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?

Hi I have neuropathy and doctor is looking for cause. My ANA blood work came back positive for possible autoimmune disease and I will be seeing a rheumatologist. How does a rheumatologist check for an autoimmune disease? All I know is that I am in pain everywhere and need some answers. I am not diabetic.

Liked by Leonard

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If you have autoimmune disease it is what it is. Finding a cause is not the issue. It is not going to go away. You treat the symptoms and hope for the best. Some things work for some and not for others. It is a crapshoot pretty much. I refuse to take biologics because they cause liver damage. I am not looking to trade one nasty issue for a nastier one. I treat mine all natural. It helps in my case but might not work in yours. Water therapy has been fabulous for my PN. You must exercise because with neuropathy it really is the case of you don't use it you lose it. It feels good also. I take apple cider vinegar, ginger root, Alpha Lipoic Acid, and Turmeric (2-3 grams per day) all in capsule form. I also take CBD with higher THC content. I wish you the very best and God Bless.

Liked by Leonard, cocodab

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@georgiegirl

The concern I have is that evidently my neuropathy source is not known, according to neurological tests I have been given over the last 26 years. It is not peripheral but eminates from my lower back. I have constant electric zinging up and down my legs and feet with intermittent lightning bolt type jolts when I walk. At night the zinging is most prominent so it’s sometimes difficult to go to sleep. I have used gabapentin over the years but it really does not help. I tried Lyrica but it made me loopy and off balance. Surgery has been suggested with the caveat that there is no guarantee of any real relief. I feel like I will have to live with it but am just looking to see if anyone has come up with ideas of ways they use to calm the electricity down. I would appreciate any thoughts. Thank you.

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I also was on Gabapentin but because of fall issues have switched me to cymbalta. Has any one had good luck with that?

Liked by Leonard

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@summertime4

Hi I have neuropathy and doctor is looking for cause. My ANA blood work came back positive for possible autoimmune disease and I will be seeing a rheumatologist. How does a rheumatologist check for an autoimmune disease? All I know is that I am in pain everywhere and need some answers. I am not diabetic.

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@summertime4 — Here are some of the common lab tests done by a rheumatologist.

Common Lab Tests Ordered by Rheumatologists
https://arapc.com/what-is-rheumatology/common-lab-tests/

I have polymyalgia rheumatica (PMR) which is currently in remission. When it is active, I hurt all over and it's very difficult to walk or move around. My PMR was diagnosed by a Erythrocyte Sedimentation Rate (ESR or sed rate) test and a physical examination by a rheumatologist. PMR is not the only health condition that shares the hurt all over symptoms though.

Liked by Leonard

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@gonefishin2743

If you have autoimmune disease it is what it is. Finding a cause is not the issue. It is not going to go away. You treat the symptoms and hope for the best. Some things work for some and not for others. It is a crapshoot pretty much. I refuse to take biologics because they cause liver damage. I am not looking to trade one nasty issue for a nastier one. I treat mine all natural. It helps in my case but might not work in yours. Water therapy has been fabulous for my PN. You must exercise because with neuropathy it really is the case of you don't use it you lose it. It feels good also. I take apple cider vinegar, ginger root, Alpha Lipoic Acid, and Turmeric (2-3 grams per day) all in capsule form. I also take CBD with higher THC content. I wish you the very best and God Bless.

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Can you tell me what CBD oil brand and strength you use. thanks, I need some relief.

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@gonefishin2743

If you have autoimmune disease it is what it is. Finding a cause is not the issue. It is not going to go away. You treat the symptoms and hope for the best. Some things work for some and not for others. It is a crapshoot pretty much. I refuse to take biologics because they cause liver damage. I am not looking to trade one nasty issue for a nastier one. I treat mine all natural. It helps in my case but might not work in yours. Water therapy has been fabulous for my PN. You must exercise because with neuropathy it really is the case of you don't use it you lose it. It feels good also. I take apple cider vinegar, ginger root, Alpha Lipoic Acid, and Turmeric (2-3 grams per day) all in capsule form. I also take CBD with higher THC content. I wish you the very best and God Bless.

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Thank you gone fishin2743 I believe you are right I had been doing water therapy before diagnosed with neuropathy. Then diagnosed with lymphedema and went to lyphedema therapy. Messed my program all up and now does not think I have lymphedema. I too have my marijuana card and use oil and gummies. Sometimes helps. I thought if they find a reason for the neuroathy they could treat that condition and it would hel. I just don't know anything any more except pain and disappointment.

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Hi,

I'm not sure where exactly to put this post, but going to "Home" on websites always works so I will post it here. In the last two years I have had rapidly progressing immune mediated PN affect almost every part of my body. Despite IVIG, Chemo, diets, acupuncture, supplements, Chinese herbs, a Lakota Sioux healing ceremony followed by a special tea, I have yet to stop the neuropathy from progressing (IVIG and chemo have gotten rid of some symptoms).

I would be extremely interested in forming a group of people with severe and/or rapidly progressing neuropathy that meets on-line, say monthly, and chat's about issues related to the illness. It could be "have you tried this pain relief method?" "Is there anyway to get rid of this pain?cramping/numbness?" or "Boy my life has changed." We can decide if we want to use a chat format, or have Skype or other internet calls.

If anyone is interested please private message me.

Liked by Leonard

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@derrygirl

Can you tell me what CBD oil brand and strength you use. thanks, I need some relief.

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I am so sorry you are going through this. i don't get my CBD over the counter. I have a grower in the family who makes it for me. I don't even know what the strength is. I wish I could be of more help.

Liked by Leonard

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@arcticmark

Hi,

I'm not sure where exactly to put this post, but going to "Home" on websites always works so I will post it here. In the last two years I have had rapidly progressing immune mediated PN affect almost every part of my body. Despite IVIG, Chemo, diets, acupuncture, supplements, Chinese herbs, a Lakota Sioux healing ceremony followed by a special tea, I have yet to stop the neuropathy from progressing (IVIG and chemo have gotten rid of some symptoms).

I would be extremely interested in forming a group of people with severe and/or rapidly progressing neuropathy that meets on-line, say monthly, and chat's about issues related to the illness. It could be "have you tried this pain relief method?" "Is there anyway to get rid of this pain?cramping/numbness?" or "Boy my life has changed." We can decide if we want to use a chat format, or have Skype or other internet calls.

If anyone is interested please private message me.

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Hello @arcticmark. If I may ask, are your replying to messages primarily by email on Connect? If so, may I suggest clicking on VIEW & REPLY. Connect is an online community where members post back and forth to one-another, so in a sense, they are already meeting online to chat. The various discussion topics you mentioned could be separate topics, but may also already exist in the Neuropathy group, https://connect.mayoclinic.org/group/neuropathy/. You may also notice that I changed your post to remove your email. This is done to protect your privacy as Mayo Clinic Connect is a public site and sharing your email could open you up to potential spammers.

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@arcticmark

Hi,

I'm not sure where exactly to put this post, but going to "Home" on websites always works so I will post it here. In the last two years I have had rapidly progressing immune mediated PN affect almost every part of my body. Despite IVIG, Chemo, diets, acupuncture, supplements, Chinese herbs, a Lakota Sioux healing ceremony followed by a special tea, I have yet to stop the neuropathy from progressing (IVIG and chemo have gotten rid of some symptoms).

I would be extremely interested in forming a group of people with severe and/or rapidly progressing neuropathy that meets on-line, say monthly, and chat's about issues related to the illness. It could be "have you tried this pain relief method?" "Is there anyway to get rid of this pain?cramping/numbness?" or "Boy my life has changed." We can decide if we want to use a chat format, or have Skype or other internet calls.

If anyone is interested please private message me.

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Hi.
I’m also looking for PN relief. I’m not sure how to get a group or talk time started, but I can suggest you research Mayofascial Release Therapy, or MFR. I’ve had bad neuropathy in my feet from a couple of failed back surgeries and developed CRPS which started this pain.
I’ve had 4 MFR treatments and it has given me a new lease on my life with 75-85 percent reduction in my pain. My pain started to go away after the first treatment!
Then you do self treatments on your own to help heal what ails. You have to put time in to get positive results.
It might not work for everyone but when I read about this on this discussion group, I soon tried the therapy and I go once a week and feel better after each session.
Good luck with this and your other suggestions on this post.

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@mlross4508

Hi.
I’m also looking for PN relief. I’m not sure how to get a group or talk time started, but I can suggest you research Mayofascial Release Therapy, or MFR. I’ve had bad neuropathy in my feet from a couple of failed back surgeries and developed CRPS which started this pain.
I’ve had 4 MFR treatments and it has given me a new lease on my life with 75-85 percent reduction in my pain. My pain started to go away after the first treatment!
Then you do self treatments on your own to help heal what ails. You have to put time in to get positive results.
It might not work for everyone but when I read about this on this discussion group, I soon tried the therapy and I go once a week and feel better after each session.
Good luck with this and your other suggestions on this post.

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@articmark and mlross4508 there is a Myofascial Release Therapy (MFR) discussion on Connect that you may want to join in here:

> 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/

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@etipton9756

I was diagnosed 20 years ago and was put immediately on Neurontin (Gabapentin). I titrated up to 6X300 mg capsules nightly and have followed that successfully since. Now my MD has 'lost' his knowledge of the prescription and cannot find empirical evidence that Neurontin is appropriate for Per Neur. Does anybody know of a licensed specialist in Minnesota that can advise him? My original guy was a neurologist who later retired and died.

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Hello @etipton9756, Welcome to Connect. There is another discussion where your question will receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion where you can meet other members using Gabapentin to treat their neuropathic pain.

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

I'm not familiar with Per Neur. Are you referring to peripheral neuropathy? Can you call your healthcare provider or primary care doctor to see if they can give you a referral for a neurologist?

Here's a search tool for finding a neurologist in your area on the Foundation for Peripheral Neuropathy's website:
https://www.foundationforpn.org/living-well/neurologist-directory/

Liked by Leonard

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@etipton9756

I was diagnosed 20 years ago and was put immediately on Neurontin (Gabapentin). I titrated up to 6X300 mg capsules nightly and have followed that successfully since. Now my MD has 'lost' his knowledge of the prescription and cannot find empirical evidence that Neurontin is appropriate for Per Neur. Does anybody know of a licensed specialist in Minnesota that can advise him? My original guy was a neurologist who later retired and died.

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@etipton9756
What kind of information are you looking for?
Like John mentioned, are you referring to Neuropathy or do you have a Seizure disorder or are you taking it for back or other pain issues?
Jake

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@JustinMcClanahan

Hello @arcticmark. If I may ask, are your replying to messages primarily by email on Connect? If so, may I suggest clicking on VIEW & REPLY. Connect is an online community where members post back and forth to one-another, so in a sense, they are already meeting online to chat. The various discussion topics you mentioned could be separate topics, but may also already exist in the Neuropathy group, https://connect.mayoclinic.org/group/neuropathy/. You may also notice that I changed your post to remove your email. This is done to protect your privacy as Mayo Clinic Connect is a public site and sharing your email could open you up to potential spammers.

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Hi Justin,

My apologies if I suggested something other than what you normally do on Mayo connect. Every once in a while someone posts about say IVIG and a number of experienced people give their thoughts and then the conversation dies. What I'm trying to do and happy to do through Mayo connect is trying to find people who are going through something somewhat similar to me so we could have a chat periodically like a chat group.

I have gone from traveling the world to being confined mostly to my house or in the heat wave we are having three rooms due to my neuropathy making it so I can't sweat. I have pain all of the time in my feet, legs, back, hands forearms, face, teeth, head and am losing my lower tone hearing (higher tone is normal from loud music). My PN has make it so I walk like a zombie and my hands are getting harder to use as they cramp up.

I would like to have a discussion with some people going through something similar and go "Wow! this is hard;" "This has made me disabled in a matter of 12 months, it's a big change;" or "I have to change how I interact with my friends and my wife because I can't do the things we used to do."

These topics take a sense of privacy and getting to know people. Any idea where I can find such a group?

Many thanks!

Mark

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@arcticmark

Hi Justin,

My apologies if I suggested something other than what you normally do on Mayo connect. Every once in a while someone posts about say IVIG and a number of experienced people give their thoughts and then the conversation dies. What I'm trying to do and happy to do through Mayo connect is trying to find people who are going through something somewhat similar to me so we could have a chat periodically like a chat group.

I have gone from traveling the world to being confined mostly to my house or in the heat wave we are having three rooms due to my neuropathy making it so I can't sweat. I have pain all of the time in my feet, legs, back, hands forearms, face, teeth, head and am losing my lower tone hearing (higher tone is normal from loud music). My PN has make it so I walk like a zombie and my hands are getting harder to use as they cramp up.

I would like to have a discussion with some people going through something similar and go "Wow! this is hard;" "This has made me disabled in a matter of 12 months, it's a big change;" or "I have to change how I interact with my friends and my wife because I can't do the things we used to do."

These topics take a sense of privacy and getting to know people. Any idea where I can find such a group?

Many thanks!

Mark

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Hi Mark @arcticmark, I think you can post a message asking members who would like to participate to send you a private message by clicking on your member name and going to your profile and select Send Private Message. That way you could trade email addresses and start your own blog/support group. Have you seen this site? https://www.patientslikeme.com/patients/searches/detail_search

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