what's my problem?? every doc has another diagnosis

Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, Jul 29, 2006.

  1. Shannonsparkles

    Shannonsparkles New Member

    The latest intel on me is lyme disease. [pause to roll my eyes and sigh]

    I think I'm getting jaded by it all. With every new diagnosis, dad thinks we've hit paydirt and we FINALLY have the answer, that THIS is the one thing to crack the case and get me well. I just don't care anymore. I'm waiting for the next shoe to drop. My mind's already going, "Okay, that's today's diagnosis - what are they going to scrap that for and tell me is my problem next?"

    I don't get a sense that anyone has the whole answer, or even a significant part of the answer. They can't ALL be right. Or are they all partly right? It doesn't matter either way as long as someone would come up with something that could HELP me, instead of jawing about what could possibly be wrong. I've been working the problem from every angle I know all these years, with more doctors than I like to remember, and I'm getting nowhere.

    I don't want to have lyme disease. I don't want to have any kind of disease. I don't want to be sick! I'm terrible at making decisions regarding treatment because of the cognitive problems and because I've been damaged so much by past doctor encounters that my emotions get in a tangle over it.

    I mean, name it Shannon's Disease if you have to, but somebody just fix this already! I'm 24 years old, and I've been housebound for a quarter of my life. How much longer do I have to wait?
    ((disgruntled))
  2. alaska3355

    alaska3355 New Member

    the treatment for Lyme disease helps you? Then it would be worth finding out. My son was negative for Lyme, but I think I've read some people test negative and still have it....am I right? Give it a chance (the treatment) and see if it helps.
    p.s. How is your diet going? I don't mean "lose weight diet" but are you eating a variety of things? Is someone cooking for you? I still think you need a home health care person. Love, Terri
  3. i can so relate to how frustrated you are feeling with the doctors and such.im much the same.i give up too.im sick of trying to do their job for them,in as doing my (agetha christie like )investigation into the causes of my illness.

    i think i keep up the fight because i want to some day proove my government is wrong,when it says ive made myself ill.I DIDNT MAKE MYSELF ILL,A VIRUS ATTACKED ME

    but just lately im thinking that im not doing my illness any good at all in searching and searching for the why,s and how,s.

    i feel so tired of it all too,but you especially have my sympathy because you are so young and just starting out in life.i want to tell you that all will work out well for you,and i think it will.but the lesson most of us have to learn is.we just cant keep tiring ourselves out looking to heal ourselves.

    im letting those paid to find cures,DO IT.and although im in terrible rib cage pain today,im going to get myself a cup of coffee,and go sit out on the garden.im so sick of this illnesses name,and today im going to just enjoy the nice naturely things around me.

    take care sweetheart

    love fran
  4. Marta608

    Marta608 Member

    I certainly do share your frustration with all the theories that abound but I'm impressed that you have doctors who are still trying to figure it out. All the ones I've seen just want to give me SSRIs - except the first one who diagnosed me.

    How many doctors are you seeing? Could you have an over abundance? lol

    Marta
  5. Aberlaine

    Aberlaine Member

    Oh, Shannon, I know how you feel. Each day I seem to get sicker and sicker, even though whatever I have (diagnosed with FM) isn't supposed to get worse.

    I know I have CFIDS but have given up on the medical profession. I've become very depressed over my medical problems and am seeing a social worker. She's been great! She told me yesterday that I didn't have to have a "diagnosis" to become educated about the diseases. And I could certainly treat my symptoms without a diagnosis.

    I'm so angry at doctors who can't figure out what's going on with us. Mine at least sympathizes, even though she doesn't have a clue. At least she doesn't tell me that "it's all in my head".

    Maybe you should see a therapist. It would be good to be able to talk to someone about your feelings - who wouldn't shrug you off. If You continue to be angry, frustrated, etc., you'll end up in deep despair - and you don't want to be there!

    Hugs,
    Nancy
  6. mbofov

    mbofov Active Member

    You might try muscle testing. I had been sick for 7 or 8 years going to various doctors who were no help, lab tests were always normal, and I finally stumbled across a chiropractor who did muscle testing. He immediately diagnosed some digestive problems I had which were making me sick (no regular doctor had ever picked up on them) and gave me supplements (not drugs) which helped a lot.

    He proceeded to help me over the next several years with weak adrenals, a liver detox, chronic strep infections and a few other things. Unfortunately, he hasn't been able to cure the CFIDS, but I believe that without him I would have ended up bedridden.

    It was cheap, relatively speaking - $50 a visit, plus the supplements. My now ex-husband at the time made fun of him and the testing, but I was desperate and would have tried just about anything.

    A word of caution - I was very lucky to come across someone who was very good at the testing. I have seen a few others since and none have been as good, but they did help some.

    Take care --

    Mary
  7. redsox10

    redsox10 New Member

    Shannon,

    My daughter was diagnosed with CFS. Diagnosed with Lyme Disease in Oct. 04 she is now getting better. I know someone else sick for 13 years. She had a CFS diagnosis and now has made great progress with Lyme treatment.

    If you do decide to get treated for Lyme Disease make sure you see a lyme literate doctor. You might want to check out the lyme boards on this site. you might want to check out lymenetdotorg.

    Best of luck to you and I hope healthier days come soon.
  8. Cromwell

    Cromwell New Member

    I know. It is like they just go round in circles. I told my new pain doc(first one I ever saw) that he was the last resort for me, as I was sick of being passed about. I mean they say, I think you have....." and then leave you with it.

    It is like keep on setting the table for a meal and no dinner arrives!!!

    Love Anne Cromwell
  9. jake123

    jake123 New Member

    If a doctor is not going to cure me, why can't I have a say in my treatment?
  10. slowdreamer

    slowdreamer New Member

    Hi Shannon..
    I got the CFS when very young..Didn,t know what it was in those days..An advantage in some ways...I was give The low dose Doxepin which zonked me out.Lots of rest and improved digestion. I lived in a clean healthy environment and didn,t have the enormous stress of the doctor and other "Healer " merry go round.I spent a lot of time outside. Still do. I went into Remission pretty much , became a cross country skiier, did another degree etc.Lasted for 25 yrs until I really pushed the envelope with activity and stress.. Stress changes the brain they are saying on the radio right now.

    So much is unknown but this we know
    1.Professional healers don't like to say they don't know...its more pleasant to guess.

    2.Nature Heals...what goes on in the cfs world is unbelievably stressful with all the "helpful suggestions" and the social stigma etc..
    3. With your youthful immune system I feel you have a better chance for nature to heal. I always enjoy your posts.You have a great spirit ..That has to be a help.


    [This Message was Edited on 07/30/2006]
  11. Scapper

    Scapper New Member

    Shannon: I so so wish I could give you some words of "hope" here but I seem to be in the same leaky boat :(

    Every time I go to my doctor, he finds yet another virus. I'm currently being treated for three simultaneously. This past visit, he discovered parasites, which would explain my severe stomach pain and inability to get food down.

    The days of when I used to get a "new diagnosis" and feel almost elated that they FINALLY FOUND "IT" are over.

    I'm having a hard time with finding some sort of hope in the midst of all of this struggle.

    So, I don't want to pull you down further with all of my struggles!!! All we can do is keep putting one foot in front of the other (well, not literally for us :) and treat the next layer that shows up. As some have suggested, you will never know if by treating Lyme you won't feel significantly better unless you try.

    We all just keep trying as best we can -- hang in there!!!

    scapper
  12. FOYBOYFOY

    FOYBOYFOY New Member

    SHANNON
    I FEEL YOUR PAIN, BUT IVE ONLY BEEN ILL SINCE FEB. IVE SEEN 6 DOCTORS 3 HAVE NO CLUE AND THE OTHERS DX ME WITH:
    CFS & FM (WILL NEVER FEEL BETTER)
    STRESS (6 MONTHS TO A YEAR)
    VIRUS (6 MONTHS)
    SO TAKE YOUR PICK
    I THINK THEY ARE ALL WRONG AND AM CONCIDERING GOING TO A MAYO CLINIC OR A UNIVERSITY HOSP
    ITS JUST TELL ME WHAT THE HELL I GOT AND ILL DEAL WITH IT !! GOD BLESS YOU AND KEEP THE FAITH FOY