Originally Posted by booklover

Hi to all my long suffering sleep deprived late night companions,

So these are the problems of daily life once taken for granted 20 yrs ago, and now such an enigma I am trying to unravel. Here goes....

I am in the process of transitioning from sleeping in a recliner full time(for the past 3 years) to spending some time sleeping in a bed. I have a background of TOS (bilateral scalenectomies/ rib resections), and CRPS2 (mostly left upper) with bilateral partial brachial plexus injuries (mostly left-sided long thoracic nerve palsy (LTN) and right-sided radial nerve (RN) palsy and ulnar is also affected). The final blow was damage to the right brachial plexus during TOS surgery 3 years ago, that was my partial weight bearing side. Since then I have been unable to tolerate the pressure of sleeping on the mattress/bed in any position without setting off severe burning pain. Sleeping on my back or either side exacerbates pain due to nerve damage and also allodynia /hyperalgesia related to CRPS2 on left side.

Has anyone else noticed they have difficulty sleeping on their back with TOS or long thoracic nerve injury? Any ideas why? I get severe burning around spine, LTN, sweating, abdominal pain and GI/autonomic symptoms, including bad rebound symptoms the next day. Has anyone else tried three-quarter side lying with much success, if so would be interested in knowing how you support your body (and keep pressure off nerves)?

I have been working with two occupational therapists who came up with a recommendations for different pressure care products for me to trial(such as Roho, Sofflex). We are also considering sleeping positions, bed, sleep angle, options for neck support etc.

I’d be really interested in hearing about other people’s experiences with sleeping positions and how you have tried to avoid unwanted positions, affecting the parts where you have nerve damage/injury whilst you're asleep (e.g. not stretching damaged nerves). I would also love to learn about any relevant knowledge ie I noticed someone posted that back sleeping stretches the scalenes.

Thanks
Booklover