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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Sleep

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Sleep › Reply To: Sleep

January 12, 2013 at 10:44 pm #3322
Barbara
Participant

Hello to all,

This is something that has most likely been covered but it seems that it is a never ending battle for some and for myself.
I have terrible trouble sleeping, both getting to sleep and staying that way. I ache quite painfully in my joints and seem to have restless legs at times. My palpitation’s wake me as well.
If anyone has any advice about pain management and sleeping that would be most welcome.

Blessing and metta to all.
Steph S 🙂

Hi Steph S,
This was my experience some years ago. The solution for me was to sleep sitting up, with my bottom 6″ higher than my feet (bed can be tilted by raising the head of the bed on books – or in the UK you can get something called Elephants Feet, from occupational therapy). I also found that wearing a rigid Philadelphia Collar (which cups the head) eased a lot of the pain and muscle problems, all over my body and the arrhythmias (to a degree) plus other symptoms.

Make sure you get ready for bed well before you get tired, including taking a pain killer, so once the feeling hits you, it’s straight to bed. You have to try and avoid sudden noises (so earplugs are good) as this may trigger adrenalin and we don’t control it very well, same with flashing lights (wear those airline blackout eye masks if you have to).

People usually think too much about things when they get to bed, this makes them hold their breath and this itself can worsen the pain. The way I get round this is to breath a little bit deeper and concentrate on the ‘breathing out’ bit, sort of making it a little bit noisy (if you can understand what I mean). This usually takes the focus away from everyday life and helps get me to sleep when otherwise I can’t.
Regards
Barbara
(UK)

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