New to this

HI,

Last year i was diagnosed with Peripheral Neuropathy and was wondering what to expect? I've read quite a bit but it always seems to refer to the person being over 50 and some are not giving me hope of getting better. I am getting so frustrated at the lack of information available.

I'm 29 and was having trouble with numbness and cramping which caused me to lose my balance. They were unsure but after seeing a specialist he decided that PN was the most likely cause. A year later and the problems haven't worsened or gotten better although i try to do everything i can to get things put right. I am dieting and exercising but are there any particular foods or fitness regimes that will help?

If anyone has any advice??

Sorry if i seem all over the place, I'm new to all this talking about stuff.

Cheers :)

9 Replies

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  • hi Rocknerd, I have suffered since 1983, however I have suffered this terrible complaint through having Diabetes type 2 I was 44 yrs old at the time, I'm told by my GP that I am stuck with it for rest of my life, My age is now 77yrs old I have been taking 375mg Pregablin with Paracetamol 300mg to ease the situation, All I can say is hang in there it seems a young Age to start this Complaint at 29yrs, wish you well !!

  • PN is a bitch, pardon my language. It can be agonizing. I was diagnosed 25 years ago when they wouldn't give people in chronic pain anything for the pain. You just had to suffer with it. I was diagnosed by Mayo Clinic in Minnesota who told me to go home and read the book of Job in the Bible, they didn't know why some people had to suffer. I am a Medical Technologist and had to work in a wheelchair because of the pain. I know what you are going through. Hang in there. Don't let the pain win. Stay as active as you can with the pain, that way you won't be as depressed hopefully. I have been to the point where I couldn't walk at all, but you have to keep going. Be strong.

  • remember I have had 27 years of this. I have been where you are at. I was in too much pain to get ready for work, so I crawled to get ready, and my husband drove me to the hospital and my biggest hope was that there would be a decent wheelchair at the front doors that I could work in. Spent 5 years in the wheelchair, and a group from the fitness center in the hospital heard about me and literally dragged me up there. I was too weak to walk from machine to machine, but I got stronger. My dream was always to run marathons, to compete, so they put me on a bicycle and that was all it took. It was the window to my world. I saw trees, flowers, the sky!! I started living again. Have ridden all over the United States and Canada. Have competed in trialalons and duathalons. But after my second husband and I got married, I had a severe relapse. And I quit. I gave up. Spent another five years just going to doctors. I finally decided enough was enough. If I was going to hurt on the couch I could hurt on the bike, and started riding again. Treated myself to a new bike last year. Do I moderate? No. Do I push past the limits? Yes. But that is my choice. I won't let the pain rule my life any more. It has taken enough of it as it is. So if my story helps you in any way, I am so glad. God does put people in our life for a reason, I truly believe that, and I don't hate Him anymore for my suffering. But remember,, 27 years. Just hang in there, just do the very best you can every day, and keep living. Never give up, no matter how hopeless it feels at the moment. Best wishes to you and your family!

  • Do you know your B12 levels - your Thyroid levels ? When these are low you can suffer PN as I know to my cost .....

    When B12 is low the myelin sheath that protects nerves can become compromised/damaged and cause PN. Good thyroid levels needed for EVERY cell in the body.

    Docs rarely make these connections and also stick rigidly to inappropriate test results.

    Happy to talk ....

  • I don't want to scare you, but I'm 73, and have had neuropathy for well over thirty years, and I STILL don't know what to expect, and I STILL don't have a definitive diagnosis. It's getting worse, and I'm trying to get an appointment at a medical university-based neuropathy clinic. It started years ago, as just a numbness. No pain at the time. Over the years it has very gradually gotten worse and worse and worse, until lately it is excruciatingly painful. Most of the medications for it make me too dizzy to drive, so I only take them at night, but it is getting harder and harder to get through the day. There are different kinds of neuropathy, and many different causes, so your prognosis depends a lot on what kind you have and why. If your doctor seems committed to getting answers for you, then stick with that doctor, but if you feel you are being brushed off or ignored, find a better doctor. Don't wait as long as I did before trying to find a neuropathy specialist.

    P.S., mine is NOT diabetic neuropathy. I have had VERY well controlled type II diabetes for a decade, but had the PN for over 30 years. Do the math. The thing that prompted me to seek an appointment with a medical school neuropathy clinic, was anger over the fact that my new doctor (I moved) dismissed it as diabetic neuropathy, and when I told him the above; that I had the PN over 20 years BEFORE the DM, he just snickered at me and said "Oh, you probably had diabetes all along and just didn't know it". I did NOT have DM without knowing it. I was getting my regular checkups all those years. If I had DM all those years, my doctors would have known it. The doctors I had before I moved knew it wasn't diabetic neuropathy, but they didn't know what it was, and I didn't pursue it further until this new doctor made me angry enough to look harder.

  • I read your note and you seem to be much like me . I am still having tests but it will be Christmas before all the results are in. I know they cannot do anything much about it but it will be helpful to get the final diagnosis. Am low in B12 so will ask the Dr if I should take something. Tiredness is also an issue but I do take a break whenever I can, mornings are bad until I get moving. My damage seems to have been caused my RA which I have had for some time. Try to say safe when walking. Wish you lots of luck.

  • hi I was diagnosed with something called erythromelalgia similar to pn I was born with it I'm 54 started getting bad in my twenties I get it in my hands knees and feet really bad cant sleep had my feet in fridges that's how bad it affects me so I have sympathy to those that suffer from it ive been on pain killers for 20 years paracetamol/dihydrocodeine 500.30mg but government tried to take me of the paracetamol because they r to dear so I'm down to 4 a day plus gabapentin600mg 3 times a day

  • b12deficiency.info/signs-an...

    Scroll down for the signs and symptoms of B12 deficiency :-)

  • Cheers guys!

    I'm trying to book an appointment with my GP although its impossible at this time of year to get one. Thanks for the advice. I will let you all know how i get on :)

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