Living with Neuropathy - Welcome to the group

Hello, I have Small Fiber Neuropathy, and have been put on Low Dose Naltrexone. I'd like to hear from other people with this condition, and how they cope. Thanks, Peggy

Greetings @peggioh, welcome to Connect. It looks like you are reaching out for information that will help with the symptoms of SFN. I also realize that Naltrexone has shown some encouragement for folks with pain and fatigue. Are those symptoms you have experienced with SFN? Have you had relief from the dosage you are currently taking?

On another note....would you mind letting me know how your SFN was diagnosed? Did you have a single-skin punch biopsy? If so do you recall your "score"? Mine was .09 which isn't comfortably strong. I was diagnosed in 2013 or 2014. Since then I have explored multiple treatments and medication options.

Amitriptyline was my first nighttime medication and it sure helped. I also tried Gabapentin in the morning but my body reacted with dizziness. So I have moved 600 mg of Gabapentin to night-time to help keep my hands from having tingle tangles and numbness. And over the last four years, I have been using Duloxetine (Cymbalta) in the mornings to reduce my anxiety. As you know anxiety creates pain and then the pain turns right around and creates more anxiety. I am grateful to Duloxetine for making my days calmer and therefore less painful.

My days always have some exercise activities.....everything from stretch Yoga, to balance and stability training and of course, my frequent 2-mile river walks when the weather isn't unwelcoming.

Have you been able to keep your body moving? Does that help with your discomfort?
What activities do you enjoy?

And finally, my pain control has been through the courtesy of medical cannabis which I have been learning about and experimenting with for 10 years. You have to become your own prescriber unless you can receive pharmaceutical assistance at a dispensary.

I almost forgot about my experience with mindfulness practice and meditation. It takes some practice. However, when you can have private and meaningful chats with yourself, then you have an opportunity to focus on self-compassion and well-being.

Does any of this sound doable to you?

May you be free of suffering and the causes of suffering.
Chr

Good evening @deb1972 Now that's a question I have never been asked. When my feet are numb and the bottoms feel like they are covered in leather....I might feel like my feet take up more space. I wouldn't quite say I am walking above the floor. The reason feet are so important is because of driving. The only way I can continue to drive is by having my feet treated to an MFR therapy twice a week. I also do "Legs up the wall" every day just to make sure I am not holding fluid down there.

Happy Halloween!
Chris

This is the description I always used when my burning feet were worse- like I had them in a bucket of ice water. Perfect description.

I did, and in my 1st 2 months of my sudden, crippling, idiopathic PN, it was torture. Both swings in extreme temperature feelings were awful, but the “frozen to the core” was no doubt the most painful. My nurses were befuddled that I’d always be in extra socks and gloves while trying to sleep and then find me stark naked with the sheets kicked off. This hospital then nursing/rehab home couldn’t get me an appointment with a proper Neurologist until week 4 of my 7 weeks of being admitted, and he started the Gapapentin. We started low and worked up to 800mg 3x a day, and 6 years later, I am just so grateful. Yes, I have little flare-ups, mostly of the frozen feelings, but I stay prepared with socks and gloves on hand, in my car. I am ever so thankful PT helped me learn to balance, strengthen, walk, and DRIVE again (!) so I control the heat and air I need to help my feet and hand temps as much as I can. I have to try my best to avoid extreme temperatures outside, and control what I can inside, especially water temps for showers and dishes. I’ve had to walk out of restaurants and even an ER once because of temps that even a “normal” person couldn’t comfortably tolerate. But overall, Gabapentin has just been a Godsend for managing my internal thermostat (like Chris said, your external temp feels normal to others) Gabapentin doesn’t offer the same relief for everyone, but you may want to ask your doctor about it if you haven’t already. For me, it took several weeks to kick in.

Have been on gabapentin for years now and it's hardly any help at all anymore. I'm glad it's working for you.

Good afternoon @deb1972. I just thought of an experience I have and want to share it with you. You feel like Gabapentin isn’t doing its job anymore. Have you ever thought that perhaps your tolerance of day in and day out pain and discomfort has increased. Yes, that’s right…..increased not decreased. I think I have finally accepted a certain level of pain and only begin to be concerned when the pain rises above that tolerance level. And now if we think about it,…..it is possible that the Gabapentin does work at a certain level but doesn’t reach up higher as our SFN progresses.

Just something to think about. There are many mysteries to be discovered.

Another thing I do and maybe others is to become fearful of the future. That creates stress, worry and concern. If we think about it…..we live in the here and now….not in the future. So, perhaps we can focus on taking care of the current reality and leave the future until we arrive there.

Mindfulness practice also promotes the idea of equanimity. The best description I have is one that simply says we need to ride the waves….up and down, up and down, etc. etc. You may want to google that concept and let me know what you think. I would like to hear your interpretation.

May you have happiness and the causes of happiness.
Chris

Hi Joyce. Welcome to the group.

Hello... I'm Geoff and the medical people have decided I managed to inexplicably become tangled up into an astonishing collection of adjectives: inflammatory idiopathic autoimmune axonal sensorimotor neuropathy with autonomic neuropathy. Whew! I have to carry that around on a little card because I can never remember it. Three years in and I'm beginning to think they're throwing spaghetti at the wall hoping something will stick. But I do have to admit every day is a surprise! Nice to find you!

Welcome Geoff @gmehl, That is certainly a mouthful to remember. I only having to remember idiopathic small fiber peripheral neuropathy but I do get to add to that 🙃-- polymyalgia rheumatica, primary aldosteronism, lymphedema and a few others that come with old age. It does help to keep a smile on your face. We are definitely glad you found Connect!

There are a lot of different discussions on Connect in the Neuropathy group that you might find interesting if not helpful. You can also search for topics in the group search box. Here's a list of the discussions in the group.
-- https://connect.mayoclinic.org/group/neuropathy/

How long have you been on your neuropathy journey? Found anything that helps some?