Proprioception Dysfunction - treating this improved my symptoms (I think!)

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Short Summary:
I saw an ophthalmologist who diagnosed me as having a proprioception problem (proprioception is your perception of your body position). He prescribed special lenses and an easy physical protocol. Shortly after these changes I had a significant and sustained improvement, which matches the improvements seen by five subjects in a small study run by the ophthalmologist.

Despite the improvements, I am still largely house bound and spent most of my days laying down, so I am not thinking this is a miracle cure!

Compulsory N=1 disclaimer:
I cannot be sure this is the cause of my improvement. However, there are objective signs that this protocol has had a physical effect on me.

Background:
I stumbled across this topic on Reddit where I found a paper (attached to this post) written by the ophthalmologist who I saw, Dr Orlando Alves da Silva. I managed to contact one of the original participants in the study who gave me further information. Dr Alves da Silva normally prescribes his active present lenses to people with dyslexia or ADHD. It was purely by chance that he found it appeared to help someone with ME/CFS (the one participant in the study I spoke with). That was the reason for testing on further ME/CFS subjects in this study.

The basic idea is that for some people a proprioceptive mis-calibration can cause improper posture or improper muscle tensing. The link to ME/CFS is not well understood. My theory is that improper tensing could be contributing to brainstem / blood vessel / nerve compression by pulling the neck / shoulder / skull bones into the wrong position.

I believe I was the 10th ME/CFS patient that Dr others DeSilva saw, and I understand that he has diagnosed all 10 as having this proprioceptive problem.

Background about me:
I have been diagnosed by a UK neruosurgeon as having some signs of slight instability (i.e. craniocervical instability, CCI) but nothing serious enough to warrant surgery. Most significantly, my internal jugular veins are severely compressed between the C1 vertebra and the styloid process on both sides. I do not have EDS or hypermobility and my main symptoms are fatigue, PEM, headaches, and orthostatic intolerance.

Signs that indicate this might help you:
1. Is your neck and/or upper back stiff, restricted in its movement, and/or painful? (I suspect this may be true for many of us and it's not a particularly useful diagnostic.)

2. Do you have poor posture, possibly with one shoulder lower than the other, one leg longer than the other, or some similar imbalance? When you stand normally, do you support yourself predominantly on one foot?

3. If you move your feet around without looking at them, can you accurately estimate in which direction they are pointing when you do finally look at them? It helps to have someone else move your feet without you looking at what they are doing.

For me the main indicators were numbers two and three. I've always noticed in photos that my right shoulder is lower than my left I have a mild kyphosis of my upper back. Also, for some reason, I’d always noticed that when looking away from my feet I would think they were parallel and then I’d look down to discover they were not. No idea why I was aware of that.

The protocol:
  • Wearing active prism lenses prescribed by Dr Alves da Silva. These are made by an opticians very near to his practice in Lisbon.
  • Some physical tips to encourage good posture.
  • Breathing exercises.
  • Infrared-reflecting insoles (to increase the amount of proprioceptive input to the soles of the feet).
  • Sleeping on your front on a very thin mattress with a firm support underneath - he shows you the correct position.

My experience:
Within a few weeks after wearing the active prism lenses daily, and practising the physical elements of the protocol, my headaches (which were daily, persistent, and painful) significantly alleviated. My energy threshold and PEM response to over doing things both improved. This change has now lasted for six months. How I feel on a day-to-day basis has become much more consistent, and my average day is significantly less painful and more enjoyable than before. I am still largely house bound and spent most of my days laying down.

Of course, I cannot say definitively that this change is due to the glasses. However the change did happen shortly after starting to wear them.

Objective physical changes:
Part of the diagnosis and examination process involves physical tests - with and without the active prism lenses. For example, opening the mouth as wide as possible. In my case I could open my mouth wider with the active prism lenses on. It seemed kind of magical. Another example is the exercise where you reach one hand over your head and the other up between your shoulder blades and try and touch them behind your back. After a few days of wearing the glasses I found I could do this with much more ease than before. Again, strange. I also notice that I now stand with my feet more parallel, and I am able to better gauge their direction without looking at them.

Conclusion:
I asked Dr Alves da Silva and he was happy for me to share his details online. My understanding is that the active prism lenses and accompanying protocol were developed by him. He is based in Lisbon, and I believe he has trained up some ophthalmologists in other countries such as Brazil, France, Spain, and possibly Germany. As far as I am aware, there are no practitioners in the US or the UK.

The appointment was inexpensive, around €100. The active prism lenses were more expensive at around €800 for two pairs. The cost was increased by my need for a fast turnaround time.
If anyone is interested in exploring this further, and considering visiting an ophthalmologist, I will write a document with details on the practicalities such as the specific types of frames that are compatible with the active prism lenses.

https://www.orlandoalvesdasilva.org/

EDIT
I forgot to attach the paper, but @anne_likes_red posted it a few posts down. I've attached it here too
 

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This is a very good write up of Dr Alves da Silvas approach. Thank you.

I also have indicators 2 and 3. :) 3 was a real eye opener!

I discovered this work last year when I did an online search for terms ME and proprioception and came up with the case of a math professor at Bath University who'd benefitted greatly ("recovered from ME/CFS") using active prisms. As part of his protocol to correct proprioception dysfunction he applied other postural/proprioceptive input...such as sleeping on a hard surface in the position that I understand feeds back a sense of 'safety' to the nervous system and, if I am translating correctly from articles I found in Portuguese, allows for improved slow wave sleep.

What led me to search for proprioception in relation to ME in the first place was that I've experienced two brief periods of remission, both cases in which one of the strongest features has been a sense I'm much more aware of where my body is in space.

We were actually planning a trip to Lisbon hopefully this year so I could be assessed but well, we know what happened to international travel in 2020. :/ It's still very much on my radar..

Thanks again for sharing. Hope you experience continued improvement. :)
 

JES

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Congrats for your improvement!

However, I have a hard time understanding what these glasses are supposed to do. Some form of prism correction lenses are prescribed for people who suffer from diplopia. Has the effect of these kind of lenses been validated in any other ophthalmologic research and does it actually involve testing your vision? It is also somewhat concerning that he has diagnosed all ten of his ME/CFS patients with this problem, because ME/CFS is a heterogeneous condition. It raises the question whether he is diagnosing everyone who comes to visit him with the same thing, which unfortunately sometimes is the case with alternative clinics and doctors I have visited.

It seems quite easy to accept that wearing glasses could help with headaches, but how would they affect the ability of muscles to open your mouth? Doesn't make any sense to me whatsoever. If these lenses alone work, why is the program accompanied by a lot of unspecific added therapies like breathing control? This muddies the waters, because assuming that a patient does all of the above and improves, it's no longer clear whether the improvement came from glasses, breathing, or a combination of these exercises.
 
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Hi @JES, I agree that the fact he has (to my limited knowledge) diagnosed all 10 ME/CFS patients with PDS is a potential warning sign. However he might have accepted the patients based on an initial assessment with the criteria in my original post, which would be indicators of PDS.

I would also point out that he is not actively seeking any ME/CFS patients, they are only a tiny proportion of his clients, and he does not charge very much. You're right to be cautious, and there isn't any robust evidence at this point. I was willing to take the chance, it's a very low-risk intervention.

It seems quite easy to accept that wearing glasses could help with headaches, but how would they affect the ability of muscles to open your mouth?
From my research proprioception seems to be a very strange thing, but it seems well established that it affects many aspects of the body such as muscles.

If these lenses alone work, why is the program accompanied by a lot of unspecific added therapies like breathing control? This muddies the waters, because assuming that a patient does all of the above and improves, it's no longer clear whether the improvement came from glasses, breathing, or a combination of these exercises.
Again, good point. The doctor told me that the whole protocol is important. This is based on his research and work on patients with things like ADHD. I believe there is decent evidence in the scientific literature that his protocol works for these patients. The effectiveness for ME/CFS is not well researched. There is a decent chance that not all aspects of the protocol are necessary, however the whole thing is not onerous so I am following it fully for now.

So basically, yes, good points. There is limited evidence for this but I feel reasonably certain that it has helped me, so I wanted to share in case anyone else would like to try a relatively inexpensive, low risk treatment.
 

Pyrrhus

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This is very interesting. Like many other ME patients, I have problems with proprioception, due to dysautonomia or small-fiber neuropathy.

The most obvious sign of problems with proprioception is clumsiness- bumping into walls, spilling drinks, etc. The second most obvious sign of problems with proprioception is the Romberg sign. The Romberg sign is when you stand upright with your feet together, close your eyes, and you unknowingly start swaying from side to side.

But I'm not sure how prism lenses could affect proprioception. I wonder if this doctor's work is related to the proposed treatments for Irlen Syndrome:
https://forums.phoenixrising.me/threads/are-you-ok-with-reading.78929/page-4#post-2302439
 

Hip

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Wearing active prism lenses prescribed by Dr Alves da Silva. These are made by an opticians very near to his practice in Lisbon.
Just trying to figure out in my own mind how prism lens can treat proprioception disorders. My understanding is that proprioception (sensing the positions of skeletal muscles) is achieved by sensors located within the musles themselves.

So this would appear to be a different system to the visual system (although both systems work in conjunction to help you maintain balance, etc).

The paper you uploaded above says this:
prisms lenses of less than or equal to four diopters can relax selected extraocular muscles when aligned correctly, and hence relax the skeletal muscles of the same muscle family; this leads in turn to a normalisation of the proprioceptive system.


Just came across this 2019 paper:

Hyperactivation of proprioceptors induces microglia-mediated long-lasting pain in a rat model of chronic fatigue syndrome
Our results indicate that proprioceptor-induced microglial activation may be a key player in the initiation and maintenance of abnormal pain in patients with CFS.
I wonder if exploring this proprioception angle might lead to new ways to treat pain in ME/CFS.
 

Boba

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@Donsboig

Are u still benefitting from the protocol and prisms? I had contact with A.C. as well as with Orlando. They say you have to readjust the prisms after six months. Did you do That?
 
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@Donsboig

Are u still benefitting from the protocol and prisms? I had contact with A.C. as well as with Orlando. They say you have to readjust the prisms after six months. Did you do That?
Hello, yes I do believe I have maintained my step improvement, and things have perhaps very incrementally improved on top of that, though that could be because I am addressing and trying other things.

I did go for a 6 month follow up and was told that the prism strength had changed slightly so I now have one pair of glasses with each prescription. Orlando said I may need to switch back and forth between them, and that my body would tell me when, but to be honest I've just been wearing the new pair only! Whether the readjustment did much I am not sure.

I don't know if you've talked to A.C. about this but I noticed he has removed the proprioception stuff from his personal webpage, so you might want to edit your post to remove his name?

I would be very interested to hear your experience of the whole thing and what kind of improvements you have seen, if any.
 

ChookityPop

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I dont know if I have proprioception or not. I have dysautonomia and suspect SFN.

I am not clumsy, not bumping into walls, spilling drinks etc. I actually feel that I still have pretty great reflexes. Though I might sway a little bit during the Romberg sign?

When I got sick I had lots of trouble with my eyes from blurry vision, light sensitive, exophoria and accomodative spasm. No history with eye issues prior to getting sick.

Ive found that without prism glasses I get more strainy eyes, fatigued, easier brainfoggy and (at times) fall asleep if I use screens, sometimes very fast too. The falling asleep part began happening more frequently lately so I hope using the prism lenses can keep that in check. I only use them when using my mac or watching tv atm. Maybe I should try them on 24/7 again..

Made a post about my experience with prism lenses here.
https://forums.phoenixrising.me/threads/experience-with-prism-lenses.84792/

Is active prism lenses different than "regular" prism glasses?
 

rel8ted

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I had a patient once with a severely autistic child that had been prescribed prism lenses to "treat" his autism.

I think sometimes we all want a cure so desperately we will try anything.
 
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Sorry for the long reply, I'm a newbie and will no doubt learn how to express myself better on this forum.

Just trying to figure out in my own mind how prism lens can treat proprioception disorders. My understanding is that proprioception (sensing the positions of skeletal muscles) is achieved by sensors located within the musles themselves.
The muscles that move the eye provide a lot of proprioceptive information. Here is a thought experiment to explain why this is reasonable. Move your eyeballs to the left and look at what you see, then close your eyes, move them to the right and then open them and look at what you see. How do you know the first image lies on your left and the second image lies on your right? The answer is because the muscles that move your eyes have fed the information to your brain about where these images lie relative to you, i.e. these muscles supply the proprioceptive information to the brain. If those muscles provide the wrong information, then our sense of proprioception becomes dysfunctional.

However, I have a hard time understanding what these glasses are supposed to do...It seems quite easy to accept that wearing glasses could help with headaches, but how would they affect the ability of muscles to open your mouth?
One consequence of a dysfunctional proprioceptive system is that we involuntarily contract certain muscles in our body, leading to asymmetry of the body (for example, one shoulder higher than the other, or a jaw that doesn't open as wide as it might) and fatigue (because contracting any muscle requires energy, and doing so indefinitely requires a lot of energy). The observation by Dr Alves da Silva is that it is possible to use glasses containing especially weak prisms to relax targeted muscles around the eye to help normalise/rebalance the proprioceptive information that they send to our brains. As a consequence, muscles that have been contracted involuntarily will now relax. The diagnosis described in the paper posted higher up this thread is based on this muscle relaxation.

Congrats for your improvement!
If these lenses alone work, why is the program accompanied by a lot of unspecific added therapies like breathing control? This muddies the waters, because assuming that a patient does all of the above and improves, it's no longer clear whether the improvement came from glasses, breathing, or a combination of these exercises.
The other therapies came first in research by a posture specialist Martins da Cunha from the seventies. The prism glasses came later and they accelerate the process. You are absolutely right that one could try only part of this programme, and indeed, this is the right first step for someone who can't visit Dr Alves da Silva in person. This is unlikely to help everyone, so as a first step, if there are any "Signs that indicate this might help you" as in the original post of this thread, then that person might choose to now lie down only on a hard surface (see Appendix B, item (4) in the paper posted higher up this thread). The point is then that at least the person suffering from ME/CFS gets the right proprioceptive input while lying down with their eyes shut, and of course this is a one-off change that is very inexpensive. In my experience, this improved my sleep pattern literally overnight, but I was using the glasses during the day as well, so my experience doesn't help to distinguish between the benefits of these two aspects of the treatment.

Despite what I wrote in the previous paragraph, @JES makes the excellent point that there has been too little research on this to draw strong conclusions. I would love nothing more than for someone with the right expertise to investigate further the link between ME/CFS and proprioception. The important point here is that Dr Alves da Silva's work can help to correct a dysfunctional proprioceptive system, and for some patients with ME/CFS, this can be beneficial. As @Donsboig points out:

the whole thing is not onerous
I have worn these active prism glasses and followed the rest of the posture protocol for over three years now, and while I would much rather not have to do this (and have my glasses realigned by a friend every month or two), it is much better than the alternative.

Is active prism lenses different than "regular" prism glasses?
The term "active" was coined by Dr Alves da Silva and it refers to an especially low power prism - no more than 4 diopters. I'm afraid that I know nothing about "regular" prisms, but my understanding is that they would typically use prisms of more than 4 diopters.
 
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@crepant very informative and thoughtful post, thank you.

I also experienced an almost overnight improvement in my sleep, more like over the course of a couple of weeks but the improvements started almost immediately.

I think your idea of someone trying to sleep (and possibly rest during the day) on very firm surfaces is a good one, if they can't get to Lisbon or just want to try something inexpensive.

I find that if I spend a couple of hours during the day on the sofa instead of my firm floor mat I feel noticeably worse. My best position for resting is the same as the sleeping position prescribed by Dr. Alves da Silva
 
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I am interested in trying this, especially since no drugs seem to be involved. However, I am in the U.S. and have not been able to convince doctors (though not opthalmologists) to try novel treatments.
 
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As a first step, you might follow the link shared in the thread at the top to Dr Alves da Silva’s website where he has a “contact” page. I know he has trained some practitioners in different countries and he’ll know if there is one near you. Hope this helps!
 

lenora

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Some of what I've read is rather alarming, such as sleeping on your front. If you're suffering from a cape-like pain that goes over your shoulders around your neck and causes major pain, extending into your arms....then you may have something that is serious and could be harmed by this technique. (Not berating, just stating.)

I have an illness that was considered very rare at the time, Syringomyelia, and I, also would "sleep" and my position would always end up being diagonally across the bed even though it felt like I was perfectly straight. Out of interest, I used to be a stomach sleeper many, many years ago. But the illness was something that was, in fact, killing me at the time.

Fortunately after going from Dr. to Dr. I did find a neurologist (young, we both were and just starting out) who recognized what I had only b/c he had volunteered in a Third World country at one time. So I had primitive surgery to release the fluid that was building up on my brainstem....a shunt was inserted and within a few mos. I was back in the same position, but the pain was intolerable.

I finally found a S. African neurosurgeon who was doing experimental surgery on another illness I have, Arnold-Chiari Malformation, which was new then, took time to perfect but is commonly done now. The MRI allowed these doctors to look inside the spinal cord and the part of the brain causing the problem. I did have what was then successful surgery and live with what I have to today. I walk, eat, talk and probably look normal to most people. I also have ME and now a number of other problems. I haven't been out of pain for so long that I wouldn't recognize a pain-free day. That burning, nerve pain...it's constant.

The only way you can get a correct diagnosis is via an MRI, with and without contrast. Often people with SM do have problems with their eyes and while special lenses may help the diaganol problem in bed, they don't help with the overall posture problems....these are separate issues.

I'm not saying you have what I have....just that there are plenty of illnesses out there that can cause these symptoms, so please get a proper diagnosis from an expert. I was incredibly fortunate as the MRI had just started being used....I can remember going at about 3:00 a.m. for an appt., b/c there was such a demand for the machine. It was used 24 hrs./day. Today it's commonplace, but has saved many lives. Things have definitely changed for the better, but there is still no cure for so many of our problems. Yours, Lenora.
 
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Sleeping on your front on a very thin mattress with a firm support underneath - he shows you the correct position
A much better three word description than Donsboig's "on your front" would be "the recovery position". The important aspect for sleeping isn't the position (I slept only on my back for the first two months), it's the hard surface underneath a thin foam mattress or a mattress topper.

If the symptoms were caused by SM, the diagnosis of proprioception dysfunction would be negative because a positive diagnosis requires an immediate and demonstrable improvement in muscle tone in the neck after wearing specific prism lenses. If the origin of the symptoms was SM, then this would not happen. I agree completely that these symptoms need not only come from proprioception dysfunction. I also note that the prism glasses do nothing to help a patient's sight or any other problems with their eyes.

Thank you @lenora for sharing your story, and thanks too for not berating. I've not joined an ME/CFS forum since recovering in 2018 (after first falling ill in 2014) precisely for fear of what the tone might be, and I'm grateful that even in raising an alarm, you did so in a genuinely nice way. I stumbled upon this thread and joined the forum in order to answer a few questions that had been posed in this thread, hence my rather long post above. My observation here is simply that if a patient with symptoms of ME/CFS is diagnosed with proprioception dysfunction, then the treatment has shown positive benefits for several patients and a spectacular recovery for a lucky few (me included). I make no claim whatsoever beyond that, and certainly no claim for someone who isn't diagnosed with PDS. I'm a pure mathematician, not a medical doctor or an opthalmologist, but I was so excited to discover that my ME/CFS had a purely physiological diagnosis and treatment despite several doctors telling me that there was nothing physically wrong with me. After I recovered, I simply wanted to find out if I was the only person with ME/CFS who also had PDS. I was even more excited to discover that I wasn't unique! Thanks again, Alastair