Neuropathy

Discussion in 'Fibromyalgia Main Forum' started by Char_T, Sep 5, 2003.

  1. Char_T

    Char_T New Member

    I have Mergelia parathesia, a form of Neuropathy. Anyone out there have the same problem ?

    The pain is nearly unbearable. I just started taking Doxepin, my insurance does not cover Neurontin. Anyone taking either that can give me an idea how long it take to get any relief. How much does Neurontin cost if I pay for it on my own? Nothing relieves my pain and I am starting to get depressed. It has been 4 years and I just can't hardly stand the pain anymore.

    I have never met anyone else that has this particular problem. ANyone out there with this ? I would like to chat and see what others have done to help the pain and stress
  2. Shirl

    Shirl New Member

    Hi Char, welcome to the board. I am so sorry you are suffering so much. I sure hope we have some members here that can help or at least relate to what you have.

    I have Fibromyalgia, and all that relates to that.

    Have you also tried posting on the Diabetics board on this site? You may get some feed back there also.

    I sure hope someone can answer your questions.

    Again, welcome to the board, and hope we hear from you often.

    Shalom, Shirl
  3. Char_T

    Char_T New Member

    After doing some searching thru all the messages I see I am not the only one that is suffering. My heart goes out to everyone because I can truly relate to their pain.

    I have developed Neuropathy in my left leg. I also have it in my tailbone. It hurts like a SOB to sit. I have Greater Occipital Nerve Neuralgia and Trigeminal Neuralgia. On top of all that, I have Viral cardiomyopathy and was facing heart transplant for 2 years. I am off the list now but still have a very weak heart.

    And my doctor has the nerve to say I can go back to work ?!?!?!?

    I have tried Reiki, various holistic treatments and lots of pain medication, all to no avail.


    Thanks for listening, I am just hurting so bad and getting so depressed I had to vent a little........
  4. cookiebaby

    cookiebaby New Member

    Hi Char:

    I have peripheral neuropathy & fibro. I don't know anything about the form you have but I do feel for you. I've been on several difference combinations of meds since being diagnosed first with the PN and then with the FM. I started out with the Neurontin and I must admit I don't have any idea how much it costs as I am lucky enough to have really great prescription coverage on my health insurance. I also take Doxepin, but a small amount -- my neurologist added it for some additional pain coverage and some additional help with sleeping. He never suggested that Doxepin alone would begin to take care of the pain, but I don't really know that much about the drug except that it's one of the anti-depressants that also is helpful for relief of pain. Anyway, I couldn't tolerate the Neurontin -- messed with my brain too much and made me way too sleepy at even the low doses, but it DID do wonders for the pain. When I went off that, I tried Topamax which was also good but I had to back off on the high doses of that because of vision problems caused by that. I am still taking a smaller dose of Topamax and Trileptal, along with Gabitril and a small dose of Zanaflex -- together with the small dose of Doxepin at night and Effexor 150 mg for depression. Effexor is also supposed to be VERY effective in pain relief at least for FM pain. I'm not sure which drug is most helpful, or if it's the combination but my level of pain on a daily basis when not having a flare is tolerable. Not without pain, but not bad either.

    Anyway, I don't know how many meds you've tried but if you need something else you might want to ask your dr. about the Trileptal and Effexor, or the Topamax (unless you have high blood pressure).

    Also, don't if you know about it or not, but there is a website about Peripheral neuropathy and they used to have a message board. If you're interested let me know and I'll e-mail you the info, I think I still have it. I think we all go through cycles of thinking we just can't deal with the pain anymore. Chronic pain really wears you down, not just physically but emotionally and spiritually too. Please be good to yourself and let your doctor know that you're NOT getting enough relief from the pain. If he/she says there's nothing else he can do, look for another doctor. Keep coming back here and posting again -- if you don't get replies the first time
    try again. I don't often have lots of time to read all the messages and I notice there are some with lots of replies and some with hardly any. I think there are so many messages that people just read those where the topic catches their eye, or they recognize the person posting it.

    Hang in there -- I'll be thinking about you and will remember you in my prayers tonight

    Cookie
  5. Char_T

    Char_T New Member

    Thanks for the info Cookie. I'm sorry that you have so much pain. Is Neuropathy a lot like Fibromyalgia?

    Can you list the name of the support group or the web site here on the message board?

    Thanks for your support, it means a lot.
    [This Message was Edited on 09/06/2003]
  6. cookiebaby

    cookiebaby New Member

    Hi Char: We aren't supposed to give links to web sites here on the message boards, I don't think. But if you do a search on a search engine, like google, the organization is called the Neuropathy Association. You should be able to find the web site that way. It also has a lot of information about neuropathies. From what I've read, many people who suffer with FM also have neuropathies and vice versa, but they don't always go together. My neurologist told me that many people with neuropathies, as in my case, never know why it's happened. Some people have the neuropathy because of diabetes or chemo or exposure to metals, etc. My neurologist ran all kinds of tests on me and couldn't find the cause. It's my understanding that neuropathy is different from FM in that it's all about damage to nerves and pain resulting from that. So it's a different type of pain from strictly FM pain, which is described as pain in joint, muscles and soft tissues, if I remember correctly. If you've had, or have both, with no pain relief, you can sometimes sort out which is which but only with the really severe nerve pain. I was told, and have also read some, about how it changes as the nerves are first being damaged as you lose some sensation, then as you lose more, etc. But there are lots of areas where it sort of blurs from one to the other. Besides pain, there are also lots of other symptoms in common like dizziness, loss of balance, fatigue, etc. One of the really weird ones with PN is called the "glove and stocking" sensation, where your hand/arm and/or foot/leg feels just like you're wearing a glove or stocking but in reality you are not. My one side is more affected than the other, so sometimes when I'm lying in bed on that side, it feels like there is nothing between me and the other side (the side on top).

    I'll have to read up on the Mergelia paresthesia you have.

    Which one were you diagnosed with first -- the neuropathy or the fibro? And by the same dr?

    Take care, Cookie
  7. beckster

    beckster New Member

    have low income, you can call Pfizer's 800 number and get
    signed up with them for a greatly reduced price, I think it is $15 a month (or something like that). If some other expensive drug works that company may have a similar program; several of them have these now.
  8. Char_T

    Char_T New Member

    Thanks a lot about the info on Pifzer. I will give that a try since I am definately low income.