Living with Neuropathy - Welcome to the group

I've not had negative results with Xiidra, but they do leave a bad taste in your mouth. They work well on moisturizing your eyes, but are expensive.

The short time (about 2 months) I used Xiidra, it worked great for my dry eyes, but I had to discontinue since insurance wouldn't cover it.

@parus I agree that life is what it is. It's also what we make it, though many things are out of our control.

Jim

Thanks. I did read up on it a bit. I am just doing a one month trial to see if it helps control the cell loss. Than I will have to battle the insurance company if it does work.

Thank you. I was just diagnosed with neuropathy recently- I have burning pain in both of my legs - a few other things too - not sure if they are related though. I have another appointment with another neurosurgeon on August 31st. I didn't realize their was cell loss with neuropathy.. I have horrible pain when I go to bed at night - and they found a very small sheath tumor on my nerve root - L5 so I'm wondering. This whole neuropathy is confusing because everyone is so different. I have never been on chemo or do I have diabetes. I do have osteoporosis and lower back arthritis & herniated disk. I also have Polycystic Liver & Kidney disease - I had 3/4 of my liver removed about 16 years ago and a kidney transplant actually almost 11 years ago. I have aches and pains sometimes arms and shoulders but just thought that I'm getting older so par for the course..lol - I have many questions.
Thank you so much for sharing!
pk

According to my ophthamologist, these tiny nerves run all over our eyes. They are supposed to have enough density to hydrate the surface cells on our eyes. When they don't, the cells cannot survive. I have been fighting this for years as my neuropathy has become more severe. The burning pain is pretty constant at this point. Everyone experiences neuropathy differently. As my pain release massage therapist says, "fascia and tiny fibers have unique voices in everyone."

I have Diabetes 2, I have been told by my Dr. that I am developing neuropaty in my arms. what can be done to prevent this and help with the pain?

Hello @bugs, welcome to Mayo Connect! We are glad you found us. Connect is a great place to share your health concern, ask questions of other Connect members who have similar health issues and learn what others are doing for treatment. Did your doctor do any tests for nerve damage to see if you have neuropathy?

Hopefully others with diabetic neuropathy will join the discussion and offer what has worked for them. While I do not have diabetes I do have peripheral neuropathy in both of my feet. I'm one of the few in numbers with neuropathy that only has numbness and tingling with no real pain. My doctor told me I fall into the prediabetes category although I don't agree. Diabetes does run in my family though. You can read my neuropathy story and what works for me here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=43#comment-65985

One major thing that I think has helped me is a lifestyle change when it comes to my diet and eating. That's not to say I don't vary once in awhile but I really do try to make eating healthy a priority. A friend shared with me some great words of wisdom on diet:

Every time you eat or drink, You are either feeding disease or You are fighting it.
The choice is Yours....

Keep asking questions and learn as much as you can about your health concerns. Learning will help you be a better advocate for yourself and better know what questions to ask your doctor to help him/her help you.

John

Good morning @bugs, I think John will be quite helpful when he responds. Here are a couple of hints. You can have a skin biopsy now that will tell you how the density of your small fiber network is holding up. You can ask your physician to prescribe a compounded topical to use on your hands, wrists and arms. Depending on the strength needed there can be several components at different percentages: lidocaine, prilocaine, keptoprofen, amitryptyline ... (LPKA) are the active ingredients in mine. You can discuss the efficacy of gabapentin or a similar nerve calming medication at this stage. I take it about an hour before bedtime so that the pain will be eased and falling asleep will be easier. Pain release therapy (PRT) from a qualified masseuse can also help. A good one can find the trigger points and release them. I haven't tried acupuncture because I can't imagine wanting more needles when my hands feel like they are being attacked by needles most of the time. Avoid inviting more tingling/needles pain by noticing what causes it to begin with and then not doing that anymore. My ultimate "soother" is MM....about 50 mg a day starting when I wake up and continuing at appropriate intervals during the day to keep the pain from "ramping up". I just try to stay ahead of it. Hope these hints are helpful....I have been working on the right formula for more than 2 years now. I keep searching, coping, and contending. It is great to interact with others in this discussion group. Let us know how you are doing.

@gailfaith here! Several years ago (about 10 or so) I noticed that in bed, the soles of my feet started to have a different sensation....no pain, nothing negative, but different ...and if anything just more sensitive. I am considered pre diabetic, and my HbA1C done with home test kits the last day of every month, and once in a while at the hospital lab (yes, those numbers are very close if not identical)and range between 5.8 and 6.1. I have never told any of my doctors about the sensensations, but I have come to believe that it could be called a neuropathy! Even though no doctor knows about these sensations, including my geriatrician, he still tests my feet to determine if they are sensitive to touch....and of course they are. SInce I am not aware of it during the day, with or without shoes, I don't want anyone to mess with them and possibly create a problem. In the beginning I had only one small site on only one foot, but now it is the forward part of both soles. I didn't even tell anyone when I was at Mayo for my Dx of Myotonic Dystrophy type 2 in 2013 and last year for the parathyroidectomy! And what might be of interest is that I used to buy those home test kits as a local drug store and they were expensive that way, but still more reasonable than the hospital tests. I saw that you could mail order those kits in a quantity of 10 tests, but at first I figured that they were for a commercial lab where they could use them before they "expired". However, I was told when I called to order them, to ask what the expiration date was and if it was less than 10 months, to ask for a discount. I have never had to do that. SInce I have been doing those HbA1c tests AND all the results are well within a "good and acceptable range", I no longer test my blood sugars daily. Should they start to creep up, I would be more cautious with what i eat, and if necessary WELL before the numbers got out of hand I would consult with my endocrinologist, but I DO send him the monthly results by email and he responds, so he knows that I am "on top of the issue." I used to work in a clinical lab, so I am acquainted with this kind of information. And no, he also knows nothing about the strange feet sensations! Maybe some day I will tell him, but not while it does not bother me AT ALL!!!!!!!.