Living with Neuropathy - Welcome to the group

Hi, I’m brand new to this group. Super grateful this little hidden universe actually exists!! I am looking for information on small fiber neuropathy, I have a lot of questions and input too. Thanks much

Greetings @rivermaya34, Welcome to Connect. A little hidden universe......yes, maybe we are. We have now served more than 110,000 patients, caregivers, and patient families. We can do that and fulfill our mission of improving the quality of life of every member. And we can do that because Connect is about sharing. We learn from each other. So let's start with me. My name is Chris.......and I have SFPN Small Fiber Polyneuropathy. Depending on the time of day and the barometric pressure, I am a walking example of tingles, numbness, and pain.

Is that how you are affected by SFN? Have you been diagnosed? Have you had a skin punch biopsy? We need to know more about you, your body, and your attempts at reducing the impact of this condition. Then our moderators and mentors can find a Connect group of several members who would be able to identify with you and share their journey.

Personally, I am a user and supporter of medical cannabis for pain control. AND.....of appropriate exercises, yoga, meditation, and mindfulness to tolerate and even find joy in every day.

Where would you like to start?

May you be free of suffering and the causes of suffering.
Chris

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!

I just spent two hours with Andrew at the Boulder running company in Colorado Springs. He fitted me with a pair of women’s New Balance 940s which have the widest toebox of anything we tried. Wider than the Hokas. Ended up adding a insert for padding and arch support for my plantar fasciitis. I gimped in and walked out. Now my neuropathy is happy and my plantar fasciitis is getting happier. Please post this wherever it needs to go for people asking about shoes. I really appreciate all of the information and suggestions I’ve gotten off of this site. Keep up the good work and good luck to everybody.

Hi Julkun. Yes, It would be worth an enormous amount of money to be normal again. I had a similar experience with the Physical Therapy Dept. at Loma Linda, a respected 7th Day Adventist Hospital in San Bernardino County in Southern California, with a Medical School and Dental School. They actually advertised they could cure neuropathy, but they failed, just like Chiropractor's, at a cost of $6,000+. That was about 4 years ago. But when I read about others problems, I feel very fortunate to have almost no pain, and can still drive at 93.
BillU

Good for you.......so glad you found the New Balance shoes. I still have my New Balance walking shoes. They were my choice for our inn to inn walks when we did between 10 and 15 miles a day. I still have two pair that I also
use. I am sure you know that after 1000 miless all shoes need to be replaced. Even leaving them in a closet invites degradation of the material.

Enjoy the feeling of support on your walks.
Chris

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......