Hi I'm new here. Just diagnosed w/ fibromyalgia.

Discussion in 'Fibromyalgia Main Forum' started by MaMaZ, Jul 26, 2006.

  1. MaMaZ

    MaMaZ New Member

    I am new to this board and new to fibromyalgia... been dealing with issues of pain for a few years and finally have been diagnosed... I have 14 of the 16 trigger points active right now. and Dr. is considering the Xyrem drug to help fight the pain. I've googled it and read about it and watched a DVD from the Dr.s office but was wondering if anyone here has an opinion on it. Is it effective? Worth the side effects? Thanks for the info. I am looking forward to getting further education on this illness from this board. So again thanks in advance ~MamaZ.
  2. Pianowoman

    Pianowoman New Member

    Welcome to the board. Getting a diagnosis is difficult but it can really help you to move forward. There is lots of inof on ths board and lots of caring people.

    I have not taken Zyrem but several on the board have. You can search posts at the top left of this page.

    All the best
    Kathy.
  3. Daisys

    Daisys Member

    I've been on Xyrem for almost 2 months and I do have a lot less pain than when I started taking it. It's gradually improved.
    Two weeks ago I started taking some natural herbs that are supposed to help with pain so I don't know how much credit goes to that. It's called EndFatigue Pain Formula.
    I also had a massage every week for awhile, and the tight, painful knots didn't resolve until I'd been on Xyrem for a month (give or take). Now every massage has more lasting effects, and I'm going every other week.
    Hope this helps with decision making.
  4. dimontel

    dimontel New Member

    I was diagnosed with Ankolosing Spondylitis 14 years ago(inflamation of the connective tissue)a rare type of arthritis especially for women, have been dealing with that but I have chronic pain in my elbows and forearm muscles and other body muscle tension that I've always attributed to my AS but you speak of trigger points? What are the actual symptoms or are they different on everybody? I think I may have enethesis (manifestation of the AS of the tendon and muscle tissue where they connect to the joint). I keep getting told I just have chronic tennis elbow but after 6 years and on going physical therapy? Please direct me to any internet sites you may know of so I can research this, much appreciated.
  5. NyroFan

    NyroFan New Member

    MamaZ:

    Welcome and if you want an education: stick around.You can use

    nyrofan
  6. lostmisty

    lostmisty New Member

    Mamaz, Welcome to the boards. :)
    Daisys: Xyrem sounds like some scary stuff. Can I ask what your dosage is? How many times you take it a day? Do you experience any of the side effects that Jazz Pharmaceuticals reports? It would be lovely to have one med that does the work of 4. :D

    ~Misty~
  7. Daisys

    Daisys Member

    All medicines scare me. (Read the warnings on a bottle of aspirin) Clearly, we need to respect the power in medicine.
    There's a lot of information here about xyrem. Use the search feature at the top of the page, and you'll learn a lot. Also, there's another site that discusses personal experiences with Xyrem: it's the Talk About Sleep site--look at the Narcolepsy, Insomnia, and FM forums where it's discussed extensively.
  8. smiffy79

    smiffy79 New Member

    hello and welcome to the board mamaz. everyone here is great and whether they can personally help or not theres always a friendly word :)

    looking forward to seeing you around :)
  9. MaMaZ

    MaMaZ New Member

    Thank you for responding so quickly. I did do a search on xyrem here as well as at the talk about sleep site. I can't tell you how much the info is appreciated. In may I went to my PCP and complained about being so tired and he refered to a cardi/pulmonary doc who specialty is sleep disorders. I seriously didnt think I had a sleep disorder but I went anyway. He spent two hours talking and examining me...did major lab work and also scheduled me for a sleep study in June. He also did the trigger point exam, which showed 16 active of the 18 sites. He said no doubt about fibromyalgia. The sleep study was to help determine if it could be caused by a possible sleep disorder. So in June I went for the study. To make a long story short... I found out I stop breathing 100 times and hour... each time waking up enough to start breathing again but never making it to the alpha stage of sleep or the restorative stage of sleep thus I am always exhausted! So I now am using a breathing machine... just a few points away from having to also oyxegen! So at this moment I am in my second month of using the machine and not quite use to it yet. still getting a lot of leakage on my mask and still very tired. I go back to the Sleep doc next Friday and at that point I am suppose to let him know if I want to try xyrem. I think I am going to try it. For the sleep as well as the pain relief. Although I am scared because it is really potent stuff. I know they start out with a really small dosage and work up to a stronger dose... they dont want to overdose and have you not wake up. The funny thing is I went back to my PCP and told him about the diagnosis of fibromyalgia and his response was "I don't put much faith in fibromyalgia diagnosis" and kind of gave me the brush off! So I am shopping for a NEW PCP!! He sure hasn't did anything but order expensive MRI's for the past two years and then said everything appears to be normal... maybe a little arthitis... meanwhile I still feel crappy. so I am done with him. I really like the sleep specialist though- he claims to be the doc who makes people feel better. Just knowing I am not a hypochondriac is satisfying! Now I want treatment. I want to feel better. I am also interesed in knowing more about which supplements are best for FMS. Sleep doc put me on Blood Nutrients... Iron, vitamin C etc. so I am on some.
    I am loving this board already!
    I think I'll stay! So let me introduce myself- I am Mary. I am in my mid forties. Married to a great man for almost 29 years. We have three grown daughters all married and all gave us grandbabies this past year. Thus the name MaMa Z. (It's better than "granny") Now I need to start feeling better so I can have some energy to play with them. I also work forty hours a week like most folks but what I am finding is that THAT takes all the energy I have and I am just crashing when I get home. instead of 46 I feel like I am 86! So thanks again! I look forward to becoming a part of this board. ~Mary Z
  10. Daisys

    Daisys Member

    I'd like to add one thing to what Hayley Cole said. The book From Fatigued to Fantastic is very helpful and the website of the same name (or Vitality101) also has a list of Dr.s who have trained in the protocol. I found a great doc from that list and am finally getting better! Hope you can find one in your area--they certainly take FM seriously and know what to do to help you.

    I'm not very computer savvy, and never introduced myself here. Just dived in with my 2 cent's worth! Guess I should post an intro. :)