need diagnosis from people who know

Discussion in 'Fibromyalgia Main Forum' started by susabar, Nov 14, 2002.

  1. susabar

    susabar New Member

    I hope this isn't too long... here's my symptoms... Started with EXTREME muscle tensions mostly in neck and my jaw... after few days made it down to my back, to the point of spasm and lockup. ( One trip to ER ) Then after a few days of sleeping off heavy drugs, My whole "nervous system" felt hyper stimulated like I drank 30 cups of coffee. Then dizziness, nausea, loss of balance, muscle and body fatique, and difficulty thinking clearly or performing simple tasks. memory not right. ( second trip to ER )... so far I've been told it is stress, then normal perimenopausal symptoms, a virus, a possible reaction to the flu vaccine, a migraine headache, ( which I do get), connective tissue disease, and the scariest one was MS. ( by the ER doc yesterday) I remember feeling this way about a year ago, but not this intense. ( I was under alot of stress from moving) I've noticed mild symptoms for the last year including " foggy headedness". What do you think ??
    can't get a Rheumatology appt for three months.
    THANKS!!!!!
  2. susabar

    susabar New Member

    I hope this isn't too long... here's my symptoms... Started with EXTREME muscle tensions mostly in neck and my jaw... after few days made it down to my back, to the point of spasm and lockup. ( One trip to ER ) Then after a few days of sleeping off heavy drugs, My whole "nervous system" felt hyper stimulated like I drank 30 cups of coffee. Then dizziness, nausea, loss of balance, muscle and body fatique, and difficulty thinking clearly or performing simple tasks. memory not right. ( second trip to ER )... so far I've been told it is stress, then normal perimenopausal symptoms, a virus, a possible reaction to the flu vaccine, a migraine headache, ( which I do get), connective tissue disease, and the scariest one was MS. ( by the ER doc yesterday) I remember feeling this way about a year ago, but not this intense. ( I was under alot of stress from moving) I've noticed mild symptoms for the last year including " foggy headedness". What do you think ??
    can't get a Rheumatology appt for three months.
    THANKS!!!!!
  3. kadywill

    kadywill New Member

    sorry! I think the majority of us were tested for MS and connective tissue, collagen vascular diseases. I, for one, was told for years and years that I had Lupus~~who knows for sure. I DO know that I meet all the criteria for FMS and your symptoms mimic mine. It feels good just to know the name of the demon possessing me, you know? For a long time in the 1980's I thought I might have AIDS from being exposed to AIDS patients at work. Your mind goes a little crazy when you don't know what's wrong with you. I still don't know exactly all of my health issues' origins. Stick around and you'll read a lot of things that may help you until you see the Rheumatologist.
    WELCOME!!
    Love,
    Kady
  4. Shirl

    Shirl New Member

    So you can get more imput on your post, it is slipping to the botton, busy day here!


    Shalom, Shirl
  5. Roxi

    Roxi New Member

    Have to agree its the FMS! Also known as the Twilight Zone! A weird place filled with the strangest collection of symptoms you've ever imagined! Kadywill is right! Stick with us and you'll be prepared to ask the Rheum all the ?s. In the meantime get plenty of rest! Do only what you like to do. You first! Good luck!
  6. Mikie

    Mikie Moderator

    It is vitally important to have a doc do a battery of tests to rule out other illnesses which can mimic our symptoms. For instance, polymyalgia rheumatica. If this condition, which feels just like FMS, is not diagnosed, it can lead to blindness. I'm not trying to scare anyone, but a valid diagnosis is critical.

    Love, Mikie
  7. pam_d

    pam_d New Member

    You also might want to schedule an appt. with a neurologist---you may not be able to get in any sooner than the rheumy, but do it for your own peace of mind; FM is not diagnosed by brain & spinal MRIs, but other things such as MS can be eliminated this way--many of us have been through these tests----I know that for the particular set of symptoms I was experiencing, I was glad to have tests for MS, Parkinson's, Lyme disease, etc. just to eliminate them. Just for peace of mind...

    Having said that, you sound like someone experiencing FM symptoms; I had mostly strange neurological symptoms for a full two years before I ever had pain (like muscle twitching, tingling, skin sensations, hands that felt swollen, poor memory & retention). Because I wasn't in severe pain, I myself dismissed FM---it's only been in the last year & a half that I've had the flu-like pain, and in the past six months that real pain has been a daily companion for me, though usually bearable.

    As Kadywill said, this is a great place to educate yourself while waiting for your appointment---many people here are in the same boat, and many people will have excellent suggestions for you on how to deal with your symptoms. My biggest tip is to try----and believe me, I know how hard this is---TRY to avoid anxiety over each new symptom, because you will get them, but many will probably be fleeting, pain or sensations that come & go. My biggest enemy in living with FM is anxiety, which just exacerbates my flares. But I'm trying to get better at not becoming anxious with every new symptom. This board is a great help for your fears!

    Good luck to you, & I hope you find some answers at your appt. In the meantime, welcome!

    Hugs,
    Pam
    [This Message was Edited on 11/15/2002]
  8. dizzymindy67

    dizzymindy67 Guest

    sounds like fm. i started out with symptoms hitting me all atonce in the start. then they faded to so many aday.its weird. some days i feel normal and others are terrible good luck
  9. marcus1243

    marcus1243 New Member

    Not that it's much use to you, because I don't really know what I have yet (though Fibro is tentatively dx'd). Mine started out exactly the same, then progressed over a year to being more of a muscle pain and weakness thing with tingling sensations. There might not be any diagnostic tests to tell you what you definitively *do* have, only what you don't. (And even some of those aren't reliable, lol!) From my own reading and research, your constellation of symptoms doesn't sound typical for MS. There are simple blood tests for Lupus/Lyme etc, and thyroid & ESR counts will narrow it down further. The one thing I would say is prepare yourself for all your docs not knowing what it is! Instead, try not to be too anxious, get loads of rest and treat the symptoms as they arise, one by one. Most docs will tell you it's a stress or post-viral syndrome, and since Fibro can be exacerbated by both, they may be partly correct. Arm yourself with some knowledge from this board, and when you're feeling better, get some simple tests done to rule stuff out.
    Hope you improve soon!
    Marcus

    [This Message was Edited on 11/19/2002]
  10. cls

    cls New Member

    Reassure yourself that the ER doc was just stating a possibility which dosen't mean that you will be diagnosed with that. I've been through all the tests and it is easy to let your imagination go wild with "what ifs" while waiting for your test results. Do you have a primary doc that you can see while waiting for the rheumatologist visit? That might be helpful in addressing some of your symptoms rather than getting to a point where they are so bad you are going to the ER.
  11. toots2

    toots2 New Member

    For me, the beginning of fibro started with extreme fatigue. Then noticed my feet hurt and I couldn't walk well. Had to use the electric carts for months. Then my back felt like it was going to break if I stood on my feet for any length of time at all. Went to all kinds of drs., had all kinds of tests. Couldn't sleep and started feeling like I had been beaten with a baseball bat and was very bruised every morning. Finally, got on the net and got some books and diagnosed myself. Immediately saw a rheumatologist but that was after seeing a neurosurgeon and ortho. It is amazing to me they never attibuted any of my symptoms to my muscles but then read myofascial pain is always overlooked. My very worst problems are with my eyes and ears due to connective tissue problems in both areas. My ears ring constantly and I have had two surgeries on my eyes which we first thought was dry eye but ended up being a keritoconjunctivis problem. I am so much better now getting sugar, white stuff and carbs out of my system on the Atkins diet. I lost 15 pounds last month and can now walk everyday. OF course, I'm not in a flare now and this makes a difference. Like everyone else, I have my good days and bad but when I feel good I live life to the fullest and do everything I enjoy like working in my garden, having friends and family over to eat and doing lots of fun stuff with my grandchildren and husband. I hate the cognitive problems and always feel like something is going on with my brain. Just too many symptoms with this condition to ever feel normal but at least I'm not hurting and not tired everyday. Hope this lasts a while for me, especially during the holidays and wish for everyone here that you feel good during the holidays too. Toots
  12. loonie

    loonie New Member

    Hi, Susabar:

    I was able to get a rheumatologist appt. quicker than usual because my doctor wanted to rule out pmr. Maybe if you get your primary care doctor to refer you to a rheumy for possible pmr you could get in quicker. This is a disease of usually older people, so it might be more difficult to use this "trick" if you are younger.

    Also be aware that not all rheumy docs are really familiar with fms. Mine wasn't-when I asked him what he thought about chronic myofascial pain, he just remarked it was the same as fms-which it isn't. Hope you get an appt with a knowledgable doctor.

    Happy days, Loonie aka Kathe
  13. AnnetClo

    AnnetClo New Member

    in your area. That's how I got the name of a rheumy here in Charlotte. Course, I gotta tell you, he did diagnose the fm for me, but he sure didn't know a lot about it or what to do. I got the name of a great doc here in Charlotte from one of the members here. She's a family doc but she's great. We've started doing some tests and trying some meds and she's promised to keep trying till we get it right. But I agree with Mikie, it is really important to have the doctor diagnose, and to get a good one. Which isn't always easy to do. But good luck. And I sure hope you can have some good days soon.

    Annette
  14. I agree with Annette call the arthritis foundation in your area. They have alot of pamphlets and even have great books on fibromyalgia they sell , I believe mine was $15 and it spells out all the symptoms, etc. They can recommend drs. in your area that specialize in fibro. Good luck.