Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

Interested in more discussions like this? Go to the Neuropathy Support Group.

@lorettogibbons

I have idiopathic small fibre neuropathy and have a chronic itch has anyone any ideas to calm this itching????

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As @johnbishop referred to existing discussions I’ve followed, I’ll add that my dermatologist recently suggested over the counter Lipikar lotion. I can’t tell you how pleased I’ve been. I bought mine from Amazon.

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Thank you I will try it😊xx

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@fredkerns

I take 600 mg of gabapentin and 220mg of Alive before bed and it helps alot.

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Hi, how long have you been taking Aleve?

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I have very bad peripheral neuropathy that started in my feet years ago and now affects lower legs and hands. I am not now or ever have been diabetic. One doctor put me on the max dosage (about 2,000 milligrams) daily which did not help at all. I was using Voltaren Crème which helps some. Now new Dr has put me on Pregablin (100 mgs.) daily at night and it seems to help very well so far. I still put the Voltarin crème on at night as well. Hope this helps someone!!

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I work with a Provider in Great Falls MT. I sent a referral for our patient PK. He has tremors. I recieved a call from a Jess and that person called from a total different area code, wanting to know where the referral needed to go. I believe with tremors that should be Neurology. I will upload the referral and notes to this site.

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@ragina

I work with a Provider in Great Falls MT. I sent a referral for our patient PK. He has tremors. I recieved a call from a Jess and that person called from a total different area code, wanting to know where the referral needed to go. I believe with tremors that should be Neurology. I will upload the referral and notes to this site.

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Hi @ragina, please note that I removed the attached files and edited the patient identifying information from your post to protect their privacy. Please check your private messages.

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@lorettogibbons

I have idiopathic small fibre neuropathy and have a chronic itch has anyone any ideas to calm this itching????

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Is the itch deep inside your foot, hand, etc., not on the surface? That drives me nuts! THC works for me in that I forget about the itch as soon as I can calm down and be still for awhile.

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Yes it is there's no rash I get really bad red blotches on my cheeks too ?what is THC MIKEY??

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@bettyg81pain

Do any of you take Pregabalin? If so, what strength? amount and how often? Thanks

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FYI -I was prescribed Pregabalin ( Brand name Lyrica) when I first developed non-diabetic PN and found I had to slowly increase dosage to 50mg a.m. and 75 mg p.m. as per Doc's advice.
The result was that there was not total relief but helped some.
The downside was the side effects in my case Nausea, swollen feet and Jerking/shaking as I was about to go to sleep, very unpleasant.
I decided to put up with the intermittent pain rather than the side effects from Pregabalin.
I down-dosed under Doc's recommended timing etc and unfortunately the side effect from down-dosing was a very uncomfortable attack of Diarrhoea and dehydration, ending up in hospital for a night on a saline drip.
I suggest you do a bit of research before trying Pregabalin as it seems to be able to apparently treat a variety of medical problems.

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@mikeythecat

Is the itch deep inside your foot, hand, etc., not on the surface? That drives me nuts! THC works for me in that I forget about the itch as soon as I can calm down and be still for awhile.

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Good evening @mikeythecat and @lorettogibbons. The neuropathic itch does ramp up from within your body. You can try some topicals which may relieve some of the itch symptoms for a short period of time. To calm down and even eradicate this internal itch it is better to have an injection. I use a pen of Dupixent every other Sunday that has been kept in the refrigerator. So far.....since my first injection in August 2022, I have not had one "itch" episode. I inject it myself and alternate between my right and left thighs. Life is worth living again and I am very grateful.

You can find more information at http://www.dupixent.com. This company also has co-pay funding programs that are very helpful.

Calming down is much easier when there is no itch irritation.

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

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