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peripheral neuropathy
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paindaily posted:
is there a chat room I can go into to speak with some people who have the same issue, I am disgusted with doctors answers and think it would help if I speak with some people who have the same issues
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RedBear2005 responded:
One such resource can be found at Brain Talk Community: brain.hastypastry.net/forums/forumdisplay.php?f=219

Feel free to come back and post here at WebMD. There are several of us who are first-hand familiar with the issues of peripheral neuropathy.

Regards
 
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wanttowalk responded:
Hi...I've had every test in the world, still losing legs, pain stabbing, increasing and Advil does nothing. Do you try any exercises, slow ones, like tai chai or swimming. I know for me everything says not to move but I'm afraid of a wheelchair. Do you encounter people who think your are intoxicated? I don't know your symptoms but I know i am sick of that.

Hope this helps.
 
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dondid responded:
Hi, I have never reached out before but after a total melt down today I felt I needed to turn to people who could understand. I was diagnosed with Fibromyalgia 2 yrs ago and I have Peripheral Neuropathy. I was put on Lyrica and still the pain will run a fairly steady 7-8.Please don't get me wrong if I run out for a day or two the pain shoots through the roof. Right now the thing I am worried about the most is the Neuropathy. No one seems to realize how the constant painful tingling and shooting pains in my feet can wear on me until I feel as if there is no hope. I was put on Neurotin 5 days ago, I was so hopeful but there seems to be no change I'm taking 100 mg twice a day. This in addition to the Lyrica. My MD only gives me pain meds when I am going to be traveling because the FM pain is worse then. I have developed a habit of rather violently shaking my feet to try and mask over the tingle I know this will sound like a whole lot of self pity but this has really started to effect my mental state I feel like there is no hope. I was raised that you never complain you just deal with it, I don't think I can do that any more. I have trouble with insomnia but I think it is because of the neurapothy 90% of the time. Does Anyone have any advice? I hate to ask my MD for pain meds cuz they allways seem to think you just want drugs. Please any advice would be helpful anything to give some hope.

 
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Jeaniac responded:
Hi, I to have Fibro. and the pain sucks. Warm water swimming and or hot tub took the edge off. (for me) Have you visited fibromyalgia web sites or webmd.com. they seem to be very helpful.
 
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PN_Support_Group_Leader responded:
20 Million people have Peripheral Neuropathy, a painful, dibilitating disease with over 100 sub-varieties, yet you rarely hear about it. I'm president of the Neuropathy Support Group of Los Angeles. We meet monthly at UCLA and everyone is welcome--call 310 485-0357 for information. See our website: www.Numbtoes.org. If you are interested in our group's e-newsletter, email us at: Help@Numbtoes.org.

Also, The Neuropathy Association, www.neuropathy.org, has an excellent bulletin board dedicated to peripheral neuropathy. There are doctors who will talk to you via email. You can also sign up for their e-newsletter. This is all free. If you have questions, call 800 247-6968.
 
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Lifes responded:
Actually, on this Board and on the Diabetes Board, PN and general neuropathy are discussed quite frequently. But I agree, among doctors and their patients that neuropathies are often never discussed until the patients bring up neuropathy as a possibility. Of course, if these patients are not diabetic, by then they have heard every conceivable so-called diagnosis imaginable! The most frequently heard "diagnoses" physicians tell non-diabetic patients include:

  • you slept wrong

  • you're anxious, or you're depressed (especially women)

  • either implying or saying outright that the symptoms are imagined, deliberately made-up for attention, or exaggerated (especially women)

  • either implying or saying outright that the symptoms are all in your head (especially women)

  • that the symptoms do not exist if tests do not clearly and definitively show "nerve damage"

    More doctors are slowly becoming educated about the possibility of neuropathies when patients give a "weird" or unexpected description of pain. However, it's a shame that it still takes months to years for patients to get a correct diagnosis. Most doctors don't realize that neuropathies do not react well to over the counter pain relievers (advil, tylenol). Since the widely advertised Lyrica became known, doctors are more apt to prescribe that drug over other meds or prescribe Neurontin, but seem to lack knowledge about other anti-convulsants that have a better result. When Pizer produced Neurontin, the company's own tests (before 2004) showed Neurontin is no better than a placebo in controlling neuropathic pain. But doctors still prescribe it, more than any other med, for this kind of pain.

    I continue to hope that as more patients hear about the numerous ways that neuropathy and PN can develop, that the patients will continue to educate their doctors.

    Neuropathy pain (all types) is one of the most debilitating pain conditions, often never giving more than a few minutes or hours of tolerable pain. Neuropathy pain affects all areas of life, from sleeping, work life, family life, relationships, and overall well-being and general health. Medications used to cover up or reduce the pain often causes foggy thinking and slowed mental processes, decreased appetite, and feelings of powerlessness, hopelessness, and desperation to find relief. Anger takes top place when doctors disbelieve patients, which has happened to almost every sufferer who has written on this Board.

    I think other sufferers agree that we all need more NON-diabetic research about neuropathies caused by other factors and we need much more research to develop better drugs to control / reduce this kind of unrelenting pain.

    I often refer people to The Neuropathy Association, www.neuropathy.org It gives excellent information to help patients have better discussions with their doctors.

    Lifes
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    blablagirl responded:
    hello friend, look at this treatment method of peripheral neuropathy , for my problem the diagnosis helpd. good luck


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