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.

Yes, I’ve got neuropathy & arthritis in both feet & I’ve struggled for 26 years with it. Nothing has helped the pain,stabbing,numbness,tingling, etc. What do you do for it?

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Profile picture for judygiampa @judygiampa

Yes, I am dealing with Neuropathy had it 1st in my feet from chemotherapy 20 years ago, the Dr. changed my cocktail to different medicines, it never got to bad but, never went away. The second time started 5 years after finishing treatment, this was tingling in the tips of my fingers of my right side, which was also the side my Breast cancer was on. This started 20 years ago, it got steadily worse, I also had had a cervical spinal fusion about 2 years later. I have been told that I have Kidney Disease no symptoms this limits which medications I can take. That was all 15 years ago, it’s been a long journey trying to find out what was wrong. I have torn rotator cuffs in both arms for the second time, the muscles and tendons have retracted down my arms. One year ago the fusion plate was taken out of my back and a rod has replaced it going further down my spine. The original plate was found to have compressed two nerves which is probably the cause of the neuropathy. I am a little old lady that still has a lot to do and still have fun with family and friends.

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Welcome @judygiampa, Thanks for sharing your experience with neuropathy and more. You zest for life shows in your last sentence! I also love my glass being half full vs half empty. It sounds like you have learned how to manage your neuropathy symptoms fairly well. Are you able to share what has helped you the most?

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Profile picture for highdesertdweller @highdesertdweller

I'm in terrible pain now and electric currents from my knee on down. Terrible pressure from numbness on my feet. My knee is now locked up making it hard to stand and walk. I am getting worse EVERY DAY . This is not a slow process for me. I t had been slow, but now the neuropathy is galloping daily. I cannot get in to see a doctor and they have NOT helped me in the slightest. IMO they can take all these neuropathy depts and these high-paid "doctors" and shove them. Anyone with any advice????

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@highdesertdweller I have the numbness and some minor tingling in my feet and have to wear compression socks which remind me how much my feet hate being squeezed all day but I don't think it even compares to the struggles you are going through with the terrible pain and electric feeling in your legs. You mentioned your knee is locked up. Have you had a knee replacement before or is your knee bone on bone?

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Profile picture for tisha01 @tisha01

Yes, I’ve got neuropathy & arthritis in both feet & I’ve struggled for 26 years with it. Nothing has helped the pain,stabbing,numbness,tingling, etc. What do you do for it?

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Welcome @tisha01, You are not alone. Here's a search of Connect showing other members who have mentioned the same symptoms you mentioned - https://connect.mayoclinic.org/search/comments/.

I only suffer from numbness and tingling that has gradually grown worse since my late 40s. There really is no medication that helps with the numbness but if you have pain, there are a lot of different treatments but none of them work for everyone with neuropathy (my non medical opinion). The Foundation for Peripheral Neuropathy is a good place to learn more about the different treatments - https://www.foundationforpn.org/therapies/.

I think one of the members who have similar symptoms mentioned Myofascial Release Therapy (MFR) provided some relief for their symptoms. Here's a discussion on MFR where others have shared their experience:
-- Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
Do you mind sharing what you have tried for treatments?

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Profile picture for John, Volunteer Mentor @johnbishop

Welcome @judygiampa, Thanks for sharing your experience with neuropathy and more. You zest for life shows in your last sentence! I also love my glass being half full vs half empty. It sounds like you have learned how to manage your neuropathy symptoms fairly well. Are you able to share what has helped you the most?

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Received, thank you.

Sent from the all new AOL app for iOS

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I have peripheral neuropathy in both feet and it’s starting to affect my calf muscles. My pain management doctor has started me on Lyrica at 150 mg per day. My research says this is not strong enough and Lyrica only starts to control pain at 300 mg. Does anyone have any input regarding this issue?

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Ive had neuropathy since 2008. I control pain with Gabapentin and Tylenol.
It does ok. Wish they would get busy and find a cure before it kills me.

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Yes. Idiopathic. The pain was getting unbearable. By crazy luck, I found an M.D.(who is licensed to prescribe it) that prescribes suboxone as a pain management substitute for oxycodone. It is a miracle!! I do not need to take increased dosages anymore. I've been on it for nearly a year. It is usually prescribed to control abuse, but is also an effective pain management regimen!!!!

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Profile picture for Ali Skahan @aliskahan

Hi @rabbit10 and welcome to Connect! I want to connect you with @martid, and @grandma41 who have both recently written about peripheral neuropathy. They both had different causes of their diagnosis and can discuss their experiences with you.

How long have you been dealing with peripheral neuropathy?

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@rabbit I have had neuropathy for about 8. years. In the past 3, I have completely lost my balance. I have also experienced increasing pain to the point it's become unbearable when/if not dosed, so I've been on pain management. I have been very fortunate to have found an MD that prescribes suboxone for my pain. It's mostly used to control abuse, but is also effective for some people for pain control. Long story short, it's a miracle drug for me. I had been on oxycodone - the nightmare of ever increasing doses and trips to the ER to manage my pain.

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Profile picture for ceezee1 @ceezee1

@rabbit I have had neuropathy for about 8. years. In the past 3, I have completely lost my balance. I have also experienced increasing pain to the point it's become unbearable when/if not dosed, so I've been on pain management. I have been very fortunate to have found an MD that prescribes suboxone for my pain. It's mostly used to control abuse, but is also effective for some people for pain control. Long story short, it's a miracle drug for me. I had been on oxycodone - the nightmare of ever increasing doses and trips to the ER to manage my pain.

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@ceezee1 I have concern about the future. I have mostly been plagued with the shocks & cramps, not so much now. Fortunately have not had the kind of recurring pain many of you report. Cramps most mornings. A little salt squashes those pretty well.

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