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”.
On December 17 I posted the following warning to 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.netwww.mscureenigmas.net/