Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016

Anyone here dealing with peripheral neuropathy?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@johnbishop

About 10 years ago when I had my doctor how they can tell if I have peripheral neuropathy, he said they could run some tests but they were expensive and may cause a little pain. I then asked him if the tests show I have nerve damage what can you do. When he said nothing I decided why have the tests. I've come to regret it a little since it's gone from the toes and bottoms of the feet up to below the knees. So now that I have had the ECG and MRIs that show nerve damage I'm waiting to see if the neurologist at Mayo will be able to tell me the specific type of neuropathy I have or if I need additional tests to make the determination. My doctor team at the Mayo Family Clinic thinks it's associated with pre-diabetes but I'm not buying that diagosis just because I've had it for a long time and do not have diabetes. I think it's related to my PMR which is mostly in remission. I have a friend with peripheral neuropathy that was helped by treatments through the Realief Neuropathy Center in St Louis Park, MN but they are really expensive. There is also a group of members of the MN Neuropathy Association that have had a lot of success using electrotherapy(?) with the Zopec DT-1200 device. I'm really hoping that there is some natural treatment that will reduce the numbness so I have been trying lots of different lotions and cremes with not much success so far. Another resource you can tap into looking for people with the same condition for advice or just to vent is the closed Facebook group Our Neuropathy Friends. Great group of people that are pretty active. Thanks for listening...praying that you all will find some relief.

Jump to this post

I have Peripheral Neuropathy which originally was diagnosed as idiopathic until a special blood test showed that I have a rare antibody FGFR3 . Which is the cause. I too have fibro and other autoimmune diseases like Hashimoto' thyroiditis. Osteoarthritis, pelvic floor dysfunction and I am a kidney cancer survivor.

REPLY

Yes! I do. It is the results of pernicious anemia which went unrecognized and undiagnosed for several years, not sure just how long. I now have monthly B12 injections, so nerve damage will not further decline but will not abate either. I also have other symptoms.

REPLY

Please read my reply to "untreated diabetes:" re gabapentin for neuropathy above. Superwife

REPLY

Yes I am. Trying to find alternative ways to deal with it besides gaberpentin. My toes and balls of toes are affected. Numb, pain, tingling and red swollen when I am wearing socks and shoes. I had to get special shoes that were soft and comfortable.

REPLY
@kgoodwin9

Yes I am. Trying to find alternative ways to deal with it besides gaberpentin. My toes and balls of toes are affected. Numb, pain, tingling and red swollen when I am wearing socks and shoes. I had to get special shoes that were soft and comfortable.

Jump to this post

@kgoodwin9

I have peripheral neuropathy with numbness and pins and needles, with burning pain in the balls of my feet and toes. The pain is much better since I had a spinal cord stimulator implant last June, but it's pretty bad if I'm on my feet very long, especially hard surfaces. At bedtime, I put Lidocaine cream on my feet, which numbs them for awhile and helps me go to sleep. I've tried every medication for neuropathy and then some. None of them have helped the pain, and the side effects have eliminated some. The only med that relieves the pain is morphine sulfate contin. I know that lots of people are looking for "natural" remedies, but so far I haven't heard of any. A case could be made that opiates are natural, and some people are helped by another natural, CBD. Maybe a treatment will be found some day that's less dangerous than many in use today.

If you discover one, we'd all appreciate it very much if you'd share it with us.

Jim

REPLY
@kgoodwin9

Yes I am. Trying to find alternative ways to deal with it besides gaberpentin. My toes and balls of toes are affected. Numb, pain, tingling and red swollen when I am wearing socks and shoes. I had to get special shoes that were soft and comfortable.

Jump to this post

Hi Jim your looking for natural remedies then try what I did after suffering chronic pain with none of the pain killers working I approached. Hypnotherapist who was prepared to help me and after 2+ hours with her I went from an 8/9 pain level down to a two that was about 9 months ago and it has stayed at that level but it is something you must believe in
Regards Brian

REPLY
@kgoodwin9

Yes I am. Trying to find alternative ways to deal with it besides gaberpentin. My toes and balls of toes are affected. Numb, pain, tingling and red swollen when I am wearing socks and shoes. I had to get special shoes that were soft and comfortable.

Jump to this post

Have had adverse reactions with Gabapentin. Eyes had difficulty focusing for almost a day after minimal dosage 100 mg at bedtime. What to try??

REPLY
@kgoodwin9

Yes I am. Trying to find alternative ways to deal with it besides gaberpentin. My toes and balls of toes are affected. Numb, pain, tingling and red swollen when I am wearing socks and shoes. I had to get special shoes that were soft and comfortable.

Jump to this post

Hello @papillon3 -- welcome to Connect. Not all people react to gabapentin the same but vision problems are one of the less common side effects according to the information on Mayo Clinic's site here:
-- https://www.mayoclinic.org/drugs-supplements/gabapentin-oral-route/side-effects/drg-20064011

Have you talked to your doctor about the difficulty with your eyes focusing after taking the gabapentin? I think it's important to share that with them. Maybe they can recommend something else that helps.

I'm tagging other Connect members who have discussed gabapentin to see if they have any information they can share. @bonnieh218, @desirea, @jimhd, @donny67, @gman007 do you have any suggestions or information to share with @papillon3 ?

John

REPLY

Hello @papillon3. I have been taking Gabapentin now for 10 yrs. It was prescribed to me for deep depression. I am sorry to report that I had no side effects except feeling happy on it. My thoughts were clearer, also. Some side effects do fade out, I've experienced with other medications. Gabapentin is prescribed for many different issues. Especially Peripheral neuropathy.
Take care for now!

REPLY
@kgoodwin9

Yes I am. Trying to find alternative ways to deal with it besides gaberpentin. My toes and balls of toes are affected. Numb, pain, tingling and red swollen when I am wearing socks and shoes. I had to get special shoes that were soft and comfortable.

Jump to this post

Hi, I'm the "new girl" on the block. I have had a connective tissue disorder for about 20 years and used to see a regular pain Management doctor who only gave pain pills and nerve blocks! I finally said enough and went in search of another pain doctor. Upon going the Neurologist for carpal tunnel he referred me to a great pain management doctor. She is an Anesthesiology Doctor with a Ph.D. and a degree in Oriental Medicine! I can't begin to tell you the pain relief she has brought to me! Keep in mind I have nerve damage from Chiari brain surgery, laminectomy and craniectomy along with bone graphs and other damage at the foreman magnum!
She does cupping, acupressure, acupuncture, herbal treatments, etc. Sure some days are still hard and I need the extra help; but, her methods HELP! I was skeptical at first until after the first several treatments! My migraines were almost gone! I was happy person untl the problem below hit me. Just waned to drop a line that Alternative Medicine does work!

REPLY
Please sign in or register to post a reply.