Explaining Fibromyalgia to Others

by Kristin Thorson, Editor, Fibromyalgia Network
Posted: August 29, 2012

Do you understand what causes your fibromyalgia pain and can you easily explain it to others? According to a study by Robert Ferrari, M.D. and a team of primary care physicians, these two questions are the source of frustration among most people diagnosed with fibromyalgia.*

“Fibromyalgia patients have long been described as having a disorder that lacks face validity,” writes Ferrari. “The feeling or implication that one’s symptoms, especially pain, is described as ‘medically unexplained’ is of concern to patients, to the point of being offensive.”

Why shouldn’t you be a bit unnerved when your condition is put in the “medically unexplained” category? It implies your illness is poorly defined, despite three FDA-approved drugs for treating fibro and more than 20 years of active research on this condition.

“Patients have indicated exactly this: while the diagnosis may confer some legitimacy, it does not improve their understanding of their own illness, nor help them explain their illness to others,” writes Ferrari. Based on this perception, he compared a group of 104 fibromyalgia patients to a group of 272 “other” chronic pain conditions. This latter group had either rheumatoid arthritis, whiplash-associated disorder, osteoarthritis, tendinitis, bursitis, or back pain.

Ferrari found people with fibro were four times more likely to have trouble understanding and explaining their pain to others than people in the group of “other” disorders. Admittedly, the diagnosis of fibromyalgia has been controversial and patients are stigmatized for having such a wide range of symptoms. However, many patients in the “other” group had ill-defined or difficult-to-describe conditions as well.

“Whiplash is a highly controversial disorder,” notes Ferrari, “and rheumatoid arthritis patients have only ‘autoimmune’ and ‘inflammation’ to rely on for explanation.” Despite the complexity of these terms, rheumatoid arthritis patients feel confident understanding their pain and explaining it to others. Ferrari found patients with tendinitis, bursitis, and back pain often view their pain as a form of arthritis, which is what they told others. While this belief is incorrect, it sure makes life easier.

“It is not accuracy and proper explanation that matters in one’s sense of understanding,” claims Ferrari. Perhaps people with fibromyalgia have too many symptoms and too much information about their likely causes, which makes it more difficult to put into a few words, like “arthritis” and “inflammation.” For whatever reason, people tend to automatically understand these two words mean serious pain.

Attempts to explain your fibromyalgia in terms of everything that is going wrong in the nervous system and the muscles could be overwhelming. After all, scientists are still trying to iron out the details of what causes fibromyalgia pain and other symptoms. Although describing your fibro in terms of current research findings may be more accurate, it could also be an added burden you don’t need. Maybe if you just said you had widespread arthritis (even though you know this is not the case), life would be easier.

Knowledge is power for helping you adapt and understand why certain treatments may reduce your fibromyalgia symptoms. But when it comes to everyone else, view the explanation of your fibro on a need-to-know basis, with less info being the easiest for most people to grasp.

* Ferrari R. Quantitative assessment of the “inexplicability” of fibromyalgia patients: a pilot study of the fibromyalgia narrative of “medically unexplained” pain [published online ahead of print]. Clin Rheumatol. July 22, 2012.

124 Responses to Explaining Fibromyalgia to Others

  1. pamela says:

    Just trying to understand yourself is hard enough without explaining it to others. Because if you listen to yourself, you sound crazy!

    • Candace says:


    • Linda says:

      Perfectly stated….you really nailed it. I can see myself using this ‘quote’ when necessary.

      • Teresa Dunne says:

        Hi Linda
        Thanks for this fantastic article. Could we have some more by the Medical people who understand Fibromyalgia so that those of us who live in Countries who do not even try to understand the condition treat us as nit wit and can not see that they need to take it all on board when they come to make decisions about our treatment both medically and financially – we are not wastebasket cases.

    • Jan says:

      Pamela ~ WELL SAID!

    • Hilaire says:

      That is so true! Plus if we think that then it leads you to think of how others may perceive the information. Crazy just being one of those thoughts. During some of those times it cause those with chronic pain and problems to avoid seeking medical help.

    • CANDY says:


    • Mister says:

      So true

    • lunch@q.com says:

      I relate it to things people understand. The pain is like having bad arthritis, only it’s in your muscles not your joints. Then I tell them about the “extras”…like it has a sleep disorder (so I’m always tired), & it my memory’s bad so I have a hard time remembering things. And any little thing can make it worse. Like stress or weather or hard work.

      • Cindy Berry says:

        All the comments I have read are as if I could have written them! I have Fibro and CFS for probably 15 plus years , I am 54 and I life on Narcotics to deal with the pain . The problem with that is if I am not exhausted from the Fibro and CFS , I am further whipped from the Pain meds, I also have IBS , Irritable Bladder , Depression and Panic attacks , and people wonder why I am miserable!

        • Cheryl says:

          As I was reading through all of these replies, I could feel their pain, honest, I am in every statement they made. When I read the following, I just laughed to keep from crying, “I describe it as “my spinal chord needs a root canal, the radio is not on–it’s blaring, and the water’s not hot–it’s scalding.” One does feel like a failure at everything. God Bless all of us – He carries me!!!!!!

          • Tess says:

            As everyone has stated, me too! I can relate. In the beginning the first doctors I went to made me feel like I was making up what I told them were my symptoms. Like someone else stated I got to a point I did not want to go to a doctor, but I suffered so badly. I think partly why people don’t understand (doctor’s have no excuse) is because of the wide range of symptoms & how they change…

    • Tamera LeMaster says:

      LOL OMG! didn’t you hit the nail on the head! When I try to explain it to people I get just as confused as they are listening to me try to explain it.

    • ross buz says:

      No one likes to be bodily and mentaly differant from his fellows! It’s a lonely desease. As a man it can feel so humiliating. At 5′ 11″ 210lbs I look like I could throw a refrigerator, but when a woman holds my hand, and her thumb gently accupressers a spot on the back of my hand, I feel like someone jumped on it with a po-go stick!I explain it like haveing ESP with my sence of touch.

    • Arease says:

      I have given up on explaining syndrome due to lack of intelligent empathy despite free access to info to inform self. I now encourage anyone to go look it up and read up on the net. Then ask me what may I assist you with today? Listening ear, chores, read to me as the fog has not lifted for three weeks following the loss of another parent.

    • janetta harrington says:

      i just don’t even talk about it any more.

    • Debra says:

      Thank You. I feel really alone, misunderstood…and, well…looks like ALL OF US have so many of the same issues/symptoms. I wouldn’t wish this on anybody, however; I am so grateful to have found other people going thru this. If not for others sharing….it is so easy to believe…”it’s all in your head”. THANK YOU. THANK YOU. THANK YOU.

  2. Jody says:

    For the most part, I found the article good…however, while frustrating to explain fibro, if we don’t keep trying, we won’t have a future where people understand more about it. I agree that most people cannot believe “anyone actually lives with that much pain” on a daily basis! And yet, we do! So, if we can find a few key words for now…it might make our future easier to explain.

    • CANDY says:


      • Kathy says:

        I went to see the doctor for disability yesterday and she asked me what the pain felt like.. I told her it was like I was being microwaved.. and I am so stiff when I try to get up, I cant even put my feet flat on the floor.

    • Jackie Graybill says:

      I agree with Jody 100%. If most of us just stay silent then those of us who speak out look even crazier to more.

  3. Mary says:

    We already know that there is no way to explain a condition that doctors hardly recognize and certainly, in my case, don’t even bother to treat. What is being offered in this article?

    • dorothy brouse says:

      I have all of the above for 30 years. My doctor does not like to give a diagnosis because he is afraid some doctor may miss a serious life threatening illness. He said he thinks fibromyalgia is a autoimmune disease. The only thing that has ever helped me is exercise, stretches and warm dry weather The fatigue is so awful sometimes I just drag through the day. Arthritis doctor was of no help.

  4. Suzette says:

    I’ve just been having a conversation with my friend and said to her if i highlighted every symptom I’d let out a primal scream! I just explain too people that is like a firework display going off in my body and the show is different every time. I also use words like fizzing, rumbling, throbbing, stabbing, aching, high pain, low pain, quiet pain, loud pain….ooh hee the lost goes on…

    • Rose Lunn says:

      exactly – and most of their minds reply – flake, faker, not even!

    • marlene says:

      Burning muscles ache tired. Arms legs shoulders feels like a hot iron being pushed through throbing pain that gets worse when stressed

    • Tami says:

      Fireworks! that is a really good synopsis! I think I am going to start using that:) its a lot better than saying you have fibro and having them go “Oh is that really a disease? ” to which I usually reply, “Nope, I just made it up to get attention….”

    • Terrison says:

      I will say sometimes it’s like my spine is being wrung out, like a dishrag. It’s like I’ve just run a marathon in record time and my muscles are just packed full of lactic acid, they just feel so weak and worn out, and are burning in pain. Also I describe the trigger points-they’re like getting a knot in your muscle, same as other people, except to touch them makes you jump.

    • Terrison says:

      Also, that eventually you get so many trigger points that they grow together, making your whole muscle, or areas of it, hard as a rock. I now have muscles (started with my left thigh and moved down, and through the hips, and then over to the other leg) that feel as if they’ve turned to wood. Like Pinocchio. I’ve not yet discovered a way to describe this new pain.

  5. Suzette says:

    Haha sorry got a new phone and I think it’s got fibro fog I meant the say the list goes on! Good luck everyone and always try new therapies and learn to massage yourself and keep stretching and sometimes being in deep pain helps you e evaluate your life and find peace :-)

  6. Kris says:

    The best way I’ve found to describe fibro is associating it with the aches and pains of a bad cold or the flu. This usually gets people’s attention.

    • Ellen says:

      Having been diagnosed with Fibro 20+ years ago I have just about given up trying to explain it to others until I too started relating the pain to having flu. People seem to be able to relate to flu and no longer treat me like a hypochondriac!

      • april says:

        feel like i have a sinus infection or the flu,a headache all over my head, my neck always feels heavy like throbbing, shoulders hard as a rock and hurts to touch!…i have not been diagnosed just people tell me allot to go get checked I’m 28 years old and last year everything changed…nerve tests cause my arm started having fever and terrible pain in my elbow…tons test later..nothing?!:(

    • Hope says:

      That’s exactly how I describe my pain to people. Its like how ur body feels when u have the flu. All the aches and pains but 10xs worse and everyday of ur life. Some days are better than others but I’m in pain EVERYDAY!!!

  7. cheryl trueman says:

    i have been diagnosed with fibro for over 20 years, and the most difficult thing i have found is explaining my illness, to the point that i try and dismiss it and say it doesnt matter…

    • Sally says:

      Over 20 years, me too Cheryl…I too don’t go into explaining it because I have found that the look in their eyes say:
      “I don’t get it”…

      • Cheryl Hovey says:

        I tell people that people WITHOUT fibro naturally produce a natural pain relieving chemical in their brain & people WITH fibro do not produce this natural pain relieving chemical called “endorphins”. Therefore, we have higher pain levels than others. I know its not as simple as just that but that certain process is important. We live in constant, may times debilitating pain.

  8. Nancy Henson says:

    While having ME/CFS for 28 years now (+ mild fibro), I found as time went on it was easier to explain my symptoms in terms that the average person could understand.

    BUT, the problem was not with being understood but with people “wanting” to understand.

    There is still the overwhelming bias against these illnesses as being psychological. Its amazing how many are that biased.

  9. Sharon says:

    I am fortunately lucky when I describe Fibro. I tell people it is a nerve disorder where your nerves turn on or open your pain receptors for no reason. It causes pain a great number of places in my body. As it is a nerve disoder it can also reek havoc on your memory, mental state of mind, sleep, and many other things. Most people have heard of it or know another person with it which helps me.

  10. Callie says:

    I tend to explain the tactile sensitivity as if they had bruise and then poke it. A simple poke can hurt my sides or my arms even if it shouldn’t and explaining the type of pain in terms they have experienced helps some. I also use the flu aches example. There is a video on YouTube of a doctor who works with Alzheimer’s patients who equated fibro fog to feeling like Alzheimer’s.

    • Tammy says:

      I know how your feeling was diagnosed in 09 after 3 years of suffering from a double cervical fusion. Its awhful to tell your child she is hugging you to tight and your husband you cant handled being caressed. The pain all over does feel like your being poked with stick sometimes.

  11. Tasha says:

    I describe it as a ‘neuro-muscular’ condition and leave it at that. It sounds medical and serious and covers more than just the pain.

    • Terri Rothman says:

      Tasha your response has been the most effective for me. It’s short and to the point and covers a range of possible pain. In fact I stopped telling folks that it was fibro because I had to launch it lengthy explanations and I don’t really like to share such details. So thank you for your idea and I wanted you to know that’s it’s been enormously helpful!

  12. Becky says:

    I ask people if they ever
    burned or pinched their finger. Then i tell them to imagine their whole body feeling that way. also showers feel like riding a motorcycle in the rain!

  13. Dianne says:

    Can you imagine if you were a GUY trying to explain how you felt everyday?!!! Fibro is a family issue for us. I was diagnosed at 29 years old AND so were my children diagnosed at the same age: my son and my daughter. More research is being done exploring the genetic link, but it can’t be fast enough for us! Hang in there everyone!

  14. Joan says:

    It is so hard to explain, not even my husband understands and can’t believe I can hurt so bad and be so tired all the time. People who don’t have it, will NEVER understand. However, I must say the medication that I am on has helped me. I am now working 3 days a week, but the other 4 nothing much gets done. At times I even think I am nuts. Good luck to you all!

  15. Elizabeth says:

    I tell people that, while in most people pain and fatigue are a symptom of an illness, with fibro IT IS the illness. Something in the body’s communication and chemistry went haywire and no longer works properly. I describle the pain/ exhaustion in terms that the person I am speaking to can relate to.

  16. Kathy says:

    I strained my lower back in 1980, and fibro symptoms went into high gear and have only become worse. When I learned recently that my spouse’s brother and sister-in-law(who is an R.N.!) don’t believe that fibro is a real illness I was very hurt and angry. I’m mailing them a copy of this article to them. Maybe they will begin to understand how pain and fibro fog has affected my life & marriage.

    • Melissa says:

      Kathy, I also have issues with my hubby’s family and their belief that Fibro isn’t real. They repeatedly tell me to suck it up and get over it. I used to be really close to his family too. My husband is disabled, he has PTSD, and it took them a while to understand his issues, but they won’t even try to understand mine. It is very frustrating at times.

  17. Carey says:

    I often say that I have a neuro-metabolic disease that first showed up when I was a small child. Sometimes I say “chronic, incurable, neuro-metabolic disease”.

  18. Elizabeth says:

    I tell my 82 yr old Mother how I’m feeling on a daily basis.I call her to check up on her and she checks up on me.While we were talking 1 day she says to me after I said how I felt she said and you don’t dye.I said no.. no one dyes from it.just wish I could sometimes..having FM/CFS is a lonely exsistance

  19. Deborah says:

    So true, so true…I can count 15 different things that interrupt sleep…just for a start. So far I’ve found the two phrases “wonky muscles” and “ouchy everything” the most helpful in explaining FM to those (other than doctors, and close family) who need to know…

  20. Sharon S. says:

    All the posts sound familiar & I can relate to Candy so well. I am sore & have pain & stiffness in new places throughout the day & am so tired I can hardly go. I make myself get out of bed & in 30 minutes some days I may have to go back to bed. I can rest &/or sleep 3 or 4 hours & still be worn out. Just like recovering from a bad illness or flu. Then doctors want to know if you’re depressed…

  21. Roz Ollington says:

    Ive had chronic lower back pain for 20 plus years and over the last decade its been getting so bad some days I just wanna die, anyway about 3 years ago I was diagnosed with fibro so now have been wondering if all the back pain and all over joint pain fatigue and every thing else might just be the cause or explanation for my back pain, what came first, the chicken or the egg?

  22. Kathy (again) says:

    I neglected to mention yesterday morning that depression, anxiety and getting no deep sleep for at least 20 yrs. have also adversely affected every aspect of my life. Despite taking anti-depressants and anti- anxiety
    medications, in addition to numerous talk therapies, those conditions are worse than ever.
    I will follow the advice in this article when I’m asked to explain fibro from now on.

    • barbara nascimben says:

      Yes Kathy, I too have suffered from depression and anxiety for 30 yrs and last year (winter) was the worst ever and this winter isn’t looking good at all now that I have been diagnosed with Fibro. I’ m concerned. It was hard enough before this:(

  23. Christine says:

    I can say that when I hang with my best and dearest friend who has the daily struggles of MS…on a bad Fibro Flare up day all my symptoms are very close to what I see her going thru just to move…I am fortunate enough that mine at least let’s up and retreats…hers never does.

  24. Judy says:

    “They don’t know what it is… something broke” (to someone I don’t know well)

    “It’s kind of like what they used to call rheumatism” (to someone I know a little better)

    “They think it may be pain amplification” (to someone I know pretty well)

    To my doctors: I divide it up into pain symptoms, malaise/fatigue symptoms, and functional implications. I write it down.

  25. Maggie says:

    it is hard enough to live with the stress we live in it add to that explaining it to others but there is hope if we put our trust in the Lord for help healing & hope

  26. Deborah says:

    Trying to tell some of my friends goes very well. Then I have the friends that state”you look so NORMAL”, and have even put me down behind my back. As being lazy ( never have been), no ambition ( Not True), etc… Even when I explain that the burning and throbbibg, I sometime go thru – I have to push through or just give it up and lay down. To get some kind of relief.

    • Peggy says:

      Deborah …. I can relate to your statement “but you look so NORMAL”. If I had a nickel for everytime I have heard someone say, “You can’t be ill…you look so good”, I’d be rich and retired ! If I left the house looking the way I feel most days I would traumatize dozens of people :) and so I push forward. It’s been 20 years … one heart attack and menopause later and I’m still…

  27. Anne says:

    Just coming out of a big flare, neuralgic shooting pain in right big toe and left breast coupled with aches and pains and total exahustion for 4 days straight. I agree with the suggestion of telling people I have arthritis, its too complicated otherwise and folk accept this explanation and are understanding. I have suffered with this on and off fro 40yrs and await the day a definitive explanation…

  28. Beverly says:

    I tell people it is like exercising unusually hard so you are having muscle pain/spasms/stiffness and then you catch the flu.

  29. Carolyn Rumsby says:

    Most people understand the pain of knocking your shin or stubbing your toe. I tell them I have that pain all over, at various times, every day and no painkiller works. I also describe the tiredness as having been up far too late and you can hardly keep your eyes open, thats how I feel when I do too much. They seem to understand that.

  30. Melissa Cook says:

    I agree with all of you, I wish we could organize all these replies and we might actually make someone understand! Its so frustrating, like someone else said, to explain how much you are hurting and how hard it is to get up and moving, when you cant physically see something wrong.

  31. Carolyn says:

    I have several people telling me that I need to exercise more and I try to explain to them that I have to make sure that I don’t over do anything or I will pay for it dearly. When I am asked where my pain is I always just tell them it would be easier to tell them where it isn’t. I have my good days and it is always so hard to moderate myself because I want to do everything.

  32. tracy says:

    I hav been tossed from doc to doc for over 20 yrs! im so tired of going to docs and trying to make them understand what i go thru EVERYDAY OF MY LIFE! Pain managment is a racket! they make u feel like u hav to go to them to get the treatmnt u REALLY NEED,then they treat u like ur an addict. And all i want is real answers for a real and EXTREMELY PAINFUL COND. It seems they have a clu by now! BUTNO

  33. tracy says:

    I can relate ro all! ur to young u dont look disabled. My reply to those is, well u dont look stupid but i wasnt gonna say anythg! To the lady who says trust in the LORD!AMEN! CUZ ITS SURE HARD TO TRUST N ANYONE ELSE!

  34. Lee says:

    I have disc degeneration with arthritis & had them for quite a while before the FM. I’m sorry, but that is a lame description. Most people think you take a few tablets & rub a bit of cream to get some relief from arthritis. FM is a neurological condition & that is what I tell people. I have a neurological disorder. If they press any further I tell them it has some similarities to MS.

  35. liz green says:

    I empathise with most of these comments! I tell people its a neurological form of RA, caused by a malfunctioning nervous system which sends exaggerated pain signals to the brain. I say it feels like flu and severe jetlag. When they say ‘But you look so well/normal etc I tell them its because I only come out or see people on good days. A bad spell feels like dementia and/or body of molten…

    • Bev says:

      Iam just beside myself with pain and stiffness, tenderness all over and cold water touching me is excruciatingly painful. I wake up during the night feeling like my back is broken all the way and my upper chest has been crushed. I get up feeling exhausted and usually fall asleep in my chair within I walk like a still robot felling I can’t trust my ankles and knees to hold me. Can’t plan…

  36. Linda says:

    I see no comments from men and I am aware that women far outnumber men in having fibromyalgia. My son has recently been diagnosed with this and I am wondering what I can do to help him. He gets so much pain, he has to go to sleep. You can not have much of a life with this condition.
    Is it possible that hormones have a factor in fibro?

    • Terrison says:

      Yes, it is possible! Or at the very least that hormones play a role in co-existing conditions. At this point my Dr. and I are looking at the role the hypothalamus may play, and one of it’s functions is the basis of thyroid hormone production. But it also regulates body temperature and moods, among other things.

    • Maureen R says:

      I hope since you posted your son has found some male support, if not there is a great group of guys at menwithfibro.com who will welcome him

  37. Md B says:

    No need to explain, I just say, ‘Everyday I awake and feel, like I have been slammed into a cement wall, by a mack truck.’ If someone doesn’t get it…. that’s ‘their’ problem.

  38. Patti says:

    Here is what I tell them. “it feel like someone took a knife and put it between my skin and my muscles like they were trying to skin me and my skin is trying to heal itself back onto my muscles.” That seems to make them think. My way to cope is staying busy and forcing myself to just DO. I tell people when they ask why I stay busy, “because if I stop, I won’t be able to start again”.

  39. Deb says:

    The hardest things I have encountered is trying to explain to family, etc. why I need to avoid stressful events I know will put me into a flare that could last months. They think if I’m not experiencing unbearable pain at the moment I should go ahead and go. I know stress is a huge trigger and try to avoid it. Others think I use that as an excuse not to do something. No way to explain to them.

    • Kathy says:

      I totally know what you mean Deb, I ‘m already stressed about Thanksgiving . How am I going to do this. They just don’t understand. I will be in terrible pain all winter.

  40. Robin Glenn says:

    I am 49 and diagnosed a month ago with fibro. I work full-time as an EMT, and go to school full-time to earn my nursing degree. I have 8 months to go and I will be an RN…my dream. The pain is nearly unbearable at times but I keep going. I just pray the pain, memory problems and total exhaustion don’t win out. So many of my nursing friends think it is a joke and just don’t get it.

  41. Sarah says:

    Sorry,I don’t remember who said what. Love the explanation of low,quiet and loud pain. I also use the flu symptons. I also try and compare it to the pain of bruise. So nice to be reminded that i’m not alone. Thanks everyone! P.S. finding the right doctor makes all the diffrence. Please keep looking and don’t give up!!!!

  42. Jackie says:

    It is very refreshing to hear the same thing I am experiening! I was diagnosed in Jan. I say I have accepted it but I still want my life back. I have 4 children-the youngest 2. I feel the only people who understand are the ones who have this! I am a Christian and my hope is that the LORD will return soon. I know my family members really can’t understand. May God bless you all with a fibro friend!

  43. Fabienne says:

    For me, the most difficult part is not explaining I have fibro, but trying to explain the scala of different problems related to fibro… and explaining the pain is in itself a pain in the butt, just because pain is a very relative thing, some people do manage it beter than another and then have the tendency to judge quickly by their own criteria….

  44. Joanne dauria says:

    26 yrs I was told a mono-like virus, epsteinbar, forced back to work being a single parent of 2 children. To find a Dr that did not send me to a shrink after many, many combos of pills did not work, the thousands I have spent to try and get 1/2 of my life back. Each year I buy and take what ever pills are out with horrible side effects and am weaker.

  45. Joanne dauria says:

    Please allow me to explain what I have tried, how it impacts my family, and what friends are left. Yes I am happy to be alive but the quality of my live is less than sad for a women 57 who raise 2 kids alone. Now I can’t drive, maybe I cook if someone watches me. Usually have take-out, net flicks, no social life. A Prisonner in my own skin. What’s today? Smells, stress, stiffness, IBS, pain, migraines, etc.

  46. Jackie B says:

    After years of trying to explain my fibro symptons to family and friends I wish I had used a word like arthritis to mak ethem understand better – great article!

  47. Gregory says:

    I just don’t bother. If you don’t have it or know someone that does. Chances are you won’t get it. And that’s okay. Like i said i just don’t bother. It is soo tiresome..

  48. mazza says:

    I was diagnosed 5 years ago after 3 doses of menengitis nearly killed me. Rheumatic Doc said my brain had been knocked of its correct plain,
    which explains why it sends pain messages, and then turns away and
    forgets to turn them off again. I cope with that, as it is better than if I had died and never seen my grandchildren grow up. Incidentally they are more caring than grown-ups….

  49. Eileen says:

    I was diagnosed at age 36 two days before I was to leave on a 10 day disney trip. I still don’t know how I made it through those days in Florida, but when I got home I was diagnosed and immediately put on meds. It has been a trial and error with different ones and still trying to find the right combination. If anyone out there can offer any help I would appreciate it.

    • Linda LongCrane says:

      Tramodol is the only med that works for me for pain. Add weekly theraputic massage, lots of sleep when I can stay there, and long hot showers. Since I’ve retired, the fibro fog isn’t much of an issue any more, but stress still makes it worse. Good luck!

    • Drucilla says:

      Try to find a reputable, caring pain management Dr. Preferably a neurologist. Mine is the only reason I’m not still staring at the cealing from my back on the couch crying all day. Rheumatologist was no help except for diagnosis. Gentle hugs….

  50. Eileen says:

    Also, would you believe that when I worked over 2 years ago and had a few days where I had Fibrofog that my supervisor called me into her office and gave me info about drug treatment centers and said that I could be fired for using drugs at work. Really!!! I am in the process of applying for diability and still waiting to hear about an appeal hearing. Hope it goes well since I know I can’t work.

  51. Anne Vevers says:

    I don’t swear, well I never did but now I swear, sweat, roll, stretch scream and swear!! I have points on my body that burn like a hornet sting and it often happens on my toe while I am driving! What do you do? I also have Sarcoidosis, what a great combination!

  52. catherine davis says:

    I know how all of these people feel. I was diagonosed 15 years ago, at the time my friends and even my husband couldn’t understand what had happened to me. I have always worked hard and still sew when I can. Even I couldn’t believe the doctors at first why does this happen is what I want to know. I have found that ginko bilboa and ginseng does help with the memory lapses and the tiredness.

  53. Victoria Lowe says:

    I say it is “a central nervous system disorder involving the shift between the parasympathic and sympathetic nervous systems and an increase in pain transmitting neuro-chemicals”. I describe it as “my spinal chord needs a root canal, the radio is not on–it’s blaring, and the water’s not hot–it’s scalding.” Every minor pain stimulus is amplified out of proportion.

  54. Jane E says:

    I keep beating myself up for being so tired and feeling lazy!! When a normal person sleeps…..they wake up refreshed…..with fibro you never do. I wish sometimes someone would give me a drug to make me sleep for days…..maybe then I would “catch” up!

  55. Lynette says:

    I tell people FM is a nerve disorder that causes the receptors in muscles to malfunction, making me feel pain for no reason, it moves around my body & into the strangest places. It hurts to stand on rising, sometimes my heels burn, hands, one ear, one breast, and both hips may ache. Constant pain makes me cranky! pushing through makes me weary, stress is my enemy!

  56. Sandra says:

    After 20 to 30 years not sure how to explain to others. One minute I think they understand the next I don’t. In wheel chair and quality of life stinks.

  57. Audrey says:

    I’m so sick of the drug companies showing commercials that depict people with mild FM that can have relief from their drugs. What about those who just get mild relief or none at all because their condition is worse than the people depicted on the commercials. They imply that pain is the only symptom. I wish they would stop because those who have mild FM don’t understand either debilitating FM.

  58. Dixi says:

    I say too many antibiotics & vaccines that that led to weak immune system/gut dysbiosis which in turn causes widespread inflammation & pain. (Probiotics cause flare ups!) Pain causes stress = endocrine malfunction. & stress = more pain. Like a cycle. Exhaustion & pain = nervous system on high alert – body thinks you are always in danger = more flare ups. Liver & kidneys also involved. Depressing!

    • Meg R. says:

      Dixie, Where did you read or hear that probiotics increase fibro symtoms? I take them everyday for my IBS But I’d hate to hear that I’m causing my own flare ups. Could you give me more information please?

      • Cheryl Rowe says:

        Neuron Malfunction… meaning a malfunction of the whole nervous system. That truly is what it is…Cant turn the pain and temperature switch off in the Central Nervous System in the brain.

  59. lyda brack says:

    GOD bless all of you.i,too-have r.a.and fibro.but only for 1 yr and a half.i just tell anyone that asks me-to look it up on web m.d. i can’t explain it.i have had 60 yrs of perfect health and now am 65 yrs old-and feel like i’m a failure at everything

  60. Dawn says:

    Wow…been diagnosed a year now..46…do believe however it started before that, just the pain became unbearable. THANK YOU, THANK YOU…I have been asking and searching a year to hear from people who feel the way I do. This is horrible! I had two children not so much as a tylenol, didn’t use to get novacaine to get cavities filled, cut tip of finger off on log splitter..THIS IS GRUELING!

  61. Judie says:

    yes i agree the comercials for the drug companys…i will not name them but yes to some may be helpful ,but not to all …It makes us all look like liers in some peoples eyes , some say well why dont you take that it is supposed to help then maybe you could work !!! ya well Ive tried to explain but why bother thanks to the big corporation for making me feel like a bigger looser …!!!

  62. Drucilla says:

    I hate those commercials too, and I’m on those medicines. They are very misleading. I think it’s interesting that each “woman” is all smiles and back at work after their magic potion, ya-ya-ya. NOT. I couldn’t work now for a million dollars. I never know what’s going to hit from hour to hour. Still awaiting disability decision after being turned down before. Say a prayer for me.

  63. Theresa says:

    Agree with what everyone has to say. This disease takes your life from you! The commericials make it look like we are all just weak, mentally disturbed people. You know they are just trying to make money! Dr’s don’t have solutions for you-God forbid they try to learn! So they just say this patient is mentally ill (depressed) or they must be a pill addict..Its is SO sad, no one wants to help…

  64. Michael Handley says:

    Hi I have suffered with fibro for over 20yrs. I live in england, what you all say about fibro and the pain you get, effects me the same. Change in weather, lack of sleep, pain hitting you from all parts of your body, 24/7. The one thing with fibro you can look okay,but you are in pain. I have tried all sorts of pain drugs, waste of time. Brushing your teeth, washing your face, etc painful.

  65. Melissa says:

    I agree with everything you all are saying, this chronic
    Pain fibro has disrupted everything in my life, mood changes
    To feeling like I’m having menapause, hot flashes ,
    As well as painful periods being so intensived I can’t move,
    I finally had to have hysterectomy cause things just weren’t right.
    I’ve been thru every test imaginable and they can’t find anything explaining it.

  66. Linda E says:

    There is consolation in knowing you’re not alone with an illness. For me, I tell people who don’t understand that “It’s like running a high fever all the time… headache, aching all over and skin so sensitive to the touch you want to move into a bubble.” Anyone who has ever run a fever can more or less relate. Beyond that, it’s been my experience, they don’t want to hear any more.

  67. kimm smith says:

    I explain to some it’s like having the flu everyday! there’s a substance missing in the spinal cord and makes the nerves keep firing sometimes even clothes hurt my skin .
    The worst for me is the chronic fatigue and brain fog!!
    Finding the right doctor is key also because some will dish out pain killers like candy I’m already tired and the pain killers don’t help anyway Find someone who…

  68. Tina says:

    It is so comforting to me to read all of your comments. I do feel alone with my fibro. sometimes. A relative of mine recently told me that it is not a real condition and that really hurt. My parents and husband just ignore me when I talk about it. I don’t bother to mention it much anymore. God bless all of you and I will pray for you.

  69. Cheryl Rowe says:

    I explain it as having the flu, cancer type pain and migraines with IBS and urgent Bladder with a lot of stiffness and a whole lot of swelling, leaving me with hardly a memory and no concentration and mood alterating. I also tell people, leave the stress on my doorstep before you enter the door.

  70. glenys says:

    I have 2 ways to describe FMS to people: (1) I ask the person whether they have had the aches/pain associated with the of the flu. If they reply “yes”, then I say FMS is like that but multiply the pain/aches by 10 and that is me on a good day. (2) FMS is like an arthritis, except it is not in the joints but in the tendons, muscles and tissues. People seem to get the idea of what we put up…

  71. Maureen says:

    Thanks for the article! I was diagnosed 13 years ago and am still trying to explain it to people. Few truly understand, the rest don’t. They see me on good days gardening or getting housework done and wonder how I could be so sick and sleeping so much. I don’t complain when I’m in pain, but I do let people know what’s happening at that particular time. Even my husband seems to doubt me now…

  72. cheryl savage says:

    I have a “pain” doctor whom I’m seeing for other issues. When I told him I have fibro, he said “there’s no such thing as fibro.” This doctor has a tv show!

    • Debbie Reynolds says:

      I’d want to hit that doctor. He evidently has no idea what we go thru every single day of our lives. It’s a living hell having this “fibromyalgia” and nobody will ever understand what it’s like unless you have it. And everyone is different. I can’t exercise, shop, or do any normal every day things without awful pain and fatigue.

  73. Dana says:

    My “go-to” description is that my pain dial is turned all the way up (as in too loud/much). This usually gives the person a visual of what I am talking about.

  74. Christina says:

    I was recently diagnosed with FM but have been “sick” for almost ten years, I am 41. I am single and wondering how in the world you meet someone with this diagnosis and how soon should you tell someone you have begun dating. I had been seeing someone and when things got real rough he bailed. Now I am single and hoping to meet someone but with this “baggage” I am not feeling optimistic…

  75. Trish says:

    I was diagnosed in 2001 when I was 41, but had symptoms for years before. My 83 year old dad tells me he doesn’t want to hear all that **** when I try to explain to him why I am having a bad day. I am his full time caretaker for Parkinson’s disease. My youngest daughter, who saw my agony as she was growing up, now calls me a hypochondriac. My oldest daughter is my rock though.

  76. Delilah Shaler says:

    I have had FM since childhood (now 60 years old). The way I describe my FM to others is that it feels like a nasty sunburn of my muscles, and like I’ve been stabbed all over my body with an icepick. I also tell them FM is like trying to run a marathon with the flu – every day. I think creating vivid images in others’ minds sometimes opens their understanding of what living with FM is like.

  77. Nancy R says:

    This article didn’t help me in the least. I still have a problem explaining it, especially to my husband. He seems to act as if I am just getting old and having trouble coping.

  78. Kris says:

    It so hard explaining what your symptoms are like. I get many different types like throbbing to a numb feeling. I’m in highschool and this year has been one of the worst. I am currently homeschooled. Most of my family makes jokes about me not being able to attend school and tell me to suck it up. It seems the only time they believe me is if I’m in so much pain I’m sobbing but if I’m not I’m…

Leave a Reply

Your email address will not be published. Required fields are marked *

captcha *

 characters available

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>