Living with Neuropathy - Welcome to the group

Hello @goetf4997 -- Welcome to Connect. I have small fiber PN with only the numbness and can tell you what my neurologist told me - there are no drugs, medications or topicals that will do anything to help numbness. They are all geared to addressing the pain from damaged nerves by masking the pain in the brain (my non medical background words ☺). There is a good discussion on spinal stenosis here that you might be interested in reading and posting questions to members with similar health issues:

Groups > Bones, Joints & Muscles > Spinal stenosis- lumbar
-- https://connect.mayoclinic.org/discussion/spinal-stenosis-lumbar/

Hello. I'm Jennifer and I had cervical stenosis because of a ruptured disc and bone spurs along with thoracic outlet syndrome. I have had corrective spine surgery at Mayo, but prior to that I spent 2 years trying to find a surgeon who would help me. My symptoms were a bit unusual because I had pain everywhere in my body caused by spinal cord compression in my neck, but none of the 5 surgeons who saw me would believe that, so I just got worse. During this time, I was in physical therapy treating the TOS and stopped making progress because my neck spasms were causing a lot of issues with pain, numbness and tingling. I would suggest a physical therapy evaluation before you try to do any therapy as I don't know what is safe for you to do, but here is what I did. My therapist bought me some time by gently realigning my cervical spine and trying to release the tight muscles because I kept loosing the lordotic curve. We also worked on chest and back muscles, and realigned my pelvis which would shift. The extreme tightness on one side of my neck kept pulling the vertebrae and increasing the symptoms by twisting or tilting them and even caused vertigo a couple times. Some of what we did was myofascial release work to stretch the tight fascia in the neck and chest. That helps a lot along with getting all of my spine aligned and it takes a long time to work through the layers of tight tissue. I used foam rollers for stretching, and even a wood roller that will give a deep massage to the muscles next to the spine. We would not have been able to do this if there was significant spine instability as it would not be safe. She also used a Dolphin Neurostimulator to calm the muscles which sends a current between 2 hand held devices. It blocks the neurotransmitters and relieves pain and the effects lasted about 4 days for me. There is also a cold laser than she used that would target inflammation. When there was no space left around my spinal cord, the symptoms increased a lot if anything shifted due to a muscle spasm, and I could bend my neck and send an electric bolt down my body. I tried to keep from bending my neck and used a microbead neck wrap tied with a scarf to keep from bending to act like a cervical collar. The neck wrap helped when heated in the microwave to relieve neck spasms and I would do that and lie down. . Arnica gel also works topically to relieve pain and inflammation. I found it very effective, but my best best was to try to maintain good posture and alignment as best I could. I still do that because that is the only way to maintain spine health. Quinine helps with muscle spasms too and it's in tonic water, but that also has a lot of sugar. I lost about 50 % of my shoulder and arm muscle because of stenosis, and it takes a long time to rebuild that. I am improving and still working at it, but I became very weak because of it and everything felt 3 times heavier to me than it should have. I'm close to 2 years post op now and still working on strength and the TOS, but I do not have any spine pain. I hope you find some useful info here. Do you have a spine specialist and are you planning for surgery? If I can be of further help, just ask. You do have to advocate for yourself with this kind of problem which is hard when you are in pain. I'm glad that 5 surgeons turned me down, and I was able to come to Mayo for treatment. I can answer specific questions on that too if you wish. Here is a link about the myofascial release John Barnes methods that my PT is an expert level in. http://www.myofascialrelease.com. Here is the link to the Dolphin Neurostim https://www.dolphinmps.com/ FYI, there is also a Ken Burns documentary about Mayo Clinic airing on PBS on Sept 25th if you're interested. I'm really looking forward to that.

@jenniferhunter
Thank you for sharing your story, Jennifer!

Hi, this is my first post. I have neuropathy in my feet caused by both type 2 diabetes and chemo therapy in 2015. I've had the numbness & pins and needles for a while now, but something new has started. I get this very painful deep itch in the bottom of my foot. It is not on the skin, it is deep in the tissue. It comes with the pins and needles as well but the maddening itch that cannot be satisfied is new. Does any one else have this crazy issue? Thanks.

Hello @deeinpa, Welcome to Connect. Thank you for sharing your diagnosis and symptoms. I have small fiber peripheral neuropathy with only numbness. There is a lot of information available about diabetic and chemo induced neuropathy. Here are a few links you might be interested in reading:

Can diabetic neuropathy be reversed?
-- https://www.medicalnewstoday.com/articles/317923.php

Steps to Prevent or Delay Nerve Damage
-- http://www.diabetes.org/living-with-diabetes/complications/neuropathy/steps-to-prevent-or-delay.html

Treatment induced diabetic neuropathy– a reversible painful autonomic neuropathy
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3057039/

@deeinpa have you discussed your symptoms with your doctor?

John

Thank you for your response John. Yes, I have discuss my symptoms with several doctors as recent as this week. It is the new symptom of the deep itch and pain that I am struggling with. I am wondering if anyone else has this same issue. Thanks again for your response as well as the links.

Good evening everyone. I found out from my x-ray results that I have multi-level arthritis and degenerative disc disease in my cervical spine. I am supposed to hear from a pain management specialist. Don’t know what I’m supposed to do until I see that person.

I have been on steroids for over two years due to the arthritis that has mainly affected my lower half. Hip, knees and feet.

The neuropathy came on with a vengeance while being weened off the steroid and beginning Azathriopine.

Anyone here with arthritis & DDDD?

Hello @beckiw814, I have osteoarthritis in my knees and joints. I also have degenerative disc disease but just have more aches than pains with the exception of the advanced degenerative arthritis in my right knee. I was also on prednisone twice for two occurrences of polymyalgia rheumatica. I think physical therapy helps somewhat. Exercise is key to keeping your joints from getting worse (just my opinion).

Has your doctor mentioned or discussed physical therapy?

John

Hi I am In Canada for the last few weeks I am developing numbness on the feet and hands

@johnbishop They said to see the pain management doc and that he may want me to do physical therapy. I am in so much pain today that the thought of exercise or therapy would be too much right now. I am on so many meds for the arthritis, high BP, neuropathy and high cholesterol that it’s rediculous. Physical therapy, the right kind, has to be next. I thought a hot shower would help me today but it didn’t and now I’m exhausted. I am only 51 yrs old and this just stinks. I hAve always enjoyed my gardening but with my left hand so numb and painful I cannot even do that right now.

My mom passed away in July and I have gone downhill since then. Going to counselor for that but not helping much so far. I do like the counselor so I am hopeful.

Thanks,
Becki