New here, confused and hurting

Discussion in 'Fibromyalgia Main Forum' started by JaneG, Dec 9, 2002.

  1. JaneG

    JaneG New Member

    Hi - just found this site today and need all the help and advice I can get!!
    Diagnosed about a year ago with fibromyalgia after complaining to my rheumotologist that I was always so tired, had continous headache, and some days could barely lift my legs. He put me on Effexor XR - was already on Vioox - and told me to keep active.
    Then about a year ago, I had a total hysterectomy, and 6 months ago had bilateral partial knee replacements and I am going downhill ever since.!
    I can't fall asleep or stay asleep, not that it matters how much I sleep because I'm never rested - have continual headache, extreme pain in my shoulders and neck, sometimes my chest aches and feels sooo tight, sometimes I get sharp pains down both arms, have some tingling in my hands and a general weakness in my arms ( feels like they just flop and are hard to control) and now I get weird black spots in my eyes - they usually go away but are a nuisance!!
    Ok - so this past week I visited the dr. - only saw the nurse practioneer who changed my meds - dc'd the Effexor and put me on Amitripline at bedtime and put me on a muscle relaxer 3x day called Skelaxin and told me that the best thing I could do is exercise and keep active.
    I hate to complain but this whole thing is really getting to me - how do you exercise when you are so tired you can hardly move? What am I doing wrong and what should I do next? What do I need to ask or TELL the doctor to get more help? Here it is Christmas and I usually have all my shopping done, tons of cookies made, and outside decorations up - and that was when I was working 50 hours a week - now I'm home, broke, and getting none of it done! Please - any advice would be greatly appreciated!!
  2. JaneG

    JaneG New Member

    Hi - just found this site today and need all the help and advice I can get!!
    Diagnosed about a year ago with fibromyalgia after complaining to my rheumotologist that I was always so tired, had continous headache, and some days could barely lift my legs. He put me on Effexor XR - was already on Vioox - and told me to keep active.
    Then about a year ago, I had a total hysterectomy, and 6 months ago had bilateral partial knee replacements and I am going downhill ever since.!
    I can't fall asleep or stay asleep, not that it matters how much I sleep because I'm never rested - have continual headache, extreme pain in my shoulders and neck, sometimes my chest aches and feels sooo tight, sometimes I get sharp pains down both arms, have some tingling in my hands and a general weakness in my arms ( feels like they just flop and are hard to control) and now I get weird black spots in my eyes - they usually go away but are a nuisance!!
    Ok - so this past week I visited the dr. - only saw the nurse practioneer who changed my meds - dc'd the Effexor and put me on Amitripline at bedtime and put me on a muscle relaxer 3x day called Skelaxin and told me that the best thing I could do is exercise and keep active.
    I hate to complain but this whole thing is really getting to me - how do you exercise when you are so tired you can hardly move? What am I doing wrong and what should I do next? What do I need to ask or TELL the doctor to get more help? Here it is Christmas and I usually have all my shopping done, tons of cookies made, and outside decorations up - and that was when I was working 50 hours a week - now I'm home, broke, and getting none of it done! Please - any advice would be greatly appreciated!!
  3. catgal

    catgal New Member

    Hi JaneG~~I am so sorry for all you are going through and how difficult it has been for you. But, I know how you feel as well as the others here on the Board.

    I am 53, have had FM/CFS for 35 years, severe asthma since birth, allergies/sinus problems all my life, psoriasis, osteo & rheumatoid arthritis, IBS, and degenerative disc disease (ddd). I work part-time 3 days a week, and it is all I can do to drag my tired and aching self to work. But, I am my sole financial support.

    It sounds to me that your health providers aren't listening to you or don't want to, and that you are not receiving the appropriate medications for your condition--or else you would be feeling somewhat better. I could never get any help from the medical community for my FM/CFS. I did see a rheumatologist for 3 years, and all he gave me was antidepressants and flexeril. I was allergic to the flexeril and had bad reactions to the antidepressants which didn't help anyway. I quit seeing him. I continued to suffer every minute out of every day & night. Sleep was fitful. Laying on any part of my body for any length of time made that area hurt. I tossed & turned all night long waking up several times throughout the night and often unable to get back to sleep. In the mornings as I forced myself to get ready for work, I felt like a herd of elephants had ran over me--twice. Then in 1993, I just could not work full time anymore. I got my present job working three days a week. After my hysterectomy, I developed osteo & rheumatoid arthritis. They gave me vioxx which cramped my stomach and caused internal bleeding. Then celebrex which does absolutely nothing for me. Then last year, I had an MRI and was diagnosed with advanced degenerative disc disease (ddd). I saw an orthopedist who just told me I had a bad back, tough luck, put me on physical therapy, and told me to take the celebrex. Nothing worked. I quit seeing him. I was in so much pain that I couldn't put my socks on, pull up my pants, work, or function. Finally, I found a physician 34 miles from where I live that was willing to help me. He started me on narcotic pain management, and once we got my pain & sleep under control, I was able to go back to work, to function within reason, and to take care of myself.

    There are many different avenues of care you can try. Every body on the Board has their own regime of what works for them. Some use herbs, vitamins, and natural products while others use narcotics and conventional medicines. But most importantly, you have to find a health provider that is willing to listen and work with you. I had to go through several before I finally found one that would help me.

    I'm sure some others on the Board will be along to welcome you and tell you what they are doing and offer suggestions. Remember to stay in charge of your health care and don't allow medical providers to run your life. You are the ONE who has to live inside your body--not them.

    And as far as doing the things you used to do--all of us have had to make adjustments in that part of our lives. You learn to plan ahead, do a little at a time, rest, do the best you can, and don't upset yourself about what's left undone. As time goes by and with experience, you'll learn how to balance your health with rest & chores. The hardest thing for me was "acceptance". I was a workaholic, a perfectionist, and a go-getter many years ago. All that changed drastically. Now, I work, do a little around the house here & there, rest, do a little more. When a flare hits, I just rest and take care of myself--everything else gets put on hold. And to my surprise~~it's all still there waiting for me when I am more able to do it.

    Take care of yourself and keep coming back to the Board. It's a wonderful support group from caring, understanding, knowledgeable people. Best Wishes, Carol....
  4. AnitaQuiles

    AnitaQuiles New Member

    Hi...I almost cried when I read your message, it is almost the same situation I am in. I am in pain most of the day too. I have tried so many different prescription drugs that I cannot remember most of the names, but the best one that has worked for me, up to now, after 6 years of grueling pain is Ultracet. It was given to me at the hospital recently when I went with severe costochondritis pain. This condition by the way, is a chest wall pain, it does not let you breath properly, it causes your arm sometimes to tingle, and it hurts severely, mine is in the left side, so they always send me to the ER thinking I am having heart problems.(thankfully I do not).
    A year ago I went away on vacation and at that time I was taking Lortab, that drug is a narcotic, but let me tell you I felt 100% great! But my doctor said he wanted me to try something else, so I have been on Vioxx, Celebrex, Ultram, and others. But Ultracet (combination of Ultram and acetaminophen) and also Lortab to me are the best. I do not take Lortab now. ALso getting a good nite sleep helps a lot. I take Xanax when needed. Most of these drugs cause drawsiness.
    I have now a hiatal hernia due to taking so many meds so I only take meds as needed if I cannot take the pain anymore. Applying heat has help me tremendously when the pain and iflammation flare up. I try to take walks as much as possible, but with chronic fatigue and arthritis in both feet is hard to do. I do feel better after I walk, but then I have NO energy left to do the house work....I have two children, a dog, and a husband. Someone has to do the work around here!
    Many people do not realize the pain we have to face daily. I lost my part-time job due to this illness, and my boss not being sensitive at all. I am now at home getting better and rethinking what my next step will be. I know I can still do something out there...but what? I am thankful for everyday I can get up from the bed. I had an episode where I was not able to get up for three days for no reason at all..my right let was stiff and inflammation set in. So I am thankful I can walk and see the daylight everyday.
    I will go now...I am so happy to have found this message board.
    aq