Cerebral Palsy
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Waking up feeling like affected limb was disconnected/amputated

liayn85liayn85 Member Posts: 31 Connected
edited January 2017 in Cerebral Palsy
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.


  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Does anyone have any ideas for @liayn85 ?

    How are you feeling now?
    Senior online community officer
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Hi @liayn85 how are you getting on? 
    Senior online community officer
  • liayn85liayn85 Member Posts: 31 Connected
    Thank you for the concern, @Sam_Scope! I should have updated this. 

    I talked to my NP and I had exhibited Classic symptoms of simply sleeping improperly and awkwardly on my arm. There was probably a cut-off of blood circulation and my body was alerted to move to prevent damage though I was unconscious. I must have woken up shortly after and felt the effects. 

    This is a definite possibility for people with hemiplegia that also affects the upper body, due to musculoskeletal deformities, problematic non-use and habits, and awkward posture. Unfortunately I prefer to sleep on my affected side, though I can't remember this happening in some time.  The subluxation might be leading to a forceful pressure and weight bearing on my right arm. I'm trying to learn to sleep implementing different and better posture. 

    Thanks again for checking and have a great day!
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Oh thanks so much for letting us know! Hope you have a great day too.
    Senior online community officer
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