I have suffered RLS for more than 20 years and currently take Gabapentin.
I have also had long covid since March 22- chronic fatigue type symptoms (14 different symptoms in all) which waxed and waned but hadn’t improved. So debilitating that I took early retirement and rarely left the house.
I have been using the work of Dr Howard Schubiner on Mind Body Syndromes ((also called TMS) to work on my long covid, with amazing results- after a month I really only have one symptom still with me. The work involves unlearning the neural circuits in the brain which are creating and perpetuating the very real and awful sensations, together with expressive writing to bring out suppressed emotions which are causing the mind to be in ‘danger’ mode and create physical symptoms. (He explains it much better than me!)
In his book Dr Schubiner mentioned RLS as being a Mind and Body Syndrome- I emailed him about this and he confirmed that yes, it is a Mind and Body Syndrome. I am now just starting to use his techniques to deal with my RLS and wondered if anyone else has tried his work, or that of his colleagues?
He has a website- unlearn your pain.com which explains his method-including some really interesting videos. The book I’m using is also called Unlearn Your Pain.
I’d be interested to hear your thoughts and experiences.
Sarah
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Edengirl58
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I'd like to know how you get on using Dr Schubiners method for RL. We often hear that the mind is plastic. I had debilitating chronic fatigue 20 Yrs ago after a nasty virus, over 6 yrs I worked back to full strength. Well done on getting your health back! I have considered Schubiners technique and may try it. Only requires time, thought and perseverance. All the best.
Hi Rayme, my RLS is less pronounced this last couple of weeks, though it does tend to go in phases anyway. I haven’t yet specifically challenged the RLS symptoms using Dr Schubiners work but am wondering if the active work I’m doing on the long covid is reducing my RLS symptoms as well. Time will tell. My RLS was getting gradually worse-I’ve gone up from 300mg to 600mg Gabapentin over the last 6 months or so. I’ll post back on here as I go and will be interested to hear how you get on too.
I’m skeptical of RLS being added to the long list that Schubiner has put together for “mind body syndrome.” Does he give evidence if this claim- specifically, peer-reviewed studies etc.?
The very term “mind body syndrome” itself is not especially scientific. A more up to date term is “Tension myositis syndrome” - see Wikipedia for an overview: en.m.wikipedia.org/wiki/Ten...
Some of the claims Schubiner and others make have been well validated by research; most especially, various chronic pain syndromes, likely including fibromyalgia and many others. The newer terms used for chronic pain of this sort include “neuroplastic“ pain and “nociceplastic“ pain; an older term still in use is “central sensitization.” The basic idea is that in persons susceptible to emotional anxiety about physical pain, the nervous system (including the brain) becomes over sensitized and can begin to produce what are perceived as pain sensations in response to otherwise normal body sensations. There’s a ton of literature on this, with the newer research, validating various kinds of mindfulness and psychotherapeutic treatment to slowly ease chronic pain of this sort.
But tossing other physical problems into the category of neuroplastic experiences is something that has to be done with care. Research suggests that other experiences that might be considered neuroplastic in some circumstances include chronic fatigue and maybe some others which I am not remembering at the moment. But here the research is not yet anywhere near as complete as for chronic pain.
Back to RLS: clearly there is some sort of psychic component to RLS, otherwise, a placebo effect would not be present when comparing treatments being researched to sham treatments. But that’s a placebo effect; I don’t actually know if there’s a nocebo effect that has actually been demonstrated. And I know of no research whatsoever that demonstrates that RLS is in the same category of neuroplastic pain, in terms of being entirely treatable by mindfulness and psychotherapeutic methods.
Yes it seems to originate with John Sarno’s work on TMS in the 60’s/70’s. Schubiner defines a Mind Body condition by ‘ruling out’ and ‘ruling in’. Ruling out a structural problem in the body first, by medical tests, and then ruling in MBS by certain characteristics being Functional eg affecting various parts of the body at different times, Inconsistent eg vary according to what one is doing, better after any activity which calms the danger signal, and Triggered eg brought on by stimuli that would not cause the symptom physically. So there is quite a list of illnesses/symptoms which match this criteria.
From all the posts on here it is really striking that with RLS what helps different folk, whether medicinal or lifestyle changes is incredibly varied- and this does suggest to me that what is happening to us may not be purely physical. Western medicine in particular categorises illness as either physical or mental - possibly because both can be treated with vast quantities of pharmaceuticals - making vast sums of money, to fund even more research programmes. I’m guessing there aren’t anywhere near the megabucks going into researching MBS.
It’s certainly a fascinating area and I’d love to hear others’ experiences of it. I’ll certainly be trying it for my RLS as I’m stunned at the difference in my long covid symptoms.
I am still only about half way through Schubiner’s Unlearn Your Pain book- I’ve been too busy starting to get out and about again since my long covid symptoms have virtually disappeared, but I’m ready to get back on it now. However, that said, I have managed to reduce my Gabapentin down by half, to 300mg- and am ready to go down to 200mg. My RLS (relatively mild in the last year or so,but still bad enough to prevent sleep) has not improved during this reduction in Gabapentin but interestingly it has not worsened at all. A work in progress- hopefully.
I’d be interested to know if anyone else is trying this, and how it is going.
Thanks for the update’ I am trying it too - but just started. This was a total game changer for my chronic pain, so I figure it can’t hurt to try it on my RLS too.
Great to hear that it worked so well on your chronic pain. Are you using the Unlearn Your Pain book, or something else? I’d be really interested to know how you get on.
Hello again! My wife was housebound with chronic fatigue for 6 years. We tried everything. Then 3 different people recommended the Lightning Process which is an NLP/CBT training process. Very American. At the time it cost £750 which was our savings but we were geting desperate so as we trusted the sources, we gave it a go.
My wife sat in a room with the practitioner for 3 days being taught this process. Within a week she was helping me decorate the house and after a few weeks was almost back to normal. If I hadn't seen it I wouldn't have believed it. In her case and I think in many, CFS is a Fight or Flight mechanism issue. This process bypasses that mechanism. It works for all negative emotions/thoughts/processes and she uses it widely in her life. You do have to work at it but honestly it's the best money i have ever spent on anything.
I used neural reprogramming techniques very successfully with long covid- really dramatic results like your wife had with CFS. So I’m now trying it using the Curable app for rls. I’m sure it’s to do with the neural circuitry, and the practitioners all seem to agree that rls is a mind body syndrome. Harder to do with rls being at night, but I’m persevering. Still v disruptive sleep but at least I’m not on the Gabapentin anymore.
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