This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi all,

I have tried the inclined bed therapy recently only to find my symptoms getting worse from the knees down. I raised the top of the bed in about 7 cm and the next day I woke up feeling like someone had poured sand in my legs. It's gotten worse ever since. I can't say for sure whether it was due to the inclined bed or to the fact that I've been taking Adartrel (Ropinirol) for Restless Leg Sydrome. Apparently Adartrel does not cause weakness nor heavy legs as a side effect but I must check with my doc to see if that's so.

Has anyone been through a similar situation? I heard very positive outcomes from the Inclined Bed Therapy so I was disappointed to feel worse afterwards...

Best,

Spiff

Hi Spiff, there has been some tightening of ligaments and muscles reported and someone else in the forum reported stiffness in their legs.

Another possibility is the drugs. IBT has been shown to increase the uptake of oral based drugs. Particularly in Parkinson's Disease where Ldopa has cause eratic OD symptoms and the drug had to be first halved then later halved again.

Restless leg syndrome has responded well to IBT using no drugs.

Raising the bed 7 cm is less than half the height required for good effect, so again it is unlikely given the slight angle that IBT is responsible. But this is something you can test for yourself to see if reverting back to flat bedrest also stops the problems your experiencing right now.

Remember it can take 2 weeks or more for some people to get used to IBT. They can experience discomfort, increased spasm, stiff neck, aching muscles and joints, back ache and pain initially.

Andrew

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Andrew,

Thanks for your comments. Having fluctuating symptoms in legs has been the hallmark of my MS so I won't blame it on the IBT so quickly. I will see what happens with the bed going back to normal and maybe cut on the Roipinirol (which is causing me fatigue and sleepiness, anyway).

best

Spiff

I agree with Andrew, the drugs are usually to blame for issues and if you ask doctors they know very little about drugs. Take you time with raising your bed, going slowly in stages is good advice. My husband and I still use IBT and swear by it. I have been up 7" since the end of December, I had liberation procedure in April and I still tilt my bed.

All the best.

Val

After 6 months of IBT and surgery can you determine which has helped you more?

Thanks Val

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I'm at 6" I wonder if 7" would help anymore. I had some minor improvements within the first few months of IBT. I'm 5 months in now. But all those improvements have disappeared over the last couple months. I was dreaming again, but I've lost that now. I wasn't having night sweats but they've returned with a vengeance. I've been under alot of stress so it could be a relapse I suppose but it would be a minor one.

Spiff1970 OR MODERATOR
any chance you can take this thread and add it to to original "Inclined Bed Therapy" thread?
It's crazy to have two threads identically named--especially one as important as this--if someone new just sees this, and not the original ,they might never find out the importance of IBT.

Hi Nicko

This is exactly why we need to compile everyones reports together so that people with ms can follow progress including any relapses atmospheric patterns and determine whether raising the bed higher or lower is suitable for each person. Without this data it will be another 17 years before IBT becomes mainstream.

Although it is not ideal to collect data that is not under the scruitiny of a hospital or university it is the best I can do with zero funds.

I would say yes, raising your bed another inch might prove to be more effective but would check the humidity factor locally and in your home. High humidity also comprimises circulation. Alun, from Naked Scientists forum on the Varicose Veins thread was first to raise a question about his veins being more swollen in high humidity.

Thes connections standing alone can be ignored but compiled together become a valuable source of data.

The other day at University of Hertfordshire, I was giving a talk about Operation OASIS, another project when one of the small group laughed and said anecdotal evidence combined does not make empirical evidence.

It may not be enough to publish a paper but when the anecdotal evidence is compiled not once but 3 times and each time the results are the same for people with ms and people with varicose veins and people with oedema it raises the question why are scientists, doctors, academics and government conveniently using this ignorant approach to stifle such a simple, benign and FREE therapy? Especially when it is based on sound and clearly repeatable evidence, albeit outside the control of the sickness industry.

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