Since I'm a bit new to this site, I haven't came across any prior discussions from others regarding their extremities having the tingling/sleeping feeling at night. Within the past two weeks or so, I can barely get any sleep due to my hands and feet feeling as if their asleep, per se, or have that heavy tingling feeling. Can this be linked to EM or am I just sleeping too heavily!?! Thanks in advance!
Hello Rachee
I am new as well but had to reply to this.I have been diagnosed with small fiber neuropathy and now I think I have EM.I don't know from others if this is a typical symptom of EM but it seems to be in some way related to Neuropathy or that's what I feel.
I would definatly see about it ;-) I feel the sooner we face things the more pro-active we can be. I also have a family history of MS and also my sister has Lupus, so seems that we have dodgy genes or something ;-)
I am so glad to have found this site where we can all not only support one another but also ask questions from others who know where we are coming from. It can be hard to suffer from something that does not many times affect the way we look (although when I have my flare ups I am brilliant red where affected)
You could look into taking vit supplements also. I don't know what others suggest but just ground root supplements would be Vit B which is essentail to the healthy functioning of ther nerves and maybe also something to protect the myelin sheath of the nerve. There are many things from Omega 3's to evening primrose. Some suggestions.
Hope you get it seen to.
Alison
I definitely get tingling in my toes, where I have EM (or what I strongly suspect is EM). They (so far) have not gone completely to sleep unless I am actually sitting in a way that cuts off circulation. I am curious what position you have your arms in when you sleep. I have not experienced EM in my hands (knock on wood), but my hands go tingly/increasingly numb if my elbows are bent at a certain angle (around 90 degrees, perhaps slightly acute, maybe 80) for any length of time. So when I sleep on my back with my hands resting on my belly, I will wake up in the night with hands that are COMPLETELY numb, as if they are not there. My GP says this is just a nerve that gets pinched when my elbow is at that angle, and sure enough it doesn't happen if I sleep with my arms relatively straight. I know this may have nothing to do with your situation, but I figured there's a chance it could be useful info. Hope it helps!
I could not remember the supplement but it came to me now. Lecithin. It is an essential component of the brain and nervous system and is excellent to take.
I get tingling and numbness if I have any part of my body still long enough, say, arms bent lookig at PC screen or if my knees are crossed in yoga. Basically seems that things go to sleep very easily and this may be both neurological or circulatory in origin I reckon.
I had small fiber neuropathy 3 yrs before being diagnosed with EM last year. The Dr's seem to think I developed these painful conditions as side effects of my 34 yr history of Crohn's Disease an auto-immune disease. I don't absorb the vitamins and nutrients needed to protect the sheath of my nerves.
I take neurontin, elavil, and get B-12 and magnesium injections. I also take multiple vitamins and nutrients.
I wish you the best...
I dont believe there is such a thing as sleeping too heavily. Well, unless you have Narcolepsy. ;)
I think mine began with the deep bone ache coldness in my right ankle...but before that was a couple bouts of Raynauds Syndrome, but only in the wintertime. I think...I have dealt with this for so long, I should sit down and timeline it all out I suppose. The tingling is a part of the EM, at least for me. After a while, you sorta start explaining away symptoms and things get so *normal* that you can forget what NORMAL really is, and it is nothing that your body is doing, if that makes any sense.
I apologize, but I must go. I know I didnt help much, but I have a 2.5 hr drive this morning to Cleveland to have the Small Nerve Biopsy done, Autonomic Surgery or something like that. I finally found a Neurologist who would do it. I am crossing my fingers... I wish you luck and that some of the other ppl might be able to help you more! :D
I also agree, I sleep lots, and even more now my gabapentin has increased. I get the tingly/numb/sleepy feeling most nights, I also wake up with no feeling/severe pins and needles in my hands (I also suspect I have Raynauds but Dr seem to dismiss it and said it doesn't matte rwhats causing the pain they will treat it the same as my EM which I have had formal diagnosis for)
Can I ask Lani, what ar ethey doing the small Nerve Biopsy for..??
Omg I have been dealing with this on and off for years now. My hands do it. I have to position them just right and make sure they’re very cold and no under the blankets. It takes me a very long time to fall asleep because I’m simply trying to avoid the feeling. It’s not painful. Just tingly and sometimes warm and red to the touch. I sometimes keep a bowl of cold water to dunk mi hands in at night.
So I'm rather new to this (diagnosed three months ago). This post caught my eye because, in the last week, I've started having difficulty sleeping because my hands and feet have been hot and "uncomfortable". I can't really explain this better than that. I just can't get comfortable and I keep having to change position. In the morning, my hands and feet are achy and stiff. I don't really feel anything "tingly" so maybe this is coming? My experience so far is that it has been slowly progressing with new symptoms showing up each month.
To complicate things, I also have Raynaud's so it's been a constant balancing act between keeping warm to avoid a Raynaud's flare without getting too warm to trigger an EM flare. :-(
I have been having lots of issues with my hands “falling asleep” during the night and becoming numb. This makes for a rough night. I am going to go see a Vascular Surgeon at the Cleveland Clinic next month who has experience treating EM. I am going to bring this up to her and see if she has any insight. I’ll let you know what I find out. Hang in there!
Thanks for all the input, friends! I wish I had some answers or magical tips, but I don't. I mainly suffer at work....where I can't control the temperature. Either some are hot or some are cold. I've noticed if it gets over 73 or so in the building, my hands, face, and ears immediately become inflamed....I get ovewhelmed with anxiety type feelings, I can't concentrate because of the burning & inflamation and I just want to cry. It's so frustrating, as most of you are aware. Last week I was crying to my boss because it wasn't cooling down in the office....I had to step outside with a large glass of ice water, which I drank within a minute to get my internal temperature down. I've decided I'm going to do AdvoCare or Herbalife replacement shakes twice a day with several vitamins (feed the cells with proper nutrition so they can heal) and see a chiropractor for alignment and proper nutrition. I don't know what else to do. It's beginning to show up in my feet now....I was at the grocery store this morning (and it was a bit cool in there) and my left foot and toes started going numb, almost like it was asleep. This was probably the 3rd or 4th time this has happened while walking or getting cold.