New here too, and recently diagnosed

Discussion in 'Fibromyalgia Main Forum' started by karen55, Oct 18, 2002.

  1. karen55

    karen55 New Member

    Hi, I'm new here too. This is my first time on an FMS message board. I was just recently diagnosed and I've been looking around for support and info. For several years I've had almost constant pain in all of my joints and bones which has pretty much steadily gotten worse. It almost feels like my body has a toothache. Sometimes in any given area it will hit me so intensely it takes my breath away. My PC ran a lot of tests 2 years ago for lupus, RA, Epstein-Barre, ordered Xrays, bone scans, bone density tests. She told me I had "a little osteo-arthritis". Right after that is when I had back surgery for a ruptured disk - my 2nd one - and I've had PT a few times since then. My neurosurgeon refused to prescribe pain medication for me after 2 months and pretty much told me my pain was in my head, so I started seeing a DO. I've been seeing him ever since, and he just repeated the blood tests for RA and lupus and they were again negative. He also put me through nerve conduction tests and EMG and I have carpal tunnel syndrome too. I just saw my PC again and brought her up to speed on everything the DO is doing/saying and she pretty much rolled her eyes at the FMS diagnosis, ordered repeat bone scans/bone density tests.
    I've tried pretty much everything I can think of, or has been suggested to me; eliminating certain things from my diet, coral calcium (HUGE mistake, I am allergic to shellfish and this did not agree with me), heat, cold, exercising, meds. I've always been active, and the last 8-10 months the pain has prevented me from exercising on a regular basis, so now I'm going to try Pilates or Yoga, hopefully I'll find something that will help.
    As for meds, my DO has me on Zanaflex at night and just added Elavil, because I haven't slept for more than 3 hours at a time in a few years. Some nights it helps me sleep and the days that follow those nights, my pain level is down. I'm also on Bextra, but I don't notice any improvement from that. I take muscle relaxers early in the day, and Lortab for the pain. On a good day I will only need it 1-2 times, but more often than not, I take it 4 times a day. It doesn't end the pain, but it takes the edge off of it. I work full time and may even have to get a 2nd P/T job.
    I'm hesitant to talk about the pain I experience because I'm so afraid people will just think it's in my head. I have also found that people tend to look down on you when you are constantly taking meds. I'm hoping to find some valuable information or suggestions here, and at the very least a place where I can vent about this and be understood.
  2. karen55

    karen55 New Member

    Hi, I'm new here too. This is my first time on an FMS message board. I was just recently diagnosed and I've been looking around for support and info. For several years I've had almost constant pain in all of my joints and bones which has pretty much steadily gotten worse. It almost feels like my body has a toothache. Sometimes in any given area it will hit me so intensely it takes my breath away. My PC ran a lot of tests 2 years ago for lupus, RA, Epstein-Barre, ordered Xrays, bone scans, bone density tests. She told me I had "a little osteo-arthritis". Right after that is when I had back surgery for a ruptured disk - my 2nd one - and I've had PT a few times since then. My neurosurgeon refused to prescribe pain medication for me after 2 months and pretty much told me my pain was in my head, so I started seeing a DO. I've been seeing him ever since, and he just repeated the blood tests for RA and lupus and they were again negative. He also put me through nerve conduction tests and EMG and I have carpal tunnel syndrome too. I just saw my PC again and brought her up to speed on everything the DO is doing/saying and she pretty much rolled her eyes at the FMS diagnosis, ordered repeat bone scans/bone density tests.
    I've tried pretty much everything I can think of, or has been suggested to me; eliminating certain things from my diet, coral calcium (HUGE mistake, I am allergic to shellfish and this did not agree with me), heat, cold, exercising, meds. I've always been active, and the last 8-10 months the pain has prevented me from exercising on a regular basis, so now I'm going to try Pilates or Yoga, hopefully I'll find something that will help.
    As for meds, my DO has me on Zanaflex at night and just added Elavil, because I haven't slept for more than 3 hours at a time in a few years. Some nights it helps me sleep and the days that follow those nights, my pain level is down. I'm also on Bextra, but I don't notice any improvement from that. I take muscle relaxers early in the day, and Lortab for the pain. On a good day I will only need it 1-2 times, but more often than not, I take it 4 times a day. It doesn't end the pain, but it takes the edge off of it. I work full time and may even have to get a 2nd P/T job.
    I'm hesitant to talk about the pain I experience because I'm so afraid people will just think it's in my head. I have also found that people tend to look down on you when you are constantly taking meds. I'm hoping to find some valuable information or suggestions here, and at the very least a place where I can vent about this and be understood.
  3. cofinny

    cofinny New Member

    I would like to visit with you my e.mail is cofinny@cs.com....my name is Nancy
  4. latracy

    latracy New Member

    I am 40 and was diagnosed two years ago. I have gone through and am still going though many tests. All seem to come up negative or within the range. But I know that somethings is not right, it is just hard to prove this to others without proof . Elavil worked great to help me sleep, and with more sleep, my pain decreased. The down side is that elavil make me crave sweets and I gained weight. Now I'm on zoloft. It doesn't help me sleep as well, but I don't crave the sweets. I also am having problems with my eyes, a tooth that I have had two root canals on, severe allegies , multiple sensitivity to everything and headaches. I now have a new doctor who has FM, and she has ordered strange and unusual tests. She understood my problems, and it was great. She told me to find a chiropractor, and this has helped. Keep reading the other post. I have learned so much from the others.
  5. fibolady

    fibolady New Member

    welcome to the board. we do understand, see my post what stresses me this morning. i have had this dd forever and still get the very same reactions, even from family.

    it is frustrating to say the least. i never knew people who battled an illness had to deal with the "stress" of having the illness, its insane!

    warm regards, fibolady
  6. karen55

    karen55 New Member

    My sister told me that sugar can actually contribute to joint pains, has anyone else ever heard this? I tried to eliminate sugar from my diet in hopes it would help. I spent a few weeks reading every label at the grocery store, what a pain! I did notice that without a lot of sugar I had more energy and my thoughts were clearer, but I did not notice any improvement in pain. I haven't noticed the Elavil causing cravings for sugar; I've taken this med in the past, both times I had back surgery.
    Latracy, what kinds of tests is your doctor ordering?
  7. ATlike

    ATlike New Member

    I am also new to FM and the board. I have been reading everything I can and they say to elimate as much sugar as you can which I have for the last month and I feel as you do. I also take elavil and do not have sugar cravings. I do have more energy and feel better, however I still have alot of pain. I was taking bextra and that helped me, but it was to expensive for me. I have now found a chipper place to get it and I am just waiting in pain for it to get here. I was very supprised how much Bextra helped me. I have also been in pain constant pain for the last two years. First in my legs now all over.
  8. karen2002

    karen2002 New Member

    I'm a Karen, too :) ---and fairly new to the board. I just wanted to pop in and say "hello". This is a place where you can actually talk about how you feel. I know what you mean about being hesitant to share with others, in your life. When they ask how you are, today, I am convinced they don't really want to know--lol.
    Nice too meet you!
    Karen