I've have had the most unpleasant day. Do you know the expression, someone walking over your grave? And the crawly, goose bump sensation that goes with it?
Today I woke up with 'waves' of this happening. Imagine a wave of water lapping along side your back of you lie in the water. Same thing but with that odd sensation flowing from my back, through to my front and down my legs. It kept happening about every 45 minutes all day long. Even in my scalp, like bugs crawling all over me and through me to the other side. My arms would get goose bumps and I was sooooo cold. The temp in the house was around 80 and I was under blankets freezing.
Any ideas of what this could be? I don't know how best to describe it and am hoping someone has a better definition so I can explain it to my doc.
Sassie
I have similar sensations and will just describe what feels like someone pouring cold water over my back. I hope that gives you some idea maybe of how to describe to your doc. Lucy
I've had this on and off over the years as well, whatever the weather ::) If I'm anxious or nervous about something it's even worse!
Cheers, Lesley (NZ)
Lesley,
Have you had it on off for hours and then had it happen again? I have felt this one time every once in a while but never before for most of the whole day.
Do you have any idea what it is. I know you said if you're nervous or anxious but I was woken up out of a dead sleep when this started and it kept going on and on for hours afterward.
I don't really think I could describe it as cold water because it went through me and I can associate water as on me. It was like all my nerve endings just decided to wake up at once. Almost like the electrical impluses that race down my legs when my back is acting up.
Sassie
My doctor calls it paresthesias. Sometimes it feels like my leg is wet and it is not. Or that my leg is hot or cold. Or that nerves are tingling or burning under my skin. There are medications that can help. Also it helps me to not get too warm as that makes it worse.
KL
I get the feeling in my legs; sometimes all day long and sometimes all night. Right now it is just in my feet. I've never had a doctor take it seriously, but it is really aggravating and hard to live with. Cold makes it worse. A hot bath usually helps. I'd like to know what it is and what is causing it. A PA suggested it was an issue with my back.
Kathy,
Thank you for the direction to research. I know that sometimes if you can't properly explain what is going on, the doctor looks at me funny. They can't read my mind and it helps to know how to best expain the problems.
Sassie
Hi, it's so reassuring to read all your descriptions in a way. It makes me feel that I am not going mad and that it is part of an autoimmune picture. I am not alone with it....some compensation, I know.
I love the description of a rush of cold water. I've always called it 'nerve flooding'. It often happens when I put my feet up and relax. It is like the shivers up your spine that you associate with 'flu etc.. Mind you, it's not just the spine, is it? It is like a flash of energy you might get at Spaghetti junction in Birmingham! All over the place! And I do think it is like a wave because it feels like there is movement in it, bottom to top usually.
Just thought I'd try and capture my own experience.... darn nuisance, whatever it is!
Yes, darn nuisance is exactly what it is.
Nerve flooding is a good description too. Mine didn't go from top to bottom it went from my back clear through to my front, and as far down as my knees. It's happened a few more times since then too. Not like the one day where it just kept going like the energizer bunny.
I too noticed that it seems to happen when I am over tired or haven't slept well. That must have something to do with it to. Have to say that it's better than the neuropathy any day. I just hate it when new things crop up. I don't want the doctor thinking I'm nuts because she diagnosed me with SjS and now I have all these strange things happening. It's seems hard to tell someone, "I'm not crazy" when sometimes I feel that I am with all these strange symptoms.
I hope I'm wrong, but I had these sensations. I described the feeling like the one you feel when you let a silk slip side down over your bare skin. Only mine would go all the way to the floor. Weird, weird, weird. Then it went to tiny shocks or insect type bites. Then the shooting shocks from one part of my hip to my calf. I never know where they will hit next. Frustrating indeed. :(
Anyway you look at these things that happen to us, it's strange. Is it any wonder our doctor's look at us sometimes as though we have 2 heads when we tell them about them.
Hang in there friends, we are all in this together. ;D
Hugs to all,
Pooh
Pooh,
So right you are, they do look at us like we have two heads. (chuckle) I makes me feel good to know that others share these strange sensations. Not that I would wish them on anyone else. I does seem that we all share the common 'unusual' symptoms.
Yes, we are all in this together. The wonderful news is should anyone have insite, they share. :)
Today I saw my PC. I asked how versed he was in SjS and he was honest enough to say, not much. I told him about the prickly sensations that I was having and about how my body is going berzerk with hot and cold sensations.
His response was, it could be the SjS or it could be hormonal. The thryoid is a gland that regulates hormones too. He looked at the blood work that I had done and noticed that the T3 is low. The autoimmune disease (Hashimoto's) has now completely killed my thryoid. So, I will now take a two pills each morning for my thryoid. They are synthroid and cytomel.
Note: I have been gaining weight while watching my diet. This is also another sign of thryoid malfunctioning.
I'll post again later to let everyone know if this takes care of the problem.
P.S. It was nice that I didn't get 'the look', you know the one that tells you they think you're off your rocker when strange things happen. LOL :)
I;ve had this on and off for years. Sometimes I can have goose bumps on one thigh, and the other leg will be really hot. Weird stuff.
If I get really cold (even in summer) I have to either have a hot bath or go to bed, to get warm again. xx