave, live alone and not even be around people as I am not "me" anymore. I used to ski until I dropped, backpack, run rivers, trail run and now I'm feeling angry and alone. reading these make me feel a bit better knowing I'm not so alone after all. Sure wish they could fix the rest.

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  25. There's such an arrogance to the FM community on the internet. 'Oh, we KNOW it's physical!' Oh, because you're a qualified doctor now? There's massive debate about this in the literature, and a lot of doctors are still coming down on the side which says it's not a physical condition. That's NOT saying your pain isn't real, I don't understand why everyone gets so upset about the idea that it might be somatic or related to stress. Stress can do incredible things, people have been in wheelchairs with somatic disorders. Their symptoms are real, the impact on their lives is real, but it wasn't a physical problem. If people with FM want help, they should be open to this approach: many studies show CBT and exercise to be effective. Of course, that may just be because those things help in any type of pain, but it may also be that this is a somatic disorder, or the far end of the spectrum of normality. I don't understand this desperate desire to 'prove' it's physical, to the point where that clearly surpasses the desire to get better. Do you think you're better than people with mental illnesses? They're not real diseases? If not, why so hostile to the idea that you might have a mental problem. Not made up, but not physical. If it were as clearly physical as you seem to think, why has that not been proven?

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  26. Also, the fact that it's been proven that the brain wrongly processes pain signals in FM is not 'proof' that it's not mental. The brains of depressed people process information differently, the brains of anorexics process differently (and they have a lot more physical symptoms than FM, including a level of fatigue which is devastating, but normally ignored by sufferers. How do you know their fatigue, trying to pull their bodies around with no fuel, with failing hearts and organs etc. isn't worse than yours, but they keep going until they're pulled into hospital in most cases). Those are still mental disorders. We can see pain on a brain scan whether it's somatic or physical, you can see the reduction in pain signals when someone is given a placebo, does that mean the placebo is a real physical drug? You're not scientists. Stop thinking you know more than everyone else. Also, did you ever think that you have no idea how anyone else feels? How do you know that other people never experience what you feel? Maybe they're better at covering it or ignoring it. You have no idea, all of this is subjective. It makes me so angry as someone with mental health conditions that you're so dismissive of the idea that this might be mental. I entertain the thought that other people who don't consider themselves depressed or who aren't diagnosed with depression might feel the way I do. I don't htink they do, but I'm aware that it's possible they do. Yet FM sufferers won't even entertain the idea. It's ridiculous, arrogant prejudice.

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    1. I want to first say that I hear your frustration about mental illness. I have Bipolar and fibromyalgia. These two diagnosis are common together. What I think is amusing is that this is the EXACT same list of comments that upset me when people say them about my mental illness. Mental illness IS physical. When people say it is mental they are often telling you you can just get over it. If you tried hard enough it would go away. What most people don't get is that we have tried most of the easy answers and are still having to cope. I think you missed the idea behind this post.

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    2. I didn't miss the point behind this post. I was simply making another point about the assertion that FM isn't mental. We do classify things as mental or physical, but of course all things have a physical base, which is why the 'brain scans' argument for FM being physical is bs. There's still a difference between something with a somatic cause and something with a physical cause. Mental illness is physical in a sense, but so is every mental or emotional state. These things are very complicated to talk about because our language around these topics is loaded and misleading.
      My only point is that it's incredibly arrogant of people who aren't medical researchers to think that they're privy to the source of their illness because they have it. I don't know whether my illnesses are physical or simply have a physical base. Research hasn't really got to the bottom of that, yet, and it's probably the case that it's an interplay between the two. Either way, it would be incredibly arrogant of me to start telling people that I -know- my mental illnesses are physical because I can -feel- that they are. No one's saying 'mental' means 'not real' which is what half of the commenters on here seem to think. I'm just saying you should probably question yourself before you start making statements that the most experienced experts in the field couldn't even back up.

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    3. Thanks for your comments. By 'somatic', do you actually mean 'psychosomatic'? Somatic means something that relates to the body, therefore physical in nature.

      I agree with the spirit of your comments though; this is a little-understood disorder and none of us should pretend to be an expert. However, it is even worse when people who know even less than the sufferers about the condition try to offer some 'practical advice'.

      I do not think that FM sufferers, or specifically the ones who contributed to this post, are an arrogant bunch; I would rather say that they are a frustrated lot and we hope that more research is carried out into this condition over the coming years.

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    4. When I go to a job I enjoy and by the middle of my shift the pain is so terrible I am out of my mind to find relief bit there is none and when I finally manage to creep slowly to the car the drive home is a nightmare can barely remove my self from the car just to realize my legs will not move I feel weighed down and drag myself in the house can't sit ooh no if I did I wouldn't be able to move for hours severe all over pain that renders me immobilized I love my job enjoy the people and the work the pain is a 10 ft brick wall I have to hit and scale everyday if it is mental that's fine but don't dismiss my pain its like recovering from a car wreck everyday that never ends years on end and yes I have finally apply for s.s.d but believe me I've been as far as I can go

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  27. 'Also, to date the FDA has approved three medications to treat fibromyalgia and they generally don't approve medications for imaginary illnesses'

    Lol. Do you know anything about the FDA and its history?

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  28. People are so quick to judge ! My 14 daughter who is an international keynote speaker competitive swimmer and a runner was just diagnosed with FM ! I can tell you first hand it's not mental ! She refuses to let it run her life and continues to swim daily to keep her body healthy . It saddens me that people who do not have FM are so quick to say its mental so judgemental of them ! But to all the others with FM stay strong your walk is your testimony your life is your strength ! All things work for good there is a purpose for everything and all things are possible don't give up !!!

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    1. You appear not to understand what is meant by 'mental'. Do you think people don't fight depression? That there aren't people who get on with things even when they're depressed? Does the fact that they do mean that depression isn't a mental illness? Do you think a mental illness is just mental weakness? What the hell is your point?

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  29. lol. this is a joke.every woman i know with "FIBROMYALGIA" is overweight and lazy.when they want to go out there fine but when it comes to cleaning the house or god forbid asked to work they have a "flare up" this whole thing is hocus pocus.

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    1. You are sad and ridiculous.

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    2. what makes me laugh about this, is that they don't have the guts to say who they are.... so it only worth laughing at how pathetic they really are

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    3. "Anonymous," of course. Synonymn = coward. I've had Fibromyalgia for over twenty years. I was diagnosed at my physical peak while a bodybuilder and multiple blackbelt holder, AND I'm not an overweight woman... I am a man. Hey, your ignorance is showing. You might want to cover that up.

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  30. Thanks you anonymous! You are so right! Most people with "fibro" are lazy and overweight and are just trying to get narcotics and disability. Get off your asses and get a job. Lose some weight. Take an antidepressant.... funny how psychotherapy is among the most effective tx approaches.... because "fibro" is a somatoform disorder! Evert ache and pain is not something that needs to be medicated. Get some exercise.... leave the meds for those who actually warrant it.

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    1. Such ignorance still... and it's almost 2014. How pitiful.

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  31. Thank you for this, it made me cry just reading it.... because the pain is so real and dibilitaing at times, its hard to take people that think there's nothing to it. There are days I feel on top of the world where nothing can touch me, but that's all they are just days, because there are more days that are the total opposite amd its a battle to fight the pain and fatigue... so thank you. I hope more people read this and get a little better understanding of FM xxx

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  32. boo hooo with your fake disease. no one fucking cares ya goddamn junky. maybe if you wasnt a opiate addicted pill head you wouldnt have your "pain" and btw, how fucking dare you claim your pain is worse than anyone elses. fuck you, you scum.

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  33. oh and, again, FM is not a real disease, its a fake disease which lazy worthless people "Suffer" from (actually an excuse so you junkies can get perscription heroine) I have pain, everyone has pain, you are not special, your pain is not worse than anyone elses, you are just junkies who have destroyed your nerves with Opiate ABUSE. Cuz really, am I the only person who has noticed the "Symptoms" of FM are exactly the same as the side effects of long term opiate abuse? yall can kiss my ass.

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  34. Good stuff in this. I too have heard them all. Such frustrating experiences. This was great. In fact, I'm going to use it as a springboard for a blog of my own on the issue to help us Fiborites get the word out. I'll use the same ten, but change it to my language, expand in areas, omit some information, etc. It sure is nice being reminded I am not alone in this battle.

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  35. OMFG, you seriously know fuck all about the FDA, do you. Fibromyalgia is the FDA's dream. A diagnosis with hazy symptoms that basically everyone has to some degree, with no physical test to confirm its presence, that's lifelong with no real cure, so they can keep prescribing you drugs galore until you die? You know they're out to make money, right, that they allow people to market drugs that are proven to be harmful in multiple studies if they can submit two that show it's beneficial over placebo or over an alternative, regardless of how much they've manipulate the use of the alternative drugs to get their drug to look like it's more effective/has a lower side-effect profile. The FDA is one of the most deeply corrupt institutions in the country. It's controlled by money, and Fibromyalgia is a golden fucking ticket for drug companies. I'm not saying that means Fibromyalgia is or isn't 'real', just that you have basically no understand of how diseases are classified or how the FDA and the DSM work. They are all in the business of pathologizing normality because it's the most profitable things they can do.

    And how the hell do you think you know this isn't a mental disorder? I just... I can't even. I agree with the commenter above. This is just extreme arrogance on your part. But good luck with carrying on with believing you "know" you don't have a mental illness. You do realise just how offensive it is that you think the worst thing someone can say about your condition is that it's mental?

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    1. *manipulated
      *understanding

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