Complications with Peripheral Neuropathy

Posted by kadfrompa3232 @kadfrompa3232, Jul 25 8:36pm

I was diagnosed with PN in 2018 with symptoms of tingling and pain in my feet. First Medication was gabapentin, (caused dizziness and falling) along with baclofen. Now on Lyrica, Baclofen (3X's day) ,
Cymbalta at night for cramps, Lidocaine/Prilocaine cream on both feet, especially top and bottom of toes. The neuropathy is now in both feet, in calf muscles in both legs, Additional symptoms are pain, stabbing, shock like pain, balance issues (using cane) severe burning in both feet, both legs have redness where nerves are irreparably damaged. Pain is so bad at times I cannot walk without pain and it prevents me from walking and participating in many areas I loved to do in the past. Many alternative treatments, hard to know if any really work. thank you.

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harley22 | @harley22 | Jul 26 2:37am

I have same as you described.
So bad sometimes I can’t walk either.
Everyday I have pain,and I take Tramadol and Ibuprofen.
Gabapentin and nany of other drugs did not help me.
Will behaving Rituxan infusions in few weeks Andi hope it will help me.
Right now thenumbness has gone up to my right hand, and I can’t write with a pen.
Hard for me to even sign my name!
Letshopefor a drug that will help us

dlydailyhope | @dlydailyhope | Jul 26 6:21am

@kadfrompa3232
Were you told what caused your neuropathy? Did they do blood tests to see if you were deficient in vitamin b12 or at toxic levels of vitamin b6? Are you diabetic or do you drink alcohol (known to cause neuropathy)?

I have peripheral/small fiber neuropathy and take low dose gabapentin but it doesn’t really help and only makes me dizzy. I do take alpha Lipoic acid and Acetyl l carnitine supplements which are known to help some with neuropathy (they do seem to help me with some of the symptoms). I also have used the lidocaine pain patches and capsaicin pain cream which has helped me some.

I feel for you and can empathize with your pain. It may be good to look up nerve health diets to see if there is anything you can do to better support your nervous system through nutrition and what are things to avoid.

John, Volunteer Mentor | @johnbishop | Jul 26 6:48am

Hello @kadfrompa3232, I would like to add my welcome to Connect along with @dlydailyhope, @harley22 and others. Sorry to hear you haven't found much relief for your neuropathy. I'm happy that you have found Connect and while you wait for additional members to share their experience you might find it helpful to scan through the many discussions and comments on what members have found that helps with their neuropathy. Here is a list of the discussions and comments from members - https://connect.mayoclinic.org/search/discussions/?search=neuropathy%20what%20helps.

Another great source of information is the Foundation for Peripheral Neuropathy. You might want to read through their page on Living Well with PN here - https://www.foundationforpn.org/living-well/.

Have you made any lifestyle changes to see if they may help with your neuropathy symptoms?

strawberry10 | @strawberry10 | Jul 26 12:08pm

I have peripheral neuropathy I didn't know what it was for a long time. Numbness and tingling and burning in my feet and legs and arms and now my upper back. Getting hard to use them. They put me on gabapentin and Percocet for pain. I also do B12 injections at home. I was sent to do a nerve study and I amazed the doctor. I was sent to a specialist who then done a DNA test came back that I have Charcot-Marie-Tooth disease with missing pmp22 gene along with Peripheral Neuropathy. I've tried all the supplements and creams nothing works for me. I have a nerve stimulator put in my back and I recently have had a pain pump put in my spine it's starting to really help it's getting better each time they increase it with is about every 2 weeks.
So what I am saying is maybe everyone needs more testing to see if maybe there maybe something else going on. This disease is no fun and it's rare with no cure. God bless all

Berk | @gba | Jul 26 2:33pm

Check out Scrambler. It worked for me.

gallery123 | @gallery123 | Jul 28 8:05am

I am starting a 10 Scrambler treatment soon and I would like to know how it helped you. Thanks,

John, Volunteer Mentor | @johnbishop | Jul 28 8:12am

In reply to @gallery123 "I am starting a 10 Scrambler treatment soon and I would like to know how it..." + (show)

@gallery, While you wait for @berk to respond to your question on how the scrambler therapy worked for them, I thought you might like to scan through the discussions and comments on scrambler therapy by other members. Here's a link to the discussions and comments - https://connect.mayoclinic.org/search/?search=scrambler+therapy

Berk | @gba | Jul 28 3:07pm

In reply to @gallery123 "I am starting a 10 Scrambler treatment soon and I would like to know how it..." + (show)

Good for you Gallery. I became feeling less pain after two treatments. I was able to walk without pain shortly after that. It's over a year now. HOWEVER, both feet remain Numb. Problem is that my balance is terrible now. There is no solution, so they say! I have tried almost everything. They say, try PT therapy. NO balance, no exercises work. I start Acupuncture next week. The long and short of it, NO PAIN! HA! Good luck Gallery.

annie1 | @annie1 | Jul 29 7:01pm

In reply to @strawberry10 "I have peripheral neuropathy I didn't know what it was for a long time. Numbness and..." + (show)

That's very interesting.Thank you for the information. I have lumbar stenosis Which causes spasms and?
Twitching in my calf muscles. Does that sound like peripheral neuropathy ? The surgeon doesn't seem to know. So what's the best type of doctor to go to the diagnosis and what To stop twitching and spasms.