Cold cold cold legs--but not Reynauds. Anyone have a clue?

[Marmotte]

I'm not sure where to put this, because I don't know what category it should be in.

Anyway, for quite a few years I've been trying to persuade doctors to look at the whole person, not just the bladder, or the thyroid, or whatever. I once tried to make an appt to speak to a physician about two things and was told I would have to make two appointments. (Decided that was the wrong dr 4 me, and never made the appt.)

Anyway, I can't shake the feeling that what is happening in my legs is somehow related to SjS and/or IC. It started at about the same time I noticed symptoms for these other two things. Most of the time my legs feel like they are on the verge of frostbite. Painful, very cold. But they look perfectly normal, and they don't usually feel cold to the touch. I can sit in a hot tub, and the legs will still feel cold. Sometimes it is so painful I can't sleep. One dr said it was Reynauds, but the rheumy said no way (and I agree, as there are no color changes). He offered no ideas of what it could be, however.

It is not restless leg. It's not at all like that. Sometimes my arms and face get the same sensation. I'm wondering if any of you reading this have had anything similar, and if so, if you found out what was going on.

Thanks
Marmotte

[JannaLee]

Sounds like some sort of nueropathy to me.  Have you seen a neurologist?

I'm sorry for this tenacious pain!  I sure do wish you could get some relief from this one!

Janna

[Joe S.]

My neuropathy changed when I did 21 nights on ionic foot patches. (I wore socks to help them work better). An ionic foot bath may have the same effect in several treatments.

[dayng1016]

It sounds like some kind of neuropathy to me also.  I had a similar problem not that long ago, with just one leg.  Feeling like I had ice running through the leg, constantly cold and had some pain and tingling sensation also.  After about a month I decided to see one of the docs at my job b/c I thought it could be blood clot.  His first thought was that it was neuropathic, and put me on Neurontin.  I did have him order a venous doppler, just to be sure no clot (that was negative).  I stayed on the Neurontin for 10days.  It did help, I just have the occasional pain in the calf but the constant cold feeling is gone.  I would definitely get it checked by a doctor. 

Hope you feel better soon!
Pam

[Katybarstool]

Hi Marmotte

My son has something similar - his feet and legs get soo cold, it's unbearable for him. He has to wear three pairs of socks, even in the summer. His rheumatologist called it 'acrocyanosis', as he too does not have the colour changes. He also has fibromyalgia.

Kathyx

[sbrowning]

You bet it's a neuropathy! I have this problem big time.  My legs sometimes seem cold when they really are, sometimes seem cold when are really toasty warm.  sometimes they seem as if I'm on hot coals and they are really ice cold.  I ask my Mayo neurologist about that & how was it possible.  He said the brain is getting mixed signals.  I  also have a cold spot on the back of my left hand that goes about half way up to my elbow.  Very strange.  I wear socks all the time 24/7.  Hope this helps.  I take Neurontin but it doesn't fix everything.
SBrowning

[Marmotte]

Thanks everyone.... if nothing else it's kind of reassuring to know that other people have experienced this. I have asked quite a few doctors about this, and they don't really seem to take it seriously. I guess it's another one of those you-don't-look-sick scenarios. I've taken Tylenol #3 a few times when I was desperate--and then the sweet relief swept over me in about half an hour. I can totally understand how a person could get dependent.

The neuro connection makes sense. I am learning to live with it and can ignore it most of the time; but if I think about it, it's quite painful. It's amazing how the body can adjust. I feel it most at night, and it is hard for me to be in a room where the temp is below 70, no matter how many blankets (including elec blankets) are on the bed, because my face is so cold. My poor hubby: He sweats with one sheet!!!!

But of course this is a really minor thing, compared to what so many of you are going through. Thanks for listening!

Marmotte