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?

@kansasgal

Hello John, thank you for your reply. I received NO help from the pain clinic, they told me to ask my neurologist about Lyrica. I told them I had already done that, and Neurologist told me since I was already on 2 different nerve pain medications that we should not throw another one into the mix. It was a total waste of my time and money to go to a pain clinic. My latest symptom is heart palpitations, about 1 per minute. Anyone else experience this while on gabipenten or duloxetine or having to quit Norco 5 cold turkey? Also my BP is extremely high, even with BP meds 2x a day, Neurologist said it is due to the pain, but I was given no idea to ease the pain. I only get out of the house to grocery shop or go to doctor, since it hurts to walk.

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@kansasgal, are you able to ask your doctor why your blood pressure is so high even taking your current BP medications? I would think they would be able to come up with some kind of treatment plan to lower it.

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@kansasgal

I was diagnosed first with 3 foot & leg issues. Surgeon wanted to do 3 surgeries on both feet and legs, tarsal tunnel in ankle, shave bone off ball of foot, and lengthen Achilles tendon. I sought a 2nd opinion & was diagnosed with Morton's Neuroma and had that surgery on one foot but nothing happened to make it better. Went to Neurologist & after several tests was diagnosed with peripheral neuropathy. With the opoid epidemic, GP Dr. took all patients off pain meds, so I quit after 5 years on Narco 5. Luckily, I never took more than 1 and a half pills a day, not because it helped so much with the pain, but I did not want to get addicted. I was referred to Pain Management clinic, where they told me opoids are not indicated for PN. OMG I am in so much pain. I take 8 gabapentin/day, 3 duloxetine, BP meds, etc. I can't live like this, any suggestions?

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@kansasgal I was hoping I could share some experience I have with my mom's issues. My mom broke her pelvis, ankle, and foot when she fell at home, and those injuries caused her tendons to shorten into the same position her foot would be in if you both pointed the toes and twisted the ankle. Muscles work in groups in opposition each other and are attached to move bones like levers, so if the bone breaks, one of those muscles can overpower by pulling the bone out of alignment. If you have a weak muscle (possibly from nerve compression), the opposing muscle takes over. That might recruit other muscles to try to help, and this causes overworking and spasms and pain and it doesn't function normally any more.

My mom is elderly and spent 3 months in a rehab center and walking was painful and difficult after the bones healed. She had physical therapy after that, but didn't walk much because of pain, and her foot then twisted into the position. He had deformed feet also because of the big toes turning outward. We got several opinions because pain was preventing walking and making it difficult to transfer between sitting to standing, etc. One opinion was to fuse her ankle bones so she could hobble for a walk. One opinion was to cut ligaments in her foot. The third was surgery to lengthen her Achilles tendon which is what she chose. The surgeon also moved a few muscles from the side of her foot to attach near the top of her feet near the big toe. She spent 7 weeks in a cast. After this, she was fitted for a brace on the lower leg, but she doesn't want to wear it, and she uses a wheel chair for fall prevention since she has poor balance. It is still painful for her to stand on her feet, so we got diabetic shoes from her podiatrist that have special padding and she can stand in them.

These problems were caused by the injury from the fall and I saw similar problems in my dad after he broke his hip. The injury causes a shortening of tendons and muscles and everything gets locked into the wrong place so normal movement and function isn't possible any more. From your description, it sounds like you have shortening too because a proposed surgery was to lengthen the Achilles tendon.

Have you tried physical therapy? What I would really suggest, is a physical therapist who is also an expert in myofascial release. I took both my parents to my physical therapist who does this and it helped. This would be something you could do to try to avoid surgery. After things are functioning better, then strengthening can help hold the changes. I recommend MFR a lot and here are some things to look at. If at some point you do need surgery, this MFR can make that surgery more successful because things would function better, and it can relieve a lot of pain. I have lots of experience with MFR, and my PT has explained how to do it, so I also self treat at home. I have nerve entrapment from thoracic outlet syndrome (in neck/shoulder) and had a ruptured disc in my neck with spinal cord compression for which I had surgery at Mayo and had a great recovery. If you watch the video, John Barnes explains how issues with pelvic alignment can cause issues in the legs. He developed this type of therapy to release tight tissue and get it functioning normally again and you can have problems like this all over the body. The website has a list of therapists, and you can also call Therapy on the Rocks in Sedona, AZ, and ask for recommendations near you (not all pay to be listed). This is his practice and he has taught this treatment for many years to physical therapists. I hope this give you some new hope for recovery. Let me know if you have any questions. It has done a lot for me.
In case you are interested, here is my Mayo story. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/
Jennifer

Here is some information-
Myofascial Release

Problems that MFR therapy can help
https://myofascialrelease.com/about/problems-mfr-helps.aspx
Benefits of Massage-Myofascial Release Therapy on Pain, Anxiety, Quality of Sleep, Depression, and Quality of Life in Patients with Fibromyalgia
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3018656/
Therapeutic Insight: The Myofascial Release Perspective—Depression John Barnes
https://www.massagemag.com/therapeutic-insight-the-myofascial-release-perspectivedepression-8584/
Use Fascia as a Lever John Barnes
https://myofascialrelease.com/downloads/articles/FasciaAsALever.pdf
Therapeutic Insight: The Myofascial Release Perspective—Sympathetic and Parasympathetic Shock
https://www.massagemag.com/therapeutic-insight-the-myofascial-release-perspectivesympathetic-and-parasympathetic-shock-7709/
Lumbo Sacral Decompression video with John Barnes

Therapeutic Insight: The John F. Barnes' Myofascial Release Perspective—Rufus, the Cat
https://www.massagemag.com/therapeutic-insight-the-john-f-barnes-myofascial-release-perspectiverufus-the-cat-12559/
There's the Rub
https://myofascialrelease.com/downloads/articles/TheresTheRub.pdf
Therapeutic Insight: The Myofascial Release Perspective—Myofascial/Osseous Release
https://www.massagemag.com/therapeutic-insight-the-myofascial-release-perspective-myofascialosseous-release-7597/
Therapeutic Insight Articles
https://myofascialrelease.com/resources/therapeutic-insight.aspx

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I found out I have neuropathy 3 years ago after I had my car wreck 3 months before . And then I had to retrain both my hands and feet what's sensitivity training and balance training. Finally after 6 months of training I could walk and eat normally. More valence training after that and have a psychiatrist come here because it does hurt in your mind. One year later, I was taking a bunch of heavy medication like gabapentin duloxetine and hydrocodone. All the find out that it didn't really work for me because my neuropathy was such a severe case. It was miracle to find a place to treat my feet and hands call neuropathy clinic but now I have it on my head. Remind you I'm only 25 years old. I'm so fortunate that my hand and feet don't hurt right now. In conclusion I could have it worse so I am happy that everything else is okay.

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Hello @crshowers, Welcome to Mayo Clinic Connect. Thank you for the private message. I thought I would share my answer in this discussion so that other members with neuropathy who may have the same questions can share their thoughts or treatment plans.

You mentioned you have been diagnosed with mild peripheral neuropathy in your feet and that all blood tests show no positives of any identified causes. You also mentioned you have been taking a statin for 2 years. This is about the same time you started noticing numbness in your toes on both feet. You also shared a link to a YouTube video by Dr. Michael Johnson, a Board Certified Chiropractic Neurologist where he points out that highest occurrences of peripheral neuropathy are caused by statin use and you were wondering if others have tried his treatment plan.

I have no medical training or background. I have learned the hard way that there are a lot of people out there making money off of those of us with neuropathy. This is just my opinion but I'm very skeptical of his treatment plan. There are a couple of red flags for me. The first being the Better Business Bureau alert on his business/clinic: https://www.bbb.org/us/wi/appleton/profile/chiropractors-dc/optimal-health-stem-cell-and-wellness-0694-1000025371/details. The second red flag is that I am not aware of any successful clinical trial on stem cell therapy for neuropathy. I would be most appreciative if anyone could point me to one. The last red flag for me is the warning by the FDA.

FDA Warns About Stem Cell Therapies
https://www.fda.gov/ForConsumers/ConsumerUpdates/ucm286155.htm

I do think stem cell therapy holds a lot of promise. There is a discussion on Connect that you may be interested in reading and posting questions here:

Groups > Neuropathy > Stem Cell Therapy for Neuropathy
https://connect.mayoclinic.org/discussion/stem-cell-therapy-for-neuropahy/

My doctor wanted me to take a statin to help lower my bad cholesterol and raise my good cholesterol numbers but I opted not to take the drugs because at that time I already had neuropathy and I knew from doing my own research that statins can make it worse. I've tried working on healthier eating and exercise to help with the cholesterol problem. I'm not sure where the Dr. Johnson came up with the statistics that the highest occurrences of PN are caused by statin but I can believe it. Here are some of the sites I've found on the statin causing neuropathy issue.

The implications of statin induced peripheral neuropathy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3103035/
Statin Neuropathy Masquerading as Diabetic Autoimmune Polyneuropathy
http://care.diabetesjournals.org/content/28/8/2082.1
Medication Induced Neuropathy
https://link.springer.com/article/10.1007/s11910-003-0043-8
Sorry for such a long answer. I hope other members will share their thoughts or suggestions and would like to know if anyone has had the stem cell treatments for neuropathy from one of the clinics – did it work?

John

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If you're talking about me but this is not stem cell therapy this is a type of therapy where they put vitamins and minerals between plus we are case of hands and feet then suction cups all the places that mostly hurt which provide a type of vibration and electrical current to wake up the nerves. The treatment has worked out great for me. Before that I really couldn't even walk. I would have pins and needles Sharp and burning pains through my hands and feet all the time. So yes this treatment is worth the time and not stem cell.

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@mandyschneider0

If you're talking about me but this is not stem cell therapy this is a type of therapy where they put vitamins and minerals between plus we are case of hands and feet then suction cups all the places that mostly hurt which provide a type of vibration and electrical current to wake up the nerves. The treatment has worked out great for me. Before that I really couldn't even walk. I would have pins and needles Sharp and burning pains through my hands and feet all the time. So yes this treatment is worth the time and not stem cell.

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@mandyschneider0 — my post was answering a private message sent to me from another member. Are you able to share a little more about where you received the treatment? I looked into one of the neuropathy clinics that used low level laser therapy but it was expensive with zero guarantees and it would take 6 to 8 treatments according to them before I could expect any results.

Thanks! John

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@johnbishop

@mandyschneider0 — my post was answering a private message sent to me from another member. Are you able to share a little more about where you received the treatment? I looked into one of the neuropathy clinics that used low level laser therapy but it was expensive with zero guarantees and it would take 6 to 8 treatments according to them before I could expect any results.

Thanks! John

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It's mineral and vitamin shots in between your feet and hands. Then they put suction cups on where it hurts. Which puts a electrical current like a vibration in through nerves. It takes up to 25 treatments. In my case it only took 10 because I young. The clinic also takes Medicare and Medicaid.

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I have been diagnosed with idiopathic progressive neuropathy. Has anyone had this problem

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I have been diagnosed with a severe case a peripheral neuropathy and the doctor also said it was hitting my small nerves. So I know what it feels like when when someone like you is in so much pain. So I'm so sorry you're in that much pain.

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@anniemae

I have been diagnosed with idiopathic progressive neuropathy. Has anyone had this problem

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Hello @anniemae, Welcome to Mayo Clinic Connect. I also have idiopathic small fiber peripheral neuropathy and I'm sure other members here also have similar symptoms and conditions. Are you able to share a little about your symptoms? Which bothers you the most?

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Each day is different, sometimes my mouth will be numb and now the tingling is worse in my lower legs and feet. I have been on gabapentin and it doesn't seem to help much

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@anniemae

Each day is different, sometimes my mouth will be numb and now the tingling is worse in my lower legs and feet. I have been on gabapentin and it doesn't seem to help much

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Hi anniemae, You're the first person I've 'met' who talks about SFPN affecting their mouth!

My entire face is a nightmare. Even my eyelids burn, sting, and itch. The area around my mouth is very difficult. Even with 4200 mg of Gabapentin, daily, I'm still left with tingling lips and the tip of my tongue feels like I've burned it on something hot.

Gabapentin works fairly well for me. Without Gabapentin my fingertips feel as it needles are stabbing into them, all of my skin feels like a terrible sun burn, and the pain and burning, tingling in my face causes me to just sit very still with my eyes closed.

So I'm lucky that all I'm 'left with' is slight skin burning, and the burning of my lips and numbness of my tongue. The entire area around my mouth is also slightly numb. I cannot feel any food that might be on my face when I'm eating. That's embarrassing.

Since over the years my neuropathies have continued to increase, affecting different organs/systems of my body, I have to seek 'acceptance' of my conditions, in order to achieve some level of sanity.

Every day is indeed different.

Regards, ElaineD

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I wondered if there were any tests at Mayo Clinic that might diagnose the real cause… Or, is this the way that the progression will get worse?? Guess I might as well get used to the idea that this is the way it will be!!! I enjoy hearing from someone has some of the problems. Anniemae

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@anniemae

I wondered if there were any tests at Mayo Clinic that might diagnose the real cause… Or, is this the way that the progression will get worse?? Guess I might as well get used to the idea that this is the way it will be!!! I enjoy hearing from someone has some of the problems. Anniemae

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Hi @anniemae, you mentioned earlier that you were diagnosed with idiopathic progressive neuropathy. Idiopathic means that they could not determine the cause of your neuropathy when they did the testing. Mine is also idiopathic (small fiber peripheral neuropathy). The neurologist told me it was most likely hereditary and I think he's correct. I've been corresponding with a cousin who has it and I'm pretty sure my sister who passed away a few years ago also had it. This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.

Liked by friendz4

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@johnbishop

Hi @anniemae, you mentioned earlier that you were diagnosed with idiopathic progressive neuropathy. Idiopathic means that they could not determine the cause of your neuropathy when they did the testing. Mine is also idiopathic (small fiber peripheral neuropathy). The neurologist told me it was most likely hereditary and I think he's correct. I've been corresponding with a cousin who has it and I'm pretty sure my sister who passed away a few years ago also had it. This short video by Matthew B Jensen Assistant Professor of Neurology, University of Wisconsin that gives a good explanation of how the different neuropathies are diagnosed.

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John, thank you for this information. I have had several tests so will look this information up. Anniemae

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