Nothing helps my pain

Discussion in 'Fibromyalgia Main Forum' started by dakotasweett, Aug 17, 2005.

  1. dakotasweett

    dakotasweett New Member

    Hi I am brand new here but really need some support from someone who might understand what I am going through. I have found absolutely nothing that helps alleviate my FM pain which I have had for 5 years. The pain seems to be worsening and is interfering with my life more and more which is incredibly frustrating since I am only 23 years old. I have tried OTC and prescription pain meds, heat, cold, topical creams, antidepressants and many other things. My doctor is wonderful and keeps trying new things, but nothing has even slightly helped. I am not really looking for advice on what to try...I just wanted to see if anyone else out there is having the same problem.

    Thanks in advance,
    Vanessa[This Message was Edited on 08/17/2005]
  2. JLH

    JLH New Member

    First of all, WELCOME to our board/support group. There are so many knowledgeable people here that are willing to help. You'll see!

    There are many, many people here who also have found nothing to help alleviate their fibro pain. The pain and fatigue, as well as other fibro-related symptoms, definitely interfers with one's life. It's hard on a younger person as well as those who are a little older with small children to care for, those who are working full-time, those whose children are raised, as well as those who are retired and the elderly. It takes its toll on EVERYBODY!

    I know you stated that you are not really looking for advice on what to try, but maybe trying something different than what you already have may be the key to you feeling better!

    That said, I want to ask you if you have ever tried the new A-D, Cymbalta? It helps on fibro pain, as well as Neurotin.
    Both are good meds. Also the muscle relaxer, Zanaflex, to take a bedtime--it helps you sleep much better.

    Yes, unfortunately, most of us are also having the same problems as you are!

    Hope you find something that helps you,

    (((Hugs)))
    Janet

    P.S. I also love hot, hot showers to help relax my muscles and rid me of some pain. I also sit with a heating pad on my low back while I watch TV.
    [This Message was Edited on 08/17/2005]
  3. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    That must be terrible, NO PAIN RELIEF. I can't relate, because I'm fortunate tht codeine or endocet (milder than Percocet) gives me much relief to function.

    But I can still relate to the frustration and occasional despair of wakingup to pain, day after day, year after year. You are young though, and it just might be slightly possible you haven't heard it all and done it all quite yet. I keep hearing of new things on this board, that doctor after doctor never mentioned or thought to try for fibro, because I'm always looking for good alternatives to narcotics.

    Have you tried Lidoderm patches. Never heard of them till yesterday, but I'll be asking my doctor to try them. They are usually used for shingles and are like topical novocaine and someone is getting much help w/ them.


    Jeanne
  4. dakotasweett

    dakotasweett New Member

    Thank you all for your responses. I have tried a long list of antidepressants, including Cymbalta, which I am currently on and have not noticed a difference. I have tried Vicodin, Percocet, Darvocet, Tyelonol #3, Demerol injections, even IV Dilaudid and Toradol during emergency room trips. I have been trying many different supplements as well. I have been considering going to a pain clinic since my doctor, as wonderful as he has been, is hesitating in prescribing any other pain medications since none of the other ones have helped thus far.

    I don't expect to find total relief...I just need some help getting through the day. I am a full time nursing student and work part time at a nutrition store. Needless to say I am very busy, but it is nice since I have some resoures for information, but unfortunately none of it has helped.

    Churchmom- what is the diet that you wrote about? I have tried to find information about dietary changes but haven't found much.

    Thank you all again, sometimes I feel very alone in my experiences and very overwhelmed with my pain. It means so much to have your support.

    -Vanessa
  5. Suzan

    Suzan New Member

    Since your doctor has tried several thing for you. I would think that your busy life has something to do with you pain levels as well. A pain clinic may help you with things other than drugs to destress and reduce your pain to a more manageable level.
  6. dakotasweett

    dakotasweett New Member

    I am sure my busy life doesn't help things- but I refuse to allow my pain to rule my life. I have dreamed of being a nurse and unfortunately must also work while in school to pay the bills. I have been trying meditation which does help a bit to get to sleep, but doesn't really help when I have my flare ups of excrutiating pain.

    I have kept a calendar to determine if the pain seems to worsen at my more stressful times- but it doesn't seem to correlate that way. I am trying to be very proactive about helping myself- but unfortunately all my efforts over the last 5 years have failed. I have been tested for many different things and all the tests have come back "normal". I had a sleep study and even went to the Cleveland Clinic and still nothing definitive was found.

    Thanks again for the support- it means more than you know.
    -Vanessa
  7. tandy

    tandy New Member

    I'm still looking for a decent dr. thats willing to at least prescribe something that helps.
    So far I'm in the same boat (sinking boat that is)
    Nothing really helps my Fibro pain.
    My illness had progressed over the 13 yrs I've been sick.
    so things that once worked,..don't anymore.
    I have found luck with vicoden but my dr. won't give me those staing that "Vicoden are for really severe pain,..NOT for Fibro"
    Ha!! make us laugh huh!??
    like he knows how much I'm hurting??
    Maybe a pain dr. would be much better for you? they have helped alot of members here. Tho not for me.
    I've tried that route and got prescribed Ultram.
    Same ole same ole,...not much help.
    I will agree with one of the posters above,...Zanaflex does work well for spasms and sleep.
    Hugs
    Tandy
  8. dakotasweett

    dakotasweett New Member

    Tandy, I am so sorry to hear you are having similar issues. It's unfortunate that there are still doctors out there that won't prescribe necessary medications to people in pain. Either they don't understand how much pain we are in or they fear we will become addicted to the medications.

    Out of curiosity, do any of you have find that pain medications also don't help with other kinds of non-fibro pain. I had an appendectomy a few weeks ago and found that nothing would control that kind of pain either. It was a really scary experience because now I am worried about ever having surgery again- since the pain could again be uncontrolled and because it flared up my fibro very badly.

    Hugs to all of you!
    Vanessa
  9. joc_07

    joc_07 New Member

    Hi,
    I am recently diagnosed, before my diagnosis my old doctors used to give me pain killer/muscle relaxants. They weren't working so they kept giving me stronger ones. The only time they worked is when I took 3 times the dose. I quit taking them and got myself to a good doctor who cared. She sent me to a Rheumatologist and I was told I had Fibro. He gave me a "prescription" for 2 books to read and sent me on my way (lots of help he was). I started taking Myalgia-X which is malic acid and magnesium. That's helped my twitching and cramps. I also take Moducare and that's lessened my pains and aches. After I started these alternative medicines I went back to my Doctor and she said she didn't want to give me any drugs because they are addictive, which was fine with me because nothing had worked before. These things helped me cope with my illness. I hope you find what's right for you.
    Jocelyn
  10. laura81655

    laura81655 New Member

    Vanessa, I'm sorry that someone so young as you is dealing with fibro. Have you tried massage, exercising in a warm pool, or walking ? These things have helped more than pain meds for me when I was younger.
    I sure hope you find some relief.
  11. dakotasweett

    dakotasweett New Member

    ...others are having similar experiences, but I thank you for sharing them- it helps me to feel less alone in this struggle.

    Laura- I find that warm baths help temporarily but as soon as I get out the pain returns. I am actually sort of scared to try massage again as the last time I ended up in more pain afterwards. I am definetly trying to exercise (walking) as I hear that is supposed to really help- but I haven't been able to in awhile since I have a weird issue with my knees filling with fluid unexpectedly which makes it impossible to walk. The doctors still haven't figured that one out- my doctor says my body seems to defy western medicine...which is exactly why I am trying to find alternative methods of helping myself.

    Thanks again,
    Vanessa
  12. elsa

    elsa New Member



    Hi and welcome to the board. I'm sorry you hurt so badly. I can only offer you my support as I have gotten much better lately.


    That's quite a list of medications you have tried without success. That seems to be somewhat typical with these illnesses. That's why so many of us keep going back to the drawing board for help.


    I did not notice any medications specifically approved for sleep disorders on your list. Have you tried lunesta, ambien or xyrem? Have you had a sleep study done? Just food for thought.

    I hope you feel better soon, .....

    Elsa
  13. dakotasweett

    dakotasweett New Member

    I am so appreciative of your support and so happy to hear you are not having the same problems...I hope I can say that someday soon.

    My doctor refuses to prescribe any sleep aids- he prescribed the Cymbalta with the hope that it would aid with the sleep difficulties. I have been taking it for two months and have not noticed any difference. I have had a sleep study which showed nothing- other than that it takes me forever to fall asleep.

    While I definetly have issues with my sleep (can't fall asleep- then once I do I can't wake up- then spend the rest of the day exhausted), the pain is main focus as it is the most debilatating.

    I think that once I get a handle on the pain- I can then focus on the sleep issues.

    Thanks for the help,
    Vanessa
  14. poodlemommy

    poodlemommy New Member

    I too tried many things and finally found something that works for me. I take oxycontin. We had to play around with the dose but I now take 80mg 3 times a day. I have been on that dose now for 2 years and havnt had to increase it. I dont feel doped up and can function really well on it. You wouldnt start on that high of a dose and may not need that much. Your doctor would try different amounts until you hit the right amount. I used to be on half as much but I got into a car accident a few years ago and that changed everything. Any how its works for me. good luck
    poodlemum
  15. JLH

    JLH New Member

    My rheumy swears that narcotic pain relievers do NOT help fibro pain. I agree with him in my particular situation. I take Lortab 7.5 for my back problems. It takes the edge off my back pain but never did help the fibro pain.

    A lot of other doctors feel this way, too.

    If you have take various ones for a long time, you may have built up a tolerence to them and that's why they didn't help your pain when you had surgery.

    My rheumy keeps telling me to exercise--that I will feel worse for the first 2 weeks, then I will feel much better. I used to take water aerobics and it helped alot, I've let my membership expire and haven't taken them for a while. I can't exercise at the moment due to a pinched nerve in my back that has my leg and foot numb.

    Janet
  16. DJM43

    DJM43 New Member

    Have you tried a tens unit for certain areas of pain? Right now I am having a flare up in my shoulders, neck and back. I am wearing my hubby's tens and it sure does help with the muscle pain. I pray that you find something that will help you.