1. < Neuropathy
Moderator

Living with Neuropathy - Welcome to the group

Posted by Colleen Young, Connect Director @colleenyoung, Jul 14, 2017

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?

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

helennicola | @helennicola | Jul 8, 2019
In reply to @artscaping "@helennicola, Good evening. In reply to your question, I have just moved from California to Minnesota...." + (show)
@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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1 reply
mictim | @mictim | Jul 8, 2019
In reply to @artscaping "@helennicola, Good evening. In reply to your question, I have just moved from California to Minnesota...." + (show)
@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 | @suezq | Jul 8, 2019

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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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jul 8, 2019
In reply to @suezq "suezq: I have had physical & occupational therapy. My neuropathy is in my feet, lower legs,..." + (show)
@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?

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Jul 8, 2019

@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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1 reply
suezq | @suezq | Jul 8, 2019
In reply to @artscaping "@suezq Good afternoon, How unfortunate that you have not been helped by the therapists you have..." + (show)
@artscaping

@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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Physical therapists have helped me in the early stages of my condition following treatment. Afterwards I went on to do more on my own than what they did. Occupational therapists, in general haven’t helped me (my hands), other than one who helped me early on with my shoulder muscles that had shortened & tightened after using a walker for a while.
My chiropractor used MFR on me for a lower back/hip issue. It helped me greatly with quick results.
I hadn’t heard of physical or occupational therapists using MFR techniques for neuropathy. One of my physical therapists would do something called “foot mobilization” with my feet. That was great. Many physical therapists, I research, aren’t familiar with “foot mobilization “.
I’ll check out the website you posted above, later. Thanks!

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grandmaR | @grandmar | Jul 8, 2019
In reply to @suezq "suezq: I have had physical & occupational therapy. My neuropathy is in my feet, lower legs,..." + (show)
@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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Hello!
What about those professionals that work in rehab residences. They help people who have had strokes and can't use their feet and legs. Perhaps they can help???
Ronnie

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1 reply
brendakaye | @brendakaye | Jul 9, 2019
In reply to @retiredteacher "@brendakaye Welcome to the group. My primary problem is Diabetes, but I was diagnosed only three..." + (show)
@retiredteacher

@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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Thank you so much. I’m hoping you continue to find some relief. I think I will order the compression gloves. Also I want to tell you a friend gave me a jar of CBD/THC for the pain in my back caused by spinal stenosis. Will it didn’t help, but after reading several posts here, decided to try it on my hands and feet.WOW what a difference! I had tried one thing after another...meds, lidocaine cream, hot/cold packs. You name it. And my Pcp seemed at a loss. I had terrible burning and numbness in feet, and twitching that drove me crazy. Of course it was worse at night, and I had many sleepless nights. Then, my hands started in with the same symptoms and I was really flustered. So tried the CBD/THC balm at night before bed, and what a difference! The one I use is 175mg of CBD and 175mg of THC. I hope this helps you. As we all continue to share and find relief, may you have sunny days and happy thoughts.

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Retired Teacher | @retiredteacher | Jul 9, 2019

@brendakaye I have tried the creams you mentioned and no help. I have diabetes and have severe pain in the soles of my feet. I would like to try CBD/THC but I don't know what it is. Can I get it over the counter at a drug store or does it require a prescription? I am close to not being able to walk, so I desperately need help with something. Since this helped you, I'd like to try it. I'd appreciate knowing what it is and where I can get it.
Thanking you in advance.
Carol @retiredteacher

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1 reply
mictim | @mictim | Jul 9, 2019

Hi MicTim here! I found that a lotion works well for me and I have tried that all it seems, just trying to find some type of relief for my burning feet and now may the top of my hands. Here is a link for EXTRA STRENGTH "Neurofreezze" as it is made with the CBD/TCH "Cannabis". Go to the following: http//:www.michaelsamazingbotanicals.com, hopefully I did that tech link stuff was done correctly this time. just copy and paste into your web browsr.

I have not yet used the "EXTRA STRENGTH" yet, but I will be getting some next month. Thier regular Neurofreeze works very well for my Burning Soles of both of my Feet, to me it is its weight in gold!! I have found a few creams that work for 5 to 30 minutes or so, but not as long or as cold as that lotion.

I was told by Kate Grreen herself that it is not made for the public yet, but if you ask for it ? But I do not know about diff. state issues. They only charge me something like $3.00 for the shipping. I use the there regular Nerufreeze lotion at least 2 times per day and sometimes 5 or even 6 times per day as/if needed. Even when it works well, a few nights I have to hold my feet out of the blankets to get to sleep quicker, yet it is the best lotion that I have found. I have tried many CBD/TCH lotions and even used some sub-lingual types as well. The topical method works best for me as I can pour it on as much as I want. When taking THC/CBD orally "less is more". I do not use anything orally any more, I just use there topical lotions, as for me that is best.

From before: ""Of course it was worse at night, and I had many sleepless nights. Then, my hands started in with the same symptoms and I was really flustered. So tried the CBD/THC balm at night before bed, and what a difference!"" The same here as the PN has now started progressing to my hands which is very disheartening to me, as I have enough of other issues to deal with. Nothing better than the Golden years! LOL

Anyway, I hope this helps you and others out, as It hurts my heart to here some of these PN stories. I have asked the Lord many times for healing on this PN Issue and at least He helps me and gives me peace within for one day at a time. I am moving forward with the best that I can and what I have to work with. I just try to keep very busy mentally, listen to soft peaceful music and sometimes a movie which really helps me a lot!!

Have the best day as possible! MicTim

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