Increasingly Difficult to Accept Peripheral Neuropathy

Gabapentin has started making my legs go out of control and my face horrible faces. I can’t control it anymore.

I feel the same way. I use to be pretty funny and I had so many passions, like, gardening, fishing, hunting, raising husky’s and malamutes, cooking, roller blading, hockey and being with my kids. I can’t do any of my passions other than my dogs ( I can feed them and play with them but the walks stopped 2 years ago). I’m not funny or fun to be around. Sometimes when I have friends over for dinner I have to excuse myself due to pain. You are not the same person. Neuropathy controls what and where and if we can do anything. It’s a terrible disease.
However there are things that may help. Getting a good nights sleep even if you have to take Malatonin or Benadryl to sleep. Try to eat well and keep up with your personal hygiene. You my not feel well but you will at least look good. Forget about getting help from friends and family because “ you look normal”! I think if we turned green and had boils all over our body we may get sympathy or empathy.
You will have good days, weeks and even month. And you will even question if you’re really that sick or sick at all. Then BAM!!! It come back with a vengeance. People think you’re ok because they saw you shopping and laughing. It’s hard even for physicians to grasp this.
Do the best you can when you can. It will only get worse as time goes on. You have to be your best advocate and best friend.
I hope some of what I said helps.

I have neuropathy and restless legs, both. My mom had neuropathy and was on a maximum dose of gabapentin, and I saw what it did to her. She hardly got out of bed, she was so sleepy. I resisted taking it for a long time. But the neuropathy has gotten worse. So here are the things that have helped me.
1. gabapentin My current dose is 900 mg at bed time.
2. Keeping my feet moisturized.
3. Wearing neuropathy socks. There are socks sold that are specially designed for neuropathy pain. They tend to be soft and loose and thin.
4. Neuropathy shoes. Padded and not tight anywhere.
5. Feet elevated at night.
6. Take my medicine on time.
7. Ice packs? My mom did this.
8. Gentle massage, especially the balls of my feet.
I hope this helps.

Talk to your doctor about this as soon as you can.

To frattmaa - You are 200% correct in your comment about neuropathy getting worse over time. It happens and for me, it seems to level off for a while and then takes a step downward. Looking for a benchmark...think back about what you could do 2 years ago, what was the pain level, how was the balance? Doesn't mean the next 2 years will be the same because one thing I've found out, nobody knows. Neuro docs know how it can progress but the time it will is anybody's guess.
So, my wife and I decided we will do what we can today, tomorrow, next week, next month. I share your thoughts and I'm sure so do many others. Ed

"Burning your feet" please explain. And do you know anybody its happened to. Thanks Jules!

What you said helps. Thank you for explaining where you were before and now today. I thought I was the only one that had good and bad days. Sometimes it really is hard to be dining out with friends and your neuropathy kicks in. I like your positive out look. Today is a good day so enjoy it. Maybe tomorrow will be too.
Living with it is an adjustment only we know.
Best of luck.

QUTENZA® (capsaicin) 8% topical system is indicated in adults for the treatment of neuropathic pain associated with postherpetic neuralgia (PHN) and for neuropathic pain associated with diabetic peripheral neuropathy (DPN) of the feet.

Well, read a ton on the subject before spending a dime. There are lots of snake oil ideas out there. Johnmacc

I just feel so bad for all these people, I too have Neuropathy but sorry to say it's just the beginning of my journey in pain. Pins and needles, numbness in both feet. I don't tell anyone because we all know people don't really care if you have a problem. I will try to do the best I can and enjoy each day that I can.
Jack