how do you know...?????

Discussion in 'Fibromyalgia Main Forum' started by lunabella, Feb 11, 2003.

  1. lunabella

    lunabella New Member

    how do you know if it's fibro, or CFS, or MS, or lupus, or arthritis, or a degenerative disease or "depression" that manifests itself in physical symptoms (as a doctor told me last year), or just plain old "getting old"...??

    could it be that some of us are just not as physically sound, from lack of proper nutrition at a young age, or pre-natal, or due to genetics, or the fact that modern medicine has enabled the less-than-strongest to survive & reproduce, thereby affecting the human gene pool (resulting in people like us), or...???... who knows???

    i'm so confused... no $$$ to go to a bunch of specialists and get 10 million dollars worth of tests (they'll probably tell me nothing's wrong anyway)...

    i would have no idea who to go to anyway, there doesn't seem to be anyone where i cam (central TX) who can diagnose/rule out fibro. i've been searching forever & still don't know where to turn.
    the effexor didn't work (& can't afford anyway, plus the worries about long-term use- don't want to be a guinea pig!).... and the holistic method i've been trying isn't working, i still feel just as bad if not worse.

    today i started feeling pain in my hips just from driving the car to & from work--- that's a new one. it's getting harder just to go to the store & stand still in a line, for more than 15 seconds. going to the movies is painful too.

    a few people tell me "you just need to exercise".

    is it really that simple? too bad i hate exercising. but i would do it if i knew FOR SURE it would help with the pain. i am so tired of dabbling in this and that, thinking something's going to work.

    anyone know of anyone who could help- incentral TX, on a sliding scale maybe (or on a payment plan)-- who could give me some answers without breaking the bank???
    just wish i knew for sure what i'm dealing with here.

    thank you so much--

    lunabella (still wilting :( )


  2. joannie1

    joannie1 New Member

    I am sorry for all your sadness --BIG HUGS TO YOU-- right now. I don't know of any Doc's but I do know your flustration and the anxiaty of not knowing what is wrong with you. It is scarey and it is tiring and it is down right maddening. And I am with you on the exercise stuff, hate it period. I figure I have three children and cleaning up after them is enough exercise for me, too much most of the time.

    You really do need to find someone to do some testing though and I pray that someone on the board will help you in the search for a good Doctor. I also know that the Universities that are teaching hospitals you can get free care of a sliding scale so that may be a very good thing to look into also.

    Just wanted you to know your not alone and wanted to send a big hug.
    Take care okay and keep fighting the big fight, that's all we can do.
    Joannie
  3. mellow

    mellow New Member

    Has your doctor done any blood tests to rule out arthritis or other associated diseases that could be causing your symptoms? If not, I would ask for these to be done. Depression can cause physical symptoms and a lot of doctors don't know much about fm/cfs and so put everything down to depression and hand you a script. I have experienced this and it is very frustrating to come up against this way of thinking. I don't like exercise but walking is good for you but you need to pace yourself at first and not overdo it as it can worsen the pain. Good luck Mellow
  4. Fibromiester

    Fibromiester New Member

    ~I can feel your sadness and frustration, but don't give up hope and keep searching for relief. I hope others here can steer you more accurately. I'd just suggest "Educate". Learn all that you can, by reading these posts and sharing here, or reading the Library News here- there are so many good articles written about the research going on about FM/CFS and related...What to do is Compare what you read to your own experience or symptoms, and decide for yourself if you have a disease related to FM/etc. or if it is just "old age". With many of us, we Thought it was All in our Head! until it all came together, as the Aches & Pains were Identified! The Dr.s tests will rule out one thing after another, and do cost a lot of money, but maybe if you go to a DR. armed with Info. on your conditon, maybe he/she would listen and treat you sooner and help you get the relief you need.
    Just a thought; I hear your cry and I'd like to help...
    Love to you, and peace,
    Fibromiester
  5. 1maqt

    1maqt New Member

    i WIII NOT TRY RO MININIZE YOUR PAIN, YOU EARNED THE RIGHT TO SSUFFERING IT IS SO GREART AT TIMES IT WOUILD BE DISSENGENIOUS TO EVER MINIMIZE THE AWEFUL LIFE WE LIVE. WE ARE VERY PRESCIOUS SOULS AND GOD CARES FOR EVERY INNDIVIDUAL. Rrecently I have found the medications that work for me. I would like to share;

    I have been on them at different weeks. and off them for weeks. To see if they work!
    The minitue I go back on then I am at least 50%the very next day. My doctor did trial run by letting me take the meds.
    then she took me off each one to see if they worked.

    These three medications work together as none other ,____________________________________________________________
    First is to take the Cipro for 4 weeks 2x 500mg everyday for
    two weeks,. Then one a day 500mg for 4 weeks.Then take the doxycycline indeffinately 100mg 2x day
    ____________________________________________________________
    Take Neurontin 300mg 2xday, morning and evening. to work up to 600mg 2x day. This helps with pain, and some of the neuro problems. aaand help with the brain fog.
    ____________________________________________________________

    Thirdly take Ambien as it promotes stage 4 sleep which we need so badly.When Doctor took me off the medications I would revert back the same old pain and suffering.

    When you feel well enough it would be wise to do some walking or Join a gym for low impact training.

    LOL 1maqt
    [This Message was Edited on 02/12/2003]
  6. kerrymygirl

    kerrymygirl New Member

    I have been diagnosed with poss. tests to lyme, epstein barr,fm/mps/ana/spondylosis/degenerative disc/rsd or thoracic outlet syndrome/disc bulges and on&on my sister say`s my name should be in merks. When they go in they find rectal polyps,severe hemmroids/gastric erosions and tissue that looks like scleraderma. They don`t know what the true dx is so how do we know what to believe. Even judge at ss when I was going to add to his list said isn`t what I have enough and I did not have alot of these dx till after disability. I have come to the point for doc`s to be interested some home in how to improve my quality of life, when we have autoimmune disorders ther are alot of false possitive`s so it all is very difficult to sort out. Try to hang in there and find a doc who atleast care`s ,that is a full time job alone for some of us. Good luck on your quest because it doe`s take energy and you still may not have the answers you need. I STILL am not sure what is the real dx.except for sure fm/mps and spinal injury. Bless You!
  7. Mikie

    Mikie Moderator

    It is the most frustrating part of our treatment. There are so many illnesses which can mimic CFS/FSM and it is important to ensure that you do not have MS or Lupus, which require different treatments.

    There is a lot you can do to increase your quality of life with our illnesses, but find out first what you do have.

    Love, Mikie