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Chronic Disease, Pain

Fibromyalgia – living with a controversial chronic disease

Fibromyalgia – living with a controversial chronic disease

Updated 11-8-13: A just-published Stanford Magazine piece focuses on chronic pain and highlights research – including some on fibromyalgia – being done at Stanford.


8-13-13: We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; the latest comes from health writer Marijke Vroomen.

I can’t imagine anyone relishing the idea of being tired, in pain, or suffering from “brain fog” for one day, let alone for months or years. If you have fibromyalgia, this is what you experience on a regular basis. Yet there are people who believe that fibromyalgia doesn’t exist – that it’s a made-up disease with the purpose of appeasing patients, giving their complaints a name.

Incidences of muscle pains characteristic of modern-day fibromyalgia have been documented for centuries, but only in the 1970s did the disease begin receiving serious attention as physicians began to better identify trigger points, inflammation, and fibromyalgia-associated issues such as sleep disorders and irritable bowel. And only in 1987 did the American Medical Association recognize fibromyalgia as “an emerging condition.” But saying it’s a disease and convincing non-believers are two different things.

I’ve been asked what it’s like to have fibromyalgia and, just as it’s difficult to diagnose, it’s difficult to explain. Although I was only diagnosed a few years ago, I can trace the symptoms to my teens. I often experienced unexplained bouts of exhaustion and pain. I never slept well. I had other fibromyalgia-related physical issues, but no one could figure out what was wrong. After a while, I began to believe that it was all in my head. I knew I felt the pain, but there was no explanation. I knew I was exhausted, but everyone is tired – why would I be any different? The other symptoms? I was overplaying them, complaining too much, imagining them, looking for attention, wasn’t I?

My family and close friends were (and still are) wonderful. They never made me believe that I shouldn’t be feeling what I was experiencing. They tolerated my quirks, such as the hypersensitivity that results in a very strong startle reflex and not being able to stand the feel of certain things against my skin. (It wouldn’t surprise me if the princess in fairy tale The Princess and the Pea had fibromyalgia!) My husband, my children, my friends, all helped me when the pain was bad and the exhaustion overwhelming. But feeling so different and not knowing why take a toll on a person.

I did what many with fibromyalgia do. I withdrew into myself. By withdrawing, you minimize your chances of being criticized or attacked by those who don’t understand your “nonexistent” illness. But at the same time, because you are internalizing everything, your symptoms become worse. Your mind plays more games. And the cycle continues.

I cried when my rheumatologist told me I had fibromyalgia. I told him I wasn’t crying because I had it, I was crying because I finally had validation – that this was real. My pain was real. My illness was real. He told me that many patients react the same way. How sad.

A year ago, I began a project called 101 Questions About Fibromyalgia. I asked friends and colleagues for questions, either from the point of view of having fibromyalgia or loving someone who does. I received some great questions but I also received a long e-mail from an editor whom I had never met. Her angry e-mail outlined exactly why fibromyalgia doesn’t exist, point for point, but she also told me that if having a name for my illness made me feel better about myself, then it was OK with her.

This is why many people with fibromyalgia don’t speak out. There is no such anger against people who say they have diabetes or cancer or Crohn’s disease – but it’s acceptable to brush off, deny, or criticize a claim that you have fibromyalgia.

Living with any invisible illness can be difficult. Living with one that still is not accepted by many is so much harder.

Marijke Vroomen Durning, RN, is a health writer based in Montreal, Canada. She is a contributor at, HealthDay News, and other outlets. Find her on Twitter @MarijkeD.

Previously: Study shows poor sleep may increase risk of fibromyalgia among women, How to cope with an “invisible illness” and Can yoga help women suffering from fibromyalgia?

91 Responses to “ Fibromyalgia – living with a controversial chronic disease ”

  1. Lynne Says:

    Excellent article and one that others with other “unaccepted” diseases like depression can relate to. Once again Marijke explains an issue in easy to understand terms and uses her own experience in a very courageous act. Kudos

  2. Marijke Says:

    Thank you Lynne for your kind comment.

  3. Shannon Says:

    I was diagnosed with fibromyalgia 5 years ago. My symptons were so extreme that my doctor took me off work. The first 4 years were spent learning my physical limitations. This past year is the best I have felt in 20 years. For me, the hardest part was accepting my limitations and asking for help from my friends and family as I have always been a very independent person. My friends, family and doctor are all fantastic. I couldn’t have wished for a better support system.

  4. Clifton Says:

    Thank you for this article Marijke. My spouse was diagnosed with fibromyalgia a few months ago. My spouse expressed the same behaviors you mentioned in your article when the diagnosis was delivered. What has been most difficult for me in regard to having a loved one with fibromyalgia is bearing witness to the effect the symtoms of fibromyalgia has had on my spouse without being able to do much to help relieve the pain, fatigue, and episodes of depression.

  5. Cheryl Q Says:

    Wow, this explains so well what it’s like to be sick with fibro, prior to diagnosis, and the daily struggle of dealing with the skeptics and disbelievers.

    I once had two people walk behind me in a workplace hallway, commenting loudly that I was limping on the other side the day before. I was too fibro-fogged and depressed to even explain to them that a) I wasn’t limping, I was hobbling (i.e. from painful hips), and b) that with fibro, it’s quite typical to favour your bad side one day and have your so-called good side become worse the next day.

    It still haunts me that they thought I was faking. Fibromyalgia isn’t life threatening (at least, not immediately so — statistics show we are at a greater-than-average risk of death from both suicide and accidents, such as car crashes). It clearly is quality-of-life threatening. I wouldn’t wish on my worst enemy the two decades of healthy life that I have lost to this disease.

  6. Vickie Says:

    Thanks so much for your article. I was diagnosed with fm 11 years ago. I still live largely with the stigma of being diagnosed with this invisible illness. I find that by helping others I can help myself. I facilitate a support group and am a member of many fm/chronic pain organizations. I believe that until we all band together and advocate for ourselves and each other, fibromyalgia will never get the recognition it deserves. Yes, it is hard work that we shouldn’t have to do…but no one will do it for us, and WE are the experts!

  7. Elizabeth Says:

    Very good article. I am an oncologist with ME, which as you will know overlaps a lot with FMS.
    I am appalled a the way I and other patient have been treated by many doctors here in South Africa – similar to attitudes about antibiotics for peptic ulcer disease even when proven to work and so many other instances of doctors not accepting evidence

    See oped Myalgic Encephalomyelitis in Cape Times newspaper May 2013

  8. Toni Shiffman Says:

    Wonderful article and very touching comments. I was mocked at work in exactly the same way as Cheryl Q. May such people never need the understanding of anyone around them.

  9. Nellie Gregory Says:

    Very good article and one that puts a face on fibro. It was also eye opening to read about others who have been treated the same about the non-acknowledgement of their Fibromyalgia disease.
    My family all knows that I have it but there is
    always someone who thinks that “maybe you don’t really have fibro but are just tired or don’t exercize enough!”

  10. Debra Says:

    Having IBS and Fibromyalgia, I’m all to familiar with being treated like a “head case”. I can’t tell you how many times I have been referred to a Psychiatrist!

  11. Cindy Says:

    Though kind and loving, my husband could never seem to grasp how I am affected by my fibromyalgia. Finally, I was able to get through to him when he suffered a bout of influenza. He’s so rarely sick, he complained vociferously about the fever, chills and body aches that beset him. I said to him, “Honey, you know those muscle pains and body aches you’re feeling right now? I feel like that nearly EVERY day!” I could see the light bulb come on in his eyes as he finally got it. Now on my worst days he’ll bring me flowers to cheer me up or whip up a pot of soup. (Though honestly, his understanding is the best thing he can give or do for me when I’m flaring.) It helps, but fibro still sucks….

  12. Marijke Says:

    Thank you to everyone who has left a comment. When I was asked to write a piece about living with fibromyalgia, I wasn’t sure what I would say, but from the responses we’ve been receiving, I think I struck a chord. While I’m sorry that so many people were and are in the same boat, I am delighted to know that we have this common understanding and that I may have helped some people feel that they’re not alone.

  13. Andrea Del CId Says:

    All I can say is thank you for giving those of us with Fibro a voice.

  14. Thetruth Says:

    I see people on disability all the time for this. Majority of them do not exercise or eat a healthy diet. None of them are on any specific exercise or diet regimen. The same could be said for just about every disease. I also find it curious that mostly women have been posting here. Are majority of people diagnosed, women? Just curious, thanks

  15. Marijke Says:

    Yes. If you research the disease, you will see that it affects more women than men. As well, men who have the symptoms are even more likely to not be diagnosed because drs don’t think of it for men.

    Many autoimmune diseases affect more women than men, just as there are other diseases that affect more men.

  16. Marijke Says:

    I meant to add as well that I go to the gym and do a minimum of 40 minutes of high level cardio and 20 minutes of weight training at least three times a week and I am also the “right” weight for my height and I eat well.

    Imagine feeling exhausted all the time and having non stop pain. Think about the worst you have ever felt, maybe you even had the flu. Exercising is difficult when you feel your best, but imagine what it is like to do this if you feel terrible.

    That being said, it is much easier to see people with fibromyalgia or any similar disease who fit a preconception than those who don’t. It is amazing how many people who are sick who don’t look it. You will never know either, because you just can’t tell.

    I would rather assume that those who are ill are although it is always possible that some aren’t. But isn’t it better than not believing those who are?

  17. Barbara Caceras Says:

    Great article!! I have the fibro, IBS, crohns, hypothyroidism and osteoarthritis. The pain is real, the tiredness is there everyday. I still work full-time but complain constantly about being extremely tired. I am told to exercise but it hurts to exercise. I have also had colon cancer and chemo. Don’t know what the answer is!

  18. Janet Says:

    I can relate to every word you said in the article totally. I have never looked at so many doctors in my life before and cried and said “Please find out what is wrong with me” and yes I think crying is normal when we finally get diagnosed because we do now have validation for ALL the symptoms we have. It is unreal how many symptoms we can have and how they vary daily. I also get what Cheryl said about the limping. No one can really get what we mean unless they have fibro and it is strange how we can limp one minute or one day and not the next. I have tried to explain to friends how one day I could jog to the mail box and the next I can barely make it to the mailbox. I am also sorry to hear what everyone is going through but it is also reassurring and therapeutic for me to read these things and know I am not alone. I actually try to hide my illness as much as possible because of comments that are made by others and the feeling that they give you like…I am just crazy or a hyperchondriac, but you can’t hide but so much. I get so angry at people like the woman who said “if having a name to your illness makes you feels better than that’s ok” and her outling why fibromyalgia doesn’t exist, well it does, and so does ignorance. My prayers go out to you all, stay strong!

  19. Steven Says:

    An explanation of fibromyalgia from a Chinese Medicine point of view and a few historically viable treatment options.

  20. Betty Says:

    Thank you for posting this article. My husband was recently diagnosed with fibromyalgia. I have cried several times for him, because I know that he’s been suffering for at least 4 years, and we just now have a name for it. I feel guilty, for, at times, I thought he was just being lazy. I now know he wasn’t, and it kills me that I didn’t see the whole picture before. He’d be exhausted and no real reason why. He’d feel achy, thinking he was coming down with the flu. It all makes sense now, and it pains me to know what he is going through. We are still trying to figure out what helps and what hurts, and I pray. I pray for you all, the sufferers and their families.

  21. Leslie Oberhelman Says:

    I was diagnosed in 1998 and have lived with this “catch all” label ever since. This year has been particularly frustrating. I am told that my colitis-like symptoms are FM; my severe sinus headaches and ear pain have no infection basis so the pain I experience is FM. I have had all of the symptoms at one time or the other. I wish someone would find a solution that really works.

  22. Jamie Russell Says:

    I was diagnosed with FMS about 10 years ago. I went through a battery of tests all which came back normal. The Dr. loaded me up on various medications and told me there was no cure and that I would be taking those meds the rest of my life. I took the meds for about a year. Something miraculously happened one day, you can call it what you may, I say it was a spiritual awakening. For many years prior I had been abused by my ( now x)husband, lost a child, and had many failures in life. I somehow blocked or suppressed those emotions from my mind and somehow I “knew” that those emotions were expressing themselves into physical pain. Yes, my blocked emotional pain became physical pain. It has to escape somehow. Then the journey began. I quit the meds and began therapy with a psychologist. It was painful to “go back” and reconcile and forgive, but I did it. I took back my power, changed my diet( gave up processed sugars, wheat foods)changed my negative thought patterns. It was a lot of work and it took time, but I feel fantastic and the pain is gone!I hope for only the best for those who struggle with this.

  23. Ruth Says:

    I was diagnosed a few months ago with FM. I went for a Hernia op on 29/02/11, in a hospital that had just been reopened after having had a outbreak of C-Diff. What do you know after I got home and was getting treated for phunomia which I got while in hospital, I ended up with C-Diff which I had contracted while in hospital. Then few months later the joint pain and muscule pain, fatigue and depression started. I have been feeling like death warmed up since then. Have been pumped with so many different kinds of drugs, I lost my hair, lost 25kg’s in a matter of months, now my kidney’s have packed up, lost my job and now my husband is more like a carer. My brother and his little family think I am making it all up and because I don’t go and see them because I am to unwell, they now just ignore me and act as if I don’t exist. The only other person in my family that understands is my mother who has Ostioarthritis and other health problems. I cannot believe that my life has gone down so badly all because of a stupid little op. Thanks so much for this blog, makes me realise I am not alone. God bless.

  24. Theresa Says:

    Thank you Marijke. Excellent article. I’d like to share on my blog. I feel so vindicated and understood. I could never express hearing from others with FM and their words are your thoughts are so relieving. No, I’m not crazy, It is real. Even though my rheumatologist has been telling me since 2006 he made “official” diagnosis on my super bill 3 visits ago. I, like you cried all the way home. No one understood. If you knew already, why be so upset now? Because know one believes it’s real. I worked in the dental field and even the doctor I worked for the last 6 years of working didn’t believe in FM. He claimed it was a name they made up for patients they couldn’t figure out what was wrong with them. I never said anything. I almost believed it myself.
    I’ve been blogging for a year and a half regarding my chronic back pain and searching for relief. I’ve told how with no other hope I had a spinal cord stimulator implanted. When the diagnosis of FM came I briefly mentioned but have been scared to talk more about it. I wish I could get my husband to understand more. I must join a support group.
    God bless you and your great writing.

  25. Dr. Mapa Haano Puloka Says:

    Very good article and thank you for the sharing.From the others’ comment I realize the importance of highlighting “the reality of the experiencing of the pain” by the person with Fibromyalgia( FM).In fact the pain is real and genuine.
    There are many medical doctors who inform their customers that the pain exist in their mind.For those medical doctors who does not believe in the existence of the diagnosis of FM I suggest that you read more about the condition( literature review) and to see more customers. But I understand that the best way for a medical doctor to gain or have insight or great understanding of the medical condition( FM) is for that particular doctor to contract the disease.

  26. Dr. Mapa Haano Puloka Says:

    Hi everyone and happy new year as my previous comment the Kingdom of Tonga was already entering the new year 2014( it is now 04:15AM the 1st of January,2014 here in Tonga), may be the first comment on Fibromyalgia for the year 2014.
    I would like to suggest that more work is needed for the research on Fibromyalgia(FM) for the year 2014 onward. I do not know how many people in the world are persons with FM and there is a need ( clinical indication) that they have the right to know that their medical condition(FM) is real.

  27. Ms. Deb Says:

    Thank you Ladies
    I was diagnosed in 2004
    I dont bother complaining anymore except to
    My Creator
    & of course my GP, so, May I Ladies? I HURT! & I’M TIRED
    I hurt 75/25 (overnite) pieces of me
    actually stinging, tightening & locking! Thank Goodness it takes
    Daily turns working me over I can’t
    remember a whole day of not
    having some type of episode, I
    laugh about it while reaching for
    Happy Holdays!

    I keep thinking & thanking God that
    I CAN FEEL!!
    My back, hips a 5lb bag of Sugar up a flight of Steps, Household Chores- I suffer Swelling & Pain for a week, Fatigued!
    I feel like I’m being punished for trying to enjoy Grocery Shopping& Chores!

  28. Kellie Says:

    This is a well done article. I’ve had fibro, hypothyroidism. Metabolic Xsyndrome, IBS, depression, and insomnia for more than 20 years. It’s been quite a fight. I’ve tried the prescriptions and specialists. The anti-depeseeant and anti-anxiety has helped mask some pain and stiffness. This I know because I’ve gone off of it and am in much more pain. Exercise has helped me greatly. However , there’s days that it takes everything I’ve got to finish a class. It makes me feel so old and I want to quit trying. Not exercising makes the pain even worse. I’ve tried the diets and haven’t noticed less symptoms. Even with myself below weight I had all the symptoms. I don’t tell many people I have fibro because I figure it won’t matter. I use the energy to make good choices for taking care of me. I do believe massage therapy has helped me as long as I go weekly. It’s expensive and hard to do consistently. I am a poor sleeper and have been since the teen years. Now I have sleep apnea. So if sleep deprivation makes symptoms worse I see why I’m such a stiff, sore, tired person. I have two grown children and I do fight and try to improve my quality of life for their sake. I believe my Mom had fibro and I don’t want my kids to get it. I wonder if child birth or hormones plays a part in the condition. I’ve rambled enough. Thanks again for the great article and support. I’m at a place now where grinning and bearing it isn’t working.

  29. Amanda Says:

    I worked for a rheumatologist for almost 11 years. Nothing ever led me to believe we had anything but a great working relationship. After that long our (Drs and nurses) our families had grown up knowing each other. It was like the Brady Bunch, until I started experiencing “flares” of issues I had been secretly battling. In a year I followed his advice to a T seeing this specialist and that. I learned that I was experiencing noticeable muscle weakness, more frequent migraines, insomnia, loss of memory, etc. after ruling out MS or anything else the neurologist could find I was referred to a rheumatologist. Funny it was like being referred home, though since we had such a long relationship I opted to see a rheumatologist friend of his. She confirmed diagnoses of FMS which I also knew as soft tissue rheumatism. My boss knew the dx before I made it back to the office. Something he began months ago to refer to as “FibroCrap”, so my dx though an answer was a sad one. One that I dreaded. I went through a time of denial and opted to fix what I could which was bil CTS release at the time. I was “let go” from my job between the two surgeries. Many lies were given as to why I was being let go I just can’t stop thinking about the fact that I was let go right after my dx of “fibrocrap”. After almost 11 years my office and even more so my patients were my extended family. I miss them SOOOOO much! At least with my job I had a purpose, so now depression and insomnia are taking over while my husband is in Kuwat and I have a Jr and Sr in High School and a household to take care of with one less income. Btw I am open to any advice, I need all I can get.

  30. Layla Says:

    I was diagnosed with fm 5 yrs ago. Yes I understand all these post. I have all these symptoms. Before I was diagnosed with fm and chronic fatigue I started missing a lot of work from the pain and staying absolutely exhausted. My dr. took me off work because I couldn’t do it anymore. I was like the other lady I hobbled everyday. And if it wasn’t for those rumble strips on the side of the 4 lane when I drove to and from work everyday I probably wouldn’t be alive today. It got where I would fall asleep at the wheel to and from work I was so exhausted from not getting enough rest and the pain. And therefore the fibro fog started kicking in too which started to affect my job. It got to where when I got off work I sat in my car and cry every afternoon. I worked in a factory and i worked there for several years and knew every job in my department. And I was one of those that was put on a different job every time I turned around because I was flexible like that.
    I loved my job and the friends I had. And the bosses could depend on me. It all ended in a quickness. And everything about fm never ends for me. I hurt everyday, but yet I also have severe days to go along with it. It is a terrible thing and I would not wish it on my worst enemy. The body aches, the headaches, fibro fog, the skin sensitivity, the tiredness, and etc. you all know about it. I really can’t find anything that really helps. And of course I have other health problems to go with it and that don’t help either. Like sleep apnea, diabetes, high blood pressure, a dead thyroid, high cholesterol, and consistent stomach problems which goes with fm. I’m sorry for putting all that out there. But the anxiety and depression gets really bad for me and sometimes I feel like I need to vent. lol But thank you for listening and it is great to know that there are people out there that has the same issues I have.

  31. Lars Clausen Says:

    Hello Marijke, Thank you for this article. I am the author of the recently published FIBROMAYLGIA RELIEF, and I am writing you specifically because you are a health writer. My book is based on the recent scientific discovery of MEMORY RECONSOLIDATION (2000, Nader and Schafe). It’s an enormouse discovery that makes a difference for anxiety, the fight/flight/freeze stress response, and body function in the present moment. Until Memory Reconsolidation the prevailing belief was that memories and their emotional content, once consolidated, lasted a lifetime. Memory Reconsolidation showed that the emotional content could be changed later in life. This has huge implications for fibromyalgia, as many people with fibromyalgia have past experiences that continue to cause stress, even PTSD in some cases. I work wtih clients, using a simple process that incorprates Memory Reconsolidation and when the fight/flight/freeze stress response is turned off, symptoms typically get much better. I have more information at If you would like a copy of my book to review – please contact me through my website.

  32. Alex Says:

    Thanks so much for your article. Fibromyalgia is where the patient experiences pain in different parts of the body. Really very painful.
    One of my friend suffered from Fibromyalgia. One of the most important aspects of a Fibromyalgia Cure is self-care. There are many things you can do by yourself to help improve how you feel. You will be glad to know that Gupta Programme offers Fibromyalgia Cure, which can help you get rid of this disease completely. To know more about this programme visit: May be it will helpful for you.

  33. Ruth Lehn Becker Says:

    I can relate to everything written in your article. It took doctors 7 years to diagnose me. I’ve had it for 20 years now. I’ve figured out somethings that help my pain and daily function. First, stop eating so many packaged foods and sugar. I also switched to soymilk and no longer suffer from IBS. I’ve always been a person who walked or rode my bike. Get moving even through the pain. You’ll feel energized and sleep better. I started running years ago and pushed through the pain. I have struggles sometimess and I try to be positive. The cold weather can take a toll on your body especially when its below zero everyday for a month straight . To combat my pain I started using a herbal product one year ago and pain is reduced 80%.

  34. Nanette Says:

    Thank you so much for article. I feel so useless because of my fibro. I was diagnose last year November. It is difficult to live with a mask. I have to pretend i am fine, and i am not. The pain is so bad. I wish my husband could understand what i am going through. I am sure that only this will make it easier to wake up in the morning!!! God Bless all of u that is going through the same .

  35. SueG Says:

    I was “officially” diagnosed with FM in 2008, but have suffered for so long I can’t remember when it started. I’ve had doctors that were polite and kind, but not much help, so it is disappointing to me when I read dated information from 14 yrs ago that suggest a form of counseling and someone saying they can cure FM. One being obsolete and the other, ridiculous. In my case I seem to be getting worse with each winter, and I worry that I may have to use a wheelchair before the next winter season. I’ve been on a certain pain medication for years, because it worked for me. However, realizing that everyone has a different chemistry make-up that is unique to only to them, one of the best supportive things I would say to an FM sufferer about medication would be-it may take one or two tries to find one that works, but then again, it could take several tries. We are not made from a “cookie cutter” meaning we are not all the same, so then it is up to you to choose, preferably an informed choice. I would like to end by saying, even the smallest of hurdles jumped,like just sitting up, is an accomplishment.

  36. Susan Says:

    I have read the comments. I was diagnosed when I was in my late 30s. I have had Fibromyalia since the age of 7. I stopped complaining about my symptoms when I was 9. My brain turned off most of the pain and went to school, studied the violin with all the schedule that goes with it. The fatigue was extreme. I still suffer and has not improved, even with what I have tried through the years. I do not sleep well, always tired and developed relaxed ligaments by the age of 12 (all over my body joints (are in and out) dislocated, which was the end of all my physical activity, which includes my heart valve), my pelvis is dislocated and I have 3 lower back disks out of alignment. The bottom of my feet hurt when I walk on them. I am in still in tons of pain but fortunately, my brain still blocks a lot of the pain, but is taking much more energy to do this. Almost forgot, my taste buds and hearing are so sensitive, it is difficult to go anywhere and eat out (food too spicy). I only take acetaminophen for headaches and body pain. I don’t know about anyone else but I had noticed that people who are taking a lot of medications are basically bed ridden and those who do not, are fairly active and hold down a full time job (I am the latter). Since high school I always thought it is a chemical/hormonal imbalance that occurs after an extreme shock to your body. I was in a car accident at the age of 7. Exercise and healthy food can help the symptoms only a bit. Until the underlying cause is found, nothing will get rid of this condition. Fibromyalgia is not a “disease” but a label put on our many varied symptoms we live with every day. Once the underlying cause (disease) is identified, we should have an all-world party and celebrate physically and pain free! :)

  37. Lauren Says:

    I was just officially diagnosed two days ago. My very kind rheumatologist spent a very long time talking with me..present pain past pain etc…he told me I have probably had this quite some time just never connected all the symptoms. I feel so validated having a name for it. I am just not sure what to do next. I have heard of support groups. I am hesitant to tell friends afraid of the “that doesn’t exist” reaction. My family is very supportive..relieved they know what it is and not the unknown.

  38. Ken McKim Says:

    Hello, my name is Ken McKim.

    My wife has Crohn’s disease, and there’s some pending legal action in Washington DC that is going to affect her, and everyone who suffers from a so-called “invisible illness.”

    I’ve created a petition that asks the White House to direct the DEA to not reclassify medicines containing hydrocodone to Schedule II from Schedule III, thus making them harder to access for millions of chronically ill people.

    I have also made a companion-video to the petition that explains my reasons for doing this entitled “The Slow Death of Compassion for the Chronically Ill.” If you wouldn’t mind reviewing it and sharing it with your friends if you feel it’s appropriate to do so, it would be appreciated. We have less than 30 days now to get the minimum 100,000 signatures on the petition, and getting the word out is the biggest challenge.

    Petition Link:

    Here’s the link to the video of my talk:

    Thank you for letting me share here with you, and take care.

  39. SueG Says:

    To Lauren-Sometimes the most endearing and well meaning friends can say the wrong thing when they’re trying to help. I’ve tried to convince people for a long time that I can’t do what I used to because I have fibromyalgia. The best thing is, if you know of anyone that has it, they will understand your pain and symptoms and can be of the greatest help. Chat rooms like this are pretty good because we all know what kind of fatigue/pain, etc., you’re going through. I have a family member who suffers from it and several friends that have it, so I try not to say to much to the friends who may not understand. As I have said in the post before this-not everyone is the same. Pain thresholds are different in each person, where one person may be able to push themselves, there may be another one that has a harder time of it. I stop giving reasons to people for not pushing myself. If I feel good, I’ll do it. If it’s been several months since I did no more than walk to the mailbox, then it is what it is. But that’s me and I’m satisfied. I am fortunate though, to have a husband who takes care of the house and good friends. And Lauren, try not to let the ones who tell you it doesn’t exist, or my favorite, “you’re just out of shape” get to you too much. True friends are just trying to help and for the insensitive person who doesn’t have a clue, move on to other topics. Anyway, best to you and I hope you gain even more support as the days go by.

  40. Cynthia Says:

    Two years ago, at age 60, I was finally diagnosed with fibromyalgia. I have suffered from this condition since I was 17 years of age, but only recently received a diagnosis after the pain and fatigue reached such high levels that I could rarely get out of bed or accomplish anything for several months. I immediately started reading on the subject and through more attention to diet than usual and slowly increasing my level of exercise, I have had some improvement. My frustration level has increased as well. I get so angry at my inability to function some days, or weeks, at a time. I used to be able to rest for days or weeks, then carry on. No longer. In any case, thank you for your excellent article. I will be sending this article to some of my extended family, who remain skeptical about this condition.

  41. Jenna Says:

    My issue is finding a DOCTOR within my insurance group that will actually acknowledge that fibromyalgia is real. I’ve been told by others in the medical world, as well as a doctor who was not my official doctor (therefore it’s not in official medical record) that they believe I have it. As all my symptoms fall within the realm of it. My doctor has ran tests for every other possible reason for my conditions but all are negative. Yet she, and 3 other doctors within my plan refuse to test me for fibromyalgia and continue to contend that it isn’t a real disease and they just blame my pain and everything else on my being overweight. I was slender, even SKINNY until my pain level reached the point where now I’m bedridden for weeks on end. I can’t keep living this way, but finding a supportive doctor is impossible for me. I really hate my life at this point, I’m not suicidal…but sometimes I just wish I would hurry up and die so I could just stop hurting.

  42. Hynnil Says:

    nice post

  43. Susan White Says:

    To the Susan who posted on April 28th, I hope you see this. I was diagnosed with fibromyalgia in 2010. I was told be a Dr in 2013 that for me the fibro was caused by Ehlers Danlos Syndrome. I have the hypermobile type of EDS and was diagnosed with it in 2013. Joint dislocations are a hallmark symptom of Hypermobile EDS. There are several types of EDS which is a genetic disorder that causes the body to make bad collagen. Because collagen is in so much of our bodies it can cause havoc in many of our body systems. There are many symptoms including, but not limited to, early Osteoarthritis, soft smooth skin, IBS, joint dislocations and subluxations (partial dislocation), high palate, crowded teeth, blue sclera (the whites of the eyes have a blue tint), organ prolapse, mitral valve prolapse, aortic dilation, easy bruising, “cigarette paper” scars and much more. Many doctors know little about EDS. Like fibro, some don’t even believe in EDS, mainly because they aren’t informed enough about it. Little is taught about it in medical school. When I was born, I was what some call “a floppy baby”. My mom was told I was “just double jointed”. I had no idea that some of the things I could do, like turning my feet very far, were causing damage. I didn’t even know I was experiencing dislocations until a doctor told me. Like I said, a doctor told me that the EDS caused fibro for me. A gentle hug for all who are dealing with fibro and other issues.

  44. Candace Says:

    I truly enjoyed this article. I was diagnosed about 5 years ago. I do everything my doctor asks of me and yet my pain seems to get worse. I am to the point have a full time job that keeps me very active. However I am to the point now that I can hardly move by the end of my shift. Is there any new homeopathy things I can try?

  45. Candace Says:

    I have even lost about 100 pounds thinking that would help my situation. I just feel so helpless and feel like no one understands my pain.

  46. Sue Says:

    Hi There,

    After reading all of your posts, I can relate totally as i was involved in a car accident 3 years ago and on top of Cervical and Lumbar injuries, I too developed muscle pain, debilitating fatigue and muscle pain, hip pain, inflammation, parathesia in my whole body and a lot of other symptoms. After being diagnosed with various things, A spinal surgeon diagnosed me with diffuse pain syndrome, and the really great thing, and this is what I want to share with you all, is that my GP who has been treating my injuries and is without doubt the best pain management doctor there is put me on PRISTIQ. 100mg for anxiety and pain. This has relieved my severe morning stiffness, severe muscle, hip and joint pain, allowed me to think clearer and to function better than I have in 3 years. I hope this helps even one person as I was exactly where so many of you are and in the past month thanks to that one caring doctor have felt so much better. thoughts to all of you.

  47. Joy Says:

    Thank you for your article. As you said, it is a comfort knowing that what you are going through isn’t “all in your head”. I was diagnosed eight years ago, had six years of only minimal problems, then after some tragic events in my immediate family this past year, I again suffer with severe generalized pain and exhaustion. As you said, the pain isn’t in the same place all the time, down one side one day, the other the next day. Some days I can hardly walk and have been unable to do any garden work. I hate trying to cope with an illness that most people don’t understand and that has no lab or radiology tests to prove. As you said, you tend to keep it inside which only serves to increase the depression. I do thank you for sharing with us because it assures me I am not alone.

  48. Jayney Says:

    I was diagnosed with FM in October last year after having Parvovirus in July and then Glandular Fever in September…. I am still coming to terms with it and due to the nature of my work I have had to resign due to ill health, I am a very positive person but I can feel myself slowly withdrawing into myself because at times its the easiest option. The article was so helpful and I realise all what I feel isn’t abnormal and there are more people out there like me who struggle everyday. I mourn who I once was, someone who did everything at 100 mph, I was highly organised, never forgot a thing and never gave into illness – ever!
    I struggle everyday physically and mentally but I know I will learn and adapt over time, this article helps me push on to what I know I will achieve eventually……

  49. Tammy Says:

    I’m the mother of 3 kids ages 6,4, and 2. I remember having symptoms when I was 4. At age 7 I suffered from daily migraines until I was about 14. I was in and out of school because of this mystery illness. I couldn’t keep up. It took me 10 years to finish college. Motherhood has been rough. My 6 year-old tells me daily that she’s sick of having a sick mom because I have to pace myself. I just laugh and say I’m sick of being sick. It’ll be good for her in the long run as it teaches her patience. I’m actually doing really well, all things considered. I figured out that corn (and everything that’s derived from it), gluten, dairy, sugar and all sweeteners (except honey)make me hurt. I cut those out of my diet a little over a year ago and I am making steady but slow progress. It’s hard, but worth it. The fatigue and fog are still my constant companions but they’re not as overwhelming as they were a year ago. My diet helps me manage the depression and anxiety that come with fm. If I eat a trigger food, my neurological symptoms (jumpy eyes, restless legs, twitchy muscles, phobias, dizziness, etc.) kick in for 2-3 days. I’ve learned to prioritize and take care of myself. If I don’t do it, no one will. I really hope this helps someone.

  50. Mattie Says:

    I am 16 and was just diagnosed about a month ago but have have some symptoms for 2.5 years and servers symptoms for a year. Fibromyalgia has changed my life in so many ways! I have been on swim team since I was 5 and played soccer since I was 4, after this last year of battling sports, school, and a growing number of symptoms I am now faced with the decision whether I can still do the sports I love. How much pain I am in is the ONLY thing that I can ever think about. I wouldn’t wish this storm on my worst enemy.

  51. chandni Says:

    Thank you for writing this article. In the entire article I read what I was feeling from past few years.

    I met with an accident when I was 18. That accident has changed my life. After a year I recovered from all the injuries but what left was pain. I thought this will also go in few months but with the time, the pain was increasing, increasing and increasing. I went to so many doctors, finally they diagnosed it as Rheumatoid arthritis, I was under homeopathic medication for the same. But later when I went to a very well known Rheumatologist, he diagnosed it as Fibromyelgia.

    But nobody knows or believes Fibromyelgia. and So nobody believes you and your pain.
    Whenever I told my family members about this they just ignored it by saying I am too weak or the pain is in my head.
    Its been 8 years now, this pain is still there but now I don’t tell anybody about this as I know they won’t believe me.
    Its very difficult to live with such a disease where you can’t tell that you are sick. You have to live alone with this fibro creature.

  52. Lucie-Marie Says:

    All these post are really helpful. I was diagnosed aprox 9 months ago and in studding and reading about this illness I’ve figured I’ve had this since prob the Age of 2-3 over 45 years now living with this. When I found out about FM I feltike my home life change realizing there was a name for all my symptoms was like receiving. Gift from god however god cannot make my boss believe and my work environment is very stressful and requires me to be focus to detail which I’m now finding very hard to go and I’m getting g little to no support from my employer to the point I’m feeling like they are just waiting for me to really mAke a big mistake to get rid of me as I hAve missed a lot of work due to pain and or bring extremely tired. We need more to be publish on this illness not only to des but also employers and their human resource department

  53. Pam Ross Says:

    Diagnosed with fibro in 2007. Been working full time since in a factory. Hours were extended from 8 hrs a day 5 days a week to 4 – 10 hr days plus overtime.since then my condition has gotten worse and i barely make 3 days a week. I get made fun of and ridiculed. Told i deserve to be fired, and im a hypocondriact. Even close friends and some family dont understand. Also it is a 3rd shift position and cant seem to get on days without losing pay and getting a harder job and people dont understand that. Im at my wits end. Cant hardle deal anymore. Doctors give different meds and dr notes and fmla papers but just keep telling me to go to work when i can but i lose lots of money and no regularity of any kind. Dont know how to change jobs without help. Any suggestions??

  54. Kathy R. Says:

    I have had Fibro for as long as I can remember, but was only diagnosed in 2010. I have IBS, muscle pain, chronic fatigue, cant sleep and at times have skin so sore that I cant have anything touching me. I found a wonderful nurse practitioner that had been working with me and adjusting medication as needed. The medicines that she prescribed has been fine tuned and has kept me from being hunched over like an old lady when I walk, and allowed me to get more than three hours sleep and lead a productive life. It took many trail and errors. Imagine my surprise when I get a call from the doctors office saying that she had left the practice and they wanted to know if I would like to see another doctor. My medicine is only subscribed in 3 month increments, so as I was running low, I decided to see the doctor that my parents see. After he let me brew for an hour in the exam room, he came in and was acting very hostile, which I couldn’t understand. It was obvious that he thought I was some kind of no good drug addict and that he wanted nothing to do with me. He would not even make eye contact with me as he was picking apart the reasoning for the medications that had actually made my life somewhat bearable. He did not get the connection of the anti depressants being used as treatment and told me I should go to a psychiatrist for depression and that there was a study out there that proved older (I’m 51) people need less sleep and I shouldn’t be taking anti depressants to help me sleep. I run a business and work 10-14 hours 5 days a week. I love my work and want to continue for as long as I can. When I called the doctors office to explain the problem and request a different doctor, they didn’t even call back. I called them again and the say the doctor that I requested “declined” to treat me. Asked for another doctor then, and once again, no phone call back. In the meantime I have 3 days worth of medicine left, no doctor and no prospects. I suspect that I have been taking this medication long enough to have some serious withdrawals.

  55. ANN MARIE Says:

    I was diagnosed with Fibromyalgia 16 years ago. I have been in so much pain ever since and more pain comes every year. I recently had a tumor removed from back in June and since then have been in extreme pain all over. I have been going to physiatrist and have had 24 physical therapy sessions. I tried Gabapentin but had so many side effects i weaned myself off. I haven’t been able to work since my surgery. The last five years I have had to cut back on work because I couldn’t handle long days any more. Today I went to a Neurologist for the first time because I have had a headache for 6 weeks and it wont go away. The neurologist came in the room and was very rude and said there is no reason I shouldn’t be able to work. This is just from reading the forms I have to fill out. She checked my reflexes tried to get my BP but she couldnt get it to work. She told me she could not would not be able to help. SHe would not could not refer me to any one and Fibromyalgia is not a real condition and all I wanted is pain meds! I didn’t ask for pain meds I asked for scan. Holy shit can’t believe how mean she was. I didn’t realize a Doctor can refuse treatment. She made me feel like shit, I should have “B” slapped her.

  56. Jessica Says:

    My daughter was recently got cut from her varsity soccer team for having fibromyalgia. I notified the athletic director and he completely turned it around on us and made it seem like we were sensitive parents with a kid with no athletic skills. I am at a loss on how my daughter has been disregarded and what this is teaching her. Be guarded and don’t let people know about your condition.

  57. Teri Says:

    Is fibromyalgia often overshadowed by anxiety and depression, so that nobody truly takes the FM seriously? This seems to be my case. The typical nightmare of trying to get a diagnosis for all of the various pain & exhaustion symptoms spiraled my depression to an all time low that I attempted suicide. I felt like there was no way out, that I has crazy and felt like a pathetic hypochondriac. Up until the onset of the FM symptoms that slowly crept into my life, I was a workaholic, owning my own dance company. I slowly cut back on performances each year and this year, I stopped altogether. Although I have finally been diagnosed with FM, since the suicide attempt, which only my immediate family members know about, I still don’t feel that my family truly acknowledges the FM. Not that I want sympathy or extra attention, but some form of respectful compassion would be nice. Everything about my illness is hush-hush. Who wants to broadcast major depressive and anxiety disorder in the first place. And now even mentioning FM, which I hesitate to do, I question if people will even believe me at all- (or that FM is a legit medical condition) because…..”I don’t look sick…” “…don’t sound sick on the phone”, etc. And the few people that I confide in (my family members) seem to be tired of hearing about it. It’s a catch 22. If I don’t express what I’m feeling or going through that day, I just look like I’m being lazy. And when I do, I just get a nod or an attempt at an expression of sympathy. It’s true that many of us think that we have a character flaw for not being able to tough it out and just get our acts together…and on top of that, being ASHAMED to have a condition that is considered to be frivolous.

  58. Taylor r Says:

    I was diagnosed with fm art the age of 11. I always had pain my entire life and my mom always said it was growing. I am now 15 and I am still in pain and tired all the time. I did physical therapy and I’d didn’t work and I take some meds for migranes but it still isn’t working. My mom says that my pain is made up in my head. She has fm too and she was told that as well when she was younger and it really hurts because I know the pain is real and no one in my family believes me they think it’s for attention.

  59. Sharon Says:

    I just discovered this blog and would like to share what I accidentally experienced as a “quick cure” for my FMS. I’ve had it off and on 3 times since 1988. I learned after the first painful 8 year bout with it…that a healthy diet and warm water exercise finally put me in remission. I was so stiff, I could only float on my back when I first got into the pool.

    This time around, I accidentally discovered something that took care of 80$ of my pain within weeks of it’s onset. I’ve taken Sinequan ….Doxepin (generic)….all these years, even while I was in remission. My new doctor said he didn’t know of anyone still on it. I understood I was taking it as a sleep aid. I inadvertently gave my new doctor misinformation about what strength my original prescription for Sinequan was, and he doubled the dose. My FMS returned just weeks earlier. I was mighty groggy for those two days, because instead of 20 mg, I was taking 200….way too much! I DON’T RECOMMEND THAT. But…(!)…. my FMS symptoms were reduced by 80% on the 3rd day. I’m also lucky I woke up! I intend to tell my doctor very soon.

    It was accidental, I was fortunate, and I am feeling much better. I am going to stay on 50 mg of Sinequan / Doxepin to maintain. Hope this helps someone. Sharon

  60. Connie J Says:

    This 1st day of January 2015, happens to be one of my usual sleepless patterns I go through. However, I feel thankful for this one. It’s 6:30 and as I have decided since it’s been many hours since I’ve actually been asleep, hopefully I can go to sleep now. As a fluke, I decided to see what was out there, currently, about my “imaginary” health issues. I actually wanted to see if there were any listing for doctors in my area who don’t believe fibromyalgia is real, so I won’t make the mistake of going to one again. I feel blessed to have found your site. Without being too long-winded, I’ve been feeling more depressed than normal, as I was just denied for SS disability retirement. Unfortunately, it was mostly my fault. I somehow failed to submit medical records I have and follow-up with my doctors. Actually, I had two precious doctors who were on Team-Me who tried to get me thinking about applying for disability retirement several years ago. I wasn’t going to think seriously about it because I didn’t even plan on regular retirement. I was going to work until I died. Unfortunately, both of them are no longer affiliated with the medical facilities I go to. My pain specialist had been trying for a while to find a neuropsychologist who would accept my health insurance. Without question, I assumed the psychologist my PCP sent me to for some testing, was neuro. During that time, my exhaustion was at it’s worse and I had started having hallucinations and more frequent forgetfulness, my PCP sent me to a sleep specialist who eventually found I also have a wonderful brain disease called idiopathic daytime hypersomnulence. In a nutshell, the only minute relief is napping throughout the day. The tests show my brain is in continuous wake-up mode when it should be sleeping. When I do sleep, it’s only a couple of hours at a time, unless it’s been awhile since I’ve even had any sleep, even a nap. Then I’ll sleep all day long and all night long, and the next day. And of course with the Fibro, I’ve accepted (not really) I’ll never feel like I’ve even been asleep. Although I know I’ll never feel like I’ve had a restful sleep again, it does somehow help with the hallucintions I was having and I’m nowhere near the level I had been at. So I guess I’m just in a mourning stage and doing nothing today…but maybe tomorrow. As Kathy R states above, I’ve had FMS for as long as I can remember. I’m one of the ones who thought the doctor who diagnosed me was a quack. She let me have my disbelief period, but was there for me when I came around. I was diagnosed when I was about 30 years old and now I’m going on 54. I was with her for 15 years, I got married and moved to another city way farther than what I was. I was lucky and found a couple of great doctor, but now they’re gone. I just hope my luck hasn’t run out. But like I said in the beginning, I found your site and started reading yours and everyone else’s experiences. It’s making me cry, but it’s also giving me a renewed sense of hope and strength that in between naps, I’ll be able to make that call and find my new Pain Management Specialist, then a lawyer, and let someone help me instead of trying to conquer these obsticles alone. I wish all of you good luck with your own unique experiences. Kathy R and any of you who have significant sleep problems, please, please convince your primary care physician (PCP) to refer you to a sleep specialist for an indepth sleep study, MSRT. There is not enough public information and awareness about the negative and especially dangerous effects sleep deprivation can result in. Especially with Fibromyalgia patients who naturally write it off as just the Fibro. Many of you know, you can easily have several health issues which can mimic something more serious. Of course that’s another one of our issues…for another day! Oh and if you don’t have a support group, find one. Don’t do it alone. HAPPY NEW YEAR EVERYONE!!! God Bless

  61. Tammany Says:

    Reading through all of your posts with profound empathy, I almost feel guilty that I don’t suffer my FM as intensely as so many others do.
    And I want to hug and encourage every one of you.
    Usually I can laugh about the pain. When I can’t, I pray about the pain. Is there something important for me to learn through it? Have I issues in my subconscious past that I’ve failed to address? It’s important to me to make every attempt not to dwell on FM; not to let it run my life. OK, there’s no way around the fact that it’s going to jerk around my halter rope some, but I want to WIN.
    After reading many of the wisdom shared here I think: 1) I’ll take Jessica’s advice and keep as mum as possible 2)I’ll try very hard not to let other people’s opinions about FM wreck my world 3)I’ll forgive them for not understanding, since to truly understand they would have to walk in my shoes and I don’t wish that on them 4)I’ll do at least one thing I love every day 5)I’ll laugh
    6)I will be grateful for and will cry with each of you who feel your lives crumbling 7)I’ll hope for each of you (and for myself)that 1-6 give us purpose to keep fighting!

  62. Hubert R Says:

    Very good article. I’m a guy with Fibro have had it since childhood and have suffered so much abuse and rejection that I would like to invent my own brand new F-word And tell everybody on this planet to fibromyalgia off!

    It is a real disease, I was diagnosed by a GP several times but he could do nothing for me. I was also diagnosed by a Neurologist 12 years ago and shortly there after lost my wife my kids my acarage (she got it.) my self respect, ma sanity, and a whole lot more. Yeah its real too real, and anybody would be insane to pretend to suffer like we do… for years, and if it is a game and pretend – why does it still go on whether anyone is watching or not!? When I wake up alone in my bed every morning and sometimes my bed is over a foot from the wall from my thrashing with pain all night, what kind of moron would fake that for 12 years with No audiance?

  63. Donnajean Says:

    Wow…reading this felt like I was reading about myself. I too suffer from Fibromyalgia and experience both negative & positive from others. Some understand most do not. It is refreshing to see that I am not alone. Thank You :)

  64. Yvonne Says:

    Just had an appointment at a rheumatology clinic and was told they NEVER give a diagnosis of fibromyalgia!!!!!!!!
    I was told that there is such a negative press about fibromyalgia that they never use the term.
    So, apparently I have chronic widespread arthralgia without inflammation. Sounds like fibromyalgia to me.

  65. Frances Mooney Says:

    I don’t know where to turn. I am working 48 to 58 hours a week at a factory. I push myself so hard I cry most of the days. I am a temporary employee and have no short or long term insurance. I can’t live without income. My brain fog is so bad I can’t imagine learning something new. I make bad mistakes on a job I have been doing for 6 months. I know how to do it but get so mixed up it feels like I am lost. I don’t know what to do I can’t go on this way.

  66. Isis Ponce Portillo Says:

    Lazy, Airhead, need attention, boring are words that seem to hurt more than ever. I believe I have lived with my pain since my younger years as well. The most frustrating part of fybromyalgia are all tne grey areas it lives in. No one can see it, symptoms are many, no end in sight. It is the hardest battle of the persons life, just to learn more about it, and how to try to deal with it. I have spent many days in the dark. I not only wish there was more supoort because it would help not only with venting out and being understood as well as being able to identify all of the symptoms attached to this sickness. I pray for everyone coping with this sickness so that we stop getting lost in it.

  67. Sassy Lou Says:

    I just got out of a dermatologist office…after 2nd visit..explaining that the steroid cream she put me on two weeks ago may have helped my fibro fatigue symptoms..Then…asked me if I saw a psychiatrist…..even though I just explained my hashimotos/hypothyroid/lichen scerosus issues have been dragging me down for years.

    I looked at him and said “Why do I need to go to a psychiatrist?” He said “To make sure you are not manic depressive..blah blah…”

    I assured him my pain and suffering is real and that I was just trying to see if there was a correlation between being on steroid creams and a sudden happier jaunt in my walking and the fact my apartment hasnt been cleaner in years.

    I literally had 4 days (in a row) of feeling ok..almost normal. That NEVER happens!!!! I might have ONE day every 2 or 3 weeks that I might feel better than usual and then I have to rush around to get all my procrastinating chores and errands done THAT DAY because tomorrow will mostl likely “suck balls.”

  68. Sonia Says:

    Thank you for writing this post. Some of my family supports me and tries to understand the pain , the others think I am being lazy.

    I was just diagnosed last November 2014. So Im learning to deal with this horrible disease.

    So I dont talk about it because I dont like being critisized.

  69. Nicola Says:

    I have been struggling with fibro for two years now. I was made redundant from work because of my illness. I have IBS also and up to now am taking 42 tablets a day. I have now been taken off esa and have been told i am fit for work. I do not move out of the house as the pain and spasms i get are so bad i am severely depressed. I have lost all my friends as i find it too difficult to even get dressed never mind have a night out. Does anyone know how i can fight ESA and get what i deserve. I am only 48 but have worked since being 16.

  70. Trivedi Effect Says:

    Recently I have read that anxiety can cause fatigue or tiredness, it was really an informative article and found this article useful more informative that I every read. Thanks for sharing.

  71. Kim Says:

    And the minds are clouded by presumptions as well
    The eyes are useless , when the mind is blind.
    While most of us have the good manners to not run our mouths . These presumpious people can not seem to keep their mouths shut ….
    So try not to let them get you down . Fibromyalgia is enough by itself .

  72. sheri Says:

    I really need help people ! I have never really known pain wntill the last 4 yrs. I always had a very high pain tollerance. But lil by lil I had what I thought was the flu several times a yr. One yr in the summer it was so bad I couldnt go to the doctor because no insurance so I called the nurse hot-line and she ask alot of questions and we came to the conclusion it must be food poisining. Three weeks stright in bed thinking and wishing I would die. well I thought I had a week amun system. Then last winter took a bad fall on the ice and thought the pain was just a soft tissue injurie. After many tests I ask my Doc. to refure me to rodchester mayo turns out I have Fibro. now yes I was happy and felt that this explained alot . It has been 1 yr and I am now in bed 5 out of 7 days. They say I needed anti depressants and I have been on all but 3 In 30 yrs I am now 50. so I tell the shrink that a pain clinic sent me to ,she told me she didnt beleave me I told her to look at my records which one would think she had done.I ask about savella she said she couldnt help me I would not return to see her she said the pain clinic had to give it to me. I tried to explain that the pain clinic had told me the shrink had to. so I ask well who will take care of my anxiety meds. she told me my PCdoc. So I get home call my PC doc and she states that It looks like I am doc. shopping and she would wean me off of that med. The only med that helps my anxiety and my PC had been perscribing it for yrs . Was told by more that one doctor that I have been on it so long that taking me off could cause heart atteck or strok so at my age stay on it. ok now I have returned to my old family practitioner and he does listen but he dont know what to do to help the cronic fitiuge and pain . Any sugestions would be greatly appricated. I just hate people thinking I am a drug seeker and beleave my they say it. I have taken pain pills once in my life after a surgery. lord if there is somthing to help I really need to know. thank you.

  73. Tiffany B Says:

    My heart goes out to all of you. I am 29 and cannot remember a time that I have ever felt good or agile. I also don’t remember a time in my life when I was not seeing doctors for IBS, headaches/migraines, chronic muscle pain and depression. This past year I put my nose to the grind and have been desperately searching for a reason, some tiny shred of a diagnosis so I know why I am like this, that I am not making this up and so I can feel normal (what is that like?) I keep telling myself that I have to find an answer before I have kids…I can’t possibly live like this? Then I came across this post, all of your strength has inspired me. I have taken screen shots of your paragraphs and have been scribbling frantic notes so I can run into my doctor’s office and tell her “This is what I have!! Please finally help me!” I have had numerous MRI’s, CT Scans, gone to physical therapy, chiropractors, psychologists, pain management doctors, had balloon sinuplasty, yet through your courageous posts you have finally diagnosed me. I thank all of you for that and I sincerely pray for all of you and myself in this journey. I am a firm believer in everything happens for a reason…perhaps your reason was to save my life and perhaps mine will be to save another’s after reading my words.

  74. Rose Green Says:

    The stories and comments that are here are very troubling to me. My heart goes out to you all in your struggles and confusion and sense of despair.I live in Canada,where healthcare is provided.I was diagnosed with Fibromyalgia Syndrome(FMS)(in my late thirties and am sixty two years old today)by a rheumatologist who told me that it is in his book of rheumatology and listed as a disease,and there is no doubt about it at least here .The testimonies of many of the commenters and their frustration and lack of validation only make the invisible disease that much harder to cope with.I read all I could on it and came to the conclusion that this AUTOIMMUNE disease was going to be a life long challenge as there really is no cure-YET.Research is taking place because sufferers are increasing and the pharmaceutical companies are coming out lately with specific meds for it.You have to decide what is best for you.My decision has been the natural route and I do not take opiates,narcotics or psychotropic drugs for the symptoms which are abundant and acute.I am gluten free,dairy free mostly,vegetarian,caffeine free and avoid processed foods and sugars.I exercise daily in some form some days are much more gentle than others depending on my wellness.I do use ibuprofen and gravol on the bad nights but try to not take anything during the day.Sleep is very important to just maintain any quality of life.I do push myself.I do move every day.I try to complete something every day.I have a massage pad, soak in warm baths,use essential oils and herbal supplements. It all evolved over time and trial and error.On bad days I use a wrist brace, and support bandages when moving around.Symptom management is crucial and I try VERY hard to remain positive,engaged in life and hopeful and forgive myself when I am unable to do things due to this insidious disability.It does change you,yes,you will never be the same, but you can find a new normal.I believe that I am not this syndrome or it’s chameleon symptoms,I am me,and I am not defined by this thing.It was hard to have to stop working and move to a cheaper place miles from our small circle of family and friends and life. You do what you have to get by in life.I have fun living frugally.Life is a gift IMO,and beautiful,and perception is everything.I try to not dwell on it,accept that this is my life now and carry on.Sending big heartfelt hugs and supportive healing thoughts to you all.

  75. But... Says:

    But what do you do when a rheumatologist tells you, after a brief five-minute e Mi action and no tests of any kind (no blood tests, no X-rays,nothing): “There’s nothing wrong with you”?

    Later, your family doctor tells you, ” It’s fibromyalgia,” and suggests SSRIs.

    Later still, you switch doctors and learn that “it” includes a host of things like bursitis, rotator cuff injury,etc. For some specialists and GPs, fibromyalgia is a dumping ground diagnosis that leaves patients suffering while treatable injuries go untreated. Why?

  76. Janet gallo Says:

    I was suffering with pain and 10 other symptoms. They kept telling me to go see therapists. Well I wouldn’t stop till I got an answer from a rhuematologist.I am in pain 7 days a week I am 57. Waitress for 30 years. I cry every day. Cause medicines don’t work. I have dealt with this for 3 years.I can no longer work and it’s driving me crazy. There is no hope except to do the best we can everyday. They don’t know where it comes from that’s why they have no answers. Just try to stay strong I know it’s hard. Cause there are days I don’t want to live. But we have to be strong.We have to push the doctors to research this more. I read so many books on self cures and it’s all bull. I will pray for all of us who are suffering. Cause this disease is real.

  77. Dr Shut up Says:

    Are you serious? Comparing muscle aches to cancer!
    Can you die from Fibromyalgia? No. Does it cause any symptoms that lead to any sort of damage to the body if left untreated? No. Even the definition for it is unexplainable pain. Let me tell you something.. My wrist aches if I’m on the computer for a long time.. my legs ache if I go a long walk.. If I sit on my ass for a week without exercise.. the veins in my arms start to hurt and every pressure point on my body starts to hurt. If I don’t sleep well.. you guessed it.. muscle aches. Do I need drugs for that prescribed by some Doctor who probably doesn’t believe there is anything wrong? No. Because I know there is nothing wrong.. Why don’t you try exercising, eating a healthy diet and getting outside once in a while instead of assuming every tiny little ache is a terminal illness.

  78. nathalie Says:

    Interesting article,my husband has had symptoms of fibromyalgia all his life but only became all acute in the last year the biggest let down from the medical profession was to be told by a ruhmatologist that although my husbasnd has all the symptoms of fibromyalgia they couldn’t put a name to it and therefore was sent away diagnosed with chronic pain, finally this week our local doctor diagnosed my husband with fibromyalgia like your article mentioned I felt like crying we now know why my husband is feeling the way he does and try to live with the condition by making adjustment.

  79. JL Says:

    Very good & so true: And the minds are clouded by presumptions as well
    The eyes are useless , when the mind is blind.
    Have had fibro for years and at least almost 10 since being on intermittment FMLA to protect my job. I suspect I’ve had for a lot longer than that when reflecting back on years of all over body aches, muscle soreness, etc. I am in pain everyday though am still managing somehow to work; other times I have major flare-ups where I can barely move and meds barely help. I know when a flare up is imminent and try to ward it off the best I can. Prescribed massage therapy has worked wonders along with heat pads, rest and avoiding stress which seems to bring on flare-ups. Don’t wish this on anyone since one never knows which day will be bad or good – a flare-up can happen in a matter of hours (example: I meeting fried for dinner and we were going to do something fun afterwards – towards the end of dinner I had to go home as I could barely move – just like that). Without my massage therapist (a top in his field) and my doctor I’d have no idea what would happen. Too bad others are so closed minded to realize that Fibromyalgia is very real and it affects each person differently on any given day. I sure wish I didn’t have this.

  80. julie Says:

    Janet I have tried all the meds and been called crazy so I go to the chiro and found peace I can sleep with out pain but still have brain fog, dizzy spells and no support. please do not give up try the mayo clinic for help. It can br triggered by accident infection, other causes. Keep getting opinions from others doctorsand find one that works for you and contact the fibro foundation of America might also help. Your not alone julie

  81. Jaye Says:

    I was diagnosed with fibromyalgia literally a week ago and I display so many of the symptoms. I’m currently in year 12 and it was a harsh blow. Like you, I too cried when I found out and so did my Mum. All we could do was cry because we had an answer. I was repeatedly told by doctors that I was just a normal teenager but finally we found one that knew something was wrong. I’m still trying to get my head around it and learn how to deal with everything but I’m just so relieved that it isn’t all in my head. I wish this was more commonly known because it really is debilitating. I miss out on so much school, by second period I’m nearly asleep and my neck and shoulders are screaming at me but despite this, I have hope because I know that it is manageable and I’m positive that I can live with this and still do all the things I want to.

  82. Michael Says:

    Let me start this by saying this, it can effect men too and it can run in the family. With that said let me start by saying we, all of us have something no one will or can understand it would be like us without cancer really knowing what it is like to have it but that’s just it the things that can kill you *cancer,aids,STD’s, Ebola ect get all the fame and money to back and support there is no Fibro awareness week, no run for a cure, no TV ad’s with new cures or findings. We are alone and more so then anything we are brushed off like Drug addicts, or mental people or dare I say looking for attention so we can get an excuse not to work ect. I get treated like all of these every time I get sent to another doctor how many opinions did it take for me a White male in my 30’s to finally get it diagnosed 9 doctors yep that’s right 9. I had every test done known to man kind sleep studies, MRI’s Xray’s CAT scans you name it I did it at least twice. Now that I got it called what I knew all along it was after 7 long years of pokes and needles and meds that did nothing but side effects to pain pills that actually worked but are to dangerous for long term use. Still even though My doctor knows whats wrong with me I am going on my 8th anti depressant that will do the following like the other 7 before it, It will not take away more then 10% of my pain it will only after 3 weeks make me become angry and start having thoughts of suicide so I quit taking them cause whats the point as if I needed more reasons to die or be sad. Doctors do not care they want to give you what ever anti depressant will turn you into a zombie so you could care less about the pain, These doctors think it is all in your head and if that was the case then guess what anti depressants would work at least after the first 2 or 3 they put you on, but 8? Wile I still feel the exact same way as I did on the last 7. Truth is we could be normal again if we had pain killers that were ok for long term use and anxiety meds also that were okay long term but we do not so doctors to collect a check from you tell you well lets try this and see… Okay I have tried it 7 times before it failed, I have a strong opinion when it comes to anti depressants they do not work if the person does not suffer from any chemical imbalance, I for one do not suffer from a few brain cells miss firing But you go to a few doctors they think your doctor shopping so whats the answer? Well it is simple really be strong do not let doctors give you some BS about lets try all these kinds of meds they do not work and will not work your pain is real, Why do pain killers work? They work on the part of your brain that responds to pain and your fight/flight system why do most of the meds we get from doctors for fibro do nothing? Cause they play on your serotonin that makes you sleepy and your mood increases cause it plays on those levels but pain has nothing to do with serotonin it is on a much different side of your brain. If you educate your self on what is what, your Doctor has a much harder time giving you meds he knows will do nothing but hopes they will numb you enough to quit bugging him/her. Truth hurts but the drug addicts and the people who abuse medications have ruined it for the rest of us who need to kill the pain not pretend the pain is not there.. Facts are facts and there are natural ways of increasing your serotonin without anti depressants.. Anyways we will be waiting a long time for a pain killer that is not habit forming and can break the blood/brain barrier without the intoxicated after effects.. Until then we all will continue to keep getting bad diagnosis and meds that do little to nothing (side note lyrica is a joke its made to give people the thought it was made for fibro but it is just another Anti depressant with ibprofen in it).. Keep being strong people and keep pushing your doctors for real ways to help.

  83. Morgan Says:

    I have just been told that I have fibromyalgia, I am lucky it only took them a year and half to find out what is wrong with me, lol lucky. People and family tired of me saying that I am in pain, crying most nights because of it, bloody pins and needles, lack of sleep, sorry to vent, but I am just so glad to find people who know what it’s like, and not to be looked at as if I am some kind of con artist, or it’s in my head. Hope you all get some sleep, I personally would love to sleep and wake up normally and not exhausted,

  84. Monica Says:

    I’m sorry If I’m missing something but WHY IS THIS HELPFUL? My doctor just told me two days ago that the cause for a lot of symptoms I’ve been experiencing is Fibromyalgia and I have been doing a lot of research that seems to back that point up but I’m having a really hard time coming to terms with the idea that I should even feed into this diagnosis at all. I haven’t told anyone and don’t really want to. If no one believes it, it can’t be proven, and there really isn’t much you can do about it other than living a different lifestyle food and exercise wise, than what good is it to have a name? I’m still just the same as I was three days ago before the diagnosis and telling people that I have a phantom illness will only make them think I am more of a hypochondriac than they already think I am. Frankly, I’m kind of sick of hearing the word fibro and want to go back to just being a weirdo with some odd symptoms and constant tension and stomach issues. I don’t see how this diagnosis is going to help me at all and I want to pretend it never happened.

  85. john schoon Says:

    50 yrs headacg 20 yr fibro. i cant beleive in this day and age one has to suffer this way.i have run the whole comet of drs .allways the same .go home and live with it.this is not crying now teying to type this at 3 in the morning from pain.i can spell better just not seeing good.if i could just get 50 % better.

  86. Mark Says:

    Such a validating article!
    It makes me fee better just reading it and relating to it.
    I was diagnosed 6 years ago and the only treatment I was offered was “take a painkiller.”
    It is very frustrating living with an invisible disease that is completely random day by day.
    My worse symptoms are the Fibro fog which is a daily struggle and the fatigue. The pain is tolerable but now and again I have bouts of very painful joints and muslces that last for weeks, the most pain I experienced was daily back and leg pains which left be unable to walk properly for about a year.
    I have never met or heard of anyone else with Fibro in my day to day life, if anyone knows of any Fibro groups in London then please let me know as it would be great to meet other people who understand what its like to have Fibro :)
    Best of luck to all!

  87. Cindy R Says:

    I have suffered from FM for years. It gets worse every year. The winter season it is really bad. I live on the East Coast and we have really bad winters. I have read quite a few post. My questions is, if one has a dx of FM then why doesn’t any of the suggested medications help? Savella, Doxepin, Lyrica that is to just name a few. I am curious to know what others take to help with there widespread pain of the joints and muscles?

  88. Annie Says:

    People invalidate my Crohn’s disease all time – saying I just need to eat better, exercise more, go Paleo – I understand you have an invisible illness, but don’t assume to understand someone else’s.

  89. June Smith Says:

    I have fibromyalgia and
    I still have pain every day. But there’s something important that can help with the fatigue. Have your vitamin D levels checked and your B12 levels. These levels were dangerously low in my body and I could hardly turn over in bed because of fatigue. My fibro pain is still there but after those levels got to normal, my energy level increased tremendously.

  90. Demetrice Champion Says:

    I to live with fibromyalgia. I went to a Rheumatologist, she gave everything else her attention. Then she told me I have it because I am overweight. I had it when I was a size 8, the doctors didn’t know what it was. Now I am a size 18,I feel horrible. I used to work out everyday. Now it hurt so bad it is hard for me to work out. Any suggestions will be great.

  91. Philip kane Says:

    Well write article I was diagnosed with fibromyliga about 3 yrs ago but dealing with the symptoms for so much longer after spending soo many days in Dr. Offices being told I was fine and that they couldn’t find anything wrong but I knew there was it wasn’t til I switched Dr. That he diagnosed me with the diease to this day I continue to work but struggle with it on a with in with out basics the people I work with in trucking industry sometimes can barely understand the ingredients to a peanutbutter sandwich now they have me with this diease to try and understand I fine myself almost on a weekly basises being harassed my manager asked me after answerING the question if there was a cure for fibro was so are u looking for a new career I feel like I have no where to turn and just don’t have answers for this anymore….


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