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

Messages
83
Location
UK
@anne_likes_red

Two pairs is probably a good idea since you're going all that way! Best of luck and please let us know how you get on.

Have you started lying on a very thin mattress topper on wooden boards yet, as described upthread? Or will you wait until after the trip?
 

anne_likes_red

Senior Member
Messages
1,103
@anne_likes_red

Two pairs is probably a good idea since you're going all that way! Best of luck and please let us know how you get on.

Have you started lying on a very thin mattress topper on wooden boards yet, as described upthread? Or will you wait until after the trip?

Yes I started experimenting with a hard surface a couple of years ago after
I found some of Dr Martins da Cunha's recommendations on a French posturology website. More recently my husband modified my side of the bed, so I don't have a soft option any longer. :) I find with the sleeping posture - the more front lying one - I get more restful sleep. If I test for cranial nerve relaxation in that position I find I can fit more fingers in my mouth!
I had eye surgery at 13 so we're just hoping the pallisades (where the proprioceptive fibres are) are intact, although my rough and ready assessment of myself suggests the need for the stronger prism on the other side.
Thanks for your support and encouragement! I will definitely update in due course.
Anne.
 
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anne_likes_red

Senior Member
Messages
1,103
Updating.

I had to postpone my originally planned April trip until October and I'm just back. *Phew*!

I needed prisms on both sides as it turned out and they immediately restored full range of motion in my neck* and also my right hip. My head feels half the weight it did before and I am noticing it seems much less effort to hold myself upright...sitting or standing.
An unexpected effect is that I'm not reacting to perfume, car exhaust and cigarette smoke the same way I was! My nasal passages and throat used to 'close up' in response to those things. I'd assumed it was a liver detox pathway issue but I'm now thinking it could be olfactory hypersensitivity or limbic system related.

I'm also feeling more comfortable/secure - "separate from all the noise" is the best I can describe it - in busy spaces.

My breathing has improved. Specifically - I feel calm on the exhalation, where as before I experienced panic when trying to hold or extend the outbreath. I've had this symptom as long as I can remember.

I have some postural retraining exercises to do to complete the treatment. I didn't wear glasses before and I'm not loving the feel of the metal frames but the benefits are outweighing any inconvenience.

My understanding is that cognitive improvements can take a few weeks. If I notice changes there I'll update again. Brain fog and attention deficit - busy brain, unable to stay present are my main issues in that department.

*Re restriction in my neck. Apart from low iron levels, this was the only physical issue my GP picked up when I saw her after a relapse in 1990. She referred me for weekly physiotherapy. The therapist said neck issues seemed common in ME patients - she had gleaned this while attending an international conference in the UK earlier that year. I felt better after the sessions but the issue returned to baseline every week. Later I had weekly osteopathic treatments for the same issue...with the same outcome. In general, with relapses or worsening of ME symptoms I would not be able to lift my arms and I experienced more congestion, head pressure and stiffness in my neck and shoulders. I always found Raymond Perrin's home exercises helpful for those symptoms. I'm seeing an osteopath (European School of Osteopathy trained) as part of my postural treatment. I'm interested to see what changes she notices with the glasses.
 
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4
Hi all, posting on behalf of my brother who is severely ill with ME/CFS. A lot of his symptoms align with possible PDS and we're especially interested in trying to follow the protocol because it is noninvasive.

@Donsboig, thanks very much for your detailed descriptions, this is awesome. I'm glad to hear that this has helped you somewhat.

I'd love to know...would you be able to share a more detailed protocol for the posture and breathing exercises? My brother is bedbound and has difficulty seeing a doctor. We would love to try implementing this on our own. Thanks so much!
 
Messages
83
Location
UK
@s3n6a So sorry to hear about your brother.

Here are my notes about the posture. I think some of it is fairly standard stuff. I didn't do all of it, I'll add my 'personal experience' notes in italics.

Posture training

1. Breathing exercise - laying down or standing up. 2x per day, min 5 mins each.​
  • Laying: on back with feet on chair/sofa. Legs and body make a “Z” shape. Fingers interlaced (not in the obvious way, total thickness should be 1 finger) and placed behind head near top, aiming to tilt chin forward and lengthen spine. Breathe in through nose, expanding lower stomach forward, out through teeth - top and bottom teeth touching tip to tip. Make a "shhh" noise.
  • Standing: Feet a few inches from wall, slightly bent/relaxed knees, lean back against wall. Head remains off wall in neutral position. Clasp hands at belly button. Breathing is the same, push hands slightly into stomach on exhale.
I had terrible POTS so I only ever did the 'laying' version. Did it religiously for 2-3 years, not sure if it helped at all.

2. Laying position - mattress 5cm of low density foam, eg IKEA Tuddal topper, on top of stiff wooden board. See photo for laying position. Ideally don’t have upper shoulder propped up with anything. Should be totally relaxed and floppy.​

This is the one I like the most. I still sleep like this every night, though I do spend ~20% of each night sleeping on my side with pillows. This is also my main resting position during the daytime. I allow myself to alter the position a bit to make it more comfortable for me (I usually tuck my hand or duvet under the higher shoulder. and am probably more 'on my front' than the position strictly calls for).

3. Sitting position - Feet on block ~8cm high for chair height of ~44cm. Aim is to have knees higher than hips.​

Due to the bad POTS I didn't implement this and prefer to sit with legs crossed or up on another chair. I still do this, it's kind of necessary with POTS.

4. Standing position - feet shoulder width, right foot slightly further back than left (two fingers). Hands clasped around belt height, relaxed. Knees slightly bent/not locked. Aim to have pressure on both front and back of feet, think of two connection points (heel and ball of foot) with equal pressure on them. Shoes shouldn’t have significant up-curl at toes (ideally). Want good contact with big toe to ground.​

Again, POTS, so standing is strictly limited! Never really bothered with this.

5. Sloped desk - 30 degrees for reading, writing, laptop. 23 degrees for computer keyboard, 13 degrees for computer mouse.​

Once again, POTS! I work on laptop lying down in bed with it propped up on my stomach.


A few more notes and updates for the thread generally:
  • I stopped wearing the prism glasses about a year ago and didn't notice any worsening.
  • I stopped the Z-breathing exercise about 2 years ago and didn't notice any worsening. I enjoyed the routine of it though and felt it was a good thing to do for mindfulness/relaxation.
  • I stopped using the IR insoles 4 years ago and didn't notice a difference.
  • I have learned through trial and error that my body really doesn't like being supine (lying on my back). I always knew I found it uncomfortable, but when I did a 2.5hr MRI it gave me excruciating headaches which resolved quickly on standing. Similarly, I tried sleeping exclusively on my side for a while and felt noticeably worse in the daytimes. All this to say that I think I probably benefitted the most from implementing the front position for both daytime resting and sleeping. I was already a front sleeper, but not doing so in the daytime. I like the firm mattress too.
  • I was diagnosed with POTS in 2022 and have been adding relevant meds. They have collectively given me a huge step up in symptoms. I didn't have the most obvious POTS symptoms so it took a while to figure it out, but it's easy to do an indicative test at home (Google: NASA lean test), so I highly recommend considering that.

I hope that helps. I guess the summary is that I only still do the laying position, and didn't notice getting worse as I stopped elements of the protocol. I did feel like I made an improvement that coincided with starting this protocol, but perhaps it was just spending more time on my front. Or something else unrelated!

Best wishes for you brother, I'm happy to answer any more questions.

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4
Thanks so much @Donsboig. My brother has mostly been laying supine on a hospital bed (that has ability to mechanically raise and lower). He has been wanting to transfer to the firmer surface and sleeping but has had difficulty with the transition. Do you have any tips for this, or was it helpful for you right off the bat?
 
Messages
83
Location
UK
@s3n6a I can't think of any tips I'm afraid other than to allow him to use whatever position he needs to get comfortable and work towards the 'proper' position gradually if necessary. I still sleep on my side with pillows most nights for 1-2 hours
 

Wayne

Senior Member
Messages
4,459
Location
Ashland, Oregon
I had eye surgery at 13 so we're just hoping the pallisades (where the proprioceptive fibres are) are intact,
Hi @anne_likes_red -- I took the liberty of asking an AI website to decipher what you were referring to with your above comments. I figured if it answered correctly, then you wouldn't have to take the time to explain some intricate eye parts to a novice. But if you have anything further to add, I'd be interested. BTW, I hope it was OK for me to ask an AI website what you were writing about. :angel:
.............................................

Could you decipher the following? "I had eye surgery at 13 so we're just hoping the pallisades (where the proprioceptive fibres are) are intact.​


Answer
Certainly! I'd be happy to decipher and explain this statement for you. Let's break it down into its key components:
  1. "I had eye surgery at 13"
    This part is straightforward. The person had some form of eye surgery when they were 13 years old.
  2. "we're just hoping the pallisades (where the proprioceptive fibres are) are intact"
    This is the more complex part that needs deciphering:
  3. "pallisades" is likely a misspelling of "palisades." In the context of eye anatomy, this is referring to the "palisades of Vogt."
  4. The palisades of Vogt are structures found in the limbus of the eye, which is the border between the cornea and the sclera (white part of the eye).
  5. These palisades contain stem cells that are crucial for maintaining and regenerating the corneal epithelium (the outermost layer of the cornea).
  6. The statement mentions "proprioceptive fibres." Proprioception is the sense of the position and movement of body parts. In the eye, there are indeed nerve fibers that provide information about eye position and movement.e) "intact" means undamaged or whole.
In essence, the person is expressing hope that the eye surgery they had at age 13 did not damage the palisades of Vogt, which are important for corneal health and contain nerve fibers that help with eye positioning and movement.The concern about the integrity of these structures suggests that the surgery may have been in or near this area of the eye, and there's hope that these important anatomical features were not negatively impacted by the procedure.
 
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4
@s3n6a I can't think of any tips I'm afraid other than to allow him to use whatever position he needs to get comfortable and work towards the 'proper' position gradually if necessary. I still sleep on my side with pillows most nights for 1-2 hours
Ok thanks! I appreciate your response. One other thing...I actually reached out to Dr. Alves da Silva over email and am curious about your experience with him? He is very persistent -- almost pushy -- in his correspondence even when I have told him the patient needs some time due to PEM before we can get any specific answers or tests.
 
Messages
83
Location
UK
Yes he is a little pushy/direct. But he is also nice and as I remember was willing to accommodate my needs when I laid out what I wanted
 
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