Living with Neuropathy - Welcome to the group

Thank you so much for your story. It is something to think about.
I am a Christian & I pray daily also. I am in so much pain that I am ready to do it. I have no quality of life lately.
My condition has gotten worse. I am also 71 with underlying conditions so that is why I am worried too.
How was your recovery time? That is what I am worried about.
Do you happen to know if Medicare will provide a hospital bed when you go home & did you have to go to rehab?
Thank you so much for your help.
God Bless You
Tigreyes

I can only speak to my situation, but hopefully it will help. I didn’t go to Rehab and am glad, because the surgery and 2-3 hospital days did knock the stuffing out of me, plus I had pain from the incision. I’m not sure your surgeon would want rehab as there you’re expected to participate in vigorous therapy twice daily. I did insist on a referral to Home Care for Nursing (wound management and pain management), PT, and OT. The nurse came the day after I got home. I received home care for 2 weeks, then went to Outpatient PT.
I worked as an Occupational Therapist in Home Care before retirement, so I knew what I needed to get set up at home before the surgery. Everything that follows I bought on Amazon, but a local medical equipment company would have these things.
A hospital bed is not needed, but I bought a Medline Bed Assist Bar with storage pocket (a piece slides between the mattress and box spring, gives you excellent leverage to come up to sitting with ease), a bedside commode (I used at night at bedside for a week, so I wouldn’t have to try to manage the walk to the bathroom and back, during the day, if you have someone to help move it, you can place over your toilet- without the bucket-to make you higher and you have the armrests to help lower yourself onto the seat and push off from to stand up). I also got a shower chair with back (no armrests) and had grab bars put in the tub/shower- vertical at the entrance, horizontal on the far wall (Amazon “designer grab bars” section), and a handheld shower attachment. I also bought a Misslo 8 Pockets Shower Organizer Hanging Caddy with Rotating Hanger. I hung it on the horizontal bar within easy reach of the shower chair. I used this combination to shower for almost 2 months. The OT was very helpful to go over the tub/shower transfers with me.
I also bought 2 large packages of moistened “washcloths”, you can find them in the adult incontinence aisle- I washed up with them, what I could reach, until cleared to shower. They felt really good to freshen up.
I didn’t use anything to help me walk before surgery. Afterward I needed a rolling walker (provided at the hospital), the Home PT was really helpful in teaching me how to use it, then advancing me to a straight cane by the end of 2 weeks. Medicare will pay for 1 assistive device in 3 years, so the hospital arranges for the walker and you buy the cane (walkers are a lot more expensive). I borrowed an adjustable cane. I used the cane for maybe 4 more weeks. I found that with a cane, people notice and give you a wide berth. I didn’t want anybody knocking into me, jostling me in a crowd. The PT also set me up on a light home exercise program.
My husband isn’t much on cooking, so I bought TV dinners ahead of time (there are healthier choices now), bought breakfast bars, protein drinks, etc- everything easy for me to grab or him to bring to me- I spent the first week mainly in my Lazy-boy!

Thank you so much for all your help. I really appreciate it. God bless you for providing me with all the info I wanted. You have helped me a lot. I just want to be prepared of what I need to get.
I hope you are doing ok now. I don't know when you had your surgery but I am wishing you the best.
God bless
Tigreyes

Hey Everyone, my name is Steve. I’m a 35 year old dad that works full time. I am hoping to get some advice as I am very confused given my test results. So here is the scoop. Three months ago I developed what appeared to be a small fiber neuropathy from what I think was a viral illness. It started as itching in my legs and morphed into painful paresthesias in hands and feet, shooting electrical pains in arms and legs, needle like pains legs and hands, and eventually burning feet. All the symptoms clinically point to SFN. It has been brutal-I took the pain without meds for about 2 months-then my feet felt like someone hit the with a sledge hammer. I started sobbing in the bed because the pain wouldn’t stop. It’s been the worst 3 months of my life. That being said-all my tests have come back negative and they have been extensive. Everything glucose related normal-vitamins normal-ANA normal-gluten normal, EMG normal, and whole bunch of other stuff. The only one that was indicative and neuropathy tilt table test-showing autonomic neuropathy. I finally pushed to have a skin biopsy done to confirm SFN. I was 95% sure it would show SFN-it was normal! Not sure how I feel about all of it given I still have the symptoms and they are tough to live with. Anyone have any advice for this situation? One neurologist is ready to peg me with the “idiopathic” label which sucks. The other believes it may be autoimmune. Anyone had their skin biopsy come back negative even though they have all the symptoms? Thoughts? Thank you!

Maybe there's an underlying condition? I always pooh poohed my prediabetes label because my A1C was close to normal but I was overweight most of my adult life and didn't get enough exercise. It's only been the past few years that I've made some changes to eat and live a healthier lifestyle. I've been reading up on metabolic syndrome which can cause lead to a lot of different diagnoses and recently read an article from 2016 that may be what's going on with my idiopathic small fiber PN diagnosis.

"Is small fiber neuropathy fatal? — When those deposits build up, peripheral nerves start to malfunction, and the patient experiences peripheral neuropathy. The disease eventually involves sensory, motor and autonomic nerves, and it is fatal.” — The Fire Within – Johns Hopkins Medicine: https://www.hopkinsmedicine.org/news/publications/hopkins_medicine_magazine/features/fall-2016/the-fire-within

Metabolic Syndrome | NHLBI, NIH: https://www.nhlbi.nih.gov/health-topics/metabolic-syndrome

Hey John-I looked into that also and read about just as you did. I am changing my diet and exercising more. My neurologist believes that is unlikely based on my lipid levels, BMI, and Alc. I thought that was the culprit in the beginning of this crappy journey and started exercising hard and stopped eating carbs. I lost 20 lbs but the neuropathy continued to evolve and change. It did feel better for a little while but it felt like it was not working. Nonetheless I am trying again to change diet and exercise. I hope that helps. There is a part of me that hopes there was an underlying condition for the sake of getting some answers-on the other hand-“wishing” for a disease seems stupid and there are many people in these chats who suffer and would do anything to rid themselves of diseases. Either way I hope I can find some answers as my feet continue to burn and the itchy and needle like feelings in my legs are crappy to live with although I know others who struggle with much worse. Hoping to find answers soon. Wishing you and everyone well.

My medicine has been changed ... now I'm taking a 325 mg Lyrica twice a day, and a 600 gaba if needed in the afternoon; I quit taking Aspirin, Tylenol, etc. I am having more hours where the pain is subdued and tolerable. I am very familiar with the burning feet you described above, and stabbing swords, and swarms of wasps. I wish you the best ... Peggy

Hi there Steve.....I only have one request for your skin biopsy test. What was the percentage of nerve cells in the test sample? Mine was .09 which indicated severe SFN. There are several places they can do the skin biopsy? Were yours only done at the ankle?

Good luck......it just might be worthwhile to double check.
Chris

Hi John, I read the 2016 article and saw myself in that prediabetes scenario. I wonder if there has been any followup to that research? Certainly, it would have gotten a lot of attention by now if it had any merit?

No-pain neuropathy with lightheadedness. Numb feet to ankles. Has anyone experienced this, discovered causes for the lightheadedness, and found treatment for the same? My spouse suffers from this. He has been to a primary care doctor, neurologist, cardiologist, physical therapist, ENT doctor, and podiatrist with no explanations. They ruled out inner ear problems and vertigo. He does not have diabetes, and his blood pressure is stable. The physical therapist suggested that the lightheadedness could be due to imbalance caused by neuropathy. However, he has experienced lightheadedness when sitting in his recliner. He was waking up with cramps but taking calcium and magnesium and an extra magnesium tablet before bedtime, alleviates the cramps. He exercises at the YMCA and walks at the Mall, using a cane for balance. This condition has caused anxiety and depression. He has stopped driving on the freeway because he doesn't want to put anyone at risk.