Back again. It's been a while

Posted by newzbug @newzbug, 5 days ago

To update I have Generalized Sensorimotor Peripheral Neuropathy. .. over my entire body. I was shocked when she did the nerve conduction test and I couldn't feel anything over some of my body. The burning feet issue seems to have subsided for the most part. Maybe partly due to my intake of Alpha Lipoic Acid, 600mg, (recommended by neurologist) and the use of a fan to cool my feet when they do feel hot/burning, but the leg pain is sporadically worsening – the feeling of electrical or needle like stabbing pain in my right thigh and left shin. Past couple weeks been having periodic numbness in my hands while sleeping. I just shift my hands and the numbness goes away. as far as the needle pain.. it is absolutely the worst pain I have ever felt in my life. UGH. I just deal with it as best I can.

Q… does anyone have an itchy sensation but when you scratch it you can't tell if the itchiness is being relieved? I know that sounds weird. But I have that on my left upper thigh. It really pi#$es me off that there is no treatment for me. or lots of others like me. So much for the state of medicine. Sheesh.

I have Major depressive disorder and anxiety for longer than the neuropathy so I am already on a couple antidepressants to treat that. I take 2 antidepressants daily, 1 anxiety med sporadically, 1 anti-d for sleep and I guess that makes 4 all together. I am doing some reading all the time on recommendations from medical literature re help for neuropathy. The ala (alpha lipoic acid ) has been mentioned as helpful for people with diabetic neuropathy. It is an antioxidant.

Face305

Try the cold laser therapy. My friends and I have been helped by this for the burning feet, we were having so much pain. Now, it is so light and we are hoping that it goes away completely. We each bought our own from Amazon for $129. Ebay has some also but make sure that if you don't feel any relief with in 1 week that you can send it back where ever you buy it.

REPLY

Welcome back @newzbug, Alpha Lipoic Acid is also one of the group of supplements I take for my neuropathy symptoms (numbness only). I don't think it by itself will help that much but then I'm basing that on my opinion and reading/research. It also makes a difference what kind of ALA you are taking since a lot of the over the counter ALA is 50% synthetic which doesn't do much for you. I take the R-ALA which is the is the form of lipoic acid that occurs naturally in plants, animals and the human body and is responsible for the specific beneficial effects of Alpha-Lipoic acid. (more information here: https://geronova.com/consumers/different-forms-of-lipoic-acid/). I posted my story and what helps me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

You might also be interested in an e-catalog of topics on neuropathy from the Foundation for Peripheral Neuropathy that I received in an email today – lots of helpful information – https://www.foundationforpn.org/wp-content/uploads/2020/02/01.29.2020-Website-eCatalog.pdf

I do have some weird itching sometimes but not sure what causes it…mostly on my arms and some on my calves. I've been making sure to keep the skin hydrated with a moisturizer. I used to use a magnesium lotion but switched to some less expensive stuff but I may go back to using it to see if that helps the itching some.

I can relate to the numbness in the hands and arms when sleeping. Mine happens when I am sleeping on my side and my arm or hand is under a pillow which I think is pinching the ulnar nerve. The numbness goes away a few minutes after I move to my other side.

REPLY

If your leg pain is anything like my arm pain I’m feeling it for you I don’t have itching but I do have pain & when it hits if it didn’t go away I think I put a gun to my head but fortunately it goes away

Liked by newzbug

REPLY
@johnbishop

Welcome back @newzbug, Alpha Lipoic Acid is also one of the group of supplements I take for my neuropathy symptoms (numbness only). I don't think it by itself will help that much but then I'm basing that on my opinion and reading/research. It also makes a difference what kind of ALA you are taking since a lot of the over the counter ALA is 50% synthetic which doesn't do much for you. I take the R-ALA which is the is the form of lipoic acid that occurs naturally in plants, animals and the human body and is responsible for the specific beneficial effects of Alpha-Lipoic acid. (more information here: https://geronova.com/consumers/different-forms-of-lipoic-acid/). I posted my story and what helps me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

You might also be interested in an e-catalog of topics on neuropathy from the Foundation for Peripheral Neuropathy that I received in an email today – lots of helpful information – https://www.foundationforpn.org/wp-content/uploads/2020/02/01.29.2020-Website-eCatalog.pdf

I do have some weird itching sometimes but not sure what causes it…mostly on my arms and some on my calves. I've been making sure to keep the skin hydrated with a moisturizer. I used to use a magnesium lotion but switched to some less expensive stuff but I may go back to using it to see if that helps the itching some.

I can relate to the numbness in the hands and arms when sleeping. Mine happens when I am sleeping on my side and my arm or hand is under a pillow which I think is pinching the ulnar nerve. The numbness goes away a few minutes after I move to my other side.

Jump to this post

@newzbug, @johnbishop Thanks for your return with new information for members and I see John Bishop has sent you off the hunt for more. One thing I did notice that both of you deal with itching. Mine started about the same time I began tapering off an anti-depressant. Itchy finger joins. (My friend said it was a fly of some kind or an early MN mosquito. No way.)

Sometimes it is on the bones of my neck…around my ears, the back of my knee and all around the ankles. The worst part is down my shins which I tend to scratch in the middle of the night. I did talk to my doctor about neuropathic itching and she prescribed Triamcinolone Acetonide Cream. I am guessing it is a steroid. It does work on the big blotches on my shins if I remember to put it on them.

Be safe and protected today. Chris

REPLY
@johnbishop

Welcome back @newzbug, Alpha Lipoic Acid is also one of the group of supplements I take for my neuropathy symptoms (numbness only). I don't think it by itself will help that much but then I'm basing that on my opinion and reading/research. It also makes a difference what kind of ALA you are taking since a lot of the over the counter ALA is 50% synthetic which doesn't do much for you. I take the R-ALA which is the is the form of lipoic acid that occurs naturally in plants, animals and the human body and is responsible for the specific beneficial effects of Alpha-Lipoic acid. (more information here: https://geronova.com/consumers/different-forms-of-lipoic-acid/). I posted my story and what helps me earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985.

You might also be interested in an e-catalog of topics on neuropathy from the Foundation for Peripheral Neuropathy that I received in an email today – lots of helpful information – https://www.foundationforpn.org/wp-content/uploads/2020/02/01.29.2020-Website-eCatalog.pdf

I do have some weird itching sometimes but not sure what causes it…mostly on my arms and some on my calves. I've been making sure to keep the skin hydrated with a moisturizer. I used to use a magnesium lotion but switched to some less expensive stuff but I may go back to using it to see if that helps the itching some.

I can relate to the numbness in the hands and arms when sleeping. Mine happens when I am sleeping on my side and my arm or hand is under a pillow which I think is pinching the ulnar nerve. The numbness goes away a few minutes after I move to my other side.

Jump to this post

my neurologist only recommended the ala because "It's primarily for people with diabetic neuropathy, but it can't hurt". I don't know if I should seek out a new doc who is more info savvy or what. I live in Michigan and really like the hospital I live near, so I kinda want to stay within this area. But Mayo is my support group and I don't know of any others near me. I had a couple of Massive Pulmonary Embolisms in 2018 and so trying to get caught up in caring for all my ills right now. Thanks for the recommendation of reading, I will check it out. The biggest issue with my feet is the numbness in various parts of my feet.

REPLY

Adorable picture! Hang in there.

REPLY
@artscaping

@newzbug, @johnbishop Thanks for your return with new information for members and I see John Bishop has sent you off the hunt for more. One thing I did notice that both of you deal with itching. Mine started about the same time I began tapering off an anti-depressant. Itchy finger joins. (My friend said it was a fly of some kind or an early MN mosquito. No way.)

Sometimes it is on the bones of my neck…around my ears, the back of my knee and all around the ankles. The worst part is down my shins which I tend to scratch in the middle of the night. I did talk to my doctor about neuropathic itching and she prescribed Triamcinolone Acetonide Cream. I am guessing it is a steroid. It does work on the big blotches on my shins if I remember to put it on them.

Be safe and protected today. Chris

Jump to this post

I think some of the itchy spots elsewhere for me are due to a skin condition I inherited from my dad. Seborrheic Keratosis. I have these bumps over most of my back (flesh toned and raised) that get really itchy. She prescribed some steroid cream for periodic use to help with the itching and froze off some of the worse ones. I use a back scratcher cuz they drive me crazy….My husband won['t scratch my back cuz he's afraid he'll hurt me. Enough talking about that, makes me itchy just thinking about it.

REPLY
@newzbug

I think some of the itchy spots elsewhere for me are due to a skin condition I inherited from my dad. Seborrheic Keratosis. I have these bumps over most of my back (flesh toned and raised) that get really itchy. She prescribed some steroid cream for periodic use to help with the itching and froze off some of the worse ones. I use a back scratcher cuz they drive me crazy….My husband won['t scratch my back cuz he's afraid he'll hurt me. Enough talking about that, makes me itchy just thinking about it.

Jump to this post

When I developed CIDP, I almost went crazy from the itching in my feet. It was worse at night and kept me from sleeping. I woukd get up in the middle of the night to cover my feet in ice packs, the only thing that helped. The itching went away when I started IVIG infusions. Try putting an ice pack on your itchy spot.

REPLY

Im only chiming in to 2nd the annoyance and
the drive you out of your mind itching! I went through a miserable bout of Chilblains last year and although it was only with me for 4 months, it was a monster, especially at night. Would not wish on anyone. Ice was my only savior as well.

REPLY
Please login or register to post a reply.