Shooting/burning/achy 12 years no relief no diagnosisPLEASE help

Discussion in 'Fibromyalgia Main Forum' started by Jeelzee, Jun 23, 2008.

  1. Jeelzee

    Jeelzee New Member

    For 12 years I've suffered from terrible shooting/burning/achy pains and sometimes numbness. I've had all the tests for MS and all come back negative. My symptoms all seem to be related to the quality & hours of sleep I get. Less sleep=intolerable pain to the point where I'd rather not live that day (no,I've never been suicidal) but it's just an awful existence. I'm 33 and have been to rhum dr who says it's fibro, but I don't have any trigger or tender points. All neurologists say don't know what it is. Physiatrist says need to exercise more. I've tried, paxil/elavil combo, lyrica, neurontin, ambien, lunesta, tramadol, trazadon and nothing works.The only med that helps me sleep is xanax which I know can be addictive, but it's the only thing that helps me fall back asleep.

    I've been tested for Lyme which is always negative, but I've heard that there's a more specific test but my neurologist doesn't know what that test would be. Do you? At this point I'm so desperate. I was also diagnosed with Interstitial Cystitis (IC) of bladder 10 years ago and and have to pee all the time, but I've never had any pain with it. Last year a new urologist did a distention of my bladder and she sees no evidence of IC. I tried at least 3 drugs to help with frequency and nothing helped. I'm am so desperate and am losing hope. I’ve also been tested for vit B1,B12, D deficiency. I was low and not take supplements but still no relief.

    I also had 2 miscarriages in 4 months last year which OBGYN said would have nothing to do with my other medical symptoms. I'm almost 34 and want so much to be a mother, but no that I could never do it with the bizarre condition that I have b/c the only way I'm able to make it thru the pain is by getting sleep. And baby=not much sleep and I would be in so much pain. I feel like I am the only one of the 6 billion humans on earth with my symptoms and I am so tired and at my wits end of 12 years of suffering with no help. My neurologist is now suggesting gabatril. Does anyone have a similar story who can help me get some help. Please, I am so desperate and sad.
  2. CarolK

    CarolK New Member

    Sorry to hear that you are having such a difficult time controling your pain. I think we all know what that is like here on this board!!

    Has any of your doctors recommended diabetes testing? I know that diabetes can have similar pain symptoms like you refer shooting, burning and stabbing pain. Also frequency of urination is a sign of diabetes.

    I don't mean to scare you with this... but do a web search on diabetic symptoms and see how many of them you have. Also find out if you are in the "pre-diabetic" catagory.

    Do you have any children now? Are you currently trying to become pregnant for the first time? You should definately take all your symptoms, medications and health issues into consideration before attempting another pregnancy. But never loose hope!! Many on this board have worked through this darn disease and had children.

    I've had two miscarriages myself... but went on to have four beautiful babies! I wish you well and pray that you get answers to your questions soon.

    Blessings and hugs... CarolK
  3. doloresf1

    doloresf1 New Member

    Hi There.

    I know that there are many of us here on the board who were sick with our symptoms for many years before we got a diagnosis and treatment. So, don't give up.

    Are you under the care of a rheumatologist right now? I believe your first step is to find a good doctor. If that doctor thinks you have fibromyalgia, then he/she needs to develop a treatment plan for you that works. That's the first thing.

    Also, if you are concerned about Lyme disease, I'd encourage you to post on the Lyme board here at ProHealth and ask the question about the test that is accurate. There are many good and helpful on that board. They will be glad to help you.

    I'm wishing you the best.

  4. sunflowergirl

    sunflowergirl Active Member

    about my childrens' ages.

    Having to deal with the pain of FM is really hard, and also trying to get PG. Has your obgyn talked about endometriosis? It is very commonly associated with FM.

    I've had endo so it came as no surprise to end up with FM. I'm over all of that at almost 64, but I know what you're going thru.

    I'm going to suggest (seriously) that you start on a walking program in the early evening. Try to stick with this for at least 2 weeks and see how you feel after that time. We really do need the continual exercise of our muscles. When we don't use them they freeze up and give us more pain.

    Please try this and let us know in 2 weeks how you're doing.
  5. PatDLT

    PatDLT New Member

    I have had those symptoms for years. I know that before I was diagnosed with FM, I was having a lot of problems to the point I thought I was having a heart attack. It hurt everywhere. For some reason my doctor suggested I have a sleep study. It turned out that I have severe sleep apnea. I don't have rem sleep which usually restores your body. I use a CPAP machine to breath at night and it did help. I still get the pain when I have the flare ups, but I'm managing it better. Keep asking your doctor and tell him all of your symptoms. I hope you get relief.

    Take care.
  6. annade

    annade New Member

    Hi Jeelzee,

    I have several of the symptoms you have (see my profile) and was dx'd with fibro six months ago. I also had a lot of difficulty with maintianing my pregnancies. Three miscarriages, but one healthy seven year old boy. I saw a perinatologist after my second miscarriage and he ran several tests, determined that I was low in progresterone and suggested I take progesterone suppositories for the first 14 wks of pregnancy. That was the only pregnancy that resulted in a live birth (although he was 6 wks premature, but healthy and just fine).

    Sleep in a major issue for me as well and the only thing that has helped me get to sleep and stay asleep is Klonopin. I am able to get 8-10 hours of sleep a night. You might want to try this.

    Hang in there and write back if you have any other questions. We are here to help each other.