New here, finally diagnosed with CFS & FM

Discussion in 'Fibromyalgia Main Forum' started by cammiegibson, Apr 14, 2003.

  1. cammiegibson

    cammiegibson New Member

    What medications help you. My worse symptom is being tired all the time. My doctor prescribed Effexor RX and provigil. I have only do the Effexor because my insurance won't pay for provigil for this diagnosis. I was hoping something would help. I am tired of being tired. 2.5 years of this crap. Funny..not so funny my 3 year old...I asked her to pick up her toys and she says ..."well, maybe I will feel like it later!". Sad but humorous. My doctor is willing to try just about anything. Dexadrene has been suggested but it scares me because it can be so addictive. This is so frustrating. I just want to feel alive again.

    Any and all help is welcome. My email is (don't let the email scare ya, I help victims and users of crack cocaine) I live in Grand Rapids, MI if anyone in my area would love to talk to you.


  2. layinglow

    layinglow New Member

    Hi and welcome to the board. Glad that you found us. Sorry to hear about your diagnosis, but do know that it is a relief having a name for your illness, now.
    I have FM and CFS, too. I cannot take any of the stimulating drugs, as I have many neural symptoms with these disorders, and have finally gotten many under control, thru meds, vitamins, and supps.
    I have had very good success with vitamin b12 for fatigue. I was unable to absorb it when administration was oral, and I have switched to injections.
    Co-Enzyme Q 10 has also been helpful.

    Best wishes,LL
  3. cammiegibson

    cammiegibson New Member

    For sharing.

  4. hpynes

    hpynes New Member

    Hi Camille,

    I am still trying to figure out what is wrong with me, I am always tired, my feet, ankles, calves, hands swell, I seem to be gaining weight and funny thing is I am eating next to nothing, lots of fruits, veggies, ect... I am exercising 3 times a week. My doc thinks maybe I have hypothyroidism, however my test all come back normal, so he said I have clinical hypothyroidism. He put me on a very small dose of Levyxol. After 3 months my blood was tested again and I am again normal.

    He changed me from Paxil to effexor because he thought the paxil was creating trouble with my sleep. Well... now that I have babbled, the effexor seemed to be working except for I was gaining ungodly amounts of weight. He weened me off the effexor, and let me tell you, that was pure Hell. The withdrawls are so bad, I would never recommend anyone taking this for anything. One news group I read, a lady desribed it as worse than having withdrawals from coming off speed.

    I hope everything works for you, but if I was you before you get to far with effexor, I would get off and ask the doctor if there is something else.

    Sorry for the lengthy message.
  5. Mikie

    Mikie Moderator

    Welcome to our board. I will tell you what has helped me most with FMS/CFIDS, but what works for one may not work for another.

    I take Klonopin to help with sleep, anxiety, pain, and sensory overload.

    I take Guaifenesin to reverse the symptoms of FMS and it has really helped, especially with the pain.

    I do physical therapy stretches and flexes which help with pain and keep my muscles flexible and strong.

    I take Doxycycline because of a chronic mycoplasma infection (60-70 percent of us have mycoplasma infections).

    I take the smallest dose of Synthroid even though my labs were normal; I had other symptoms of hypothyroidism.

    There are lots of other things I do and I take supplements as well, but these are my main treatments.

    This is a good place to learn all you can about your illnesses. That will help empower you when dealing with docs.

    Love, Mikie
  6. cammiegibson

    cammiegibson New Member

    For sharing and the info.

  7. Shirl

    Shirl New Member

    Glad you both found our board, and I hope we are able to help both of you with these terrble illnesses.

    Just stopped to welcome you.

    Shalom, Shirl