FIBRO/MS/CFS?? PLEASE ANSWER MY MSG :)

Discussion in 'Fibromyalgia Main Forum' started by claireandgiles, Sep 23, 2006.

  1. claireandgiles

    claireandgiles New Member

    HERE GOES..
    STARTED OFF AS BALANCE PROBS, AND ON AND OFF I GOT ACHEY LEGS! AND I GET HEADACHES SOMETIMES TOO WHICH I NEVER REALLY GOT MUCH BEFORE. MY LEGS FEEL WEAK ALOT NOW, BUT I STILL ENCOURAGE MYSELF TO WALK ALOT ALTHOUGH THEY ACHE WHEN I DO! MY KNESS FEEL STIFF IN THE MORN SOMETIMES TOO AND IF I WALK TOO FAR. I HAVE HAD DAYS OF HORRIBLE FATIGUE AND SLEEPINESS THIS COMES AND GOES! BUT I NEVER HAVE ALOT OF ENERGY ANYMORE EVEN WHEN THE FATIGUE ISNT A MAJOR PROB! BALANCE ISSUE BEEN THERE EVERYDAY FROM DAY ONE THOUGH. MY SKIN IS RUBBISH TOO IN THE PAST MONTH! FOREHEAD IS FULL OF SPOTS!! YUCK! MY LEFT HAND HAS ALWAYS FELT WEAK BUT MY GRASP IS JUST AS GOOD AS THE RIGHT (STRANGE) I TEND TO SLEEP FINE ALTHOUGH I WAKE UP FEELING LIKE I HAVENT SLEPT AT ALL! THIS TENDS TO GET BETTER AFTER A SHORT TIME ALTHOUGH I HAVE 2 NAPS A DAY WITH MY DAUGHTER! LOL!! I HAVE HAD A SORE THROAT FOR A WEEK AND HAVE BEEN FEELING INCREASINGLY ANXIOUS LATELY! ALTHOUGH IM NOT WORRIED(WHICH IS SUPRISING) I DONT HAVE PAIN ALTHOUGH I HAVE LOWER BACKACHE AND NECK ACHE(NOTHING SEVERE THOUGH)

    THIS STARTED ABOUT 5 MONTHS AGO AND LITTLE THINGS KEEP CREEPING IN! IM THINKING THAT IS CANT BE FIBRO AS I AM NOT IN PAIN AS SUCH, YET ANYWAY! CORRECT ME HERE IF U THINK I STILL MIGHT HAVE FIBRO! THE FATIGUE ISNT DISABLING ENOUGH FOR IT TO BE CFS, AGAIN CORRECT ME IF IM WRONG! SOUNDS LIKE MS ALOT TOO!!

    AHHHHHHHH!!! ANYONE PLEASE HELP AND GIVE ME AS MUCH PERSONAL EXPERIENCE/ADVICE AS U CAN MASTER! SORRY FOR GOING ON! IM GOING MAD!! LOL

    CLAIRE xxxxx
    [This Message was Edited on 09/23/2006]
  2. TerryS

    TerryS Member

    I can't really help but I can tell you that I have a lot of what you are going through. My arms and legs ache (that's been going on for over 30 years now). The last 16 months, I have had episodes of extreme fatigue and now total exhaustion. I have been out of work for almost six weeks now.

    I have headaches on a daily basis. I started getting dizzy spells at the first of the year, and in the last four months have started having balance problems, shooting/stabbing pains in my joints, loss of words and sometimes loss of conversations, difficulty reading sometimes, mild electrical-like shocks that run through my extremities and my head, and the list goes on and on. I have been worried myself about MS.

    My PCP has ran all kinds of labs. I have positive ANA, anti-DNA, smooth muscle antibody, chronic Epstein Barr virus, high hemoglobin and hematocrit. Have had rheumatic fever and cytomegalovirus in the past, along with currently having mitral valve prolapse, dysautonomia, and thyroid nodules.

    My ENT was the first one to mention CFS (because of the chronic Epstein Barr titers and my symptoms). My PCP seems to think my heart's not pumping efficiently, so I'm going in for a nuclear stress test on Monday. My PCP referred me to a neurologist who has ran a CT scan of the brain (normal) and an MRI (still awaiting the report on that one). The neurologist also thinks it's CFS. The ENT and neurologist both told me to see a rheumatologist.

    I just YESTERDAY finally had my first appointment with the rheumatologist. He diagnosed me to definitely have FM. He was very easily able to locate all these tender points (although, I had no idea I had them). When he touched them, I about went through the roof and pain shot all the way through to my feet which felt like they had caught fire! He told me he didn't know about the CFS...that the chronic Epstein Barr is an infectious disease matter, and he then added that "a lot of infectious disease docs don't believe in CFS."

    However, I called the infectious disease doc who diagnosed my cytomegalovirus back in 2002. I told the receptionist what was going on and asked her to ask the doc if he believes in and will treat possible CFS/chronic Epstein Barr. She called me back an hour later and said that the doc said, "YES, come on in!!!" So, I have an appointment with him this coming Wednesday.

    I will accept the ID doc's opinion as to the EBV. If I don't have CFS, that would be awesome as this FM is quite enough...but maybe he'll be able to rule out any other stealth process that may be working in me. I have great respect for him. He diagnosed my CMV on my first visit (confirmed by blood cultures). We live in the Atlanta area, and he told me that he only sees about two cases of CMV a year!

    Anyhow, like I said, I'm not sure how much this helped, but wanted you to know that there are others of us out there still searching for answers and having really weird symptoms that we're dealing with!

    TerryS
  3. KelB

    KelB New Member

    Hi Claire.

    Sorry that you have to be here (!) but welcome.

    Some of your symptoms sound familiar to me (I have CFS), but you really need to see a doc for some tests.

    FM and CFS are diagnoses of elimination i.e. if they test you for everything else and they come up negative, then that leaves FM or CFS.

    You need to be tested for things like anaemia, MS, Lyme and a raft of other things. If you have good docs, the tests they run will scare the bejajus out of you (I had 2 MRIs, & tests for leukaemia), but they're just precautionary.

    You generally have to had had the symptoms for 6 months in order for FM or CFS to be considered, but even then some docs are reluctant to use these.

    Everybody with CFS, FM or both, has a slightly different set of symptoms, so it's quite difficult for us to give you any specific advice.

    Best I can say is to go to the doc. Maybe I'm being cynical, but my advice would be to just take a list of your symptoms (write it down in advance to make sure you don't forget) and don't mention your own suspicion that you might have FM or CFS. Self-diagnosis seems to make them very suspicious that we're just making it up.

    If possible, take along a friend or partner to make notes of what the doc says and also to back up your observations of symptoms. We can have such a wide range of troubles, that sometimes we seem to come over as attention-seeking or hypochondriac. If you have someone who has seen how sore/tired/wobbly you are, this helps.
  4. claireandgiles

    claireandgiles New Member

    i am being refered to a neuro. i really dont want it to be MS!! if its CFS or FM i will start that guai stuff! but with MS it scares the hell out of me
    thanks guys
  5. KelB

    KelB New Member

    I went through the same wobbles when they sent me for my MRI (then repeated it!), but I came up clear. Statistically, it's very unlikely that you have MS, but I know how nerve-wracking it is to wait for results.

    At least you have the comfort of knowing that your docs are being thorough.

    Let us know how it all goes.

    Cheers
    Kel
  6. FOYBOYFOY

    FOYBOYFOY New Member

    clair
    i have similar symptoms and lots more. im seeing an ear/nose/throat man and seeing my second rheumy next friday THAT MAKES 9 DOCTORS. i have 4 dx but still not convinced, so i keep pressing on with more doctors. i can except any dx but ya gotta convince me first. im getting my second brain(MRI)on wed to rule out ms and virtago problems. you need to see a rheumy, neurologist and infectious disease specialist. GOD BLESS AND GOOD LUCK
    FOY