Hi

I have PN and Restless Leg Syndrome.

My toes have been feeling numb and frozen for about a year and my doctor has been trying to jiggle meds to help, but it recently moved to my fingers (about three weeks ago).

The tips of my fingers have that cold/pins and needles feeling.

I'm finding it upsetting. I'm 50, have two pre-teens to look after on my own, have a demanding full time job, and I find it harder to type now, my sleep is constantly disturbed and the worst thing is feeling completely alone in this. My loved ones don't truly understand what it's like.

I'm hoping to find out what works for other people and just learn more about PN.

Kirsteenatom

OP: I've read so much other's experiences and have my own and have taken and tried plenty of supplements for the tingle/burn issues. Mine is all from a hip replacement surgery about 10 yrs ago soon.

What I have found MOST effective is Inosine and it's very affordable and look and try it for a good trial, you have be happy you did. It's a supplement and lots of info on it out there, do the research.

And I live with bodywide OA so it's all stems from arthritis in my life.

OP: On the RLS, I have jumping in my legs now and then but I believe it's all nerve related..and I take good amounts of magnesium thru the day.

Hi kirsteenatom,


How you treat PN depends on what's causing it, or at least that's my understanding of it. More information here:

Peripheral Neuropathy Fact Sheet | National Institute of Neurological Disorders and Stroke

I have MS, osteoarthritis and diabetes. My PN symptoms are probably diabetes-related.

For me, exercise seems quite helpful. I also try to avoid constricting clothes like socks that bind. I wear diabetic socks--they're pricey but much more comfortable than regular socks.

But what works for one person may not work for another.

Hi Kirsteen

Welcome to NeuroTalk .

I am sorry to read about your PN.

The information in the link from agate looks good to me; I hope that it will help you.

Best wishes.

This is how mine started, i thought it was restless leg, but it developed into full blown Small Fiber Neuropathy in my hands and feet.

If your hands are cold it means autonomic involvement, which typicallly means its autoimmune. You need to have a full autoimmune workup and get on IVIG

Hi there,
So sorry to hear all this. New symptoms can be very scary and frustrating. Especially when no doctors seem to know how to truly help. I got diagnosed with SFN 4 months ago but I’ve been having symptoms for 2.5 years. At one point I couldn’t walk. I’m not in a flare up right now so walking is better but symptoms are spreading up to my knees now. Stabbing, biting pain all day. I was getting a strong consistent vibration in my left leg. I noticed the more I moved the better it got. As you know, moving isn’t always an option. Luckily, doing the stationary bike everyday helped with that symptom. I feel like exercise in general helps by keeping things circulation. I just do what I can. I can’t do the activities I was once able to do so I just modify and do what I can. Gabapentin has helped me. It certainly doesn’t keep me pain free but it helps for sure. I haven’t tried any supplements yet so unsure about that. Definitely, finding out the underlying issue is a must. I’m considered idiopathic at the moment. However, more investigation needs to be done. Make sure you find the right doctor to help you with that. I’m trying to get a referral to another hospital because there is a doctor there that has dealt with this disease. I think that’s really important. We have to be our own advocates and that’s scary because we don’t know what to ask or how to proceed. I would say if all the big cause are negative (HIV, hepatitis C, celiac, lupus, etc.) keep searching. If it’s something treatable that would be greats news. If not, at least you’ll have some answers and maybe know how to better move forward with this disease. I had a new symptom show up last Wednesday. Pretty scary because no doctor, out of the 8 I contacted, have seen this. I’ll attach an image below. Anyways, I understand feeling alone. I get it. You are not alone though. We are all here for support. Reach out whenever you need it. Take care

This could be carpal tunnel syndrome which causes clamping up of fingers etc. The cure is to cut a tendon on the wrist, a simple procedure that the doctor can do.
Can be caused be too much pressure on the hands, e.g cycling hands on handlebars, or using a keyboard, or not using your hands and fingers enough. I have this and when it happens I pull the hand and fingers back out of it its painful I know, its like cramp where you just yank your leg straight to pull the muscle out.

OP: Keep moving the hands and fingers and a good remedy to use would be to rub Topricin pain lotion into your hands as well as other pain/neuropathy areas.