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

[anne_likes_red]

@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

Here is the sleeping position, described in French, by one of Dr Alves da Silva's colleagues.
Dr Alves da Silva endorsed this description when I checked with him last year.

 

[anne_likes_red]

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.[/QUOT

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

I'm so pleased you posted!

I've experienced temporary remission just twice in the 30 years I've had ME and in both cases by far, the most striking improvement was with my proprioceptive function.

I already knew about some similarities between space flight sickness and ME so I figured proprioception was worth some further research. I found your testimony pretty quickly and made contact with Orlando. Thanks so much for sharing your story online in the first place.
Anne (NZ).

 

[Boba]

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

Hi Alastair,

thanks for sharing your story here on PR. We were in E-Mail contact at the beginning of this year. I read the paper and contacted you to learn more about proprioceptive dysfunction. I can understand that you were hesitant to share your story, but am very grateful that you did. Furthermore you invested a lot of time to write the paper and proof that you‘re not the only person for whom the diagnosis fits. Thank you for that as well.

I fit the physiological profile of someone with PD, but also have strong inflammatory markers in my blood (tnf-a, IL6 and IL8). Were any of those tested with you? Furthermore would you mind describing your symptoms when you were at your worst? I think a lot of people here on PR might be interested in the symptoms to compare them with their own.

Again, thank you for sharing and investing your precious time when there are so many other thing you could do as a recovery patient.
Best, Bahti

 

[nerd]

Having read through this subject, I'm a bit more hesitant now that the investment is worth the chance of improvement. If patients have access to a specialist, I'm positive that it's worth trying, especially when it's covered by the insurance plan. I don't know any specialist unfortunately. I have already visited various orthopedics and ophthalmologists but with the typical experience.

I have anisocoria that correlates with my ME severity quite well, especially during PEM. But even if it's not visible, I notice that I have one-sided focusing issues. I also have a mild scoliosis. Neck pain also plays into my condition. Since I've started my keto diet, especially when I increase my calories, I have periods when my back seems to be quite straight, but also causes FM-like pain. Typically, I have always had a low muscle tone. Also noteworthy is that I have mild nocturnal lagophthalmos. I've had it since my childhood when my seizures started.

All of these issues come down to the same denominator, namely the smooth muscle tone. This also fits into the pathophysiological findings in that certain AChR antibody subtypes affect smooth muscles and/or brain cells more dominantly than skeletal muscles. The PD therapy seems to relieve these muscle nerves or the neurometabolism and thereby provide more energy during the day. If these muscles can't relax during the night, it's not surprising when the sympathetic system is overactivated during the night.

I personally don't believe this plays a role in the etiopathogenesis but I think it can help with the ME pathophysiology and symptom management to identify if any stressors on smooth muscles exist during the night. This might be the mattress, any sorts of light sources in the bedroom during night, nasal breathing issues that indirectly affect the airway smooth muscles, blue light and emotional/psychological triggers that prevent the parasympathetic nervous system from activating. This, again, is connected with the complex glutamatergic and GABAergic system.

I'm going to replace my bed sometime in the future. Hopefully, this eliminates another factor.

 

[MartinK]

Just got message from dr. da Silva after I wrote to him all my problems, symptoms and history "There is a high probability to be a PDS"

But... need to find trained doctor with lens experience... worth consulting more closely!

if someone wants to compare with my difficulties, this is that I wrote:

I have severe ME/CFS (8 years of illness, last 2 years bedbound) and I'm really trying to rule out physical causes, because many immune/viral/lyme treatments failed or was no effective.

I was mountain bike rider, very good balance, good eye vision and my ME/CFS started to mild after flu-like symptoms (this is why I'm not sure if this cause physiological issue. Also 1 year before my ME/CFS started, I had some dizziness out of nowhere and unexpected exhaustion after several mountain bike races.

I HAVE:
- hyperkyphosis, scheuermann and little scoliosis from child age (now 32 years)
- forward neck (cervical spine 3T MRI was OK doctor said)
- massive muscle fatigue and pain after every activity, worst in places on attached picture
- very high inflammation feelings in muscles and spine
- very easy to get PEM
- need a sleep long than 8 hours (less cause PEM)
- orthostatic intolerance (no POTS, but walk, sit or stay = PEM)
- neck and back around spine stiffness

I DON'T HAVE:
- brain fog, memory loss, concentration loss
- no psychic problems, no depressions
- looks like no cognitive dysfunctions
- hearing, taste, smell and touch/pressure...all normal
- never had paresthesias
- never had cardiovascular signs

 

[lenora]

Thanks for the information, @crepant. You explained it well and all I really wanted to do was to make certain people had a proper diagnosis before assuming it's something they read.

I'm glad this worked for you, is continuing to help you and hope that others will find the same relief of their condition.

No one should ever be made to feel they're being berated for passing along information. I'm glad you responded. Yours, Lenora.

 

[crepant]

I fit the physiological profile of someone with PD, but also have strong inflammatory markers in my blood (tnf-a, IL6 and IL8). Were any of those tested with you? Furthermore would you mind describing your symptoms when you were at your worst? I think a lot of people here on PR might be interested in the symptoms to compare them with their own.

Thanks @Boba. The NHS (National Health Service in the UK) carried out three rounds of blood tests on me in late 2014. I'm afraid that I didn't ask what they were testing for, safe in my ignorance that I would learn a lot after a referral to the Fatigue Management Clinic. They gave me a colouring book, and I didn't ever return to my doctor to discuss ME/CFS.

I was at my worst in the winter and early spring of 2018 and I recorded everything in this unpublished note; I was Patient 1. In summary: severe fatigue (only time out of bed was to crawl to bathroom once per day); thigh pain; repeated and prolonged nausea; cold feet; brain fog preventing me from doing simple arithmetic; inability to stand, sit, hold a conversation with one person for more than a few moments, or watch TV without suffering increased pain and heightened fatigue lasting a week or more. Also, I could fall asleep at 9-10pm, but after waking at about 2am, the rest of the night was typically pretty horrid.

If these muscles can't relax during the night, it's not surprising when the sympathetic system is overactivated during the night.

@nerd, absolutely! I'm afraid that I had to look up the word etiopathogenesis but I agree! I was on a memory foam mattress for years, and after I was diagnosed with PDS, Dr Alves da Silva pointed out that this wasn't the cause of my ME/CFS symptoms, but undoubtedly exacerbated my problems. As for the true etiopathogenesis in my case, old photographs confirm that my left shoulder was strangely high for the last 30 years and poor health problems were probably inevitable for me; the triggers just happened to be burning the candle at both ends (2014) and a virus when already run down (2017).

I'm going to replace my bed sometime in the future.

Do consider the wooden boards plus foam mattress (IKEA tudal mattress topper is recommended). It's much cheaper than a "good" (indeed, any) mattress, but it might eliminate one stressor. If it feels horrid for more than three nights, then it might not be right for you. At worst, it was an inexpensive experiment.

if someone wants to compare with my difficulties, this is that I wrote

Gosh @MartinK, this is brutal reading. I can't say anything for sure as I'm not qualified, but I can at least say that I too had good balance and hand-eye coordination, so when my wife told me that a opthalmologist specialising in proprioception was coming to visit me I felt sure it wouldn't be relevant. Also, as noted above, my relapse happened after a virus of some kind. As a first step, I'd suggest you think about the "mattress topper on wooden boards" suggestion, because if it does help even a bit then you've already won (and of course you could investigate PDS further down the road).

 

[MartinK]

"mattress topper on wooden boards"

yeah, I got it! Because when I was better I made a bed from pallets and there are plywood on it...but there is classic mattress on it.

Now trying to find list of trained doctors - has anyone tried to get it? Waiting for dr. da Silva answer about it for some time...
Travelling by plane is unreal...Im bedridden, but I can drive in the trunk of our big car :-D

 

[crepant]

I'm afraid that I don't know names of those he has trained (where are you in the world? I know of some countries where people have been trained).

For now, you might consider the following:

• wooden board (possibly cut in two so the pieces fit in a car) on your bed base, then add only a mattress topper (I used just 5cm thick foam for first 12 months, then bought an IKEA tudal mattress topper). No mattress! I claim that it's firm rather than horrid. If it's going to help, you're likely to know within the first few days. If you do see a benefit (possibly less pain, more refreshing sleep) then I'd recommend against using a normal mattress even when travelling; as @Donsboig points out above, if this happens you'll ask yourself why anybody sleeps on a regular mattress!
• Try to lie down only on the mattress topper, i.e. your floor is better than your sofa!
• do you stand predominantly with your weight on one foot and your other foot rotated slightly out? Stand facing a mirror and see if things that should be level are actually level! If not, it might be worth your trying to keep shoulders level and feet parallel. Put simply, being a bit more conscious of how you stand and sit can't do any harm, e.g. stop crossing your legs, sit without resting against the back of the chair, avoid soft chairs of any kind, etc.

I'm really just summarising bits from Appendix B in the paper posted higher up this thread. As ever with ME/CFS, don't push, just see how whether it works for you. I can't promise this will work; if you're getting no benefit after four or five days, then I fear the experiment failed and I'm sorry! If you do feel a benefit, please let us know. This approach certainly benefits some people with symptoms of ME/CFS, but I don't know who is most likely to benefit. Good luck!

 

[MartinK]

thank you @crepant ! my english is not well, I also need to understand test with closing eyes...and see what happens!
Im from Czech Republic, dr. da Silva recommended one doctor from France and one from Italy... but I want to find someone who "knows" nearest me... Germany...Austria...Poland...

 

[MartinK]

Hi, I'm going to experiment with a hard pad over the weekend. I'd like to try and sleep that way, but I'm afraid I won't get enough sleep and will have PEM. Is a pillow forbidden? I don't see it in the video. Did the doctor give any details?
@crepant
@anne_likes_red

I'm also wondering who among the doctors in our country might know something about proprioception dysfunction - neurologist? neuro-physio doctor?

 

[Donsboig]

Hi, I'm going to experiment with a hard pad over the weekend. I'd like to try and sleep that way, but I'm afraid I won't get enough sleep and will have PEM. Is a pillow forbidden? I don't see it in the video. Did the doctor give any details?

A pillow is technically "forbidden" but when I started sleeping with this new setup I would keep a pillow nearby and spend some of the time sleeping on my side. The first few nights I probably managed 2-3 hours in the correct position. I was able to increase this over the next few nights.

Even today, I sometimes spend a few hours sleeping on my side, but about 80% of the time in the correct position.

I think it is important to get enough sleep, so don't force it!

 

[nerd]

Melatonin and antihistamines or Taurine makes me sleep relatively deep, but I doubt it helps me if I sleep without my orthopedic pillow. With normal pillows, my neck gradually tenses up. I also tried a very rigid pillow made of sea weed, it's sometimes helpful as well because it basically stays in place and gives the neck support if I sleep on my back, but the orthopedic one is better I think, especially when I feel weak. Without any pillow, my neck wouldn't have any support.

 

[anne_likes_red]

Hi, I'm going to experiment with a hard pad over the weekend. I'd like to try and sleep that way, but I'm afraid I won't get enough sleep and will have PEM. Is a pillow forbidden? I don't see it in the video. Did the doctor give any details?
@crepant
@anne_likes_red

I'm also wondering who among the doctors in our country might know something about proprioception dysfunction - neurologist? neuro-physio doctor?

Hello. do you mean in the US? If so, there was at least one neurodevelopmental optometrist interested in this angle. https://www.stepheyoptometry.com/the-dr-stephey-difference.
If you look at his podcasts, number 26 is a fairly recent interview with Dr Alves da Silva.
I have no idea if Dr Stephey treats according to the protocol discussed here. I suspect not, but he may know someone who does?

Dr Alves da Silva's Proprioception Dysfunction treatment has always been a combination of applying his own expertise (the active prism glasses) and his late colleague's expertise for the postural adjustments. In many cases people also have orthopedic innersoles as part of their treatment.
Versions of this treatment are applied in European countries who have schools of posturology, for example France, Italy...and I think Greece too. Dr Alves da Silva has trained opthalmologists in those countries in how to prescribe and adjust the active prism glasses. I do know the French school of posturololgy influenced Annette Verpillot (Posturepro) in Canada and her approach includes eye exercises, but not the particular glasses.

Regarding the pillow... I was able to lengthen the time I could sleep in the prescribed position. I just kept a pillow handy and used that and adjusted my position when I became uncomfortable. I wasn't going to sacrifice sleep. I tried maintaining the sleeping position and a hard surface out of curiousity, but I didn't persist with it after a few months when the room where I had my sleeping surface set up became too cold overnight in winter. All the best if you try it! Anne.

 

[MartinK]

hey @anne_likes_red thank you, Im from Czech Republic, near Germany.

I tried sleep in position today! It was really bad, I couldn't sleep and it was too hard, that's why I tried to lie on a hard surface during the day, for the whole 6 hours.

I was surprised at how the lower part of my spine and pelvis began to hurt - a huge unnatural feeling for the body to lie like this, because Im bedridden = normally I'm lying on my back.

I'll see what tomorrow, but maybe I overdid it with the hardness of the mat - I only had a mat. Hope not PEM from it. :-/
I have to be more careful. But - should those 6 hours be enough for me to see the difference? Do you know?
Thank you ;-)

@Donsboig

 

[crepant]

Don't worry so much about the position, my experience suggests that getting rid of your mattress and using only thin foam or a mattress topper on a hard surface is the key thing. I had to sleep on my back with a pillow for the first two months, and I was lucky enough that my sleep improved right away (though I did wear the prism glasses then too). I do use something approximating the position now, though I find it comfortable to lift my left shoulder a little (otherwise I feel too twisted) using my pillow. If I wake at night, I turn to sleep on my back and rest my head on the pillow as most people do. Put simply, if you are uncomfortable, adopt a more relaxed position. My feeling is that you are better advised to make yourself as comfortable as possible in any way that suits you on the hard surface, rather than trying to follow the letter of the law and give up in 48 hours.

I understand that some people have two or three uncomfortable nights and then things improve, others are happy from the off (and I'm sure some people don't like it at all and revert to what they did before). Listen to your body, but stick with the very thin mattress for a few days at least. I hope very much that you don't have a PEM backlash, I'll be crossing my fingers for you!

 

[Donsboig]

@MartinK

I agree with crepant, listen to your body and don't push yourself to do something that is uncomfortable.

I also don't use the position exactly, or 100% of the time. I have found my own slight adjustments to be comfortable. And sometimes I use a pillow and sleep on my side

I hope you avoid PEM this time, and let us know how you get on if you do continue with the firm mattress.

 

[anne_likes_red]

@anne_likes_red I'm sorry you haven't managed to get to Lisbon yet. If you have any questions in the meantime do let me know

Hello again.
Hopefully you're still doing well?
I finally have all my ducks in a row and I'm planning to be assessed in a couple of months time.
(Travelling from NZ so it's a bit of a mission.)
In another message you mentioned being willing to share the type of glasses frames appropriate to have fitted. I don't currently wear glasses so I'd appreciate any tips you have!
Cheers,
Anne.

 

[Donsboig]

Hello again.
Hopefully you're still doing well?
I finally have all my ducks in a row and I'm planning to be assessed in a couple of months time.
(Travelling from NZ so it's a bit of a mission.)
In another message you mentioned being willing to share the type of glasses frames appropriate to have fitted. I don't currently wear glasses so I'd appreciate any tips you have!
Cheers,
Anne.

Hi! Yes I'm still doing ok thanks. In fact, a little better as I have had further small improvements from addressing my POTS, which I wish I had done earlier.

Re glasses, the main thing is that they need to be able to be bent in certain places. I was recommended metal frames for this reason, though I think plastic in the areas which do not need to be bent would be ok.

• Frames must be able to bend in the following ways:
  • arms stay the same and lenses tilt forward towards nose
  • arms bend behind the ears
  • the nose bridge between the two lenses must be able to bend so lenses “wrap around” face a bit more.
• frames that require larger lenses should be fine.
• Nose pads must be attached with standard screw type, or standard clip type. This is to accommodate the special nose pads the optician adds.

I hope this helps, lete know if anything is unclear and I will try to explain better

 

[anne_likes_red]

Hi! Yes I'm still doing ok thanks. In fact, a little better as I have had further small improvements from addressing my POTS, which I wish I had done earlier.

Re glasses, the main thing is that they need to be able to be bent in certain places. I was recommended metal frames for this reason, though I think plastic in the areas which do not need to be bent would be ok.

• Frames must be able to bend in the following ways:
  • arms stay the same and lenses tilt forward towards nose
  • arms bend behind the ears
  • the nose bridge between the two lenses must be able to bend so lenses “wrap around” face a bit more.
• frames that require larger lenses should be fine.
• Nose pads must be attached with standard screw type, or standard clip type. This is to accommodate the special nose pads the optician adds.

I hope this helps, lete know if anything is unclear and I will try to explain better

Thank you, that is helpful!
It sounds like the glasses need to be fixed to stay in a more precise position than is regularly required. They seem keen I have two pairs fitted, so if one comes out of alignment I have the spare ones handy.
There's an optometrist in Sydney trained in how to prescribe active prisms for PDS so for adjustments at least I might have less of a commute to get that done.
It's good to hear you've found something helpful for your POTS. Long may further improvements continue!!
Anne.