Fibromyalgia Disease or Syndrome?

Discussion in 'Fibromyalgia Main Forum' started by cc2be, Mar 4, 2007.

  1. cc2be

    cc2be New Member

    Hello all,

    I'm curious to know how many people were diagnosed with other medical problems prior to being diagnosed with Fibromyalgia? Example: Arthritis.

    Also, I was in a pain management class little over a year ago and had a doctor tell us that Fibro is linked to childhood trauma and or from an abusive past. I also learned that there is a chemical imbalance in the brain that does not shut off pain signals and that is why people with Fibro are in pain most of the time. How many of you would agree with that statement?

    In my experience with my doctors, they've all been very dismissive of how Fibro can affect a person's life. I even had my family doc tell me it's not an earth shattering disease and that they really use that diagnosis for patients who have a host of problems that tests have ruled out no other reason for the complaints.

    I have had Psoriatic Arthritis along with many other medical problems and a few years ago, a rheumy told me I also had Fibromyalgia. When I searched for answers on the how's and why's of this disease I was left with many mixed feelings. To this day, none of my doctor's address the fibro diagnosis because of all the other pressing medical problems.

    I truly believe that Fibromyalgia has a long way to come in the medical community and I feel sorry for so many of you that have had your lives wripped apart by it's dabilitating affects. I believe it's you guys that are setting the standard for it's course of action. Like any other disease prior to it being acknowledged as a disease it had to go through a cycle of uncertainty and periods of questioning. They have come a long way but yet such a long way to go! Wouldn't you all agree?

    I guess the point of my post is that I wanted to share my compassion for all you who suffer and lack the proper medical support. I admit I don't like to tell people I have Fibro because I worry they will judge me, maybe it's because of all the things I've read and from my doctor's repsonse to it. If I didn't have such bad arthritis and psoriasis along with other issues I'm sure I'd go mad from frustration at having a doctor really treat my problems. I've heard so many sad stories of those that suffer in silence. It's a good thing a message board like this one exists.

    I hope I haven't offended anyone with this post. I know it's touchy talking about this subject because I don't want to demean anyone of you who have this as your primary diagnosis. I do feel for you all~

    Best Wishes to everyone! May you all have a pain free day!
    Sincerely,
    CC.

  2. Shalala

    Shalala New Member

    Hi CC ... based upon the initials FMS I guess it is a syndrome? but it sure feels like a disease ;-) .

    I had all sorts of pains and problems for years and went to DR after DR and had never even heard the term Fibromyalgia until 4 years ago when the DR sent me to physical therapy and the PT asked me how long I had had fibromyalgia? I had no idea what he was talking about. He asked me to lie down and he started touching areas of my body and it hurt soooooo bad (now I know they are tender pts). That is how I learned about FMS. NO DR ever did that (checked tender pts) not even the internist I went to for the adrenal tumor that showed up on an MRI in 2000. DRs do not understand our pain. The PT did. It is sad how DRs "brush us off". I went to a Neurologist and he didn't even want to talk about FMS. He is sending me to sleep specialist. OK. My DR told me I should change jobs ... yeah right ... who is going to hire me? hahaha It is very sad for all of us who have this (and also CFS). People make you feel like you are a hypocondriac or that you are nuts. You lose friends and family over it. Sometimes you feel like you are losing your mind. Your whole world changes ... and not for the better.

    Take care !
  3. survivor13

    survivor13 New Member

    i dont know if i agree with the statement you wrote of the doctors assumption or not but i had it explained in a very different way, i was told that having FMS is like fighting a losing battle, for example if your body gets an illness or a virus it sends out antibodies and other defence mechanisms to fight whatever is attacking it and they go on relentlessly untill they have defeated whatever is ailing you at that time. with FMS it is like having an army rampaging through your body doing harm and causing pain, the body despatches their army to counter attack the onslaught but although it fights it never quite wins, it may win a few battles along the way for short times but the war can never be won. i thought it was a great way of explaining it myself but not very technical lol.
    as for FMS being linked to childhood trauma or abuse i have never heard anything so specific. both these awful things could be a trigger im sure but so can any emotional or physical trauma. so can a car accident of simply anything which causes you to experience a 'trauma' in any way even mild. My onset of FMS has always been linked to my grandmothers death as this was so traumatic for me when this fabulous lady was no longer in my life as i actually collapsed and was admitted to hospital unable to walk or perform the simplest of functions for over a week. This was put down to extreme grief and my body and mind went into a kind of shutdown to cope with the pain. But, to be honest, i know i had symptoms before that time although they were only mild and occasional. i often wonder if my grandmothers death just 'kicked' the condition along into a more severe level and do personally beleive that there are varying stages of FMS. i have since had a very serious bout of chicken pox around ten years ago which lasted for over six months and put me in a wheelchair in parts and since that episode have been much worse and unable to work even part time. we are often told that any kind of viral infection is not good for folk like us as we have reduced immune systems and our bodies are unable to fight them adequately, im living proof im afraid.
    as for it being a disease or a syndrome im split as i know its a syndrome which covers a whole unbrella of symptons but have been told on many occasions that it is indeed a muscle diseas so i m not completely sure either way but if was pressed id say its both, hows that for sitting on the fence? i dont think you will have offended many people with your post as we are a hardy lot on this site, we have to be to contend with the amount of brick walls we come up against and the amount of time we bang our heads in disbeleif at the treatment we do or dont get as the case may be.
    At the end of the day it is what we are all here for, to find answers, to find comfort, to find friendship and to just be happy in the knowledge that there is someone else out there who totally understands where we are coming from no matter how weird the question, how wierd the symptom or feeling we experience on any particular day. That in itself is worth its weight in gold and is a true sanity saver many times for me and a lot of folk like me.
    Finally, as for suffering in silence, we all do it!! because its much easier than trying to explain it all and have the person look at you as if you are round the twist or a complete hyperchondriac because 'we look so well' that one always makes me smile and i wish i could let many people walk a day in my shoes and see their reactions afterwards. If you need help explaining things to other folk then i would recomend 'letter to normals' put it in the search engine on here and print it off, many of us have and it is gratefully received and evokes some very interesting questions and more to the point at times a little bit of insight and understanding.
    sorry this reply is so long but kept scrolling back up to your post and trying to cover all the things you asked. hope it helps in some small way. xxxxxxxxxxxxxxxxxxxxxxx