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Waking up feeling like affected limb was disconnected/amputated


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Old 12-08-2016, 05:19 AM   #1
liayn85
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Unhappy Waking up feeling like affected limb was disconnected/amputated

Hello,
I have spastic hemiplegia that affects my entire right side. I am 31 years old and facing problems with nerve/muscle overuse and Chronic Fatigue Syndrome. I have a very mild case but my right arm is affected much more and I have associated movement that I would say is moderate to severe.

This morning I woke up at a normal hour (7 am) and on my left (unaffected side. Once I sat up I realized something horrible. I sat up and felt like my right arm was missing. I looked down and it looked flopped sideways and I felt nothing past my shoulder. I felt slight pins and needles, but a complete disconnect from my right arm. I lifted my right arm, which was covered a bit by blankets, and saw that it was still connected, but very floppy and feeling almost like a movie prop. I started to massage it, and it "came back to life", and now it feels the same as always.

I've noticed that sometimes lying on my affected side will inevitably lead to pins-and-needles due to my awkward posture and maybe lessened blood circulation. I am thinking that maybe this is due to sleeping on my right side, or it just freakishly falling asleep on me, but I am not too convinced since I woke up on my left (unaffected) side and since my arm wasn't under my body or anything and since I woke up at a normal hour for me. Of course, my arm and body could have been positioned differently while I slept. While I had been sleep-deprived the night before, I got a decent amount of sleep that night, and so I don't think it was just me waking up being dazed from sleep, I DEFINITELY felt what I did, and it was frightening and lasted a few minutes. I remember feeling extremely relieved that I wouldn't have to go to the hospital and that it was attached still.

Has anyone ever experienced this, particularly with hemiplegia? I am reading online to get a better medical grasp of it and hoping to write it off as my arm falling asleep, and it looks like only people with nerve damage (fibromylagia) are posting things online.

I woke up mostly in survivor mode, so the gravity of it all is only hitting me now at 2 pm.

I am hoping this does not have to do with a transition to a new symptom, or disorder as my body is prematurely aging OR a signal that something other than my muscles (nerves, tendons, fascia) is being EVEN MORE greatly affected. I already have neuropathy and muscle pain in my left inner thigh from the overuse.

Obviously with the CP, I often do not "know" what is going on with my arm. I do not feel as "connected" with my brain and my nerves and sense of feeling are affected. My propioception is bad, sometimes I do not realize I am still holding things with my right hand. So I am really hindered when it comes to "knowing" what is going on with my right side, particularly my right arm and hand.

Since this is extremely situational though individualistic, I respectfully ask that people with CP answer, not that doctors, therapists, or lawyers with mostly unrelated advice or narcissistic opinions answer. Or any comments stating that I have no business posting here and should instead see a doctor. I speak from experience. Everyone knows doctors mostly do not have the scientific ability to help adults with CP. I am living abroad and will be reaching out to my nurse practitioner for a consultation.

Thank you in advance for any helpful answers.

Last edited by liayn85; 12-08-2016 at 05:37 AM.

 
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Old 12-09-2016, 11:38 AM   #2
CindyM99
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Re: Waking up feeling like affected limb was disconnected/amputated

I can tell you that this past yr I got a virus and couldn't walk for 10 weeks. I was freaking out. I came back from a cruise having lost 25 pds in 2 weeks and I literally couldn't function. I "forgot" how to walk with crutches, I couldn't feel my legs properly -they literally "shut off" i was in my wheelchair thinking I may never walk again and had to stay at my Mom's. It was awful. They ran every test and it all came back clean except for having a virus they could never pinpt. I believe my legs shutdown because I was sick and they knew they couldn't carry me safely-listen to your body and get to a dr if it goes on too long but I will say, they were all pretty useless. You may just have to wait it out. I'm 44 first time anything like this had happened.

 
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Old 12-09-2016, 09:29 PM   #3
yankeegirl
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Re: Waking up feeling like affected limb was disconnected/amputated

I'm 41 with spastic diplegia and I have sleep problems galore, most of them pretty new. I also can get no help from doctors since I don't live near any that work with adults with CP. So I've been trying to solve my own issues.

I have been waking up with both my arms asleep on some days, even though I wake up on my back and am not putting any weight on them. My arms are not affected by CP, either--it is all in my legs. When I am first in bed and trying to fall asleep, though, my legs get numb right away, I get shots of random pain in my feet, and my legs and feet can burn when they feel like it.

Do you have numbness every day now, or only that one time? Do you know if you are at times sleeping in a funny position that is really cutting off blood flow? Do you feel it is random and makes no sense? I would say if it's only one time, let it go for now. If it is continuing, the parts you can control are what position you are in when you are falling asleep and what you can put in your bed with you to keep certain body parts in good positions for circulation.

If you can sleep on your back, do it. I think sleeping on your side, as both of us do, can cause problems. You might be twisting yourself into a position you don't even realize. For example I just figured out that although I make sure my hips are right over each other, I've been twisting one arm way in front of my torso. This affects my neck and my shoulder and my back. If you are on your back I think everything falls into line best.

I actually use a former foam mattress pad that I cut up into pieces in order to prop up my upper arm and upper foot when I'm on my side. It is much more comfortable than just letting those parts just drop down to the mattress, twisting and getting pins and needles.

I hope some of this helps you. I think it's so sick and sad that I've had to figure out how to help myself with these things since no ordinary primary care doctor would have a clue, and if I had the luxury of a CP doctor, that person would still be lost! Good luck, though. Let me know what happens.

 
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Old 12-13-2016, 09:31 PM   #4
CindyM99
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Re: Waking up feeling like affected limb was disconnected/amputated

Isn't it interesting that we all seem to have some form of the same problems (i am a terrible sleeper) yet we can't get any help? CP is the worst and the lack of help/resources is shameful. I hope you feel better.

 
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