FINALLY! 70% consistant relief

Discussion in 'Fibromyalgia Main Forum' started by GWS_Steve, Jan 5, 2003.

  1. GWS_Steve

    GWS_Steve New Member


    when I was first seen by a doctor in a rheumatology clinic for diverse joint stiffness and pain, I was given ibuprophen aqnd muscle relaxers. after several months of this and getting only worse, we changed to Darvon and muscle relaxers. After about a year of suffering with no relief, I was diagnosed with a musculo-skelator disorder and xrayed and MRIed, alltests were negative or inconclusive. By the end of trying to deal with the condition, my DOCTORS had be taking oxycodone, sustained release morphine sulfate and sublingual morphine sulfate for pain and lorazapam and klonipin for sleep. This treatment essentially turned me into a zombie with no relief of the pain and bad sleep, if any, every night. I was not able to function at work, home or anywhere. I had no clearity of thought and still had the pain. The morphine just made it so I didn't care.

    THEN a wonderful thing happened to me. I was sent to a nurse practitioner for meds follow-up because the doctors had given up and didn't want to waste their time with me anymore. This nurse practioner almost immediately recognized the deficiencies in my sleep pattern as a root cause and not a side effect. We corrected the sleep problem with Ambien 10mg combined with 400mg of Neurontin taken right before bed. This combination allowed me to sleep 6-7 hours of restful sleep and wake up with virtually no stiffness and better mobility. In order to assure that I was tired every night so I would sleep, she also gave me 300mg of Provigile, a stimulant for narcoleptics first thing in the morning. The improvement was profound but I still needed large amounts of narcotic pain killers during the day and they weren't even able to get rid of the pain.

    Then a couple of months ago, she asked how I was doing and I told her about the daily pain. She suggested that we try the Neurontin during the day in smaller doses to minimize the drousy side effect. Within two weeks of taking the neurontin daily (100mg twice a day)the pain was diminished by about 50%. I have since increased to 300mg twice a day and 400mg at bedtime of the neurontin. Along with that I take 300mg of Provigil first thing in the morning and 10mg of Ambien at bedtime. This treatment has allowed me to consistantly get 6-7 hours of restful sleep each night and wake up refreshed without stiffness and only minimal pain. I now do not get as tired during the day and have a greater clarity of mind.
    This process has demonstrated that the pain I was experiencing was neurologic pain (pain actually produced by the nerves themselves) and not muscle, joint capsule or soft tissue pain. It also demonstrated the need to establish a normal regenerative restful sleep pattern to help isolate what is being caused by lack of sleep and what is being caused by the nervous system, whether its from nerve damage (as in my case) or by an autoimmune disorder as with most patients.

    I AM NOW DIAGNOSED WITH FIBROMYALGIA AND PERIPHERAL NEUROPATHY.

    THE HORRIBLE SUFFERING IS OVER FOR ME, ALL IT TOOK WAS ONE HEALTH CARE PROFESSIONAL WITH COMPASSION AND NO PRECONCIEVED IDEAS ABOUT FIBROMYALGIA. THAT AND A LITTLE DEDUCTIVE WORK THAT IF MORPHINE DOESN'T GET RID OF THE PAIN, IT MUST NOT BE CAUSED BY WHATEVER THE MORPHINE WORKS ON. I NO LONGER TAKE ANY NARCOTICS AND THE MEDS I DO TAKE ARE NOT HABIT FORMING AND HAVE VERY MINIMAL SIDE EFFECTS IF ANY

    PLUS I FEEL BETTER THAN I HAVE IN TEN YEARS, I ACTUALLY WANT TO GO OUT AND DO THINGS AGAIN.
  2. Shirl

    Shirl New Member

    Hi Steve, welcome to the board. Glad to hear you finally found the proper meds to help you. That is great.

    Unfortunately I am allergic to most meds, so I have gone the supplement, herds, vitamin route with Fibro.

    I am now 80% better than I was a year ago.

    The main reasoning for Fibro to me personally, is sleep.

    I have finally found a formula that no only helps me with deep sleep, but also helps with the pain.

    I take;

    0.25 milligrams of Xanax at 6pm (for racing brain activity)

    2 capsule of ZMA (zinc, magnesium, and B-6) for deep sleep, 7-8 hours as opposed to waking every hour on the hour (it also helps with the pain).

    1 3milligram of Melatonin to help fall asleep.

    This formula is a miracle to me. It has turned my life around.

    I also take Pro Energy (Malic Acid and Magnesium Glycinate)
    2 capsules twice a day for energy and pain.

    Most people with Fibro/CFS are deficient in magnesium. I average about 550-600 milligrams of magnesium daily. It has been a life saver.

    Glad you have join us, and I know many members will be interested in your testimony.

    Again, welcome to the board.

    Shalom, Shirl
  3. 1maqt

    1maqt New Member

    Was so excited to read your post!!! I just started neurnotin, ambien, and cipro; was already taking Doxepin for depression, and Soma for muscle relaxer...

    I haven't felt this good in 10 yrs. Have had FMS/ETC., for 28 yrs!I had been sleep deprived for months and unaable to function 85% of the time.

    Did the research and went to my Dr and she agreed to work with me.

    I am so happy for you, maybe we can change things for others
    since the oveerall knowledge is not prevelent to most Md's.

    The brain fog is lifting, but the dyslexia is hanging in there. I get so tired of people treating me like a mental case, because I found it hard to communicate at times.
    Our integrity is cchallenged at every turn, and no other desease has our particular Disadvantaage . We have had the invisaable desease for the last decade, and the new research looks so promising. 1maqt
  4. Rose123

    Rose123 New Member

    I just love these icons.

    Congratulations in finding the right cocktail to help your symptoms and get some sleep.

    I'll add my particular formula to the mix for folks trying to find their own best combo... it seems to vary so much from one individual to another.

    I take Protonix 40 mg in the morning, along with 600 mg guai. I had had really bad heartburn but the P. helped immediately, whew.

    In evenings, 600 mg guai, along with 100 mg neurontin and 10 mg Paxil to sleep well. This combo wiped out my insomnia; I'd been waking up 3-5 times per night and woke up feeling like I've never slept. Just being able to sleep well for, what 4-5 months now, what a blessing!

    I am something of a lightweight compared with some other folks who have serious afflictions beside the fms/cfs.
    [This Message was Edited on 01/06/2003]
  5. Kimba

    Kimba New Member

    Hi Steve,

    I am so happy for you. I also have nerve pain and keep it under control with neurontin and topamax. I am starting to get relief for my sleeping and am up to 5 hours a night. I also am no longer a walking zombie.

    I have also had a lot success in keeping my pain down with heat. I am getting better slowly, I have complications with my ankles but I can now take it one day at a time.