Hi there! I'm a newbie... and I'm confused!

Discussion in 'Fibromyalgia Main Forum' started by nickbeth, Feb 5, 2003.

  1. nickbeth

    nickbeth New Member

    Well, just got dx FMS/CFIDS/possible MCS last week, and the high of finally knowing what the issue is is wearing off. So I actually found a doctor who seems to know what he is talking about and doesn't act like I'm crazy or just looking to not work or try to con him out of narcotics. Seriously. What is it that makes these people think that we are somehow deciding to get this sick?

    ANYWAY. I was on amitriptylene and desipramene last year (10 mg/day had me hallucinating bugs on me in the shower), xanax (which I liked a little TOO much, if you catch my drift), neurontin (aka gabapentin) for three months, which sent me into a crash an hour after taking it, Vioxx for several months, and although I liked it, I was up to three times the recommended dose and it wasn't cutting it for pain anymore, so they switched me to toradol, and I had an allergic reaction (hives for a week!), so now they don't want to give me any antidepressants (which is OK by me!) or NSAIDs other than Advil and Tylenol with a gravol when I need it for pain, Imovane and L-Tryptophan for sleeping at night.
    Any other recommendations? Anyone tried Orudis SR?

    The other really confusing thing is the diet and supplements issue. Some say eat for your blood type, avoiding key foods, some say cut out all dairy, wheat, animal protein and citrus fruit (which leaves rice, veggies, melons and berries....hmmm not going to sell that to the kids), and I saw on another site to avoid multivitamins... but nobody says WHY?

    Also, what kinds of alternative therapies massage/accupuncture/herbals work/don't work for you?

    Thanks for taking the time!

    [This Message was Edited on 02/05/2003]
  2. lou2

    lou2 New Member

    hey there!
    In terms of drug advice i can't give any as i don't take medication.........(i have FMS/CFS)
    But......diet wise. look up all you can on Candida....It is what 'they' think may be a huge factor behind tese illnesses. It involves giving up yeast, feremnted things, processed foods and most importantly sugar and stimulants . I havebeen on this since ocotber ad as much as i hated o admit it. I am alot better from not eating sugar. there are many posts about it on here if you do a search.
    Supplement wise......i take about 12 different a day... many are to supplement the diet e.g probiotics and garlic. The mst important thing for me is Magnesium, helps with pain and heart palpitations, anxiety and many other things. I also take glucosamine sulphate, co-q-10, antioxidants, high dose vit c,oregano, hep,iron and selinium....
    I had many tests and had a big magnesium and iron and selinium deficiency so i am also attanding a FM/CFSclinic in london where i have magnesium/b12/folic acid injections each week, they are claled myers cocktails, which should help bring up the levels......
    anyway hope this is of some use. This DD is a pain in the ass for sure,. But you will find this board very helpful especially, and its a relief to see all these others with similar symptoms...we aren't crazy for sure!!...
    take care, lou x
  3. Fibromiester

    Fibromiester New Member

    If you are confused, just Join the Club!
    Some of us think there are bugs in our blood, and take low dose anti-biotics(ABX) for them. They talk about Herxes and such.
    Then there are those of us who think we have bugs in our bowels and gut. We will talk about the diet- no sugar, no wheat, no yeast, no dairy, Hi-protein, lots veggies, etc. We also may use herbs or anti- fungals for candida(hence the "spit-test")
    Then a lot of us will be jabbering about medicines and pain killers, over and over.
    If you go to this site's Library and look up some articles: type in a subject, like Yeast, or Diet, or Anti-Biotics, or anything...you will find research being done on our DD's that will leave you BOTH excited and confused!~
    I hope you will use every avenue open to help you with your problems. I go to a Chiro, do stretches every day(I have a book), I've gone through a 5wk. Pain Clinic and learned lots of techniques, take meds, massage is Wonderful!, diet & suppliment(I'm pretty sure I have Candida-I just started the Med.), I have had Accupuncture for about 6 mo. and didn't get a lot of benefit,etc, and do lots of research!! WE have to be our OWN Doctors!...We actually have more time to do any research than they do!
    I hope more people will answer your post, but wanted to welcome you aboard!
    Fibromiester
  4. lou2

    lou2 New Member

    I also see a homeopath and osteopath regularly,,,which i find help a lot....x
  5. nickbeth

    nickbeth New Member

    So what is the benefit to an osteopath? And I have referrals to a sleep clinic (to rule out sleep apnea once and for all for the CFS dx) and to a physiatrist, although I've been waiting since September to even hear when my appointment is. That was a referral from a neurologist that was very frustrating, since she ordered an MRI and when it came back clear for MS, she just washed her hands of me like everyone else except the new doc.
  6. TerriM

    TerriM New Member

    It is all very confusing!

    The first dr. I saw after the family practice who said time and again I had a virus and would get over it was an internist. He did lots of blood work and then, as you mentioned, sent me to a neurologist thinking I had MS. When he examined me and I didn't have MS, he told me to start journaling . . . what was that supposed to mean? For some reason too many drs. just think we all, especially women, have "just an anxiety problem".

    I am going to try accupuncture in a couple of weeks for the first time. I posted a question about it a couple of days ago and people wrote back with positive responses. I've heard great things about it and that it is really good for the immune system & balancing the body. I was going for massage when I could afford it and it was helping some. I've heard people say that Reiki (or energy balancing) helped them and I read one article that a woman said she recovered from CFS (and serious chemical sensitivies) from getting Reiki frequently . . . she learned herself and could perform it on herself . . . not sure how that works!!??

    Since I am very sensitive to drugs & chemicals I do not take herbal supplements . . . I find the prospect too scary.

    I do believe someone the yeast infections are involved in all of this in possibly a bigger way than most believe. I had a chronic yeast infection for four years before I got CFS and the drs. just kept giving me one drug after another vs. realizing it was an immune issue. Now the monistat box even says that!

    I took amitriptyline very successfully for 6 months and felt almost back to my normal self, then I started being sedated into the morning so I stopped it . . . big mistake! I should have just cut back, but I didn't know what I had back then . . . didn't realize I had CFS for a year after I got sick & I figured it out myself at first. I tried to restart the Amitriptyline but I ended up have a reverse reaction to it and became wired.

    All the best . . . Terri