Discussion in 'Fibromyalgia Main Forum' started by Raven41, Jun 21, 2003.

  1. Raven41

    Raven41 New Member

    Hi All... I am new here. I was recently diagnosed with Chronic Fatique Syndrome/Fibromyalgia. I am still learning much about the conditions, but already knew a little since my sister has dealt with it for years. I don't know why it decided to hit me later in life, as I have been in great health for the past several year, but have suffered for year with migraine headaches. I started having worse headaches and a "bout" of mononucleosis had started at my son's school. At first, my doctor assumed that I had mono, because the symptoms were all there. However, months later it did not go away. I wake up in pain, spend a big majority of day in pain, and usually go to bed in pain. I have flu-like symptoms and I ache all over, from head to toe on most occasions.... but there are places on my arms and legs that hurt worse than other places and I always seem to have worse pain on the right side of my body, even in my head. After dealing with this for months, I finally told my doctor that I couldn't deal with it much longer. He ran some blood tests that are apparently non-routine, so I didn't realize that I had the Epstein Barr Virus in my bloodstream. He finally diagnosed me with the CFS, stating that I have all the symptoms and he has checked everything else out and it's not lupus, it's not rheumatoid arthritus and I still have a high titer for the Epstein Barr Virus that the lab flagged on my last panel of bloodwork. It's all I can do to get up in the mornings and to go to work and come home and do anything because of my energy level. The pain meds just make me more tired and exhausted. I am presently taking hydrocodone and phenergan (when I am nauseated). I also have taken Percocet and Mepergan (Demerol with phenergan) when the pain gets really bad. I just really hate to be dependent upon the meds, but it's about the only realistic way that I could make it through a day at work. Does this sound typical to anyone? If you have any tips that might make the pain less, I would love to hear anything/everything. At this point, I would try most anything for relief. I take 3, sometimes 4 baths per day.. because the heat seems to help. I take a heating pad to work, and I usually have it during the evenings when I am watching tv, working at the computer or sleeping in my bed. I'm sick of feeling so sick and tired. It's been a life altering experience for someone who has been generally healthy for many years. Thanks for letting me vent, didn't mean to write a novel. I hope to find some friends here that I can support as well as learn ways to cope with this terrible nightmare that I am dealing with.
  2. kar1953

    kar1953 New Member

    Welcome to our world! It's not the best place to be, but it sure could be worse!!

    The only things I can suggest besides what you are already doing is try Shirl's bath recipe. 3 large bottles of hydrogen peroxide & 3 cups of epsom salts in as hot of water as you can stand. Soak 20 min. This is very relaxing so is good to do right before bed.

    The other thing I use is Tiger Balm. Get the red - it's extra strength. Rub it on those sore spots. It really helps me. You can get it at any pharmacy.

    Also, some physical therapy might give you relief. Your doc can give you a Rx for it. If nothing else, the stretching exercises really help especially when you wake up in the morning feeling like you were run over by a mack truck. When that happens to me, I do the stretching before I even get out of bed.

    Good luck & keep us posted on your progress. Also, if you find anything that helps you, please post for the rest of us!

    Take care......Kathi
  3. Mikie

    Mikie Moderator

    Have you asked your doc about antiviral meds? I went into complete remission on them and have gone back on Famvir in hopes of its ridding my body of whatever Herpes-family virus is active in my body.

    Love, Mikie