Living with Neuropathy - Welcome to the group

I'm hoping your doc "House" was the one who ordered the 3 tesla MRI and it will lead to finding out how to help you. Thanks for keeping us updated.

John

Would like to know how I can continue to live with the extreme Pain attacks of my neuropathy, worst time is when I lay down, what meds do I need?

@teacup - the first thing you need is a good neurologist. There's a mighty long list of medications and treatments for neuropathy, as well as various diagnoses. Let me know what you learn from the neurologist.

How do you know you have neuropathy? Have you tried any medications? I suffer with a lot of peripheral neuropathy pain, so I sympathize with how you feel. I've tried every medication for neuropathy pain that's available, and some that aren't usually used for pn, and I had a spinal cord stimulator implant in June. It helped a lot, but my feet hurt still, and I keep finding that other problems I have are probably neuropathy related. It's a tough disease. I hope you find some relief soon.

Jim

@teacup Lying down is also my worst time. I have nearly worn hole in my sheets from constant moving.

Hello @teacup - I would like to welcome you to Connect along with Jim (@jimhd) and others. The pain can be overwhelming at times and night times seems the worst for a lot of folks. I agree with Jim that if you haven't already met with a neurologist that would be a good place to start. Have you received a diagnosis for your neuropathy?

We are glad you found Connect. It's a good place to learn what other Connect members with similar health concerns are doing for treatments. Keep asking questions until you find an answer - you are your best advocate. Hoping you find some relief soon.

John

It's difficult to maintain a bright outlook with this disease. My worst times are also at night but I've discovered that, for me, some of the discomfort can helped by keeping the feet cool (maybe even cold). I've had better results in putting a hot water bottle filled with COLD water between my feet when I go to bed. I don't know why that works but it does for me. It allows me to get to sleep. There are so many causes and symptoms that are related to this disease. As far as I know, nothing has been found that really helps all the permutations and some that cause other problems. I've only tried gabapenten and it didn't work well for me. I've tried to stay away from regular pain medication other than acetomenaphen (spelling may be wrong but you get the idea). I also have arthritis and that seems to kick up when I'm having a bad night's sleep. I have a family member who also has PN and it has affected bladder and hands too so it evidently is a progressive process and not a good one. I sincerely hope a silver bullet is discovered soon and hopefully one that has no side effects and until then, I'm sticking with my cold hot water bottle.

The only other medication known to me to be helpful for some with NP is Lyrica. I have mentioned Ketamine in past postings but I think it is still experimental for Non Surgical pain.

My neurologist has told me to go up from 300 mg Gabapentin twice daily to 300 x 3. Dosage is important.

Cold is helpful for pain and inflammation in early stages.

@mfobrien36 @parus @teacup @johnbishop - I haven't found a solution that works every night. I have a blanket lifter, which is a good start, as touching the sheets or having any weight on my feet hurts. It's so hard to keep nurses and aides from covering my feet in the hospital. Sometimes it helps to wear socks, as they stop the friction from moving my feet, but other times the socks hurt and barefoot it is. Then there's the issue of lying on my side. Sometimes it works to put them on a feather pillow, other times I hang them off the side of the bed.

Usually, I put Lidocaine cream on my feet, and that helps me get to sleep.

For a time I didn't have a blanket lifter, so I wore slippers with a stiff sole.

We get creative, don't we.

Jim