Living with Neuropathy - Welcome to the group

Hi Chris, my name is Karen. It is a real pleasure to meet you and others who share in the invisible - yet very real and painful -struggle. Many people just turn their heads or stare blankly when you mention your condition, or they say, “oh, you’re too young” (a classic one I get a lot that I do not love hearing). Anyways, yes, I have had the skin biopsies done and been officially diagnosed. I’m actually seeing my Dr tomorrow morning to discuss it all further and talk about some other test results besides. It all started (the symptoms, at least) about 4 years ago, unfortunate timing that coincided with a nasty car accident. I’ve been thru the fingers and then some, 2019 being the worst - I had 4 surgeries in the short span of 6 months to try and correct “nerve damage”, one of which was to remove a septic blood clot in my elbow the size of a tennis ball (and no, I’m not exaggerating). I’ve been suffering for 4 years, but the last 2 have been brutal. It is interesting you mentioned being affected by the pressure, as I thought I might be crazy or solo in that area. It all started for me with right hand weakness, which has only progressed and remained unaddressed. I have zero strength in that hand (zero determined by testing) and no feeling in either of my hands. My left elbow (which has the clot/infection) still feels like day 2 post-surgery with the level of pain I have in that arm. The sensation of the drain is still present and I cannot touch that arm due to painful hypersensitivity (actual pain by touch + nervy sensations). It is very frustrating and sleep is hardly in my vocabulary anymore. I have to keep both arms inside compression or taped to stay at bearable level, even the wind makes my skin crawl. I have constant numbness, tingling, burning, stabbing, throbbing and NAUSEATING pains in both my arms. The intensity will fluctuate, but pain stays pretty high. I am nauseous 75%+, so I only eat/drink when I feel I have a window to do so. I am active, but not like I used to be as an athlete all my life. Waking up is not so joyful anymore, but I strive to look for positives and small victories in each day. I’ve been thru a lot more besides and I can talk about that later. I am only 30 years old, 31 in two months, and I don’t want to live the rest of my life barely functioning...I do take Gabapentin, which helps some, and am seeing an upper cervical chiropractor for the next 7 months. I am so so sorry that you are also suffering, but I am ever grateful that you have landed here to help so many others navigate this. Thank you! I wish many pain-free days ahead for you!

Hi Karen, I don't know if it will help you, but I too lost the feeling and strength in my right hand. It began with my pinky finger and continued to the other fingers. Most of my cervical vertebra are self fusing, so I thought I might need cervical surgery to correct the problem. But as usual, my diagnosis was wrong. I was referred to a doctor who had me wear a plastic splint on my right arm while I sleep to keep my arm straight. Feeling and strength came back to my right hand in a few days. My problem was, I bent my right elbow while I slept, and that somehow damaged the ulnar nerve. I no longer use the splint, I just try to get in a position to keep my right arm straight as I sleep. So far that working for me.
BillU

I can barely write this, I am so filled with sadness for your pain. How do you even stay sane???? I too live with pain to the point of nausea. And my arms have been somewhat responsive to Gabapentin, ice packs, and topical cannabis.

I want to send you to your doctor with some good wishes for a solution to finding some comfort and hope for your future. I will wait anxiously for you to check in tomorrow if you are feeling up to it. Do you have your list ready? Are you seeing a specialist?

At your age.....we have to work hard to improve your quality of life. I am 79 and believe that my condition is the result of way too much trauma. Mine were things like falling off horses and spending hospital days in a body sling about 12 inches off the bed. Then there was falling down the mountain and being jumped on from a raft in the ocean which led to surgery and 6 months in a body cast.

I will be here for you tomorrow.
Chris

And by the way.......my longest friendship is with another Karen. We have been connected since we were in first grade when her mother was my teacher. That is 73 or 74 years. Tomorrow......

Hi Chris,
Your stories are so riveting yet so tragic!! I’m so sorry you suffered thru so much pain for so long…that’s terrible but remarkable strength you have! Sorry you have so much nausea too 🙁 I am grateful you can relate tho, please find encouragement in that your struggles are helping others to find peace in their own. Aww that’s so neat about your friend, Karen!! 🙂 what a special treasure she must be…I’m in awe, such blessings.
I have a friend who uses cannabis and has recommended to me to try, but how to know which one? Does it help you a lot? What helps you to sleep? Any daily functioning tips or tricks you could share? I am glad to be ambidextrous so I can switch between hands when one bothers me more than the other.
My neurologist appointment this morning was decent. Bloodwork was all good. He said all 3 biopsies came back positive and 2/3 showed absence of sweat glands (?). He said next step is to determine the cause, but symptoms and damage may be permanent. He sent off saliva for genetic testing and said pending those results would determine next tests. He said to increase gabapentin in the meantime. My main frustration is being able to work, do daily tasks, stay active and enjoy life again. I try not to let my pride get in the way bc I have to remember I can no longer function at normal par…

Thanks for listening,
Karen

Hi Bill!
Oh wow!!! That is very interesting and gives me so much hope! Do you know or remember what the name/type of splint was? I used to work for an orthotics/prosthetics company and still have valuable connections there, so I could probably get one made. I am interested to trial your theory and see how it might work for me, and I’m curious about the intricate design/workings of this splint. Do you think it could still work for me, even tho it’s been so long?
Thank you so much for your encouragement, I’m glad you’re here!
Karen

Hi Bill!
Oh wow!!! That is very interesting and gives me so much hope! Do you know or remember what the name/type of splint was? I used to work for an orthotics/prosthetics company and still have valuable connections there, so I could probably get one made. I am interested to trial your theory and see how it might work for me, and I’m curious about the intricate design/workings of this splint. Do you think it could still work for me, even tho it’s been so long?
Thank you so much for your encouragement, I’m glad you’re here!
Karen

Hi Karen. I just entered brownmed.com and discovered they are carried by Walmart
If we opened the same Walmart page, It's blue, and the 4th item on the right.
BillU

I found the item, thanks so much for sending that info over. Will see what I can do!

I’ve been dealing with polyneuropathy for last few years, I’m interested to find out if anyone has used Ketamine infusion therapy for treating chronic leg & feet pain related to polyneurophy.?