Newbie - Hello & Looking for confirmation of some info? LONG...

Discussion in 'Fibromyalgia Main Forum' started by joncyn1990, Sep 8, 2005.

  1. joncyn1990

    joncyn1990 New Member

    Hello all,

    I am brand new to this board, so Hello all! It is 1:32 AM in my time zone (FL) and another night of no sleep... <sigh>, despite lots of meds.

    Besides just some plain old emotional support (does everyone feel this alone sometimes???)...I am looking for some specific answers on diagnostic testing....if anyone can help, I'd appreciate it more than you can know. :)

    I have had a confirmed diagnosis of FM for almost three years (3 diff. docs + my pdoc), but even though they are great docs and are treating me with the latest and best 'conventional' meds, I am not getting better.

    Lately, being couch bound (talk about frustration and tears!!), I have been doing alot of research and have found some info on some testing that I think may be useful in possibly changing or adding to my treatments to make me better.

    The info I found was on some pretty extensive additional blood work that can be done for thyroid, adrenal and other hormone levels, as well as for various types of viruses that some researchers suspect may in some way be related to FM. The results of these 'extra' tests can indicate deficiencies and immune conditions that are contribute to FM and there are specific supplementation and antibiotic treatments that can deal with these.

    Has anyone here heard of anything like this? The info came from a number of research abstracts that are fairly recent and seem reliable....I'd like more info before I spend precious $ on things that may or may not help.

    Thanks for listening..... <HUGS to all>

    Cyn
  2. suzetal

    suzetal New Member

    Welcome to the board.Sorry you have FM.I also have it been 3 yrs for me.

    Supplements have not worked for me and neither did antibiotics .Was on antibiotics for 3 months they thought I had Lyme disease.

    Many on this board have had allot of help from supplements.

    I also had to stop working.I loved my job want to go back.Like you I spend a lot of days in bed and crying.The depression is bad with this DD.

    The meds. I take are cymbalta 90 mil. aday vicodin, oxcycotin 40 mil , nueontrin 1800 mil a day and ambien 10 mil 1/2 hour before bed.

    I also have IBS and CFS. I'm not much help but I'm sure others will post.

    Welcome again oh and HAPPY ANNIVERSARY.

    Sue
  3. puppyfreak

    puppyfreak New Member

    I think it can be helpful to get a complete panel of bloodwork to check for any deficiencies. But I've had more than one Doc tell me that taking all kinds of supplements just gives you expensive urine. And you have to look carefully at the studies [how many subjects, what they controlled for, all kinds of other stuff]
    If you have symptoms that you think may indicate something needing correcting, then it's certainly worth looking into.
    Part of my skepticism comes from not seeing any spectacular results when I have taken them.
    But as previously stated, lots of folks here DO find them helpful. In addition to prescribed meds, I take a multivitamin and extra minerals and B vitamins. I need the extra calcium and the B's help when I have extra stress.
    It's hard to know what to pursue when looking for some relief from this illness!

    Char
  4. rileyearl

    rileyearl New Member

    Welcome!

    I think I've just had the blood work you're talking about. I went to the Seattle Fibromyalgia and Fatigue Center (FFC), met with the doctor for an hour, then had 37 vials of blood drawn. They are testing for the hormones and viruses you wrote about. I get results on 9/21. One thing very satisfying was that Dr. started me on thyroid right away, without waiting for the blood test results. She said 95% of her patients are deficient in the T3 component of thyroid. The test that regular MDs do for thyroid doesn't measure T3 separately.

    There are a number of threads about different people's experiences with FFC in various parts of the country. I decided to go after reading about it here. They don't take insurance for the FFC part, but all the labs are covered by most insurances. Just do a search on FFC and you will get all kinds of info about the blood work.

    Wishing you the best!

    Francie
  5. Fudge43

    Fudge43 New Member

    Naturebaby.. I see you are in Ottawa .. I'm in Kingston .. and I just replied to some one in Belleville .. I'm amazed to find people close to the area on such a diverse forum.
    I just joined yesterday and I have been scribbling notes about medications and supplements ( I've had this diagnosed for 4 years ) .. your question about possible hypothyroid is VERY valid .. that was what started the whole mess for me .. I think a lot of us have a thyroid problem along with the fibro .. then this MVP ( leaking heart valve)thing shows up .. I very much doubt that anyone with fibro JUST has THAT .. overlapping conditions are so common ! In any case .. I'm very glad to hear other women's stories .. and that none of us are alone in this misery !
  6. mjgkennedy

    mjgkennedy New Member

    Hope you get the help and support I have got on this Board.

    I found Elavil great for helping with sleeping as I suffered with Insomnia and Restless Legs.

    Hope you get something to help with your sleeping. There is a new medication out now called Lunesta which might help.

    Mary
  7. elsa

    elsa New Member



    Your research sounds right on the money. What will be
    difficult is locating a doctor who understands these tests as they relate to CFS/FM patients. The tests ( especially
    the hormone tests ) need to be much more sensitive then what is normally run. Also, doc needs to be comfortable treating "off" numbers or results ... not necessarily "diseased" results.

    Best example I can come up with is thyroid testing. The average blood test will reveal already known thyroid illnesses, but won't come close to showing thyroid problems in fibro patients. Need more specific and sesitive
    tests ....

    Many people are fortunate to find MD's up on the latest testing and comfortable with bio identicals, virals, etc.. FFC center's run alot of those type tests.
    Intigrated docs are good too.

    I'm sorry you feel bad .... you are obviously putting your"couch bound" time to positive use in researching and looking for ways to get better. Hang in there!

    Elsa
  8. orachel

    orachel New Member

    Hi there! I'm a newbie also. Only been diagnosed a month, but totally laid out and life completely halted for 3 mos now...Can't work, etc. This whole thing is driving me nuts!
    I've been doing a ton of research into fibro in last few mos, and I've found a few "clinics" nationally that advertise HUGE improvement in Fibro symptoms for most of their patients based on major extensive blood work which gets to the "root" cause of FM, which, according to them, can be different for everyone. They say can be as simple as a minor virus run crazy in body, or mitochondrial defect....lots of proposed causes. This gave me MAJOR cause for hope until I spent about an hour on phone with one of these clinics. First of all, they don't bill to (and aren't covered by) insurance. Average visit is $175-350, plus supplements and IV treatments.
    My docs (all 4 of them!) say this is bunk, but I keep holding out some hope, since this whole unexpected illness has thrown me for a huge loop (i'm only 30, newlywed...now can't work and my wonderful husband isn't quite understanding how FM works...think at this point he truly believes is depression based. Sheesh!). I'd be willing to try just about anything at this point, since my docs say my case is severe and that I'd be lucky to see 30-40% improvement if we find just the right medications over a number of years, but quite frankly, I'm still fighting my employer to get ST disability benefits, and doc bills are already piling up. Wow. Sorry to be so long winded. Anyway, I'd do it if I had the money, at least to see the "results" of this major bloodwork, but have been told it can cost upwards of 1000 per month...Very interested to see if anyone has actually gone thru this, and what were the results?
  9. elsa

    elsa New Member


    I think you are talking about the Fibromyalgia and Fatigue Centers. You can put them in the search and read about all of the postings. You might try "FFC" too.

    I'm not a patient there, but I am lucky to have a couple of doctors that work with me as partners and we generally have gone down the same treatment route.

    Many hold that CFS/FM disrupts several systems. If you can address the immune function, hypothalamus-adrenal-pituitary axis (whole host of hormones), sleep disorder,
    and vitamin and mineral deficiencies (we are notorious for
    having too low amounts of magnesium and b-complex,i.e.),
    then you stand a good chance of reaching remission and greatly improved quality of life.

    Life style and diet adjustments are pretty much a given.
    Added therapies such as massage and yoga type stretching can help too.

    The challenge is finding doctors who are knowledgable in the needs of CFS/FM patients. Many don't know or keep up with the latest treatment options or don't have time to review them. Also, many MD's just don't hold with supplementation. Once you find a doctor willing and able, they are worth gold to you.

    Like I mentioned, I'm not an FFC patient but I have learned alot about them. Your finacial info is not quite hitting the mark. They don't file or submit insurance claims on your behalf, but the do give you the forms to submit on your own. Many have gotten good reimbursement %
    for the office visits.

    The lab that does all the blood work does file for you on site, so there is no out of pocket costs there. Supplements can be purchased anywhere. They don't care where you get it, just hopeful that you do.

    The FFC also has a couple of payment options ... one I believe is interest free 6 months, so it's not as aggressive as you may have thought.

    I hope you find other doctors to help you. If I was told when diagnosed that I only had a 30% chance of improving and that it would take years and many, many rx'es, I'm not sure I would have made it out of there.

    I still work in a high energy, physical field and still
    ride my horses. I am not where I want to be yet, but my life is a far cry from 30%.

    I hope you are feeling well today,

    Peace,

    Elsa


    [This Message was Edited on 09/10/2005]
  10. elsa

    elsa New Member