HUGE Improvement.Long but PLEASE READ!!!

Discussion in 'Fibromyalgia Main Forum' started by ScooterD, Dec 26, 2005.

  1. ScooterD

    ScooterD New Member

    I'm so excited to tell you all about my new doc and treatment!!
    I was dx'd with FM in 2000. Like a lot of you, I'm sure I have suffered since a young teen but after a VERY stressful 1999, I hit January 2000 crawling in pain. I live in western MN (near Fargo ND)so I explored and made appts with as many docs I could find to see what was going on with me. Finally, after 5 months, my hubby took me to the Mayo Clinic in Rochester. After a gazillion tests, it came down to FM. I had a sleep study and it showed I had arousal periods every 3 minutes during my sleep. *KEY info, keep reading....
    Reaching Stage 4 and all that stuff was fine but every 3 minutes my conscious would "kick in" from the pain/discomfort I experience. Bottom line is none of the doc's had much to say about it except to exercise, work on my posture, diet, and take Aleve. Oh, and my sleep should be helped by the antidepressants I was already taking for depression.
    A quick summary from that point until now: In the last five years, after tons more doc's visits around the region and trying so many medications for sleep, fatigue, pain, etc along with natural remedies, I progressively got worse. You name it I was probably on it at one time or another. Plus gave the nutrition aspect 3 years of eating right, vitamins, etc. Nothing helped at all. I hit bottom physically and emotionally this past August and ended up in the psychiatric hospital. I couldn't take it any more.
    Of course the three doc's there had completely different opinions on Fibro & treatment for chronic pain (I don't know why I thought that ongoing viewpoint diversity would be differenet there!). I had another sleep study and now I was experiencing arousals every 2 1/2 minutes. I was a walking zombie. I could barely get out of bed to go to the bathroom most days. The pain and fatigue were at their ultimate torture levels. My psychologist suggested I visit the chronic pain clnic at the "Sister Kenny Institute" in Minneapolis.
    FINALLY I have found a doctor, nurses, therapists that BELIEVE in this DD and have the most enthusiasm, desire and skill I've seen in these past years to actually help me!
    I won't go into all the details now because I want to share with you what seems so simple but NO ONE ever suggested: "fix" the sleep/fatigue FIRST. I really believe I was miserable and had NO luck with everything I tried because my brain/body was too fatigued to function properly on it's own, let alone "process" what I was putting into it. So first try was Trazadone - after 6 weeks it didn't help at all. Then my doc suggested Zanaflex (Tinazadine muscle relaxer) PLUS Flexerall (cyclobenzaprine muscle relaxer). I have taken zanaflex for years - and I tried flexerall for a few months so I wasn't too thrilled..EXCEPT, as he explained, taking the two TOGETHER has shown to be very effective in a significant amount of patients. He also confirmed my thoughts about pain meds/etc not working until the fatigue/sleepoing is improved. So I started with 8mg Zanaflex (some patients take up to 20mn) PLUS 2.5mg Cyclobenz. I felt a *little* better the next few days but nothing to get excited about. Still sleeping and in bed most of the day. Day four I kicked it up to 12mg and 5mg respectfully. That was 10 days ago and these last 10 days I cannot believe how much I've improved. My fatigue has improved at least 70%!!! I still have pains to deal with but it's a heck of a lot easier to do so when you aren't so dang tired! Plus I know will approach that my next visit.
    I know reality doesn't mean I won't relapse, the med's will stop being effective, etc etc but for now I'm on cloud nine! I'm going to just count my blessings and thank God that I'm getting days of relief I haven't experienced for years. I finally have enough energy, ambition, and all around ability to make a decent meal 3x's a day and get some things done. The hardest part has been pacing myself and allowing myself enough breaks and all those things we need to do with this DD no matter how good we feel.

    Whew! Sorry for the long ramblings on but if it helps just one of you get relief I would be elated. My New Years wish to all of you is to give you the strength and courage to focus solely on your sleep/fatigue treatment until you find relief.
    Thanks for reading Scooter.
  2. Jen102

    Jen102 New Member

    i am so glad to hear you have found one of your keys to getting better. Yeah!! Hope you can continue to improve. We are neighbors in the same state. I would be interested to hear more about Sister Kenny. Did they take you as you were--nearly bed bound, or did they demand you exercise and do different things you weren't able to at first? I haven't found any of these docs or programs to be willing to accept how ill I am, but make a bunch of demands which will leave me even lower than i am. Blessings to you. Glad for your progress. JEn102
  3. ScooterD

    ScooterD New Member


    They took me as I was without any "pre-requisites" except a referal faxed to them by my primary doc. They contacted me within 1 day to set up an appt. The doctor I'm seeing is really great and he did the original consult and will write my 'scrips suggested by the FM specialist (she's WONDERFUL) along with tackling my other problems unrelated to FM. The only negative is the specialist for fibro is about 2-3 months out on her available appts. However they do have a waiting list and will call if something should open sooner. Because it's a 4 hour drive for us, we requested at least a day notice if possible. What city do you live in? King cool to find a neighbor!! LOL The exercise, diet, etc is part of their program BUT the great thing is their first priority is to get you sleeping and your pain in control before they expect you to be able to do all that stuff. Soooo different from the Mayo and the dozens of other doc's I've seen! It's great!!
    I'm more than happy to answer any questions and always available to talk, listen, scream, etc if you should ever need.
    Thanks Jen
  4. Mamalovinit

    Mamalovinit New Member

    I am glad you are doing so much better. Maybe you'll be able to enjoy your dogs again.
    My doctors have never let me have a sleep study. I could and have slept 12 hrs straight and still wake up exhausted.
    M
  5. Kacjac

    Kacjac New Member

    Glad you found something that helps....I would be afraid to ask my Dr. for both, probably look at me crazy, and wonder why I was asking for 2 muscle relaxers, and i would also worry, that I'd be to groggy in the AM and couldn't wake up, I dunno. But I do need to find something for sleep.
    My rheumy thought that Zoloft would help, but it didn't, it caused a almost no libido to "really" become no libido! *sigh*
    Glad your better, that's wonderful!
    Hugz, Karen
  6. Jen102

    Jen102 New Member

    I would like to talk more, but maybe in a chat room. I am always cautious about putting private info (even my town) on the web. Hope i don't sound too parnoid. I haven't used the chat room yet, but would be willing to give it a try if you would wish to talk. We have a support group in our town of very nice people. If you aren't too far away, and aren't already involved in a group, maybe you could join, or if you are in a group, maybe we could get together for a joint event some time. I you wish to try to chat, let me know and I will look into how to do it. Thanks. Jen102