Katybug Posted November 2, 2011 Report Share Posted November 2, 2011 Does anyone else go through cycles when their limbs all seem to fall asleep easily? Anyone know why it happens sometimes and not others, but, seems to be associated with the joint pain? I just started having a lot of joint pain again and now my limbs are falling asleep multiple times a day. This same pattern has happened before. My arm will fall asleep if I lay on my side too long, my leg will fall asleep if I have it bent too long or I sit in the same position too long. I sooo wish we could put all these puzzle pieces together and come up with a complete dx! Quote Link to comment Share on other sites More sharing options...
Alyssa Posted November 2, 2011 Report Share Posted November 2, 2011 I know exactly what you mean! My arm was completely asleep just a few minutes ago. I wake up in the middle of the night a lot with no feeling in a foot or arm.Wish I knew what it was and how to fix it. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted November 2, 2011 Report Share Posted November 2, 2011 me too!!! another annoying symptom! I figure its probably due to restricted blood flow or something.......Bren Quote Link to comment Share on other sites More sharing options...
cgnursegirl Posted November 2, 2011 Report Share Posted November 2, 2011 Yes, indeed.My hands and feet get cold, numb and tingly and sometimes outright painful. I also have restless legs syndrome. I cannot sit or lay still without my leg muscles throbbing and random muscle twitches. I have joint hypermobility and that can contribute alot to having painful joints. There is a strong correlation between having a diagnosis of CFS/FM and the dysautonomia disorders and having hypermobile joints. As far as I know, joint hypermobility is not serious, but it is painful and pain management treatments are often needed. I see a neurologist (who explained these things to me) and she said the numbness and tingling is probably due to nerve damage from the autonomic neuropathy. And the RLS and the JH is associated with the POTS that I have. I see a pain management doctor and he has helped me keep the pain under control, often with joint injections and also medicines.Maybe seeing a pain mgmt doctor could help you. I had to ask my primary care doc to give me a referral to the pain mgmt doc.I hope you can get to feeling better soon ! Quote Link to comment Share on other sites More sharing options...
Maiysa Posted November 2, 2011 Report Share Posted November 2, 2011 I have this too, but I also have autonomic neuropathy. It happens more if I'm anemic or my thyroid isn't regulated or I have a virus. I'm sorry you have to deal with this. Good health to you. Quote Link to comment Share on other sites More sharing options...
Lette Posted November 2, 2011 Report Share Posted November 2, 2011 Yup!! Happens to me especially when I sleep, I wake with pain in my arms and they are completely dead, then when I try and move them a flood of pins and needles for aaaages its horrible!!! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted November 3, 2011 Report Share Posted November 3, 2011 Yes, especially the arms when sleeping - they go completely dead! Ok, that's funny I just looked at Lette's response and she uses the same language - "completely dead." And that's exaclty how it feels. Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 3, 2011 Author Report Share Posted November 3, 2011 I third that description..completely dead!!! Then, the pins and needles start. Quote Link to comment Share on other sites More sharing options...
IDreamInColor Posted November 3, 2011 Report Share Posted November 3, 2011 Add me to the list, I've been having a terrible time with my pinky and outter hand going numb constantly. I just chalked it up to something autonomic. Quote Link to comment Share on other sites More sharing options...
icesktr189 Posted November 3, 2011 Report Share Posted November 3, 2011 I have at least two limbs go completely numb every day. Usually when I am watching tv or sleeping. They dont just tingle, it feels like I have no leg or arm.... I have just gotten used to it Quote Link to comment Share on other sites More sharing options...
Chaos Posted November 3, 2011 Report Share Posted November 3, 2011 Happens here also. Like "IDreamInColor" for the past several months it's been my pinky and ring fingers and outer hands going numb. Other times it's other limbs. Quote Link to comment Share on other sites More sharing options...
s-pot Posted November 3, 2011 Report Share Posted November 3, 2011 yup me too!! its rotten, some days even if i cross my legs or sit at an angle ill go numb from the cheek of my bum the whole way down. its seems to come and go in severity. But the nighttime limb deadness and pins and needles are worse....ive been known to try to move the dead arm when i wake, which with a life of its own, I usually manage to whack it off the wardrobe or locker beside me!! no feeling = no pain thou Quote Link to comment Share on other sites More sharing options...
Kate2011 Posted November 4, 2011 Report Share Posted November 4, 2011 Me too. Crossing legs, resting my head on my hand for too long, resting an arm on a table at an odd angle, etc. It happens to me all the time. I'm going to get an EMG NCV in a few months which should hopefully reveal something behind it all. Quote Link to comment Share on other sites More sharing options...
Frugalmama Posted November 4, 2011 Report Share Posted November 4, 2011 I, too have this constantly, and have noticed my limbs falling asleep much more quickly since I started taking midodrine. Quote Link to comment Share on other sites More sharing options...
s-pot Posted November 4, 2011 Report Share Posted November 4, 2011 Me too. Crossing legs, resting my head on my hand for too long, resting an arm on a table at an odd angle, etc. It happens to me all the time. I'm going to get an EMG NCV in a few months which should hopefully reveal something behind it all.Kate Im a little bit dumb with all these abbreviations so excuse my ignorance...but whats EMG NCV?? Quote Link to comment Share on other sites More sharing options...
Kate2011 Posted November 4, 2011 Report Share Posted November 4, 2011 I wish I knew exactly what it is. All my Doctor told me was that it's a nerve study test that they give people when they experience numbness, tingling, or loss of sensation in extremities. Hope that explains it at least a little bit. Quote Link to comment Share on other sites More sharing options...
kmichaelson Posted November 4, 2011 Report Share Posted November 4, 2011 Hello all, This is my first post because I've just been diagnosed myself after two very long years of feeling dizzy, numb, horrible, and not knowing what's going on!!! While I feel bad for everyone else having these symptoms, I've had just exactly what people are describing! My feet and hands go numb or fall asleep much more easily than they used to. Also, my hands & feet are usually either ice cold or burning up. The most troubling thing I've had is difficulty with finger dexterity, especially when my hands are cold. I can sometimes barely move my fingers to do simple things that never used to be a problem!Among what seemed like a million tests, I actually had an EMG/NCV test over the summer for just these symptoms. With the EMG test, they applied a light shock to various spots on my arm and leg (where I was having symptoms) and then measured my nerve response. For the NCV, they actually put needles into different spots on my body with an electric current and measured nerve response time there. It's definitely not a pleasant test, but I think I'd rather do that again than my tilt table. My results were a bit frustrating because they seemed to show something going on, but the doctors didn't know what... this was before I knew I had dysautonomia, so perhaps if I'd known that (or my doctor had) at the time, it would have been more informative. I guess some of my nerves were "slow" in responding, but they didn't find any evidence of a degenerative condition. (sigh) whatever that means! All I know is I still have trouble moving my fingers whatever the test says or doesn't say.One thing that was really interesting to me is that the lady who did the test had me soak my hands and feet in hot water before the test because having cold hands/feet can slow down the nerve signals. Well, given that my hands and feet are ice cold 2/3 of the time, it seems to me that that could be part of my issue.Good luck to you in finding some answers on your test, Kate! (My name is also Kate, btw, and I notice Katybug started this thread!) Quote Link to comment Share on other sites More sharing options...
Kate2011 Posted November 4, 2011 Report Share Posted November 4, 2011 Frugalmama: I'm on midodrine too and have noticed an increase as well.s-pot: I don't know too much about the test itself as I've never had it, but from what my doctor tells me it's a nerve study test they do when you have cold, numb, tingly, or "sleepy limbs" frequently. It's supposed to test the nerves in your extremities if I understand it properly. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted November 5, 2011 Report Share Posted November 5, 2011 I have had numbness in my hands, feet and face for so long that my home health care nurse doesn't even ask me about it anymore, just jots it down on her paperwork every week!Sandy Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 6, 2011 Author Report Share Posted November 6, 2011 dizzyblonde Kate - Welcome aboard! Kate2011 - I have had the EMG on my legs and it didn't show anything. Although, I definitely felt like one of Frankenstein's experiments while I was having it. It wasn't a pleasant test but it was tolerable. I just have a feeling this "falling asleep" has to do with blood flow and not with the nerves. Quote Link to comment Share on other sites More sharing options...
Kate2011 Posted November 6, 2011 Report Share Posted November 6, 2011 It's a nerve study test. I don't know too much else about it though. My doctor ordered it because of the tingly, numb sensations in my extremities.I think it's interesting to hear that you experienced an increase since taking Midodrine though, because now that I think about it mine's also worsened since starting Midodrine. Quote Link to comment Share on other sites More sharing options...
Kate2011 Posted November 6, 2011 Report Share Posted November 6, 2011 Oh! Haha I just realized there was a page two! Sorry guys I thought my answer hadn't been posting! I can't believe I've been posting and reposting! Ridiculous!Oh and hi to all the Kates! Dizzy and Katybug your information is really helpful because I wasn't really sure what to expect. I've had worse tests done though so it put my mind at ease actually! Quote Link to comment Share on other sites More sharing options...
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