I've wondered about the change in my birth control--since that was my only change and it was right when symptoms started. I'm tech. infertile, but stay on birth control to keep my hormones regulated. I know there are other natural ways...I tried a few back in the days of trying to get preg...anyway, I've been on the same pill 12 years, and then switched to one with lower estrogen. I tend to have very low estrogen on my own, so I've wondered if this is just too low. I'm now on the lowest type pill--because of my age, 41, DR wanted to switch me--then I'll stay on this through meno. Having metabolic syndrome, Dr felt this was best. Seems I've read estrogen can have a neuro protective effect?

Also the TSH going sky high--that was probably either a Hashimotos flare, and/or some soy protein bars I was eating daily (I knew better, but had been OK with other brands, but these were loaded w/ soy isolate) .

No dr has given the estrogen connection any thought--and most, even endo, missed the thyroid link--though now I see everywhere about hypothyroid neuropathy. Still, my levels have been getting better for 2 months, so maybe it's still too soon to rule out the thyroid cause?

I'm looking into the nightshades/diet stuff. I'm generally a health nut--and started avoiding gluten about a month ago to see if that might help. Other than that, I've taken fish oil for years, tried many of the supplements I've seen listed here. Still hoping for relief.
Thanks so much for your time

The nightshades contain solanine. If you search "solanine" on the web or on this forum, you'll find some of my searches and posts. Solanine is thought now to accumulate in humans and is very high in nightshades. Giving up potatoes, has really helped me. Who would have thought? Wish I had known that 20 yrs ago.
Some tomato is okay for me, but concentrated into paste sauces will cause me to burn, most of my burning is on feet.
There are sites with histamine containing and releasing foods. Tomatoes are one;
http://neurotalk.psychcentral.com/thread161714.html
My husband has always avoided tomatoes because he says they make him itch/tingle.

Another thing that is very very damaging is MSG. This inorganic salt of glutamine stimulates the pain receptors NMDA. So it is best to avoid it as much as possible.

Different people react differently to foods. So it would be a good idea to do eliminations on various groups.
Soy
Casein
gluten
nightshades
Even Onions/garlic (lily family)

The problem with birth control is that it is a constant hormone provider, whereas we women cycle estrogen. Estrogen peaks at day 14 or so and then drops again. The doctor who did my EMG of my arms, back then said the hormones are high during pregnancy and make carpal tunnel much worse. Once they dropped, about 3 days after my son was born, my hands improved dramatically. And I could hold a pencil again, etc. I was very disabled by the CT from the 5th month until delivery.

I think the only way to know about the BCs is to stop them and see what develops. I never took BCs or any menopausal hormones either. Back in the days when they first were introduced I took them for about 2 years(they were stronger then too), and had fluid retention and elevated blood pressure. So I stopped them. I was in my early twenties then and in good shape, and horrified by my side effects. It was not a difficult decision. I had started with an estrogen only one, that had progestin added the last 7 days...C-Quens was name. They worked ok. But then the FDA got into a snit about tumors in Beagles from them, and took them off the market. I was forced to use Lo/Ovral, which was a horrible failure. I blamed the progestin for my troubles, because all the BCs then had progestin in the whole course.

I have never ever had a high reading on any blood glucose testing. But for my autonomic neuropathy and PN, I was told by my doctor to take Alpha Lipoic Acid and Benfotiamine. They helped a lot so my doctor then told me to stop sugar and most carbs, all bad carbs. WOW, did that help. In a few months I am doing great!

Supplements and diet have been all my doctor needed to help me with. My Chronic Fatigue is not a problem now and the Dysautonomia/nueropathy is healing. Nerves are slow to heal but taking sugar and bad carbs away and NEVER having the bad fake sugars or corn fructose, it allows the inflammation to go down and the nerves then are able to heal when you add the supplements. Antioxidents and healthful foods like Kale, onions, sea veg. and other good foods all help the nerves. They are so sensitive to toxins.

Mrs. D is, indeed wonderful! And, as usual, on target.
From everything I'm reading about your symptoms, I'd guess gluten is at the root of much of it. "Avoiding gluten" may not really be enough. My experience is that you have to be a bit fanatical, and really cleanse it out of your system; estimates I've read are about 6 months. One of the problems with gluten is that it can burn out the receptors in your gut that assimilate B vitamins; so you are starving your nervous system, no matter how many supplements you ingest. Also, wheat proteins can penetrate the walls of your intestines, leaking toxins into your bloodstream, affecting any organ you can name. Pancreas? Sure! Thyroid? Sure! Peripheral nerves? Sure! You name it, gluten can screw it up for you.

I'm working on it, myself, and finding it all over the place; I recently found wheat protein in my shampoo. I, too, am a vegetarian, and my family and I are finding it hard to find compatible restaurants, etc. This is not easy. But it's really worth it; feeling weak and in pain is not easy, either; and going to the doctor is at least as inconvenient.

You have found a wonderful place for support. I wish you best of luck with it.
Steven

wow--the timing of this! I had been off gluten entirely for maybe the last 2 months (after previously eating about 1-2 cups pure wheat bran a day!) And today of all days, I convinced myself it didn't matter, I needed the fiber...and went back to the wheat bran
So thanks for the encouragement to press on...back to rice!

You also can't overdo carbs/sugar. I don't eat rice, pasta or bread etc.

So I went to a new internist, described my burning pain (mostly chest--but it is on the skin, not deep/cardiac type), still get some carpal tunnel pain, milder. Some back of arms, and back of one calf. B12 was >1000, all other labs OK. They have now done extensive ANA, sed rate, Creative Protein, Anti DNA, Lyme, ALL Normal. The only abnormal at this point, was my albumin/creat ration was high (35, norm is <30). The internist says he thinks it is "vasculitis". I do not have a rash, and no biopsy done--is this a legitimate jump, or not?
Thanks again all