If its a syndrome and not a disease

Discussion in 'Fibromyalgia Main Forum' started by suzetal, Nov 12, 2005.

  1. suzetal

    suzetal New Member

    We say we want more money for research for a cure.

    Ive been told there is no cure for a syndrome.They need to find whats causing it.This was told to me on this sight.

    OK so find the cause for this syndrome.How?

    Some of us have had stress an accident Lyme, and many more things happen to us that could be the cause of this DD.

    There trying to find answer for this DD.How are they going to do that with so many different causes?

    When I was first diagnosed.I was put on antibiotics for 6 months they thought I might have had Lyme .The test were positive.Than went to a decease specialist and no I did not have Lyme.

    I have tried just about every pain med there is plus muscle relaxes and supplements.Change my diet yet nothing seems to work.

    My dear doctor told me one day.You have FM

    I asked what it was.She explained it to me.

    I asked so how long will it take to get rid of it.Answer there is nothing that we know of that will get rid of this.The thing we do know is that it is all over pain.There are certain trigger points and most with FM become depressed due to the fact that they can no longer function as they used to.

    Also that there may be days even weeks or months that the pain may just go away.Its remission.Most will have this at some point until the thing in you that trigged it comes back.

    Ive been there I have tried something and said .Boy this has worked thank goodness I have found something.No pain for weeks.Told DH I do believe Ill be able to go back to work.Such excitement.Than WHAM ITS BACK.

    Why? I really don't know.I really do not know and neither do all my doctors.

    I hope you all understand what I'm trying to say.

    A cure ?Who knows with all the different causes.

    A syndrome yes.How were when did it all start?

    I also have lots of other things now wrong with me since this DD.Cant help but wonder if it had anything to do with it.

    My orthopedic doctor told me it is very hard to tell if its the FM And or the CFS causing a new pain or if it is another problem .Sometimes serious.Well the serious one has arrived for me.I'm not gonna go into that.For now I have to deal with it by myself.

    Sorry for carrying on.Does it make any sense.I am in bad shape today .Want to go out but not sure I can alone today.My DH has to work.

    Oh well .I think its just food for thought.

    Hope I have not offended anyone.I sure do not mean to.

    ((((GENTLE HUGS E1 )))))
    Sue
  2. suzetal

    suzetal New Member

    I hope you find out soon as to whats wrong.

    I hear you and will keep you in my thoughts.

    Hugs
    Sue
  3. redsox10

    redsox10 New Member

    Sue,

    Sorry you are going through this difficult time. You say you tested positive for Lyme. Lyme takes years of treatment and if you started treatment and stopped it could of made you worse. I would be seen by a lyme literate doctor. I see you live in New England. There are llmd in CT, N.Y. Lyme is not just Lyme anymore, coinfections have to be treated.

    With a postive Lyme test youneed to get this addressed. What happened when you were on ABX for the 6 months? Lyme is difficult to treat and most docs are clueless. With a positive test please get this checked out by a llmd.

    Just looked at your profile. Your granddaughters are beautiful!! WHat a joy they must be.

    My daughter and son are dx with Lyme and is responding to treatments. Feel free to ask any questions.[This Message was Edited on 11/13/2005]
  4. ldbgcoleman

    ldbgcoleman New Member

    Here's what I believe:

    Yes it is a syndrome not a disease.
    Most Drs are merely treating the symptoms and not the underlying causes.
    The only way you can get better is to find a Dr that will do the needed testing and treat you for the results.
    There are many more things that could be causing this besides Lymes.
    Google Staelth viruses and start reading arm yourself with info and take it to your Dr. If that Dr won't help you find another one. This is something you will have to reasearch and fight on your own and if your lucky you will find a Dr quickly.

    I am no expert but this is what I believe. You have two choices live with this and treat the symptoms or work hard on your own to get educated and find the right help.

    It stinks that most Drs don't either get it or want to get it but there it is. Good Luck and take care. Lynn
  5. tandy

    tandy New Member



    Just sending you healing thoughts
    and gentle hugs back at ya~
    :)
    Not sure whats popped up on ya,...but try to remain possitive,..and most: Know we're here if you need to talk~

    Hugs
    Tandy
  6. karatelady52

    karatelady52 New Member

    I do feel your frustration. It was mine up until this past year.

    Lynn is right, most doctors don't understand that the underlying causes of FM/CFS are usually viruses, toxins, bacteria (like lyme) so they don't test for it.

    The other problem is (my pain doctor use to tell me this) that everyone has "some" viruses in them like EBV, CMV, etc., so they don't bother testing for them. They completely discount that if our titers are high for these viruses, that means the virus is active in our bodies.

    Lyme is probably your biggest enemy right now (as Redsox pointed out.) It takes a long time to address the lyme, plus coinfections that usually come with it plus the viruses. Lyme sets itself up in our bodies for ITS COMFORT and in doing so, it begins to supress our immune systems. Finding an LLMD is the most important thing you can do. Many go out-of-state to find one.

    You can go to Lymenet dot org for a wealth of information on lyme. They have been wonderful in answering my questions and my fears.

    If you have been sick for years, that means your lyme is chronic. It can take a year or so on antibiotics before you begin to feel better. I'm only on my 3rd month and I do see just a small glimmer of improvement. Its rough but at least I have a diagnosis and a light at the end of the tunnel! For years I heard the same thing you are hearing --- there's no cure.

    Its a fight but its a worthwhile fight! Don't give up, there is hope!

    Sandy

  7. redsox10

    redsox10 New Member

    HI Sue,

    How long ago did you test positive for Lyme? When my daughter was in her first 8 months of treatment for Lyme she felt much worse before she got better. Ithas been 14 months now and she is much better than before her Lyme diagnosis. It is slow but she is improving. She is healthier now than hse has been in 3 years.

    As Sandy agreed with me. Please see a LLMD right away. I by no means am saying all CFS is Lyme but Sue you had a positive Lyme test.

    Hugs come your way.
    My daughter was diagnosed with CFS before Lyme. Lyme is a serious illness. Please check it out.
  8. suzetal

    suzetal New Member

    Have been retested by a Decease specialist.

    He works with Lyme, aids I drew a blank but the list goes on.He knows his stuff.

    I'm sorry it took so long for me to respond not feeling that great.

    I need to thank E1 for there response and for caring.

    Hugs
    Sue

  9. redsox10

    redsox10 New Member

    Sue,

    With a positive Lyme test is the past youshould check out lymenetdotorg. It wouldn't hurt to see a lyme literate doctor who treats just Lyme. Most docs just don't know about Lyme.

    Take care of yourself and I hope you have better days ahead.

    Hugs and kind thoughts to you
  10. suzetal

    suzetal New Member

    I have a bit to much on my plate right now.But I will as soon as I can.

    THANK YOU ALL SO SO MUCH.

    Don't know what I would do without all of you.

    (((((( HUGS )))))

    Sue