Hello! I know this is a very old thread, but I found it so interesting and so helpful that I had to reply. Cycleops and Raglet, your problems sound so similar to mine. I've also wanted information about how autoimmune diseases cause PN and how circulation affects nerves... my rheumatologists (and I've seen 3) keep telling me that my neurological symptoms are not related to my autoimmune disease even though all of my symptoms started up at the same time.

Cycleops, I'm intrigued that you had symptoms for so long before your bloodwork turned positive. I'm also very interested to hear about your skin sensations (the tightness/pulling sensation that may or may not be related to scleroderma). I'm also interested in the Lyme connection because I was bitten by a tick a decade ago; it stayed embedded in my leg for a couple days before I noticed and I was not treated with antibiotics at the time. I didn't get sick immediately, but gradually over time developed these problems.

I have a +ANA (1:640 speckled) and I once tested positive for Rheumatoid Factor though I've tested negative twice since then. The ANA remains at positive at the same level. I've had the whole antibody panel for Connective Tissue Diseases run twice (a year apart) and they were all negative other than that +RF the first time around. The first rheumatologist said I had UCTD and thought it was heading towards scleroderma because I'd developed bad heartburn, Raynaud's, and those skin sensations you described though NO actual skin changes yet. He retired and I got a new rheumatologist who said she doesn't even feel sure I have a connective tissue disease at all. She was thinking MS because of all the neurological stuff. That was ruled out by a neurologist though. I have no diagnosis other than the neuropathy. She also told me that she doesn't think my "vasomotor dysfunction" is Raynaud's because it's predominantly in my feet (Raynaud's is usually much worse in the hands) and I don't get the 3-phase colour changes, just a blotchy black/white type of discolouration. But I definitely have vasospasms...

Anyway, I am curious to hear how you're doing now since these posts are a couple years old. I hope that things have improved for you and that you've found an effective treatment for controlling your symptoms. Did you end up with a scleroderma diagnosis or is it still primary Sjogren's?

All the best!

Sorry but I also see this is an old thread, it has provoked a question from me though! Does magnesium ever cause MORE pain, maybe just initially? The epsom salt soaks are something I've been wondering about because when all this pain in my feet started, I had an ingrown toenail and was soaking in epsom salts twice a day. My feet - especially my toenails - got worse, and worse, and I was told it was my raynaud's. But one of the raynaud's meds did not help, so I was told it was neuropathy. It went from pain and redness to burning, tenderness, like bruising. Then it started going cold and numb. I soaked with the epsom salts while having a podiatrist trim the nail, they also started telling me multiple nails were ingrown, and started trimming all of them. Those nails got red around them, and the trimming would help but only for a few days. I don't know if I should have continued the raynaud's/blood pressure med. I know that the temp of the tile in my house is making everything worse. And I DO have an autoimmune disease. Mixed Connective Tissue Disease - which includes symptoms of scleroderma and lupus, and I'm always dry, and sometimes wonder if I have sjogren's.

Everytime I have started a magnesium pill, which has very high amounts of B6 in it, I feel worse. Or at least, I start to think the pill is causing more symptoms, so I always stop it. I also have fibro, so have been told (but not by my rheum) that all of us fibro patients need magnesium. The nutritionist I have talked to has always told me to take this magnesium/b6 supplement.

Can the salts make my feet get worse? Or burn - or even start changing them in some way? Maybe I just need to CONTINUE them to get the benefits? I am also scared the B6 in the magnesium supplement was causing a problem. I tested high in B12 once, back before all this occurred.

The instructions on my epsom salts container said to use hot water. Hope I didn't further the damage to my nerves...

Epsom salts are used for many things. Deep muscle strains, may require more heat to increase circulation to the muscles.

Heat for PNers is generally a trigger for more pain, hence we don't use hot water to soak. Our problems are nerve generated.

I don't know why the directions on the Epsom salts says "hot" water anyway. Some people would not do well with "hot". Many OTC products including supplements have
"iffy" directions IMO. Either incomplete, or out of date, or whatever, is what I've seen on some things.

In general heat makes nerves fire MORE. My Chiro told me this, and I limit heating pads now. My old MP can still be activated by heat. (steam rooms, heating pads, or hot tubs).

--heat is the enemy of nerve function, though it may be soothing for muscular aches.

The MS people know this well--they are constantly trying to stay at cooler temperatures, and there are even cooling vests sold to keep the core body temperature a little lower on warm days.

I'm interested in the fact that your magnesium supplement has B6 in it--what are the levels? There are some people with metabolic issues involving B6 that get neuropathic symptoms at high B6 supplement levels--they may not be able to properly convert pyrodoxine (Mrs. D may chime in which a much more detailed analysis). It might be a good idea to try the magnesium without the B6 for a while.

I checked my magnesium supplement. It is called Malic Magnesium, and includes malic acid that's supposed to help you absorb the magnesium I think, plus it has 50mg - or 2500% of B6. I never took a whole dose, because I couldn't do it. But I did take at least half of that per day while I was trying it. Everytime I would try it, I would feel worse - especially anxiety-wise. Trembly. Plus other things would seem to get worse. So I always stopped after a couple of weeks.