very discouraged and need advice please

Discussion in 'Fibromyalgia Main Forum' started by sharie, Apr 25, 2003.

  1. sharie

    sharie New Member

    I have been reading on this board for a few weeks and I am hoping that some of you can share your experiences with me going back to when you were diagnosed with this DD.

    I was diagnosed about 1 month ago with FM and my rheum. put me on vioxx and gave me darvocet. I also occasionally needed to take soma. It took about 2 weeks, but I actually felt like the old me again. Every once in a while I would get a subtle reminder of the pain, but nothing that concerned me. I vacationed with my family....been home for 2 days....and here I am, starting to feel all of the symptoms again.

    What I would like to know is, when everyone refers to the waxing and waning, is that what I am experiencing? Or is it possible to flare, get out of it and flare again so quickly? I am still trying to understand all of the terminology.

    Also I am wondering if vioxx is not the way to go, what is? I know that is a hard question but I am curios as to what drugs people start on from the begining. Thank you so much for taking time to read my message.

    Sharie
  2. jka

    jka New Member

    i have found any kind of traveling and a change in my enviroment makes me feel worse.even camping for 2-3 days does me in.we've pretty much given up on trips.flying is a real killer for me!so it could just be the trip.i've found soaking in a warm bath with 1 cup epson salt &peroxide helps make the pain back off for awhile.you might try that.
    hope this helps you.

    kathy c
  3. klutzo

    klutzo New Member

    Waxing and waning, flaring and remitting, whatever you call it, flares tend to happen with any change in routine, even if it's something fun like a trip. Change is stressful for your body. Try to routinize your life as much as possible, and keep changes in routine separated by several rest days if you can.
    Vioxx is not much help for Fibro. I think Klonopin is probably the best drug for Fibro, if you must take drugs. I cannot take Klonopin, so I take Xanax, which is in the same class but not as strong.
    I was put on Elavil first, and all it did was cause weight gain. After about 10 other antidepressants failed to help, I was given Xanax, which was a godsend. Xanax is very addictive, and produces dependency within two weeks, so it's a last resort.
    Supplements are necessary too, esp. Magnesium. You can do a search of previous posts here and come up with lots of info on the drugs and supplements that most of us are taking.
    Welcome to the Board. I know you'll get lots of help and support here,
    Klutzo
  4. Shirl

    Shirl New Member

    Hard question as we are all so different with the symptoms and what causes a flare (personally, I sometimes think that nothing we do causes a flare, they just happen!).

    As for myself, if I go shopping, and stay too long, I am out of it for the next couple of days. I don't go into a flare, but will be totally exausted and unable to do very much and will be achy all over.

    To give you an example; I never sit in the contour chair, today I thought I would try it again. Well I sat for about half and hour. When I got up, I had pain in my upper back so bad I had to go to bed for awhile on a heating pad. See what I mean? others here love their contour chairs, mine is a killer to me.

    Can't help with your meds, I only take Xanax at night, or if I know I am going to be in a stressful situation, take a long drive etc. It helps stop me from getting ill.

    What has helped me the most is 'Pro Energy'(Malic Acid and Magnesium Glycinate), and 'ZMA'(zinc, magnesium and vitamin B-6). The medical profession has admitted that most of us with FM/CFS are deficient in magnesium. I have not had a serious flare since starting the ZMA a year ago. Both these products are sold here at Pro Health, you can read about them on the 'Store' link.

    I would recommend that you read a wonderful book on Fibromyalgia, it will help you with all the terminology along with a better understanding of this illness. Here it is; 'Fibromyalgia & Chronic Myofascial Pain Syndrome (A Survival Manual)' by Devin Starlanyl, M.D.

    This lady is a doctor and has Fibro. Her books are wonderful.

    From what you are saying, I think you are just tired from the trip, not in a flare. If you were flaring, you would be in very serious pain.

    Hope this helped a little. I have had this illness now for over 20 years, and its still hard to explain myself!

    Shalom, Shirl

    [This Message was Edited on 04/25/2003]
  5. sharie

    sharie New Member

    That it is just the change in my routine. thank you so much for the input. I visited my mom in Florida with my husband and 2 kids so I relaxed for 8 days. It seems to make sense that coming home and caring for my kids would stress me out a little.

    Klutzo, can you tell me what kind of drug klonopin is? I try to research but being at home with the kids makes it difficult to spend to much time on line.
    Thanks also Shirl for the book recomendation. I have borrowed it from the library but I think a purchase is necessary. I'm also interested in a book that I saw coming out in may. I can't remember the title but it was something about the first year of diagnosis. Any info regarding that book would be helpful.
    Thanks for all of the info..
    Sharie
  6. Suzanne1961

    Suzanne1961 New Member

    Hi Shari,

    DO NOT DO XANAX, it's sooooooooooo very addictive, I had to go into detox for 14 days under 4 hour care with doctors and nurses, and I will be blunt but honest , withdrawals from XANAX is far more difficult than coming off of heroin !!!!
    Klonipin is in the same class as xanax , both are in the diazepam family which are both addictive, but klonipin is not as strong nor as addictive. I take effexor (anti-depressant) Soma (muscle relaxer for muscle spasms) Klonipin, the smallest dose only one tablet a day, only when neeed ) and the best thing I have in neurotin which is a seizure medication but it manages the pain for me pretty good because you can take pain meds everday for the rest of your life. And for my sleep I take trazadone, an older anti-depressant that makes me to be able to get to sleep and get that delta sleep that us fibro babies do not get. The best doctor to see is a pain management doctor that treats fibromyalgia, even better than a rheumatologist ! If you want to email me , please feel free Suzanne_bellsouth.net

    Good luck & Prayers,
    Suzanne <3
  7. layinglow

    layinglow New Member

    As mentioned in the other posts, flares, or a worsening of symptoms can be caused by many things. Overdoing seems to be on the top of the list for most. Any change is stressful. Stress is our adversary.

    Vioxx is good for inflammatory conditions, such as arthritis, but FM does not have inflammation. So it would not be a drug of choice unless you also had inflammatory conditions.

    Darvocet works well for some for mild to moderate pain.

    Everyone on here reacts differently to different treatments. Some use prescription meds, some use strictly natural herbs, supplements, and vitamins. Some do both. I fall into the category of doing both.

    The important criteria in finding a Doctor is not so much his specialty, but his expertise in these Disorders. They should have a large enough client base, past and present to be able to develop many individual treatment regimes. We all differ greatly. They should also stay atop of current research. You should feel as if they truly are concerned with your health, being your biggest advocate. They should listen attentively, and answer thoroughly.
    The Fibro CFS Specialist I finally found, is a D.O., and absolutely wonderful. I can get an appt. in a weeks time, and if an emergency, right away. I am very satisfied with the progress I have made. If you are happy with your doc's expertise and the treatment you are receiving, I would stay put.

    I do take klonopin. It is recommended by Dr. Chaney, a renowned specialist, you can view his articles in the library, here. Many FMS patients suffer from a mini-seizure state, bringing about sensory overload, restless leg syndrome, myclonic jerking and twitching, neuralgias,anxiety, and sleep disorders. I had all of the above, and have been on the Klonopin about 6 months, with wonderful results. We are all very different in our dosage needs. Alot of patients with FM and CFS are very sensitive to drugs, and find the recommended doses are too high, and must reduce doses. Some can take the recommended dose. Dr. Chaney, I believe recommends .5 mgs at bedtime. I am weird in that I am very drug resistant. I have to take 1mg. at nite, and take a dose during the day for sensory overload, anxiety, and jerking and twitching. We are all individuals.

    Less than 1% of chronic pain patients become addicted to their drugs. There is a common misconception regarding addiction with drug tolerance and dependence. Dependence arises as there are many drugs that we just cannot suddenly stop taking, but with physician support we can change to other drugs when ours begin to be less effective due to tolerance.

    We do have chronic pain, with no cure in sight, as of yet. I have come to the conclusion that I want my quality of life to be the best it can be. I will continue using my meds in the fashion and dosages my physician has prescribed. Through the therapy and treatment I am receiving, I have gone from completely bedridden, to having a much better quality of life, able to enjoy my family and new found hobbies.

    I am so glad that you decided to post, and look forward to getting to know you. Don't be discouraged....just make extra time for yourself right now to rest and recoup. Remember that removing stress, changing any lifestyle components that bring it about, diet and nutrition are very important to your health. It takes awhile to learn to pace yourself so you don't overdo, and push yourself.

    Best wishes, LL



    [This Message was Edited on 04/25/2003]
  8. sharie

    sharie New Member

    thanks again everyone for the responses....
    LL..I just wanted to ask about the supplements etc. Is there anyway of finding out what one may deficient in? I would also like to use as many natural supplements as possible. I also have lupus(for 16 years) and have been able to stay off of meds for about 10 years. The rhuem that I see has been my doc for 16 years so I fully trust his qualifications...but of course all new info that I receive can only help with my care. This new diagnosis has really thrown me since I already have a DD with no known cure...Can you also tell me what kind of doc a D.O. is. I live in New Jersey and am having a terrible time finding good doctors(I travel 2 hours for my Rhuem.)I know that you cannot post drs names but if anyone lives in this area I will give you my email address.

    Sharie
  9. AlaSnoopy

    AlaSnoopy New Member

    Hey Hon...The biggest thing is everyone is different, and everyone reacts differently! You can get ideas from boards, and you can get suggestions, but remember everyone is different! My sister and I both have the same parents and both have had fibro for years, yet we react totally differently to our medications! We even have different symptoms. She reacts worse to the heat and I react worse to the cold. If you are on a medication and it doesn't seem to be working call your doctor and tell him/her! That is the biggest thing! You can't be shy with the doctors,we pay them to work for us.