Growing CCI issues from a few weeks bedbound?

[GlassCannonLife]

Hi all,

I've been in the worst crash I've ever experienced for the last 3 weeks almost. I've gone from around a 20-22 functional scale, walking 2-3k steps daily but still lying down most of the day, to a not sure what on the scale, walking just to eat at the foot of my bed and to the toilet (200-500 steps daily).

I believe I have EDS or a similar condition but I have not been formally tested or diagnosed. I've previously had neck ache but mainly in my lower neck near my body (c5-c7 or thereabouts).

In the past week I've noticed an increasingly uncomfortable feeling of pressure/ache/pulling appearing at the base of my skull right where my neck starts.. It seems to be present when I lie on my sides, or on my back, and has now also become somewhat present when I am upright and eating etc.

I can barely position myself to get relief from it if I try and shuffle around with pillows etc and prop my neck up in the perfect way..

Extremely activity intolerant at the moment so can't do any stabilising exercises..

Does anyone have any advice on what to do here? I guess I will just have to ignore it and try and get out of this crash, and hopefully recover enough function to look into CCI properly.. Not sure what would be best.

 

[Judee]

Sometimes I like to lay with a pool noodle under my neck. You have to find the correct size though. I got the idea from a PT who recommended a rolled up towel for sleeping. The pool noodle seems to give more support though.

However, I don't sleep with the pool noodle. Instead I have a pillopedic pillow like the next link below shows but they're a little pricey, getting the right size is difficult, and not everyone finds them comfortable. However, they work on the same principle as the other two ideas. This SITE has a graphic to show what I mean.

If you try the towel idea, roll it so that your neck is fully supported but that your skull is still resting on the mattress. If your chin is tipped too high or tucked you probably need to make the towel fatter or thinner respectively.

 

[GlassCannonLife]

Sometimes I like to lay with a pool noodle under my neck. You have to find the correct size though. I got the idea from a PT who recommended a rolled up towel for sleeping. The pool noodle seems to give more support though.

However, I don't sleep with the pool noodle. Instead I have a pillopedic pillow like the next link below shows but they're a little pricey, getting the right size is difficult, and not everyone finds them comfortable. However, they work on the same principle as the other two ideas. This SITE has a graphic to show what I mean.

If you try the towel idea, roll it so that your neck is fully supported but that your skull is still resting on the mattress. If your chin is tipped too high or tucked you probably need to make the towel fatter or thinner respectively.

Thanks Judee they look good. I guess that's the first thing to try!

Pool noodles and foam rollers etc all seem to aggravate my neck more, I normally get a soft pillow and squish it into a desirable shape.. Just not working atm with this new inactivity.

 

[sb4]

I have been trying to fix my neck posture for a couple of years now. I have been trying a bunch of things including mewing.

Anyway, about a month or so ago I decided to sleep on my back but with the back of my neck extended. To be able to do this I need to jut my lower jaw forwards into an underbyte position. I did that and clenched lightly and was able to sleep well the first night, so I tried again the second night.

I woke up with pains at the base of my skull like you described and an almost migraine like headache. The headache was very much related to my neck pain and posture. It took a week for the headache to die down but then I was left with the base of skull pain and a light headache that would progress into a big one sometimes for the next few weeks.

Since then I have been making sure to sit up straight and keep my head relaxed at the top of my spine. No mewing, and no forcing my neck into what I think should be correct posture. I keep my butt and spine in good posture and let my nervous system decide where to rest my head.

This has resulted in the neck pain decreasing over the last few weeks as well as headache intensity. I have the same problem you have though wherein no matter what position I lay down in, it seems to worsen the neck pain (though on back is definitely worse). This means I often wake up with the neck pain and have to force myself to sit up straight for the rest of the day. This can be quite unpleasant when factoring in POTS but it is nowhere near as bad as your situation.

I would guess that we are more susceptible to neck problems due to this illness and that I worsened this neck issue with my constant messing around with neck posture. I think laying down in you caused a worsening. It's highly speculative but I think that most peoples skulls and jaws have grown wrong now (mewing) which means the jaw is always pushed back and that could potentially have problems on the cervical spine in people susceptible. At least it makes sleeping on your back difficult or painful.

 

[Jyoti]

Have you tried a collar? I have gotten some relief from wearing a collar from time to time. It is not a panacea for me, but it helps when things are really bad, which it certainly sounds to be your situation at the moment. A soft collar is best for me often, but I have used the Aspen Vista at times too. When I really dip into neck pain (and increased autonomic) symptoms. Your mention, @GlassCannonLife, of the pain of lying on your side makes me wonder if you have some rotational instability, which a collar should prevent to some extent.

 

[GlassCannonLife]

Have you tried a collar? I have gotten some relief from wearing a collar from time to time. It is not a panacea for me, but it helps when things are really bad, which it certainly sounds to be your situation at the moment. A soft collar is best for me often, but I have used the Aspen Vista at times too. When I really dip into neck pain (and increased autonomic) symptoms. Your mention, @GlassCannonLife, of the pain of lying on your side makes me wonder if you have some rotational instability, which a collar should prevent to some extent.

Thank you, no I haven't, I'll look into it!