Nerve biopsy test: Is it done by a neurologist or rheumatologist?

Hi @sunnyflower just a quick moment to chime in on this post to tell you that we here DO "get it". My wife does not use computers, smart phones or pretty much ANY technology, as her brain is wired in such a way as it's difficult for her to do (and even abhorrent). So I keep up with everything here as much as I can and I choose posts and conversations to read to her. You are one person, among several here (or many here actually) who are so inspiring to hear speak about their neuropathy and the suffering that comes of it (and the ways they try to transcend it) that I am frequently compelled to share their stories with her. I find many moments of inspiration amidst the struggles here. I just love it when someone begins to post regularly here as it is so helpful to so many others. I believe the point of being here is to be able to take away tidbits of information and encouragement from others, but I believe it is also a place to come to share with and give what we can to others. It's a blessing that you are here, telling us what you are going though and listening to others do the same.

I am not sure what exactly I am trying to say with this post except I am thankful for this place (Connect) where we can try to give and receive help; life has little hidden gems for us as we travel along it's path, and this forum has certainly been one for my wife and I. Thanks for sharing your stories and experiences, Sunnyflower. And more broadly, thank-you to the others here who are doing the same, it is greatly appreciated! Best, Hank

@sunnyflower what dosage of gabapentin are you on that is helping, I am working up and I still have the burning shooting pains all over my body, not just my legs and feet.

Hi Stephanie, thanks for reaching out! I'm not a good one to ask about Gabapentin. I have such horrible side-effects from this medicine and am only taking a sub-therapeutic dose at 800mg. per day. I feel so drugged w/ this medication. It affects my ability to track thoughts and really does a number on my memory and sometimes judgment. Also, I will think a thought and it will disappear instantly before I can do with it what I need to do. It eventually comes back, but it could in a few minutes or often, a day or so later. I described the vision disturbances it gives me yesterday under the subject of eyes I believe. Why do I continue on it, is because it dulls my pain to a tolerable or barely tolerable level. I hope that helps. Everyone responds differently to medications, even a Tylenol. Unfortunately, you just have to try to know. I've gone up and down on my dose quite a few times. I was started at 100mg. twice daily at first but since have learned that it must be taken 3 times daily, at least for most people I believe. It doesn't have that long of a half-life so thus, take doses closer together in a day. I tried Lyrica but thought the side-effects were worse and it didn't dull my pain as much as the Gaba. BTW, my pain is all over as well. I have several diseases and conditions which are painful besides my neuropathy which is such a wicked disease! Burn/sting/numb....horrible! Unrelenting. I hope and pray this medication will help you and that you find your right dose. For some people, I think over time it needs to be adjusted. I'm shocked to read some are taking over 3,000mg./day!!!!!!!!!! Hang in sister and warmest regards, Sunnyflower.

@sunnyflower

Unrelenting. That's a great descriptive word.

I have the same trouble with having a thought and losing it before I can open evernote on my phone to write it down. I prefer writing to speaking because it gives me time to come up with the word I need or a thought I want to express. If I have to speak publicly, I write exactly what I want to say. I don't trust myself not to say something dumb. I often have to describe to my wife a word I'm trying to pull up. It can be frustrating. I try never to send a message without proof reading it. Too often, when I forget to proof read, I have to go back into the message and edit, or even delete the whole thing. I have several meds I can blame.

I enjoy reading your posts. You have a wealth of knowledge to draw from, and I learn new things all the time. I admire your ability to put on a virtual smile when you write in the middle of tremendous pain. I'm thankful for your gift of encouraging. You're a blessing.

Jim

@sunnyflower, @jimhd, Good evening. I think I can pass the membership test to your special foggy brain club. And mine also started with Gabapentin. Originally prescribed for morning and night, I found that the mornings were really screwy. I could never quite get going. And my brain/memory appeared to be on holiday.

So.....my neurologist recommended nighttime only for gabapentin and that works. It does help with the tingles and needles in my arms, head, wrists, and hands. And with a little help from some medical cannabis, I can get a good night's sleep......unless it's a neuropathic itch night. Now that's a challenge. If I take enough itch medicine I can sleep reasonably well but when I wake up in the morning, my skin is just covered with bloody areas from scratching while I was asleep. Even with the medical cannabis, I cannot seem to make it through the night.

I enclose photos so that you can see what I look like in the morning. Sometimes it is just the upper body and other nights it is legs and feet. Sometimes the toes are locked and I have to separate them manually.

Was I that bad in third grade? Bad enough to end up looking like this? Where did I go wrong?

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

Chris

@artscaping

I'm fortunate to be spared the itching. Sometimes that can be as unrelenting as burning pain. Have you found any low tech solutions for scratching? I remember when the sleep doctor told me I had sleep apnea, he said I have two options - a cpap machine or a tennis ball sewn into the back of a t-shirt. Most of my events happen when I'm lying on my back. Marilyn, my wife, gives me a poke when I'm on my back with my mouth open and air blowing out, waking her up. I was a mouth breather the first 50 years of my life, until I had surgery to correct a deviated septum. All of a sudden I could breathe through my nose! It was an amazing feeling.

Sorry. I digress, as usual.

I hope you have a peaceful rest tonight, with no unconscious self harm.

Jim

@jimhd so was your apnea corrected by the surgery? If not, I just wanted to say that Linda had sleep apnea for the first 39 years we were married. We tried a number of things such as breathe-rite srips and other tricks (escape my memory at the moment) but she always resisted a cpap. Finally about 3 years ago she tried a foam wedge which elevated her upper body (see Amazon link below) and her apnea was gone immediately and has not returned. Just thought I would pass that on if you still have apnea and have not tried this. Hank
https://smile.amazon.com/Wedge-Pillow-Memory-Cushy-Form/dp/B07CG8H7GT/ref=sr_1_5?dchild=1&keywords=wedge+cushion+for+sleeping&qid=1598463270&sr=8-5

@sunnyflower

Unrelenting. That's a great descriptive word.

I have the same trouble with having a thought and losing it before I can open evernote on my phone to write it down. I prefer writing to speaking because it gives me time to come up with the word I need or a thought I want to express. If I have to speak publicly, I write exactly what I want to say. I don't trust myself not to say something dumb. I often have to describe to my wife a word I'm trying to pull up. It can be frustrating. I try never to send a message without proof reading it. Too often, when I forget to proof read, I have to go back into the message and edit, or even delete the whole thing. I have several meds I can blame.

I enjoy reading your posts. You have a wealth of knowledge to draw from, and I learn new things all the time. I admire your ability to put on a virtual smile when you write in the middle of tremendous pain. I'm thankful for your gift of encouraging. You're a blessing.

Jim

@artscaping

I'm fortunate to be spared the itching. Sometimes that can be as unrelenting as burning pain. Have you found any low tech solutions for scratching? I remember when the sleep doctor told me I had sleep apnea, he said I have two options - a cpap machine or a tennis ball sewn into the back of a t-shirt. Most of my events happen when I'm lying on my back. Marilyn, my wife, gives me a poke when I'm on my back with my mouth open and air blowing out, waking her up. I was a mouth breather the first 50 years of my life, until I had surgery to correct a deviated septum. All of a sudden I could breathe through my nose! It was an amazing feeling.

Sorry. I digress, as usual.

I hope you have a peaceful rest tonight, with no unconscious self harm.

Jim