Hi all,

Recently I've started getting a burning pain on my back and sometimes my lower face over the last couple of months. It feels like a really bad sunburn but the skin on my back appears normal. The pain on the back is getting to be almost constant now, which makes rolling on my back when sleeping a whole lot of fun. When my face burns and cold air hits my face, well it's a killer. The drs at Johns Hopkins put me on 300mg of Lyrica, which I made for a whole week. I'm off Lyrica due to side effects. Note: Avoid Lyrica if you want to drive/talk/think. Worse side effects I've ever had. Cymbalta helps my leg pain some but not the burning. As it seems to be getting worse, I thought I'd see if anyone else had had this problem and if you've found anything that helps.

Hermes

Hermes,

If I remember correctly, you're a non-length dependent small fiber neuropathy. If so, the face can definitely be affected by burning and light touch, but not by pressure touch. My face was always the worst as I've said tons of times previously. But I have Sjogren's Syndrome, and one of the things it messes up is skin. Mine has been the hardest hit because of the Sjogren's and because Sjogren's can cause NLD SFN.

Are you doing the supplements, especially B12 as methylcobalamin and B1 as benfotiamine, a vitamin/mineral complex, D3, R-alpha lipoic acid?

I couldn't take the meds you mentioned, or neurontin, etc. So the supplements are what I believe triggered significant improvement of the burning NLD SFN neuropathy. Also think that stopping Zocor forever last February (per the rheumatologist) helped.

Sheltiemom

What dose of Cymbalta are you on? Some people need even 120 I have heard which I was on at one time to feel the benefits. I get burning on my ear and then my feet/legs sometimes.

60mg of Cymbalta, which my Dr and the prescribing info both indicate is the max effective dose for neuro pain. I know higher dosages are used for depression. Any yes I read the dr's prescribing info for the meds I'm on. It gives me lots of good questions for the drs.

Actually my DX is idiopathic polyneuropathy. The skin biopsy was negative for SFN so it is large fiber sensory? Not sure or are the drs apparently. I am on calcium/D3 but I haven't tried the B12, B1 or R-apha lipoic acid.

Anyone continuing to use a statin, should be taking CoQ-10 daily.

The enzyme in the liver that makes this for us normally is blocked by statins. Low CoQ-10 levels impact the heart and nervous system.

http://www.spacedoc.net/statins_CoQ10.htm

Hi. I don't know but when I was not feeling relief from the 60 we went up to 120 though I did not feel any different with that either. So now I am back on 60. Have you tried neurontin? At one time I thought that was helping me but not so much now. I tried Lyrica and by body did not tolerate that well either.

My cardiologist has me on 300mg CoQ10 with 40mg of Crestor

Neurotin was the 1st shot. I didn't do anything so we discontinued it. From there went to Cymbalta which seemed to work at first but then pain got worse. The added Lyrica and that was bad - side effects. I stopped Cymbalta for 3 days and was on nothing so I could see if it was working or not and to give myself a baseline. Worse pain I've been in especially at night. I restarted Cymbalta I still have at times significant pain but it is less.

40mg of Crestor is a ginormous dose. You might consider doubling your CoQ-10...and adding acetyl carnitine, also.

Carnitine is for mito damage....and statins cause that as a side effect (separate from the liver enzyme suppression).