Living with Neuropathy - Welcome to the group

Good evening @martelig, I would like to welcome you with @johnbishop. Actually, he was my best supporter when I was faced with a diagnosis of SFN (small fiber neuropathy). Even though he has no pain with his SFN, he knows about and has researched the causes of neuropathy and the dozens of ways each of us may find effective and medically therapeutic solutions.

Does your wife do exercises that can strengthen her legs? Before she needs a wheel chair would it be possible for her to use a rollator? I am very happy with mine and feel that it gives me support when going visiting and out shopping. I also have two canes, one with a three-knob base and the other with a single-knob base. I always leave one in our car.....just in case.

Here is another hint that works well for me. I wear Yoga pants with stitched elastic around the bottom to keep me from tripping over wide-leg pants. They also have high-elasticized mid-drifts to avoid struggling with waistbands. About a year ago, I was fortunate to be invited to participate in PT training at Mayo Clinic. I was not only taught how to fall (carefully) but also how to get back up without damage or discomfort.

And finally.....do you have a loving companion puppy dog like a Cavalier King Charles Spaniel? "Roxie" made a lot of difference in my life. Now, I tame and teach tricks to adorable Chipmunks. They even climb up to look in my window when they think I have had enough sleep.

Thanks for reaching out for creative ways to add some joy and a few genuine smiles to your wife's life with PN. You may also enjoy life together just a bit more.

May you share life's happiness.
Chris

severe pain, hard to stand up or move legs. On Lyrica. Just located a used hoyer, which I expect we will need. Thanks for all the responses!

Bought a rollator to move her into the bathroom, but she can't stand now to get into it. She saw a PT, but doesn't have energy to do the exercises,likely due to anemia, asked the dr to check her ferritin which has been on the low side. We have a nice Corgi that helps brighten up our mood, and tries to help whenever she can.

Great effort. @martellg

I love Corgis also. Today I went to our adult therapy center for my first cognitive tests. I had trouble getting my medication dose right, making the correct change for a purchase, and a couple of other tasks. Next week, perhaps I will also need some medication changes.

I was able to toast a piece of bread and select gloves that fit my hands.
I had better practice a bit more on medication doses. Please let me know about your wife's progress.

Chris

FYI, you can rent wheelchairs until your doctor orders a permanent one (googled). Rented one today, which will allow us to take transit and take her to the doctor (next step). Looking at a Hoyer lift next, to be able to move her from the bed, chair, and commode. Purchased a patient transport sheet, which will make moving her easier, if an ambulance is needed. Although I had many years working on an ambulance and in hospitals (EMT, MT), its frustrating, when you don't have the right equipment to take care of someone.

there's an immense amount of peer reviewed and general information on the importance of regular physical activity as we age (speaking as an almost 70 yo woman)
it doesn't mean one has to hit the gym and go crazy with cardio or strength training, but sarcopenia is the technical term for the loss of muscle tone and this is a concern with balance and accomplishing the activities of daily living
I can "Only" walk, as I never liked running and now await a TKR
but walking is fabulous, motion is lotion
those just starting out can do sit and be fit classes in person or on YouTube or other platforms
I can only do one and 2 pound weights, I do what I can when I can
and I am like a hawk on studying my annual lab results--I'm a retired lab tech so I know what I'm looking at; my doc and I had a disagreement on my iron deficiency because I wasn't technically anemic....iron deficiency and other vitamin deficiencies as we age can make us the "Weak and dizzy ones" easily dismissed because we are "old" Not this gal...
Nutrition by adding in the healthiest of choices, Mediterranean diet, DASH diet, eliminating added sugars and processed foods as much as I can to be the healthiest I can
I cannot outrun my genetics and family genes predispose me to a couple of cardiovascular and lipid related issues, so I'm attentive to all that
No marathons in my future but I can keep up with my grandkids and hopefully great grandkids

My nerve pain started about 6 months ago when I broke out in the Shingles and over time it formed blisters and then progressed into scabs falling off and the skin is clearer now and has healed to a point. But I am now left with nerve pain and my skin is painful to the touch.

I've taken Gabapentin for about 2 months but I'm now off of it and the Doctor has currently put me on a new drug called Duloxetine. I've been on it for almost one month, but I still have nerve pain. I am also using Voltaren Emugel Extra Strength together with a heating pad but sometimes it causes the pain to increase.

I am wondering if anyone has tried using a heating pad for their nerve pain and what their experience was. Please let me know. Thank you!

Rachel

Hi there,
My name is Denise and I live in Alberta, Canada. In May of this year I had oral surgery that went sideways. After much literally pain and anguish , I finally got a diagnosis for what is going on.
Post traumatic trigeminal neuropathy.
It is not the shooting facial pain. It is constant pain at the site where my wisdom tooth was pulled on the right side of my mouth . I had been on lyrica for 3 years for neuropathy in my feet. The decision from the oral pain specialist and my family doctor was to increase the lyrica. I have now maxed out on the lyrica. I had slight relief but am now back to constant varying degrees of pain. I could never imagine pain like I have endured in my life. I am being switched to trileptal which I haven't started yet. Apparently I am not a candidate for gamma knife and the radiofrequency ablation in similar cases to mine have not been very successful. I found this group and I am very interested if anyone has the same nerve issue.
I welcome any suggestions, feedback . I have been referred to a neurosurgeon and am waiting to her back.

Thank you:)

Hello, you can call me Jay I have been suffering from neuropathy for many years and it's been so difficult to deal with

I can relate as I have been dealing with neuropathy for 10-12 years now and it’s no fun at all
My life is very hard to handle at time but I’m hoping for a medical miracle one day!