Shared Experiences
In the interest of sharing both information and hope, we have asked PNSN group members to write about their personal PN journeys. These are not meant to serve as a diagnosis or treatment plan. Please consult your medical team for answers to your questions and specific advice on managing your Peripheral Neuropathy.
Please also do speak with others, and do some internet research on specific topics to learn more, including caveats. There is a “Comment” section at the end of each of these pages.
Health Team Recommendations / Research
“I’m going to try Empower Chiropractor for laser therapy, as well.” R.H.
Maybe talk about the bias of doctors and researchers to think that all illness has a purely physiologic basis versus whole body (brain and body). We had Dr. David Clarke talk to us about the effect of stress and trauma in CAUSING seeming unrelated illness. The work of Australian researchers such as Lorimer Mosley on how chronic pain can modify the brain and make the person more sensitive to sensations, perhaps including sensations from PN.” M.F.
“https://www.nih.gov/sites/default/files/about-nih/public-trust/clinical-trials-infographic.pdf” G.P.
“https://www.nih.gov/sites/default/files/about-nih/public-trust/clinical-trials-infographic.pdf” J.V.
Lifestyle
“Focus on healthy lifestyle, lots of exercise, good diet, a good attitude, and try to get on with life.”
“Make your home safe for lack of balance and falling.” B.P.
“I installed extra hand rail on the other side of the stairs. Great investment.” M.B.
“Mine began in my 40’s and has become much worse in my 70’s. My mother had it and I also have autoimmune issues.” A.S.
“I think most people experience variations in symptoms and it is hard to identify reasons.” L.M.
“I think most people experience variations in symptoms and it is hard to identify reasons.” L.M.
“Thanks for ‘all’ everyone is doing there to help!!! I have to share that taking WaterAerobics, Aquasize...whatever ‘water’ classes anyone can take will help their neuropathy and so much else!!! I’m now teaching WaterAerobics!!! I’m 74, have a Stent in my Left Decending Artery, Spinal Stenosis, PN in both feet, broke my back first of May (from a fall in my home) and tore 2 muscles in my knee (meniscus)….I’m teaching a group of 20-24 people at my community Sr. Citizen pool….tell your group to get in the water!!!!” B.M.
Read Rickey Peoples’ experience while researching his neuropathy.
Pain Management
“I tried Nervive without help. Keep your money in your pocket.” E.L.
“Pain is a tool our brain uses to keep us safe.With PN, pain can become chronic and useless since the sensations are not signs of imminent danger and provide no information useful for treatment.” M.F. See Mike Foxworth’s article here.
Exercise/Movement
“I do 10,000 steps per day and really recommend movement and walking.” E.B.
“We installed padded floor mats in the everyday areas of our house to cushion falls.” M.F. See Mike’s article on preparing for a fall in your home.
“Dr. Hoke- Johns-Hopkins- continues to say exercise is key, such as using a stationary bike.” B. C.
“Greg Maassen said that Dr. Hoke, Johns Hopkins, emphasizes exercise is the best medicine.” B. C.
I was DIAGNOSED at 50 with a tiny tingle in a toe. I was overweight by 100 pounds and pre-diabetic. I suspect that the problems with damage to the nerves probably pre-dated the diagnosis by a number of years. BUT NO ONE TOLD ME TO GO TO THE GYM AND FIGHT BACK. That is why FPN needs to start fighting for early diagnosis and counseling not just research. This is a primary care problem not just a high-tech research problem. M.F.
Supplements
“I take MetaNX, a doctor-prescribed food supplement that has all but arrested my diabetic neuropathy. I take no other PN medication.” J.V.
Mobility/Driving/Balancing Aids
“Use a cane. People are amazingly kind when they see my cane. As to worrying about what others might think, as my grandfather would say, “Grow a thicker skin!” Chances are they are not thinking about you at all! B.C.”
When traveling by airline, “Request for TSA Cares Assistance, https://www.tsa.gov/contact-center/form/cares. If your flight is within 72 hours, please call TSA Cares (855) 787-2227 to request assistance. R.S.”
“Don’t wait until it is too late to get assistive driving controls.” H.Z.
“Massaging feet may be helpful to reinvigorate your feet. It may help to massage your feet. Do it in the evening, watching tv. 10 minutes each.” L.M.
“I have CIPD (Chemo-induced). Before I drive, I am using vibrating plates to “open up” sensation
Vibration Plate Exercise Machine: https://www.amazon.com/Belmint-Vibration-Plate-Exercise-Machine/dp/B08P3TT1ZS/ref=asc_df_B08P3TT1ZS/?tag=hyprod-20&linkCode=df0&hvadid=507574166579&hvpos=&hvnetw=g&hvrand=10113411929574389687&hvpone=&hvptwo=&hvqmt=&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=9008192&hvtargid=pla-1185937079451&psc=1″
“AARP, AAA, and Roads Scholar are agencies that specialize in traveling with disabilities.”
“Regarding my reference to hyrdoculators, I discovered that they work well to mitigate PN symptoms if they are used as a cold pack, not a hot pack. So, after soaking the pack in water for 20+ minutes, I put it in the freezer for several hours. It starts out very cold, so I will layer a towel for the first about 10 minutes, then unfold the layers as time passes.” R.D.
Shoes and Footwear
“Get your shoes fitted locally by an experienced shoe store professional, even if you buy on-line. Most people don’t know their proper size and buy shoes that are too small. As feet deteriorate, they spread out. You need to account for that as you age.” J.V.
“I treat every patient as if they have diabetes, even if I have no idea.” Joe Ponsi. See his presentation here.
“I recommends wearing white socks whenever possible to easily detect blood spots caused by puncture wounds or ulcers that you can’t feel.” B.P.
Disability Benefits
Disability benefits paragraph