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Chronic Disease, Pain

Fibromyalgia – living with a controversial chronic disease

Fibromyalgia – living with a controversial chronic disease

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 Forbes.com, 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?

48 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.

    http://www.sacredhealingtree.com/blog/fybromyalgia-chinese-medicine-point-view/

  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.
    spinalcordstimulatorjourney.blogspot.com

  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
    Meds.
    I THANK YOU LADIES FOR
    SHARING
    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 myfibromyalgiarelief.com. 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: guptaprogramme.com. 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. 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.

  39. 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.

  40. Hynnil Says:

    nice post

  41. 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.

  42. 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?

  43. 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.

  44. 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.

  45. 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.

  46. 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.

  47. 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.

  48. 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.

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