Hi! I have been experiencing a new symptom, I have adjusted my bed every which way from Sunday. Anyway I wake up, (if I have slept) and both my arms or legs. sometime all 4 are dead. Numb like...... well you get it. my (squirrel!) where was I?......Oh numb. It hurts so bad and I have to lay there because if its my legs. Im taking a diggah (for you non bostonites fall on my face) The longer I lay there the more numb they get and the more painful, however. I can't use my extremities. So either way I am screwed. Anybody experience anything like this? Did this post make any sense? I would love to hear from you.
Waking with numb arms or legs? - My MSAA Community
Waking with numb arms or legs?
19 Replies
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starlight5 Thanks for your extra questions. I love this group of people! Anyway, It does not go away with position change. unless you consider getting out of bed a position change. It lasts about an hour once I am up. Often times I need help getting up, my cane will not help. I keep it by the bed for those days it might. Gosh I feel old! Shhh, don't tell anyone i occasionally use a cane LMAO! I have spoken with my Dr's and Pharmacist. They all say meds are not a cause and welcome to the unpredictable nature of SPMS The real shi&^%$ thing is when I wake up and no one is home. That takes some gumption and creativity to get out of bed when it is all four of my extremities.
Wow! my answer is all over the place. hope it makes sense. Have a great weekend!
• in reply to
I am SPMS, too. I have a trapeze (that's what they call it) attached to the top of my bed and I use it to pull myself it - I rejected the idea at first but once it was installed I realized how useful it is. I hated the thought of how it would look so 'crippled' (btw-I am not and refuse to be PC, sorry) in my bedroom but I adjusted rather quickly and my grandchildren love it.
• in reply to
to be vulgar, I was thinking of something else when you said trapeze above the bed. lol Sorry, sometimes I feel like I has turrets. PS. I can say that, my daughter suffered from a mild form. But that is where my mind went.
To be serious. That would be grate when just a leg or both my legs were like that. Only problem is when my arms and legs do it. Thanks for the help though. might be something to consider.
• in reply to
Haha that is exactly where my mind went when my doctor suggested it - I thought what did I say to my doctor for her to even suggest it...anyway it helps me a lot. You can do with it what you want, I use it to pull myself up and out of bed. lol
starlight5 I am trying to remember. Fairly certain that it built up. I remember like a month ago waking with slight numbness in my hand(s) etc. Then it just got worse and worse. I forget about just about everyday. However this morning I had been laying in bed because my legs did not want to work, so I rolled over and grabbed by computer and started going through this site and it occurred to me to ask you guys. I have got a little smarter in my old age. I now keep my phone tablet and computer charging in arms reach so I can entertain myself.
Hello - a pleasure to meet you-you made perfect sense. MS stands for 'multiple scars' so therefore you can expect the unexpected. Outside of the obvious bizarre symptoms of MS, I think one of the cruelest is the unpredictability of the disease, seemingly nothing you do makes it better nor can you really bring it on at will - it's the lack of control which makes managing it very difficult. Now back to you, yes I have those same symptoms of 'dead' arms/legs where I have to wake up to physically move them for fear they will never work again. I keep looking for a bed that will gently roll my body, moving it for circulation and tactile purposes - I don't think it is made yet and for sure Medicaid would not cover it!
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Hidden I use a sleep number. I am blessed to still be on work disability with real insurance. So before I realized I could hurt someone by driving because of my meds and exhaust. We got a sleep number. So my point is you can actually turn it all the way down (you became a taco). you can then once on your side in the taco, turn it up to where you are comfortable. If you are really lucky make it to your stomach. I can't sleep on my tummy. so I stay on my side, Wait!? did I just say tummy? I hate my brain on this disease!!
Morllyn• in reply to
Hidden Ha ha, if you have children, you will say tummy.
Sorry to hear about your new symptom!
Take care and be careful.
• in reply toMorllyn
Morllyn only problem is my son is 17 and my little girl is 15. AHHHHH I do have so so many nieces and nephews that are on tummy time so I will use that as my excuse as opposed to the fact I may be a little nutty.
• in reply to
Hidden Oh! nice to meet you as well!!!
Hi Rob, I wake up at all times of the night with the feeling that I have gone to bed with concrete blocks attached to my knees. It isn't until my medication kicks in that the weight dissipates but comes back when the meds are due again. I have PPMS at the moment the concrete blocks range from my knees to my feet, I just hope and pray it doesn't go any further. Blessings Jimeka
Hidden so sorry for this new symptom. It must be a bit frightening. Have u told your neuro?
Oh, continued reading and see u told your docs and they said it wasn't your meds but did they give u recommendations on how to deal with it?
All, I do want to say. I respond inappropriately often. I cover these things called feeling. At least I think that is what they are called. 
with humor and since I am a man hence the beard, thank you Karen-x for pointing that out in a previous post. Often my humor is sexual, ok very often. So please if I offend anyone, or if I come across as rude please please point it out. I will work on not acting like a twelve year old.
Thanks all!
Karen-x• in reply to
I pray there aren't a lot of 12 year olds using inappropriate sexual humor. OH wait, what was I thinking? I have raised four boys past their 12th year and I know they are using inappropriate humor.
Robh74 I'm not sure if I have talked to you before? Hello! Sorry for your limb symptoms, not much fun. I have the same symptoms too, my first time was years before my DX. I was already having numbness and weakness in the right leg but then my right arm started going numb, tingling and cold, worse than my leg! Now it is all 4, I have to use the cane occasionally when I get up sometimes I go a few weeks straight using it. Especially after a seizure! It is frustrating but what can you do about it! 😉
How long have you had MS? ;- )
I understand the numbness ,only is is just my feet and sometimes my big toes feels like it was crushed during the night. The big toe pain goes away after changing position, but numbness sticks with me. If I sit the numbness is not as noticeable. I hade a thoracic MRI done and confirmed delamation in spine consistent with MS, nobody knows if this will heal? I also have very weak muscles and bad right foot drop. Only relief I found was baclofen but it make me feel dizzy. Be nice to find a cure for this aweful disease!! I just started Tysabri and hope it goes better for me. Hang in there and keep positive!
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