Anybody with non-diabetic Peripheran Neuropathy Pain ?!

Anybody with non-diabetic Peripheran Neuropathy Pain ?!

Hello

I am a new in PN community, I am 63 and diagnosed idiopathic non-diabetic PN and living with it for 6 years, looks to me no meds can help the pain or improving my PN ( bad luck )

I was wondering how you people are living with your PN pain.

May be we could share some of our experiences in how to deal with it and get some relief.

Rahim

14 Replies

oldestnewest
  • Hi,

    I take a combination of meds for my health probs, but from what I recall, it has been the Gabapentin that was aimed at this, and had the most effect. It is always trial & error with meds, as all of us are individuals! Best to work with your doctors, hospital depts, etc. until you find what works for you. Good Luck with finding the help you need, and hope your doctors are listening when you describe this awful pain.

  • I agree and thanks dear Tear

    I wish I could visit a Doc with the same problem, may be the combination of Gaba & Lyrica could work better.

  • Hi Rahim....you are the first person I have found to have asked about non diabetic neuropathy! I am wondering if we are the only two! I am on 200mg gabapentin 5 times per day along with my other meds. I just want to know what caused it in the first place and what can I do besides take meds for it....I ask but no one gives me a direct answer. Of course unless you have a particular illness with associated pain you can't really understand how it feels..so the docs are sympathetic but I just want to scream sometimes because my feet hurt so much. My neuro. said try Capasacin...(sp?) yah right...almost lost what is left of my mind! I don't recommend it....anyway you are not alone but am afraid I am not much help..but will watch for your posts...

  • Hi Rahim and Doodles. Rest assured that you are not alone in suffering from non-diabetic peripheral neuropathy. I suffer from it as well. Gapapentin did not have any effect. I am now on Zydol and at last am leading an almost normal life practically free from pain. It is a relief, (although it is sad as well), that I am not the only person to suffer from PN. Thank you for making me feel that I am not alone out there.

  • I was diagnosed with both RSD and non diabetic peripheral neuropathy after a surgery I had. Put me on Gabapentin starting off at 300mg 3x a day, going up to 900mg 3x a day..Enough is enough..slowly weaning myself off of this. Need to find the underlying cause. For me, it was the trauma of the surgery messing up my sympathetic nervous system. Gonna head back to my neurologist to see what can be done to FIX what went wrong instead of relying on all the meds these doctors want to put us on. Will update once I learn more.

  • Yes, had ALL bloodwork done to check for deficiencies with none found. I did start taking Centrum ProNutrients Omega 3 which is EPA/DHA supplement and I am also taking 300mg of Krill Oil (must not be allergic to shell fish for this) and I do find that it helps.

  • I was wondering if others in this group with chronic fatigue associated with fibromyalgia or are some of you folks dealing with non fibro conditions that also have chronic fatigue.. I have a rare muscular dystrophy and also chronic fatigue.. I am curious what other conditions folks have.. thanks all.. this is my first visit here.. kayceebee

  • Hi Kaycee

    I know there are some people suffering from Fibromyalgia in "invisible illness" blog, just go to your home page and click on different titles .

    good luck :)

  • ?Dear Dood thanks for your comment

    Regarding to the cause I have the same problem and I know what you mean by screaming of the foot pain. In my case it could be because of chemicals I have been working with in the past ( I am a chemist ) or it could be because of some meds I took before or may be living in Tehran with a lot of cars using nonstandard gas, see tracking the cause for most cases is so difficult that is why I am discarding diabetes ( the most dominant cause ) .

    Regarding to the cause first check your blood and you include iron, magnesium, B12, B6, sugar, thyroid, cholesterol and any other item that could be add to the list by your doc.

    Then make sure you do not have carpal tunnel injury in wrist and disc problem in your loin

    If every thing was OK we could be in the same boat :( ant that would be called "Idiopathic peripheral neuropathy" or unknown cause for PN

    You are right about capasacin, I try to eat healthy including a lot of water, stay in shpe and be active .

    I wish luck for both of us :)

  • Hi Rahim,

    After much trial and error found that Pregabalin (Lyrica) relieves my PN pain somewhat. I had to badger my GP to prescribe it though - do others find that once diagnosed and prescribed something, we are more or less left to our own devices to manage as best we can by the medical fraternity?

    Guthrie.

  • Hi Guthrie

    I agree with you, first I thought, I am all alone in my home town now I realize this loneliness is universal, I am taking Lyrica + V-E400 + V-B1 I am managing so far but we really need to be contacted with people to know PN better than us but looks like there is no such a person in existence :(

  • Once a diagnosis is made I feel that there is little follow up, or continuity in care. Life can be very difficult at times without having to chase up recommendations between departments. Gabapentin and amitriptyline are good at night for sleep and ease. Chronic fatigue is a symptom in many conditions. Add on effects of meds and boy its like wading thru treacle. I have neuropathic pain in my arms from neck and referred pain into back, with dysesthesia.. funny feelings as I call them. Between cramps muscle spasms and strange pain its hard somedays

  • It never tells you how it will show itself, sometimes does not bother me much and some times gives me all sort of neuropathic pain, no matter what kind of pain killer I use.

    I am not afraid of death any more, may be I would be better off with hell......lol

  • I have been living with PN for 20 years and am so tired of the pain and disability of walking with pain every step. I do not have Diabetes and feel healthy except for my feet but, would love to go on a long hike and run along the beach but, I feel so unstable and in pain walking I do not to go even thought my heart wants to. I wonder were this will lead me in the future. Will I get to a point I will fall and brake a hip or not be able to walk. There is no information as to what will happen.

    I do not understand why there is not more researh into this health problem? Why researchers do not seem to care. Is there not enough money to be derived by finding a solution? I take 600mg Gavapentin two times a day and it sort of helps but, makes me a bit tired. Still have a lot of pain and discomfort. When asked to describe it I say it is like walking on marshmelows with pins going into my feet at the same time.

    The things I think may have contributed to getting this problem are that I have very long feet 12N and some doctors say that it is because my arches have collaped but I do not know . My feet have always been flat and until my early 40's there was no problem. Also, I herniated 2 disks L4 and L5. A percotanious dislectomy was an operation that was recommended but, I did not have that and excersised myself back to health after spending a month in bed and 3 months on a walker. Soon after that I developed PN. Would the operation work now to relieve this problem? I do not have any answers.

You may also like...