Living with Neuropathy - Welcome to the group

Hello @theresadono, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I just read the patient's story that sounds like it might be similar to what your husband is experiencing.

Excerpt from article below – "My diagnosis changed from benign fasciculation syndrome (BFS) to cramp … I do not have amyotrophic lateral sclerosis (ALS) or multiple sclerosis (MS) and …" – Living Each Day to the Fullest – GBS/CIDP Foundation: https://www.gbs-cidp.org/patient-stories/living-each-day-to-the-fullest/

Have you thought about seeking help or a second opinion from a major teaching hospital or health facility like Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Treatment of peripheral neuropathy in both legs; medications utilized by prescription; non-prescription medications, trouble sleeping through

I’m new to the group as of today. I have poly neuropathy. I’ve had two EMG tests, and I’ve gotten a little worse. Sometimes (right now), the pain is so bad I can’t stand it, but the main thing bothering me is loss of balance. I can be walking across the room, or even standing, and I’ll fall down. I can’t hardly get up when I fall down, which is troubling. I use a cane, except in my home, because everything is level, and I hold on to walls, furniture, etc. It started about 12 years ago as tingling in my right foot, so I went to foot doctors. The foot doctors finally said it was coming from my back, so I went to back doctors. The back doctors said, no, it was my feet. I have cervical stenosis and degenerative disk disease and other back problems, but the neurosurgeon says the PN isn’t coming from my neck or back.has anyone had luck with surgery?

New problem: peripheral neuropathy and aching pain - arms and legs - when I lie down to try to go to sleep. This pain is directly tied to my lying down. Going to Mayo Clinic July 2021 for EMG and other tests.

Hello @bouf1948, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I have small fiber peripheral neuropathy and can understand the balance issues. I've become quite good using the senior shuffle when I first get up from sitting or start walking. So far I don't need a cane but I do use a walker when I have to get up in the middle of the night and use the bathroom.

You might find the following discussions helpful.
-- Having trouble keeping your balance?: https://connect.mayoclinic.org/discussion/having-trouble-keeping-your-balance/
-- Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

Is your neurosurgeon recommending back surgery?

Hello @total99, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. You may find the following discussion helpful.

Neuropathy Pain at Night: What helps?: https://connect.mayoclinic.org/discussion/night-pain-2/

Do you have neuropathy pain during the daytime? Can you give us an update on what you find out at your Mayo Clinic appointment in July?

Good morning, I am new to this group and found it supportive just to open some of the posts here and see myself. This has been such a life changing experience that I knew I needed to find other people who were experiencing the same thing. I am not a patient of the Mayo Clinic and am hoping that does not matter for participation in the support group. I have Sensorimotor Peripheral Neuropathy. It is active in my arms, hands, legs and feet, bladder and I suspect digestive system. Although I have been diabetic insulin dependent for many years, I also have multiple auto immune diseases. I started falling in early December of 2020, dizziness, hands falling asleep when I would hold my cell phone, urinary incontinence and just recently bowel incontinence. I now use a walker and a wheel chair and have gone on short term disability. This came on suddenly and has progressed since it presented itself. Glad to be part of the group. LJarman

I have just moved from the foot numbness/tingling stage to a point where the sharp, severe pain arrives mid-sleep hours. PCP prescribed gabapentin without much success. Now I rub capsaicin on painful areas and get enough relief to get through the night. No problem -- so far -- during the day. Any suggestions as to how to ward off increasing problems with this PN? Age 89 with routine arthritis but otherwise in OK health.

I have noticed that I seem to have worse arm (shoulder to fingers) pain when sitting in a chair with arm rests. IOW both arms simply at my side and resting on the arm rests. I have thought that it might be related to nerve compression around the elbows, but it still happens even if I use a pillow. Obviously when we experience pain we try to figure out what is causing it and more importantly what *not* to do.

Has anyone else had this?

Hello @tonytrollope, Welcome to Connect. Are you able to share a little more about your sharp, severe pain that wakes you up in the middle of the night? Is it in both legs, just one foot or both feet? It sounds a lot like it could be something similar like Tarsal Tunnel Syndrome.

"Compression of some nerves in your ankle can cause tarsal tunnel syndrome. Compression of the sciatic nerve in your back and legs can cause foot pain, too. In both cases, the pressure on these nerves tends to be worse at night, which leads to increased pain. Apr 7, 2021" -- Foot Pain At Night: 8 Causes, Treatment & Prevention: https://www.healthline.com/health/foot-pain-at-night