Hi Ken,
Yes it is getting me down. I was so happy and loved life before this this crap hit me. So the pain is really getting to me. Making life more tolerable now, and withdrawing later on as you said sounds great, but with a progressive illness and being young, that terrifies me. I know no one has the answers though and in taking this one day at a time (which is all anyone has anyway), I guess I have to think of now and maybe willing to try something.

Roller Coaster
 

I gave in and was on Norco-10-325 for I was unable to be still. I had to keep moving and sleep was cat-naps. I then started generic Ambien and with the norco was able to get the sleep that is necessary. Fast foward about a year and no more Norco, just Tylenol w/codiene. I'm off Gabapentine since it did me no good.(not always the case). I still take the Ambien even though I feel I could probably drop it. I need to quit nicotine first as it is probably hindering further healing or at least slowing it. Good Luck, Ken in Texas

No, but if it was it would probably be helpful.

I tried everything out there, and I haven't found any relief, which is bummer. Of everything I have tried, MJ (edible) is the best but I don't live where it is available. Narcotics do work, but, you find yourself on a merry go round where you have to either escalate the dose to get relief or else wean off for periods of time and start the circus all over again. It's a constant battle with interdose withdrawal as well.

Our cases are similar, for me, now that all the crazy neuro stuff has subsided, it almost seems as if the fascia which has now been found to be highly innervated by small nerve fibers, is what is causing so much body wide pain. I feel like my fascia is too small for my body, very tight, very stiff, and very painful. I am trying to do stretching and if I could afford it I would have massage frequently. Other than that, it's oxycodone, as little as possible, which some days can be none, and an extreme change of lifestyle for me, which really worries me, as I have lost a lot of independence. Also IVIG was of little help for me. :/ I would love to try plasmapheresis but that isn't likely to happen.

I am just thankful that the very severe headaches are far less frequent now. Whatever I have, it is nasty and the treatments were nasty as well.

Hi Healthgirl,
 

I can offer you empathy; they *suspect* my neuropathy has an autoimmune cause. My bloodwork is mostly negative, however. So it's symptom management for now. I did find that amitriptyline, 50 mg at night helped me sleep by calming the worst of the twitching and nerve "zinging" pain. I am just now starting neurontin.

I'm reading Dr. Terry Wahl's book about diet & MS. From an autoimmune standpoint it's making sense. The changes are quite drastic for me. ;-) I love my gluten and sugar.

Hi Jenng,
Yes, I have that book and do eat almost paleo anyway. I still eat corn and rice sometimes though. I'm getting ready to eliminate them for a while since I'm still a mess. Six months ago when the shooting pain started in my shoulders and hands, I went cold turkey completely gluten free.
I don't have digestive issues, but my minerals are low and with a very high ANA, I'm not messing around with a food that is known to cause nerve damage and malabsorption in some people. I'm a holistic health coach and I recommend to any clients with any physical or emotional ailments to do an elimination of gluten, dairy, eggs, sugar, and soy for a month and see how they feel. Then each week, add only one of the foods back at a time.
Since gluten is a scientifically proven cause of gut and nerve damage, it is the first to go. It sounds hard, but after the first 2 weeks of withdrawal, you would be fine. It is so much harder than it seems and what if it was the culprit?

Excellent book. I actually asked a question about SFN of Dr. Wahls that made it on to the Paleo Solution Podcast - Episode 252 (about 30 minutes in). Her functional medicine take this condition was very thought provoking.

Thanks for letting us now. A PDF transcription is at the link below, and I think the exchange starts at the bottom of page 13.

http://robbwolf.com/wp-content/uploa...lution-252.pdf

Just curious, what pattern is your ANA showing? Mine started as fine speckled and then went to nucleolar. I just had labs drawn again and am waiting for results. I imagine it will be 2 weeks before I get them in the mail. I imagine they will also call me. Given you have a high ANA, it sure smacks of an autoimmune process going on.

Anti depressants are the best for me. Even low dose lifts my mood and helps a lot with the being eaten alive by red fire ants sensations