Barbie, my husband and mom manage my baby

Healthgal,
Thank for the response. It's so hard. I can't sleep when I do I know I'm awake before I really know that I'm awake because the burning stinging pain comes roaring bsck. It's in my mouth ( tongue, guns, teeth) in my nostrils, etc everywhere. It's horrendous. I haven't been in this pain since before meds and now it's worse.
I haven't been on benzo before. I've never had anxiety before sfn. However I've turned this into central pain syndrome with all my anxiety and inability to do anything other than focus on pain. Ibneed something that will check me out everyday all day. I know I'm only 31 and that's too young for all these meds. But, what choice do I have. My PC doc keeps warning me about meds and to stay in as little as possible because tolerance builds and dosages need to be increased until med doesn't work anymore. I need meds to work for perhaps another 60 years so I can't run through too quickly. But i have no choice. I will be upping my gabaoentin to 1800 from 1200 . I will tell my neuro of this increase. Many people seem to have success with 1800. I need to do something for relief. It's excruciating. It's wrapping Around my lungs and making it difficult to breath because of the burning.

The plan from neuro is to up gaba to 1800 then add Cymbalta. She referred me to pain clinic but it's about a 2 year wait. She is doing a few autoimmune tests. I asked for a Riund if steroids and she said no. I asked for ivig she said no, it's only used for demyelination neuropathies and does not help sfn. She seems like she's just labelling it idiopathic and that's the end. She said I don't have diabetes and don't drink so that's pretty much the end of the game. She's the only doc that deals with this stuff here so I'm not sure what to do next. I had to ask for autoimmune testing she had no plans for further testing. Her goal for seeing me today was to talk about pain control. Ugh...

She also said I'm showing atypical sfn because I have no clinical findings, it's non length dependant ( which is apparently rare) and its seems to be only my pain fibers because my temperature feeling seems to be ok.

Hi Canagirl,

I have non-length dependant sfn, i am seeing my neuro this afternoon. He is supposed to be an expert in PN. He thinks that mine is an inflammatory process, so has suggested a trial of Steriods or trial of IVig. . The professor i saw in London also suggested if autoimmune or inflammation, this line of treatment has helped others. I am surprised they will not offer you a trial of something. I am pretty new to this too so i may be wrong, this is just what i have been told. I have also heard Cymbalta is supposed to be very good.

The funny part is that most primary doctors will give a round of steroids when someone complains about a sore shoulder. They seem to give it out like candy.
I tried two -3 days on the steroids and was a shaking stomach burning mess. Had to stop.
For some autoimmune conditions it helps knock it down though. I have friend with lupus and she has to do a round a few times a year and it puts her back in check.
They won't give me IVIG either and I am in NYC. Was told it was risky and not used for SFN, yet I hear other people from other places can get the treatment and it can help.

You can't go to a rheumatologist? Have you even had an ANA test?

My Ana is normal. I asked for a rheumy doc and she said no. I'm going to ask my pc doc.

Healthgal is ur sfn non length dependant?

She also said there is no getting better or improvement to be had. She said if it was diabetes or alcohol I might get some improvements if I changed my lifestyle but even that would be rare and not make me 100% better

Hello Canagirl,

I have just come back from Neuro appointment, so thought I would share with you. Mine is same as yours non length dependant.

I have asked neuro a load of questions, he is not just a regular neuro, he actually specialises in PN and works in London and sees a lot of people with SFN.

Canagirl, I asked if it can get better, his response was yes 'it can burn out in some cases', which he has seen in some of his patients in London. I asked him what he meant by 'burn out' he says sometimes, it just goes away!

He is putting me on 5 days in hospital on steroids, he said some patients have had a good response from this. He has also putting an application for ivig for on going treatment, he said he had a woman from Gibralter, who comes over every 8 weeks who has an amazing response from IVIG.

I just thought I would share , as I thought the neuro was very positive and helpful.

You need MORE Gabapentin then 1800. Most with severe neuropathy take up to 3000 mg a day or MORE. 1200, is nothing really compared to the pain you describe and 1800 you plan to increase to isn't much more. You may notice a small change, but you need a much bigger increase (slowly of course, but steady increases).

I honestly don't think your SFN is from the acupuncture, because you went to get the acupuncture due to nerve pain you were ALREADY having. Yes, I think it made it worse but it is NOT the cause of this and you should still try to explore possible causes while you treat your pain. You have been at 1200 mg for a while with no increase. Your GP is not a pain specialist or neurologist. You need to see a pain mgmt doctor or get your neurologist to properly treat your pain with larger doses of Gabapentin. Other drugs can be used with Gabapentin as well...but you need someone experienced in prescribing your meds.

en bloc,

I agree with all of these points. I was on 1800 mg it's not enough when you have significant body-wide burning. I'm on 2400 mg now with a small dose of nortriptyline and it's really not enough to function properly.


Hi Canagirl,

I'm sorry that you are going through this. Neuros also say that NLD-SFN is rare (mine did), but IMO I think it's uncommon, not rare. It seems to be under identified and easily written off as being caused by other things.

Maybe re-read my post to you from before:

http://neurotalk.psychcentral.com/post1148803-9.html

This likely didn't come from trauma. There are many of us here with the same thing and we are all searching for a cause and for a way to deal with this. You are not alone.