marthamoss Posted June 5, 2010 Report Share Posted June 5, 2010 My 17 year old son has POTS and most of his symptoms are classic. He has one unusual symptom that doesn't seem to be described anywhere. His arms go "dead" several times during the day- this usually lasts about an hour, and during that time,both of his arms are weak and stiff, sometimes cold. He is able to move them, but only with great effort that results in shortness of breath and chest pain, so he keeps them still until the episode has resolved. Does anyone else have this symptom?? Quote Link to comment Share on other sites More sharing options...
jamernay Posted June 5, 2010 Report Share Posted June 5, 2010 My 17 year old son has POTS and most of his symptoms are classic. He has one unusual symptom that doesn't seem to be described anywhere. His arms go "dead" several times during the day- this usually lasts about an hour, and during that time,both of his arms are weak and stiff, sometimes cold. He is able to move them, but only with great effort that results in shortness of breath and chest pain, so he keeps them still until the episode has resolved. Does anyone else have this symptom??I don't have any great insight or helpful advice, but you are not alone! My arms also go weak, often unpredictably and I'll drop things. Usually it doesn't last for more than 15 minutes, but it can happen several times a day. I get exhausted afterwards and my arms often hurt and are also cold. Heat seems to help with the soreness. This is a relatively new symptom for me and I haven't had a doc evaluate it yet. You have my empathy and best of luck.Jamie Quote Link to comment Share on other sites More sharing options...
rach73 Posted June 5, 2010 Report Share Posted June 5, 2010 Hi,I have noticed over the last few weeks I have been getting dead arms and legs, that last for a while. I dont know how long as it is happening in my sleep. Ive checked the position that I wake up in, its usually on my back with my hands on my chest or by my sides, so no explanantion as to why they are dead. When I go to move them its pretty much impossible. I have tried to flick a table lamp on when my hand/arm has been dead and I can't do it. Unfortunately I have been so out of it (groggy) when its happened I couldn't tell you if they have changed colour.During the day I find my legs go to sleep much easier than before. I was going to post a topic on this so I am glad you have. My arms go weak during the day also but not to your sons extent.The other night I awoke with both arms dead and my right leg. My left leg was totally unaffected, I could move that around no problem. But to move my arms I had to swing them from the shoulder. Very bizarre. Im just glad to see Im not alone on this one.Rach Quote Link to comment Share on other sites More sharing options...
lieze Posted June 5, 2010 Report Share Posted June 5, 2010 I just notice this slightly.I think it has actually improved. Quote Link to comment Share on other sites More sharing options...
Simmy Posted June 5, 2010 Report Share Posted June 5, 2010 Possibly a blood flow issue, or lack thereof. I occasionally get numbing hands and feet (only once did my entire left arm go numb and part of my right arm), but it always seems to happen when I'm doing something stupid like standing too long. Does it ever happen while your son is exercising? Quote Link to comment Share on other sites More sharing options...
Mary P Posted June 5, 2010 Report Share Posted June 5, 2010 I'vr had very little use of my arms since Jan., 2007. I was spreading ice melter on a sidewalk when they suddenly just wouldn't work anymore. Then I found out that I can't lift much, not even a catalogue. I find it very difficult to make a bed or fold large items. I can't reach up for anything. I couldn't help decorate the Christmas tree...and on...etc. I always get chest pains and short of breath. Doing dishes wears me out completely but I have to keep trying to do as much as possible.The first N I saw in Dec., 07, recommended an MIGB test which checks for denervation of nerves to the heart, but his hospital didn't do this test. No one I have seen since has ever taken me seriously so I have asked to see a Cardiologist and hope I get some results. Between legs and arms our lives can be so very limited.If the C won't order one, and I know it's done at her hospital, I'll have to ask my GP to order it. I really do feel that it should point to something so I can get the help I need.Simmy, I hope you haven't had another of those terrible days when your HR went so high. That must be so terribly scary.Mary P Quote Link to comment Share on other sites More sharing options...
Simmy Posted June 6, 2010 Report Share Posted June 6, 2010 Thanks Mary. It wasn't scary, I knew it wasn't going to kill me, but it definitely wasn't fun. The only real emotion I was feeling at the time was anger at social security for not believing me. My mind was in "See, I told you so!" mode. But we're getting off topic.The first time I felt my arm going numb was the first time I had a POTS episode, while I was standing in our hotel room in Florida while on vacation. This is before I even knew how to spell POTS, let alone what it was or that I had it, so after standing for some time I felt "funny heart stinging", beating kinda fast, sweat pouring out of me and a numbing left arm... immediately my mind said, heart attack! Get to hospital now! Of course once I got there (scary drive) and was lying on a bed I felt better and along with everything else, the numbing disappeared. Today I know it was all due to gravity, and now, whenever I feel the tingles starting I notice that I'm standing or sitting up. For my body there's a definite connection. Quote Link to comment Share on other sites More sharing options...
juliegee Posted June 6, 2010 Report Share Posted June 6, 2010 My 17 year old son has POTS and most of his symptoms are classic. He has one unusual symptom that doesn't seem to be described anywhere. His arms go "dead" several times during the day- this usually lasts about an hour, and during that time,both of his arms are weak and stiff, sometimes cold. He is able to move them, but only with great effort that results in shortness of breath and chest pain, so he keeps them still until the episode has resolved. Does anyone else have this symptom??Sorry Martha, no great insight. I just wanted to let you know that I also have a 17 year old boy with dysautonomia.Very difficult as our kids face a period where they should be planning for their independence....Welcome. We're here to help or simply commiserate.Julie Quote Link to comment Share on other sites More sharing options...
Christy_D Posted June 6, 2010 Report Share Posted June 6, 2010 My 15 year old son used to get the weak legs and couldn't walk without help. He called them 'licorice legs'. He hasn't had it happen since starting Doxepin last October.Christy Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.