This Is MS Multiple Sclerosis Knowledge & Support Community

On November 29, 2014 I published a blog entry titled “Progressive MS and the Spine” on this site. I entered the same post on Thisisms.com the same day. In response Stillhaha wrote

“Thanks for posting this.
Personally, I keep finding excuses (foolish, impractical ones) to avoid trying Inclined Bed Therapy for my PPMS. Your post makes me think about CSF and if I can repair things.”

I decided to try an Inclined Bed as well, thinking that I could facilitate the flow of blood and CSF fluid from the head to the spine which seems to stagnate during the night leading to morning “MS symptoms”.

MISTAKE!

On December 17 I posted the following warning to Stillhaha:

Stillhaha:
I just tried Inclined Bed Therapy and think it is a VERY BAD IDEA for people with Progressive MS (Primary or Secondary) or at least it was for me. What it did was further stress my back by compressing the lumbars and sacrum. After a week I could barely walk. The Osteopath told me that my mid section was totally compressed. After treatment and today I am recovered. I'm using myself as guinea pig, but this experience illustrates the paramount role of the back in my Secondary Progressive MS, the vertebrae were either compressing the spinal cord directly, or the cerebro-spinal fluid pressed on the cord. Once the flow resumed I could walk again. Please don't do the same to yourself, and if you already have get a therapist to re-align your back.

Now, I recognize that I bought a cheap foam mattress which didn’t support the spine. It could be that a firmer mattress would have prevented the impression that all my body weight sank into the pelvic area. But it was such a bad experience, I will never I try it again. I should have stopped after the first night when a terrible tension overwhelmed the upper back. I think I actually injured myself, I could feel the muscles wrap up my “good” left lower leg, and the leg itself had weakened. The impression of muscles “wrapping” my leg has irritated me occasionally since an attack summer 1989 which leads me to think that an injured spine is at the origin of my mobility problems.

Tomorrow I visit the Osteopath again. I am going to ask him for stretching exercises to keep my back elongated.

When I was diagnosed in 1980 MRIs didn’t exist. In 1990 an MRI to the head revealed some lesions, but the spine was not examined. Though the Evoked Potential eye exam was positive, I have had only one minor vision anomaly when a stress attack caused double vision. Once I had calmed down the focus returned. I believe most of my mobility problems originate in a damaged spine which restricts the flow of fluids bathing the central nervous system. Body tension exacerbates the blockage.

One interesting side note. My husband had a fit when I ordered the mattress which admittedly being foam was not of good quality. Being unavailable in France I ordered from the US and with shipping and taxes it was expensive. While it made my MS worse by stressing my back, it helped my husband magically. Since I've known him he wakes up brutally after an hour's sleep because of stomach reflux. Gravity prevented the reflux and he slept like a baby. The only incline mattresses available here are for babies since it is recognized that digestive reflux can choke a baby. So, duh, why not see the same connection for stomach reflux in adults. It's a big medical industry, sticking a tube in the stomach to see what's going on, constant medication. Anyway, irony of the story, the mattress helped him but was a disaster for me.

Previously published on my site MS Cure Enigmas.net
www.mscureenigmas.net/

It makes perfect sense to me that acid reflux would be curable with IBT. I think there should be less emphasis on the degree of tilt. Any plumber can tell you that any tilt at all will make liquid run downhill. The amount of liquid involved in CSF is not as large as it is with blood. It seems to me that if you sleep long enough you will accomplish the liquid transfer, and that after that maybe it's too much. But you should make sure to get you complete 8 hours, for neuroprotection by waste clearance. There is a phone app that detects you sleep phases, and supposedly tells you when you are in REM. The problem might be keeping yourself far enough away from the EMF. I think this is minimal whey it is receiving (even the ring signal), but probably excessive when you transmit. So as long as you don't answer the phone, you are OK.

1eye wrote:It makes perfect sense to me that acid reflux would be curable with IBT. I think there should be less emphasis on the degree of tilt. Any plumber can tell you that any tilt at all will make liquid run downhill. The amount of liquid involved in CSF is not as large as it is with blood. It seems to me that if you sleep long enough you will accomplish the liquid transfer, and that after that maybe it's too much. But you should make sure to get you complete 8 hours, for neuroprotection by waste clearance. There is a phone app that detects you sleep phases, and supposedly tells you when you are in REM. The problem might be keeping yourself far enough away from the EMF. I think this is minimal whey it is receiving (even the ring signal), but probably excessive when you transmit. So as long as you don't answer the phone, you are OK.

Hello 1eye:
Please excuse my delay in responding to your post. My inclined bed experiment nearly turned into a disaster. The only positive aspect is that I can very clearly see that my left foot symptoms originate in pressure on the spine. I believe that to control/delay progression MSers should strengthen the spine as much as possible. In the mornings when I wake up a bit groggy as though blood/CSF circulation is stagnating, I give myself a quick TENS acupressure treatment, that seems to get me going OK.

I find your posts interesting and full of info. So sorry again for my delayed response. Vesta

We got rid of our foam mattress for the same reasons. It did not support our spine correctly, caused us to overheat, felt uncomfortable and we could feel pressure points. Since then, we have slept on a natural fibre filled mattress from Visprung and it's heavenly

Thanks for this post

Kind regards Andrew

I have a sleep number bed which is basically an air mattress with a 1" foam topper. The firmness of the mattress can be adjusted by increasing or reducing the air pressure. Any thoughts about that? I also raised the head of the bed 4" because of acid reflux. That started before MS began.

Lately I have been using a wedge shaped pillow instead of the inclined bed. The pillow is two feet long and 8" at the high end and 1" at the low end.

I get muscle spasms at night that keep me awake for hours sometimes, although I rarely get them during the day. The wedge pillow seems to help a little with that.