Neuropathy ?linked to poor circulation
 

I have idiopathic peripheral neuropathy in my hands, lower legs and feet. Biopsy confirmed c-fiber neuropathy. My feet are always very very cold. My neurologist says she can feel the pulses in my feet so doesn't think that my pain is related. I have an infrared sauna, and even after I've been in there for 45 minutes, my feet still feel cold and I am unable to sweat. I'm getting pretty worried about this. I also have white patches on my arms which my doctor describes as "poor capillary filling". Also have fibromyalgia and have read about "neurogenic inflammation".

Any thoughts?

Well, certainly--
 

--some neuropathies are linked to poor microcirculation; there are vascultic neuropathies associated with ANA autoimmunities in which this is a factor, and the mechanism of diabetic/impaired glucose tolerance neuropathy is at least in part microcirculatory.

Many of the tests designed to find gross circulatory damage, such as those for peripheral artery disease, may be "normal" and miss damage on the level of the smaller vessels (though without lifestyle intervention or other steps, small level damage has a tendency to get to larger levels in time).

It does sound as if you might have some small-fiber autonomic involvement with your report of the anhydrosis--there are certainly tests that can be done to confirm that, such as sudomotor axon reflex testing. Some level of autonomic involvement, typically disturbances in regulating blood pressure and in sweating, is not uncommon with small-fiber neuropathies.

Have you seroconverted to a positive ANA? What is your CRP and sed rate? If you are negative now, it is worth having this monitored. I believe they can also biopsy blood vessels for inflammation...am I correct Glenn?

My thoughts are the same as Glenn's....a vasculitic neuropathy due to inflammatory disease.

I have the same symptoms as you do, but have seroconverted (finally) indicating autoimmune processes. I have global anhidrosis to heat. I do sweat, if nervous, but not if heated. The sweat glands work, but the nerves that sense heat are kaput.

My feet are always freezing. I have weird vasospasm making my BP very high at times, then vasodilation making it very low at times. All over the map.

It took a long time to show a + ANA for me. Sjogren's is a big culprit for vasculitic neuropathy as well as other autoimmune disease such as Lupus, scleroderma, etc. And there is just plain old vascultic neuropathy as well.



I hope you find answers. You should probably stay out of the sauna, lest you overheat.

Have you soaked your feet in epsom salts?

Magnesium is the mineral that dilates blood vessels.

I had a patient with black hands from severe scleroderma. She had tried every drug out there to dilate her vessels with no results. She responded within a week to daily soaks with magnesium in tepid water. So I decided she needed oral, and added 800 IU of natural Vit E. And her fingers stopped being black, and the doctor stopped the warning about amputation etc.

There is another way to dilate blood vessels. I am using it now, myself, because my feet get really cold in the winter.
You can read about it here: Do not do this if you are taking drugs now for blood pressure, without supervision by your doctor. Do not use these supplements if you use nitroglycerine or other nitrates.
http://www.drignarro.com/

I think if both of these interventions fail, then you can decide about PN affecting the circulation.

I am going to try the epsom salts! I have several bags here at home. Now if only it worked on my nose.:hug:

For feet you can do a pan to soak in or you can do the bathtub.

If you immerse your body in a big soak, you will be very surprised how wonderful they are. About 6-8 oz in a big bathtub, or 2-3 oz in a foot pan. Don't use HOT water. And if you immerse yourself, be aware that it gets SLIPPERY getting out of the tub...you need to be careful to avoid falls.
The magnesium also hydrates the skin, and makes it very nice and soft, which is an added bonus.

What I think happens is a vicious cycle. One is low in magnesium like most people, and this affects the small arteries and arterioles and makes the circulation to the hands and feet inadequate, which then delivers LESS nutrients, and fails in removing things that need to be excreted, and then the damage cycles worse and worse. If one responds to the soaks, you can continue them with no problem, but I think that response means that you need oral help, to get a full benefit.

the plot thickens
 

Wow, Great answers, albeit scary. I haven't had an ANA for awhile. Interesting that in 8% of those with vasculitic neuropathy, there is involvement of the cranial nerve VII, which I have. My neurologist doesn't think there is a connection, but when my PN is bad, I also have right-sided facial pain and tinnitus. I also have fibromyalgia with which there can also be autonomic dysfunction as described by Dr Wallace in All About Fibromyalgia, 2000, including: neurally mediated hypotension, neurogenic inflammation, migraine headaches, numbness, tingling, burning, livedo reticularis, etc. all of which I have.

I've worked in health care my entire life, but can't seem to find a doctor who can sort this out. I've just resigned because my pain, with resultant sleep deprivation, side effects from meds, etc. were interfering with my ability to think and cope in my high-tech work. It was a very hard decision. I'm very good at my work and it's a big loss to the department, and to me. I did have a toxic exposure in the workplace, and although the literature describes nerve damage from benzene, none of my doctors want to consider it. Right now the cause doesn't matter so much, unless it helps with my diagnosis and treatment.

cyclelops: With vasculitic neuropathy would a skin biopsy show C fiber neuropathy, as mine did?

My skin fiber biopsy is + for small fiber. (C fiber) I have profound autonomic neuropathy and also sensory. IMO, autonomic neuropathy is underappreciated.

My neuropathy is likely vasculitc, given the very high ANA, >1:1,280.

I have Sjogren's and probably Lupus overlap.

You may want to consider an ANA.

cyclelops, what a pickle you are in! Those are complex conditions. What kind of doctor do you have treating you--rheumatologist? I presume what you are saying is that although small-fiber neuropathy may be limited to hands and feet--inability to sweat, BP anomalies, migraines, cold extremities, etc. reflect a more systemic dysfunction? Occasionally at night I'll have a sweat so I know I am capable.

BTW, I tried soaking my feet in epsom salts, and it may have been a coincidence, but, I was up until 0400 with worse pain. It felt good at the time though and I will try it again. I take magnesium supplements regularly.

I hope you are not taking oxide.... that is not appreciably absorbed.

You might be having some pain, as the circulation returns...like when you get really get cold and suddenly warm your hands and they hurt? I'd continue to see if the pain subsides.

And don't soak in hot water... only lukewarm.

I have a research neurologist, whom I have seen for 5 years, a rheumatologist who is also a scleroderma specialist, altho I am not diagnosed with that (no substantial skin symptoms, yet, maybe never, I hope, just the weird tight pulling, face rash thing, and all kinds of -itis's, bursitis, tendonitis, etc., which is being watched). I feel like I am living in a very tight wetsuit....(My rheumie does all kinds of autoimmune stuff), and also a research gastro guy. I think these folks are about as good as one gets. I am being treated with IGg. Every one is doing their best. I can't complain.

Yes, mine is systemic, because, small fibers are present profusely in the autonomic system. My neuro contends that Sjogren's is actually neuro, but inflammatory neuro. I don't burn much anywhere, other than my mouth. I sweat too, but not to heat. My skin apparently does not sense heat. I will sweat to exercise, but the doc feels not enough and that presents a risk for heatstroke, which I have never had. I guess I have the sense to get out of the heat.

Yes, it is a pickle. My stupid body is having itself for lunch.:Sinking: After a decade of being told it was in my head....if only some one had thought to do a skin biopsy. I was at first diagnosed with fibro, altho I had had Lyme, and it was caught in the first month. They stuck with fibro, and I kept telling them I was too sick for that. My lip biopsy came back + and they told me it was a mistake. LOL. Eventually I had to get out of the HMO.

I was in that hideous HMO for over 10 years, and did not get diagnosed until I got out of it. Within 2 years of getting out, I was diagnosed first with neuropathy and later with the Sjogren's, and additional diagnoses are being considered....my ANA pattern has some additional clues, and they are just watching for specific antibodies. Always a waiting game. ( I think it is in the realm of possibility that this was triggered by Lyme. ) Yes, I was treated for Lyme with non-neurotoxic antibiotics, three times, no less, once for a substantial time. I don't think antibiotics help at this stage. My family also has a history of autoimmune disorders, so who knows?

It took 6 years from a + lip biopsy to a highly + ANA.

Thanks. I tried it again with less hot water so that it was warmer than mid warm (just warm feels like icy cold to me and is unbearable--our house if very cold) but had the same results--more pain than usual at bedtime. I also noted that after my infrared sauna 2 days ago my pain was worse, so it does seem that heating up my feet before bedtime worsens my PN. :( I'm trying different topical applications and am having some success with that.

I have a autoimmune PN and I have terrible circulation, but, my circulation problems (reynauds) are part of my antiphospholipid syndrome, while the neuropathy is part of my lupus, so they are not really connected. Also, the pain of each condition is different, so I am able to tell whether the pain is associated with my reynauds or my PN.

Although I frequently have very cold feet (red/blue/purple or waxy white in colour) I have never really been bothered by them being cold, I really don't notice it. I have no clues why, but that's how it has always been with my reynauds. With reynauds, the skin always go through a series of colours as well as just feeling cold to the touch.

I am a little puzzled by the white spots on your arms - I have poor capilliary refill, but only get the white spots when my skin is poked with a finger to test my refill. I take longer than normal to refill, but the normal colour does return. I don't have spots that stay white all the time - if you do, I would enquire further into this.
hth
raglet

Akimbo, Raglet makes a good point. Are the white spots there all the time? If so, they can be biopsied. I have white spots too, have for probably 2 decades. No one really knows what they are. My mom had vitiligo (supposedly). Docs say this is not vitiligo, and it isn't as bad as my mom's pigment issues were. I have not had a biopsy on this either, I just got sick of all the tests, lol.

Also, your conditions could be related, Raglet. The CREST to Scleroderma continuum does include PN. PN is more common in this than once thought. The same vasospastic disturbance of Raynauds can also cause PN, or visa versa, (chicken or the egg situation). I too, have vasospasm, but not to the extent of things turning blue. My hands and face hurt badly when exposed to cold,like an ice cream headache. My feet are cold and dead anyway, so not much bothers them. Nurses at the infusion clinic are aware that vasospasm happens and when it does, getting an IV in is tough. Even if well hydrated. They wrap my arm in warm compresses, they call it a spa treatment, lol.

PN is being recognized now, as being responsible for many of the problems seen in autoimmune disorders.

Also, my ENA at this point is negative, ANA is highly positive, so I am sitting in no man's land as far as the known diseases, except for the salivary gland biopsy, and that is + in many if not most autoimmune disease. Raglet how is your ENA panel? My neuro says that there are many yet to be identified antibodies that the ENA won't show, but ANA will be +. That said, you can still be seronegative and have autoimmune disease. I was seroneg for a decade.

Sounds like we have some commonalities. I am going back to bed, my 'migraine' is not going away. I guess I overdid it during the holidays.

cyclelops - I am really lucky when it comes to my ENA testing, and I just seem to make loads of antibodies. I really appreciate this, as so many people struggle with getting a dx, while this has never been a problem for me as I have classic blood tests for lupus, antiphospholipid syndrome, and sjogrens syndrome. From memory I have positive ANA, anti-ds-dna's, SSA, lupus anti coagulant, anticardiolipin antibodies, low level RNP, and more that I have forgotten. I know it seems strange but I really do feel fortunate to have so many positive antibodies, plus supporting tests like low C3 & C4, low wbc, etc etc, as it gives me a very clear diagnosis which I really appreciate. From memory my anti ribosomal P was also positive (which is associated with cns disease) but I only had it tested once as it had to be sent to a lab in another country.

I think that how autoimmune disease affects us varies a lot from individual to individual. For me, I don't feel that my PN is associated with my circulation problems, but then it may well be for other people. We are all just so unique when it comes to how our disease is expressed which makes it a real challenge in finding effective treatments.

cheers
raglet

Raglet, in addition to the high ANA, I have a low C4 and elevated CRP. I think there are lots of antibodies that still need to be tested for. I have had the basic ENA. Given I have a nucleolar pattern (at times), I am surprised nothing came up on ENA. They have never mentioned the others and I don't think they did anticardiolipin or some of the other things you mentioned. I had 4 normal pregnancies so I assume I don't have antiphospholipid issues, unless they developed later. I did have the neuronal antibodies done 5 years ago, and it is worth a repeat I think.

I don't know if I have circulation issues, but given the cold feet, migraines, labile BP, and vasospasm, I assume I do. I try not to think about it.

They did not want to test for any antibodies this last time, due to IVIg. I wonder how they can monitor disease without testing. Hmm. They did say next time they will run the ANA and ENA. I will ask for the other antibody tests then. I think because I had Lyme, they are a bit reluctant to nail me with the -mab drugs or anything that causes severe immunosuppression. It is a double edge sword. I feel really rotten lots of days.

You have a boatload of autoimmune issues! What are you being treated with and does it help?

Raglet,

I am in 'duh' mode. I was told I have livedo reticularis, likely related to the autoimmune stuff. So, I guess, my assumption is correct. There is some kind of vasculopathy or 'itis. Lately the dizziness and occassional vertigo has been bad.

I am really lucky in that i am on rituxan, which is a monoclonal b antibody and depletes my b cells, which really helps. It is the first treatment I have been on that has been helpful, and I have tried them all (everything from metho to cytoxan). It doesn't do much if anything for my neuropathy though (mainly motor), and that is still progressing, but it has done amazing stuff for my cognitions which is the main thing. It has cut right back on my hospital admissions, I love it. Still have a lot of neuro stuff going on, but as long as I can think I can cope with it.

raglet

They have brought up Rituxan to me, but I am scared as I had Lyme, and I am worried about two things, one is a mouse chimeric monoclonal antibody...(Borrelia the organism that causes Lyme spends part of its life cycle in a mouse) and two, if I cause severe immunosuppression and the Lyme or some other germ roars back....then what. So, I am not sure what to do. Human monoclonal antibodies will soon be out and I wonder if I can wait until that happens. If not, then I will have to try Rituxan, and take the risk.

My doc said they are using Rituxan for neuropathy of sarc, with good luck. But you don't think it helped...hmmm, maybe it won't help the neuropathy I have much either. On the other hand, the other symptoms I have that are not related to PN are debilitating too.

I suppose cellcept is an option that could be combined with IVIG. That has its downsides too.

I keep thinking at some point, something will force my hand.

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...:eek:

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).

Yes, generally--
 

--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.