Mom's with Fibromyalgia, MS, or Chronic Fatigue

On disability for CFIDS
November 26, 2007 at 8:10 PM
Hi, my name is Marian and I live in Virginia. I was diagnosed by my baby sister as having what was then called CFS. When I went to my doctor, I told him what my sister said as I had the same symptoms as she did. He just sat down and looked at me then said "you know I believe she is right". He did many tests to rule out other diseases and I also saw another doctor more informed and he did tests that my family doctor didn't know to do.  Well they both agrees I fit the criteria. That was in 1990. My symptoms began with flu like symptoms. My husband and son were in the Navy and participating in Desert Shield and Desert Storm at the time. Also I was working for the Army as a Contract Specialist. I lasted at work until 1994 and my memory was affected. I forgot how to do my job of 18 years!  I was so tired I could barely make it to work. Finally when my husband came home in 1994 he took me to the doctor for a check up. When my doctor saw me he told my husband to take me to work and clean out my desk, I was finished working. It took until late 1995 for my disability to be approved. But being that it was Federal Disability I received it faster than one would on Social Security.
I have CFIDS, Fibromyalgia, Memory Loss that I take meds to slow down, Bursitis in my hips, Arthritis in my knees and spine, Thyroid problems, sleep problems, and an injured sciatica nerve that I get epidurals for every 3-4 months.
Now I have a question as I have another symptom that both my sister and I have experienced.
There are times when neither of us can go out if it is windy as it causes our skin to hurt and I do mean hurt. Also it hurts to put light pressure on my legs as that causes pain even if you just push a little with your finger.
I am so happy to find this group.  Let's compare notes.


  • Shwy721
    by Shwy721
    November 28, 2007 at 1:02 PM
    Wow.  That was an amazing story. 

    My sister has had the epsteinbar virus for many years which caused her to get mono.  I ended up with the same virus (Epsteinbar), but never got mono.  I was diagnosed years ago, In the late 1990's with Chronic Fatigue Syndrome.  It hasn't been easy.  Somehow though, I always seem to remain stable.  I remember breaking out with soars in my mouth and getting enlarged glands with pain feeling as if I had the flu as well.  I dealt with alot of overwhelming fatigue that I could not control.  I'd be sitting at the dinner table holding the fork getting ready to eat and I'd lean over the plate and almost couldn't even hold the fork.  My husband never understood.  Sometimes he still doesn't understand.  It hurts. 

    Recently, I'd experienced more painful things all over my body.  I always feel sick.  I was sent to a specialist ( Rheumatologist ).  That doctor told me that I had been misdiagnosed and what I really have is Fibromyalgia.  That was last year.  But soon after I came out pregnant and didn't go back to the specialist. 

    Most recently (about the last 2 weeks), I have been experiencing alot of pain in my neck, left shoulder, and left arm.  The pain then started going further down my back.  It has been very painful and I still experience it.  I went to the hospital for the pain because it has started to affect my spine and I know and been told that the spine is nothing to play with, so I went to the ER.  There I was told to go see a spine doctor.  Everyone seems to be very booked and it's going to take weeks if not months before I get seen.  I think it's rediculous because If it's serious, they may not catch it in time. 
    Anyway, I just hope it's nothing too serious.

    As far as your story goes, I think in my opinion, that you should get further testing done.  It sounds so much like MS.  I hate to say that, because I hope that I am not experiencing early symptoms myself of that, but that is how it sounds to me about your story.  With the memory and the severe pain in your skin and legs, It sounds so much like it to me.  I learned alot of that from Montel Williams himself who has MS.
    Just wanted to say what I thought.  I just think it's better safe then sorry to be checked for it.  It would be better to start getting treatment now if that were the case.

    Please keep me updated should you go through with that.

    Good luck, take care, and God Bless,

  • flutterby.16
    January 14, 2008 at 9:10 PM
    Hello, I have seen so many doctors and gone to conferences on this disease, I met Dr. Chaney, one of the doctors who did research on CFS when it was called the Hippy Flu.  He also treated patients until he retired. I had so many tests that ruled out all the other diseases. I feel after all this time that I am comfortable with the diagnosis. And since my sister came down with it first and is very knowledgeable to the extent she was on TV in Tampa FL with her doctor to discuss CFS.  I have taken so much information from the conferences to train my doctor. I didn't know back then in the 90's that there was so  much information out there about it. So now they say I have CFS and Fibro because the symptoms of both overlap each other.  In different countries it has different names. There is a book out that is rather old now named The Disease of a Thousand Names.. I also have a boo9k written by 2 women about CFS. It gives you so much info on what to expect. It was written a while ago but it helped me through the difficult times. I also have a movie that showed people with CFS and the effects it had on them. The first time I watched it I cried.   I have found that since I have had this disease I have to be a "different" person when I am around people who do not have it or are not informed about it because I don't always look sick.
    One thing I have noticed, I can tell when I am going to have a bad spell by looking in my mouth. I get a very red rim around the arch of the back of my throat where your tonsils would be. Yet I do not have a sore throat! Have you ever experienced that?
    Have you found out if you have MS?

    Best Wishes, Marian
  • Mria1964
    March 22, 2008 at 8:48 PM
    It is interesting--the thought of early MS. I have a friend with MS and she has asked me if I am sure I don't have it, because of my symptoms. She has watched me fall repeatedly and now I experience a lot "weakness." Is the weakness something that a lot of people with Fibromyalgia (what I have been diagnosed with) also experience?

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