[NM_Dewey]

So glad to have found this forum. I am 40, Male, the only medical issue I have besides PN is Gout. I take 400mg a day of Allopurinol and watching what I eat have not had a gout attack in over a year with my uric acid levels in check. Problem is my PN. I have seen a couple of different neurologists among other specialists and can not find a cause for my PN. The pain of walking or standing has really impacted the lives of my wife and I. I constantly feel coldness/tingling/burning pain in both feet and sometime my hands, throw in the shooting pains in my feet, loss of balance (I now must use a cane to walk), and feeling of electrical shock in my feet. I am miserable. My wife and I can't do the things we used to do (hiking, skiing, snow shoeing). We recently moved to New Mexico and I get to start seeing another Neurologist at UNM.

Neurologists have prescribed Gabapentin. I was taking 900mg a day with no pain relief. I have since weened myself off with the knowledge of my previous neurologist. Not sure what to do for the pain. I can't take drugs during day since I need to function at work. In the evenings I have turned to Marijuana to help take the edge of the pain away so that I can sleep. I do not smoke...I prefer to bake.

I have started acupuncture and taking Alpha Lipoic Acid (400mg day). The acupuncture at times seems to be helping. I get less of the shooting pains but the tingling/cold/burning still persists. Only time will tell. Has anyone else received relief through acupuncture?

I just don't know where to turn. I feel as if I am 90 years old. Unable to walk, I am miserable. I feel terrible for my wife as I am not the man she married.

Had to put this down....don't really expect assistance here just wanted to vent.

Dewey

[(Broken Wings)]

Welcome to NT

We will listen to you when you want to vent. It makes you feel soooooooo much better.

I do hope you stick around. It sounds like you have a lot to tell.

Here is a link to PN

http://neurotalk.psychcentral.com/forum20.html

I don't know if you've ever heard of LED and infrared lights. I found them to help some of my symptoms you're describing. Cold, numb, tingling... pain... will share if you want.

It is harder for a partner to share in the bad, but that's kind of what "married" is about. Nine years and rolling (9 yrs post accident), it definitely puts a new perspective on priorities. I learned a lot about love on this lonely journey; good love/bad love, it's not always going to be perfect. We're not alone. Many here are struggling with the same facts. Time will tell. Live and love for today, my friend, for today is all we have.

[ewizabeth]

Welcome to NeuroTalk Dewey!! I'm so glad you found us!

[mrsD]

Welcome to NT... I am sorry you have this new symptom to deal with.

Allopurinol is on the list of drugs that can cause PN.

Eur Neurol. 1993;33(3):193-4.
Regression of allopurinol-induced peripheral neuropathy after drug withdrawal.

Azulay JP, Blin O, Valentin P, Abegg P, Pellissier JF, Serratrice G.

Clinique des Maladies du Système Nerveux, CHU Timone, Marseille, France.

A patient experienced an axonomyelinic peripheral neuropathy during a long-term allopurinol treatment. The symptoms and signs regressed after drug withdrawal, and the nerve conduction velocities and distal latencies improved. The incidence of allopurinol-induced peripheral neuropathy is very low. Thus, facilitatory factors have to be sought.

PMID: 8385614 [PubMed - indexed for MEDLINE]

from http://www.ncbi.nlm.nih.gov/pubmed/8...m&ordinalpos=8

Allopurinol is not used as much now as in the past. So therefore not many people would be in the pool, to report serious issues.

The only way to test the PN link is to stop the drug for a while.
Please discuss this with your doctor, before doing it yourself.

[NM_Dewey]

We have weened off Allopurinol in the past with no change in symptoms. I'll mention again to the Neurologist.

Dewey

Originally Posted by mrsD

Welcome to NT... I am sorry you have this new symptom to deal with.

Allopurinol is on the list of drugs that can cause PN.



Allopurinol is not used as much now as in the past. So therefore not many people would be in the pool, to report serious issues.

The only way to test the PN link is to stop the drug for a while.
Please discuss this with your doctor, before doing it yourself.

[NM_Dewey]

Interested in anything that may help. Any info you have please share. Thank you.

[mrsD]

Drug induced PNs, often have a component of damage to mitochondria. Other common drugs that do this, are statins for cholesterol and fluoroquinolone antibiotics like Cipro/Levaquin/Avelox.

You might try taking some supplements that improve mito functions. These are:
acetyl carnitine
CoQ-10
r-lipoic acid

These often help drug induced toxicities and are used for chemo damage, too. If you come to the PN forum and search, you will find more details.

[azoyizes]

Hi Dewey, and welcome to NT! This is such a great place with many caring, nice, and friendly people.

We're so glad you found us!

[Rrae]

I also am a new member to this forum. It seems like a fabulous place to be.
I posted my very first thread in the Peripheral Neuropathy section. I was 40 when i became plagued with this nightmare. you are so right - it completely steals your entire LIFE. ! Not to mention the guilt factor that comes along with it. I feel like my husband deserves better and my kids USE to have a fun mom who did fun things with them. Now i feel like a useless blob.
Have u been told or recommended the Spinal Cord Implant ?? I am getting ready to try this as my last option.
Just wanted to connect with ya since it seems we are in the same boat.
Maybe I'll hear from you in the Peripheral Neuropathy section.
Oh, by the way, My PN is in both legs and I am becomming disabled right before my own eyes. It's a nitemare !!!
Take Care
Rae

[tinglytoes]

Originally Posted by NM_Dewey

So glad to have found this forum. I am 40, Male, the only medical issue I have besides PN is Gout. I take 400mg a day of Allopurinol and watching what I eat have not had a gout attack in over a year with my uric acid levels in check. Problem is my PN. I have seen a couple of different neurologists among other specialists and can not find a cause for my PN. The pain of walking or standing has really impacted the lives of my wife and I. I constantly feel coldness/tingling/burning pain in both feet and sometime my hands, throw in the shooting pains in my feet, loss of balance (I now must use a cane to walk), and feeling of electrical shock in my feet. I am miserable. My wife and I can't do the things we used to do (hiking, skiing, snow shoeing). We recently moved to New Mexico and I get to start seeing another Neurologist at UNM.

Neurologists have prescribed Gabapentin. I was taking 900mg a day with no pain relief. I have since weened myself off with the knowledge of my previous neurologist. Not sure what to do for the pain. I can't take drugs during day since I need to function at work. In the evenings I have turned to Marijuana to help take the edge of the pain away so that I can sleep. I do not smoke...I prefer to bake.

I have started acupuncture and taking Alpha Lipoic Acid (400mg day). The acupuncture at times seems to be helping. I get less of the shooting pains but the tingling/cold/burning still persists. Only time will tell. Has anyone else received relief through acupuncture?

I just don't know where to turn. I feel as if I am 90 years old. Unable to walk, I am miserable. I feel terrible for my wife as I am not the man she married.

Had to put this down....don't really expect assistance here just wanted to vent.

Dewey

Hi Dewey, Yes indeed, being only 40 something and suffering PN is worthy of venting here. I have used acupuncture for about 20 years and it has kept me going so far.It is truly frustrating how little doctors know about the causes and especially the lack of effective treatments. I'm a little older but had problems for over ten years. The hardest aspect is the loss of self-identity. I deeply missed my athletic persona and enjoyed it so much it left a big hole in my life for awhile. We need to honor the process of loss, even if temporary, we have grief in those areas which is appropriate.

In some ways it is good to know I am not my story, my body condition or other aspects on the physical level. At the same time the person your wife married, and who I AM, is always present, seen and loved and love-able. If you ask her if she still sees the real YOU I think she would agree that this is what matters the most. Check in with her, maybe it will help?!

Whether those who choose to believe in the entitlement of good health etc.. choose to see us as we really are, depends much on how we see ourselves. Then there are those who can only focus, or value the physical literal reality. I am not going to say more about those who are incapable of appreciating the gifts of experience of suffering We all know folks who don't get it..

Since I choose to identify with my Greater or Higher Self, I have had more ease, peace and over all satisfaction in my life. I am told that no one really knows what is going on inside me. I am authentic, open, expressive, yet do not portray what others assume chronic illness and pain looks like in their imagination.This leaves me open to express my best available talents and qualities still available at any given time or circumstance. Always the small blessings somewhere.

LIke I said earlier, this is the hardest aspect, to adopt as a new identity. I still have to learn to practice self-love and better care for every physical aspect on the material level, an ongoing learning process. Especially when practicing saying no to too much time on my feet. Re-framing my habitual patterns of identity focusing the parts which are not crippled, or ill, is my way through this madhouse of suffering which seems endless.

I live alone and I have been forced to find ways to cope with the existential loneliness of chronic pain etc... I am really sorry to hear how awful it has been for you. I hope you can find support and understanding on this site.

I also use antidepressants because who wouldn't be depressed under these conditions. Totally normal reaction to be sad, angry and say "why me?!" .As my higher self is not unaware-split off-- of the physical, it helps me copey by switching focus now and then. We are all of our aspects Perceiving life through the colored lens of chronic pain is extremely challenging. There are many on this site who will really listen, understand and offer good places to look for potential relief.

I do know that changing to CYMBALTA an antidepressant, has helped reduce the pain dramatically for me. It is now FDA approved for use in PN pain. It might be worth a try anyway. At least I can get out and enjoy the sunny days with a bit more ease.A blessing on many days now.

Hope you find some relief on your journey. This place seems to me to be the best site to get more help and understanding than anywhere else, so many share your plight in truth. Thanks for sharing and listening, good luck! TT