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.