Just diagnosed yesterday....

Discussion in 'Fibromyalgia Main Forum' started by Mare-T, Jan 15, 2003.

  1. Mare-T

    Mare-T New Member

    I was finally, after over a year of doctor visits, (four different drs.) and numerous tests have been diganosed with Fibromyalgia. The doc has started me on Trezodone(anyone tired that?). I have been on Celebrex, Bextra, Vioxx, Indomethicin, Ultracet and Vicodin. I'm hoping this new med will help. I have picked up two books from the library--one of them I swear is written in Latin (a lot of medical terms). Can anyone suggest a good, straight forward book about FM and how to live with it. My MIL had FM and said hers went away after 4 years. Does this typically happen? At this point I am relieved to finally get an answer since I was losing my mind. Each day it is a chore for me to get out of bed. I am 37 years old, married and have two boys, 8 & 4 and I'm tired (no pun intended) of telling them "Mommy is too tired to play catch, Mommy's arms, legs, back, hurts too much to lift & carry you..."I have been on Celexa for three years, when my mom became seriously ill and then passed a way in 2000. It was when she was diagnosed with cancer and then passed away 12 days after that I developed TMJ, then other ailments followed. Any advice, support, words of wisdom would be very much appreciated. Thanks for reading....
    Mare
  2. klutzo

    klutzo New Member

    Glad you found us, but sorry about your diagnosis.
    The best book I could recommend would be "Fibromyalgia and Chronic Myofascial Pain Syndrome - A Survival Manual" by Devin Starlanyl, M.D., a female doc who also has FMS. It is a huge book, and it isn't cheap, but it covers absolutely everything, and is worth every penny.
    I would bet good money that the friend who got "well" in 4 yrs. had CFS, not FMS. I have seen many CFS folks recover within 2-4 yrs. If they go past that point, they're usually stuck with it, just like us FMSers. Also, she could just be in a long remission. I know of someone on this Board who was in a 9 yr. remission, only to have the FMS come crashing back when a whole bunch of life stress hit her all at once. However, that long of a remission is exceedingly rare. I've had FMS for 17 yrs. and the longest remission I've had was 3 days! However, if I were you, I would definitely find out what this person did, if anything, to bring about this "cure", since it may be something we'd all like to know about! I have personally seen only two people "cured". One was cured by avoiding wheat and getting her tubes tied (she got FMS while pregnant), and the other was a man who was mis'dx'd, as he really had arthritis.
    Many of the drugs you were on before are anti-inflammatories, so it's no wonder they didn't help much, as FMS is not an inflammatory illness.
    Trazodone gave me a constant 24 hr. headache, but some others here have used it without troubles. I do suggest that you read Dr. Cheney's article in our library here about the long-term affects of taking these anti-depressants on the brain. I wish these docs would quit prescribing these as the first meds for FMS.
    If you can get your doc to consider trying Neurontin or Klonopin, I think you'd get better results, and help prevent the neurological problems that most of us develop after awhile. I speak as one who has had FMS for 17 yrs. At this point, the problems in my brain far exceed the pain and fatigue at messing up my life.
    You can also find articles on these and other subjects in our library (just click the "library" bar at the top of the page),and you can locate many previous posts by our members on these subjects by going to the "search previous posts" at the top of the Message Board page, and typing in the subject you are looking for.
    Glad to have you join us,
    Klutzo
    [This Message was Edited on 01/15/2003]
  3. pam_d

    pam_d New Member

    Welcome!! I am a HUGE fan of Devin Starlanyl's other book! Klutzo recommended her first book & it's great, but I'd also recommend her 2nd book, "The Fibromyalgia Advocate"---- in fact, they can be purchased together at Amazon for a discounted price. "The Advocate" is great for talking about how to actually live on a day-to-day basis with FM, how to interface with everyone in our lives, such as spouse, family, co-workers, friends, and there are great sections on how what all your doctors should know about FM, from your dentist to your therapist to your chiropractor to your gynecologist, etc.---so they can effectively treat the patient with FM. My dentist loved the section I xeroxed, he has several FM patients. There are sections about legal rights, letter to "normals" etc---my husband purchased this book for me, God bless him, when I first got FM, and it's dog-eared now from usage.

    Good luck, there are newer books out there & lots on naturopathic/alternative care---the good news is, lots more is being written about thid disease these days!

    Again, welcome--
    Pam
  4. Mare-T

    Mare-T New Member

    Thank you for your response, it gave me some other factors to consider. I plan to go look in the "library" after this reply. My mother-in-law who had FMS for 4 years had taken prednizone for it. She does have arthritis in her knees and possibly other places, this was in her shoulders where she could raise her arms but could not lower them. I have the opposite problem with it hurts to raise them, lift things, I can't even reach behind my head to scratch without horrible pain.
    I think the reason this doc put me on this med was to help me sleep at night because he mentioned that as something he wanted to tackle right away. I have noticed more and more my inability to stay focused, my comprehension and my short term memory are SHOT! That is so frustrating. I work in a law library and it is essential for me to retain things in my researches ugh! So one can only go into remission? Also, I'm doing the reading but what to I say, how to explain this syndrome to the average person in simple terms, straight forward without going into great detail. I am confused how to explain it. Is it a CNS problem, a rhuematic muscle problem...? Not sure how to go about it. Again, thanks for the response and I will probably have lots of questions for this message board in days to come.

    Mare
  5. Shirl

    Shirl New Member

    Hi Mare, welcome to our world! I agree with Klutzo and others who recommended Devin's books, I have all three and they are just wonderful.

    Can't help with the drugs, I take only supplements, herbs etc, the only prescription I take now is Xanax, once a day for 'racing brain' syndrome.

    Drugs made me more sick than I was to start with.

    I would recommend you get a 'wireless mattress heating pad', they are wonderful for the morning stiffness, and pain. Helps me get out of the bed without too much trouble.

    As for the 'cure' you mentioned, it is probably a remission. I have gone into remission twice, both times it lasted about a year or so. Then it came back with a vengence.

    In my opinion, if you can find a way to sleep deeply (stage 4 sleep), that is the beginning to at least have a more normal type of life with Fibro.

    Since I have found a way to sleep, I am 80% better than I was for when I first came on this board almost two years ago.

    If we can help in anyway, please just ask, we will be glad to share whatever we can.

    Again welcome to the board.

    Shalom, Shirl
  6. teach6

    teach6 New Member

    I agree about the books already mentioned. I think you will find you'll be wanting your own copy of these so it's probably worth the investment.

    As for something to explain what FM is there are free pamphlets available from this site. The top post on each page will take you there. You can order up to 99 at a time. Some people have passed them out to their docs and even put them in the offices for others to read.

    Barbara
  7. 1maqt

    1maqt New Member

    You will be so glad you found this site! The people here are very kind and helpful. There aare tons of info on this site, they have a Library section that gives you A-Z.

    It won't take you long to know your way around. I have had
    FMS for 28 yrs. The new info and treatments are amazing. It is good for you to do the research, for the simple raason that each case is different.

    Hope we can encourage you and help in any way.
    1maqt