Living with Neuropathy - Welcome to the group

Welcome to the Neuropathy group.
This is a welcoming, safe place where you can meet other people who are dealing with neuropathy. Let’s learn from each other and share stories about living well with neuropathy, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by volunteer patient Mentor John (@johnbishop) and fellow members when you post to this group. Learn more about Moderators and Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Let’s chat. Why not start by introducing yourself? What concerns would you like to talk about?

Also I was wondering if anyone has experienced relief from other than medication? Do compression gloves help?

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I have had peripheral neuropathy in my feet for at least 10 years and probably about 5 years ago it got to the stage where I couldn't walk bare foot on our outside paths which are exposed aggregate concrete or even on our lawn. I always had to have shoes on because of the extreme pain. I initially was put on Lyrica which after about 6 months I stopped taking because of nasty side effects. I then changed to Endep (amitriptyline) which helped but still had to wear shoes outside. About 9-10 months ago I read about Mindinsoles (www.mindinsole.com)which supposedly helped people with back pain. Ever since I started wearing Mindinsoles in my shoes I have not taken any medication and can walk on grass and rough surfaces without shoes with some soreness but not the extreme pain I used to get. I suggest checking out the website for info but purchase on eBay if it interests you. I bought 2 pairs for about $23.00 Australian including freight.

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@brendakaye

I have just joined this group. I am 70 years old and have had diabetes for about 30 years. I have had neuropathy in my feet that has gotten progressively worse over time. Gabapentin does not seem to help but the pain has been tolerable. But lately I’ve started having terrible pain in both of my hands. It seems to be worse at night and is becoming intolerable.

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Hello @brendakaye !
Welcome to our group! Although we are not medical people, we are all experiencing neuropathy of some kind, to some degree.
We will share our stories with you.
Hopefully, we will be able to share something that will help you.
If not, we are still here to lend an ear and thought.

I just developed neuropathy in my feet a year ago.
Over the last months, it has gotten worse, especially in my right foot.
I use a cane and brace.
Doctors do not know WHY it developed since I do not have any known condition that usually contributes like diabetes.

For me, I find that massage helps!
I have the therapist work on my legs and feet.
It feels great!
Thank goodness I don't have pain!

Happy 4th of July,
Ronnie (GRANDMAr)

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@brendakaye

I have just joined this group. I am 70 years old and have had diabetes for about 30 years. I have had neuropathy in my feet that has gotten progressively worse over time. Gabapentin does not seem to help but the pain has been tolerable. But lately I’ve started having terrible pain in both of my hands. It seems to be worse at night and is becoming intolerable.

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Hello @brendakaye, I would like to add my welcome to Connect along with @grandmar and other members. I have had small fiber peripheral neuropathy for 20+ years but only bothered to get a diagnosis a few years ago. I posted my story earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

I'm glad you found us and are searching for answers on how to help your neuropathy. Here is another discussion that you may be interested in joining:

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

You mentioned that you also have diabetes. Have you been able to keep the diabetes under control?

I'm tagging @retiredteacher @artscaping @jenniferhunter who may also have some suggestions for you.

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@brendakaye

I have just joined this group. I am 70 years old and have had diabetes for about 30 years. I have had neuropathy in my feet that has gotten progressively worse over time. Gabapentin does not seem to help but the pain has been tolerable. But lately I’ve started having terrible pain in both of my hands. It seems to be worse at night and is becoming intolerable.

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@brendakaye Welcome to the group. My primary problem is Diabetes, but I was diagnosed only three years ago. I am 75 years old and was very healthy until that diagnosis. I do not take any meds for the diabetes—diet and exercise. Of late I have had a hard time with the soles of my feet. I feel as if I'm walking on shards of glass. It's very uncomfortable trying to do anything. Some days are worse than others. I diagnosed myself with neuropathy. I would not take any meds for that. Meds have too many side effects that cause other problems for me. I also have arthritis in my hands. They are always sore and swollen. I will ask about my feet and hands when I go to my endo appointment in several weeks. I understand how hard it is to go 24/7 with this kind of pain as do others on this forum. I have read the posts and most people have found little that really helps. I don't know what the answer is, but maybe my endo can shed some light. Do you notice the joints in your hands are swollen? If you warm your hands does that lessen the pain? Have you seen your doctor for your hands?

I wish I could tell you things will improve, and they might, but your doctor needs to know what's going on.
Carol @retiredteacher

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@brendakaye

Also I was wondering if anyone has experienced relief from other than medication? Do compression gloves help?

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@brendakaye I am sorry for the pain you are having in your feet and hands. You asked about whether compression gloves help with pain. My experience has been that they help a great deal. While I still have pain while wearing compression gloves, the pain worsens considerably as soon as I take them off. I have tried 3 different brands and the ones I like best are Isotoner. They provide adequate compression yet they are not difficult to get on and off. Some of the others are difficult to get on and especially off. That just contributes more to your pain.

I also use ice and heat to help with pain. They just mask my pain, but that’s still a relief. I’ve tried half a dozen creams, but unfortunately none have helped.

I hope you will find something that helps with your pain.

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@brendakaye, Good afternoon. I have just reread your post about the pain you are experiencing in your hands. Am I right in assuming you have only pain and no numbness or tingling? Pain in my arms and hands was the presenting symptom that led to my cervical surgery. After the recovery period, I was great for a while and then the pain accompanied by numbness came back. X-rays and an MRI demonstrated visually that there was one nerve at the bottom of the surgical area that was so bruised and damaged, it could not recover within the years that I may have left. We age more quickly than nerves can become healthy again. They are not like bones. They heal slowly and the pain appears to remain during that process.

Like you….I began taking gabapentin. It did not work during the day and so a change was made to take it an hour before bedtime. That change was quite significant in permitting restful sleep. As you can see, I still had the daytime to figure out. So, I launched my search without the daytime gabapentin. I tried the Biofreeze product and an ointment created to my neurologist's specifications at a compounding pharmacy. That was reasonably soothing for perhaps 20 minutes. And at about $80 for a small amount and with 4 applications a day, it might last 2 weeks.

Keep looking I told myself and dove into Essential Oils. Same thing…..very modest staying power. What's left you ask and the answer was medical cannabis. I experimented with these "new to me" topical medications for a year…….complete with Uncle Joey's homemade ointment, to a CBD roll on that seemed very familiar to the short-lived lidocaine compound. Finally, with the guidance of James at the dispensary, I was introduced to Papa and Barkley's 3:1(CBD/THC balm. Just enough THC to activate the CBD. I have one in my purse, one on my nightstand and six backups in the drawer. I never want to be without it again. I use it during the day as soon as I sense the pain increasing. It simply works …… for me. And we are all different but this is worth a try. There may be other balms on the market and either available to all or only sold with the appropriate license depending on your state. Good luck with your search…..you may have an entirely different experience that I did. Update us occasionally so that we can all benefit from your trial and error journey. Be just as free of suffering as you can be today. Chris

papaandbarkley.com is the site.

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@penadr

I have had ideopathic peripheral neuropathy almost 30 years. It affects both legs, calves down. I have tried just about everything I hear about but nothing has helped. I also have PKD & PLD but haven’t needed treatment for them. I take gabapentin, methadone, & amtriptylene for pain but have a lot of break thru pain. My toes are the worst. I am always looking for ways to help the pain. I use lidocaine patches when needed.

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Hi Penader ,
i have idiopathic small fiber polyneurpathy from 4 years now and aftrer the doctor tried a lot of medications with me with no effect . He refferal me to the pain clinic and i am taking CBD capsules twice a day and the pain get controlled .

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@artscaping

@brendakaye, Good afternoon. I have just reread your post about the pain you are experiencing in your hands. Am I right in assuming you have only pain and no numbness or tingling? Pain in my arms and hands was the presenting symptom that led to my cervical surgery. After the recovery period, I was great for a while and then the pain accompanied by numbness came back. X-rays and an MRI demonstrated visually that there was one nerve at the bottom of the surgical area that was so bruised and damaged, it could not recover within the years that I may have left. We age more quickly than nerves can become healthy again. They are not like bones. They heal slowly and the pain appears to remain during that process.

Like you….I began taking gabapentin. It did not work during the day and so a change was made to take it an hour before bedtime. That change was quite significant in permitting restful sleep. As you can see, I still had the daytime to figure out. So, I launched my search without the daytime gabapentin. I tried the Biofreeze product and an ointment created to my neurologist's specifications at a compounding pharmacy. That was reasonably soothing for perhaps 20 minutes. And at about $80 for a small amount and with 4 applications a day, it might last 2 weeks.

Keep looking I told myself and dove into Essential Oils. Same thing…..very modest staying power. What's left you ask and the answer was medical cannabis. I experimented with these "new to me" topical medications for a year…….complete with Uncle Joey's homemade ointment, to a CBD roll on that seemed very familiar to the short-lived lidocaine compound. Finally, with the guidance of James at the dispensary, I was introduced to Papa and Barkley's 3:1(CBD/THC balm. Just enough THC to activate the CBD. I have one in my purse, one on my nightstand and six backups in the drawer. I never want to be without it again. I use it during the day as soon as I sense the pain increasing. It simply works …… for me. And we are all different but this is worth a try. There may be other balms on the market and either available to all or only sold with the appropriate license depending on your state. Good luck with your search…..you may have an entirely different experience that I did. Update us occasionally so that we can all benefit from your trial and error journey. Be just as free of suffering as you can be today. Chris

papaandbarkley.com is the site.

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Which state do you live in that you are able to purchase Papa and Barkley products? I am wondering if a medical professional is able to dispense their products in all states.

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@helennicola, Good evening. In reply to your question, I have just moved from California to Minnesota. I don't know if P and B is on the medical cannabis list in Minnesota. I have family and friends in California with access to the medication. I hope you can have a chance to experience some relief. Chris

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@artscaping

@helennicola, Good evening. In reply to your question, I have just moved from California to Minnesota. I don't know if P and B is on the medical cannabis list in Minnesota. I have family and friends in California with access to the medication. I hope you can have a chance to experience some relief. Chris

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thanks Chris, we will be visiting a son in Ca. in Nov. so we’ll have to wait til then I guess.

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@artscaping

@helennicola, Good evening. In reply to your question, I have just moved from California to Minnesota. I don't know if P and B is on the medical cannabis list in Minnesota. I have family and friends in California with access to the medication. I hope you can have a chance to experience some relief. Chris

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Hi Helennicola: I have used CBD/TCH tinctures and pain lotions made in California by Michaels amazing botanicals. I have use them for insomnia and ptsd. i heard that they will send it as long as you email a mailing label. MicTim

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suezq: I have had physical & occupational therapy.
My neuropathy is in my feet, lower legs, hands & lower arms. The Occupational therapists, in particular don’t know how to help. In general the Physical & Occupational therapists are trained more for helping patients with broken bones, injuries, recovery from surgery, etc. They aren’t trained for working with patients with chronic neuromuscular conditions. I’ve asked my doctors if they can help me find therapists who know how to help patients with conditions such as mine. Everyone seems “clueless”.

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@suezq

suezq: I have had physical & occupational therapy.
My neuropathy is in my feet, lower legs, hands & lower arms. The Occupational therapists, in particular don’t know how to help. In general the Physical & Occupational therapists are trained more for helping patients with broken bones, injuries, recovery from surgery, etc. They aren’t trained for working with patients with chronic neuromuscular conditions. I’ve asked my doctors if they can help me find therapists who know how to help patients with conditions such as mine. Everyone seems “clueless”.

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Hi @suezq, Welcome to Connect. I see that you are a new member and have also posted in the discussion "Anyone been diagnosed with CIDP? It's very rare". You might be interested in the following discussion which I think is the kind of therapy you might be looking for.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Are you able to share a little more about your diagnosis and the treatments you have tried so far?

Liked by Jennifer Hunter

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@suezq Good afternoon,
How unfortunate that you have not been helped by the therapists you have seen. You have described your discomfort precisely and it matches the areas where I need help. I would like to recommend that you take a look at the following link. It explains the process of myofascial release therapy, MFR. I have been receiving this gentle and helpful treatment weekly for a couple of years now. It relieves my body discomfort especially in arms, wrists, and neck on the upper side and knees, ankles and feet on the lower side. I think all expert level MFR therapists are also PTs (physical therapists) or OTs (Occupational Therapists) or both. There is a link to the registry in the article. Good luck to you. Check back if you run into a puzzling statement or two. Be happy today…find the joy within you. Chris

https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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