Proprioception Dexterity Balance

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DokaGirl

Senior Member (Voting Rights)
Proprioception is the sense of our body's position in the environment. I bang into things like door ways. I hit the shelf when putting away dishes, instead of setting dishes on top of the shelf. I try to step over obstacles, and trip over them instead.

It is very challenging to wend my way through lots of tables and chairs without bumping into them.

I have balance problems. Often, if I lean over too far I have to catch myself, or I will fall.

I did 3 Romberg tests with eyes closed and fell over all three times. I was advised this indicates neurological problems - no kidding!

All of these things are worse when my OI is worse. I reach for something several times before I grasp it. I have broken dishes because my hand just lets go. I become clumsy when more tired, and when my OI kicks in which happens frequently every day. I fumble away trying to do small tasks that take me extra time to do, due to problems with dexterity. And the list goes on.

All of this is invisible when I see health care practitioners for 10 minutes.
 
DokaGirl said:
Proprioception is the sense of our body's position in the environment. I bang into things like door ways. I hit the shelf when putting away dishes, instead of setting dishes on top of the shelf. I try to step over obstacles, and trip over them instead.

It is very challenging to wend my way through lots of tables and chairs without bumping into them.
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I know what this is like, was like this for many years, its eased off a bit in recent years but i am also better at working with it.
One interesting side effect which may or may not be related, i am amazing at timing things, i can take pictures of times when people are playing toss with the ball in the air (which most can't do) and i can hit almost every baseball at a batting cage (back when i could go to a batting cage years ago).

DokaGirl said:
I have balance problems. Often, if I lean over too far I have to catch myself, or I will fall.

I did 3 Romberg tests with eyes closed and fell over all three times. I was advised this indicates neurological problems - no kidding!
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I have never had such a test but i can understand why neurological dysfunction would be the cause

DokaGirl said:
All of these things are worse when my OI is worse. I reach for something several times before I grasp it. I have broken dishes because my hand just lets go. I become clumsy when more tired, and when my OI kicks in which happens frequently every day. I fumble away trying to do small tasks that take me extra time to do, due to problems with dexterity. And the list goes on.

All of this is invisible when I see health care practitioners for 10 minutes.
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My symptoms are diferent but in the same family as these. Sometimes i do things while trying to do the opposite or forget it do simple tings, forget to wear over mitts, use the wrong force or apply it in the opposite direction of what i intended

Oddly enough for the last few hours before i saw this thread i had a scene from CSI stuck in my head where Grissom is testing his podietal dexterity while Catharine just looks at him funny.
 
Thanks for your comments, Alvin. Interesting, as you say you have some other symptoms, but they are in the same family. A good way to put it.

I know what you mean about meaning to do one thing, and doing the opposite.

About the Romberg test eyes closed and safety - there were 2 people watching me when I did this test, by walking down a narrow hallway. I think the practitioners were surprised I kept falling. I would strongly recommend more than 2 spotters watching in case you fall. And, hopefully they catch you!

I had done the Romberg eyes open, and I'm wobbly with that test, but eyes closed I consistently fell against the wall everytime.
 
DokaGirl said:
Thanks for your comments, Alvin. Interesting, as you say you have some other symptoms, but they are in the same family. A good way to put it.
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Thanks :)

DokaGirl said:
I know what you mean about meaning to do one thing, and doing the opposite.
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Yeah, i've had to try and idiot proof my life, much harder to do these days with severe cognitive dysfunctions.

DokaGirl said:
About the Romberg test eyes closed and safety - there were 2 people watching me when I did this test, by walking down a narrow hallway. I think the practitioners were surprised I kept falling. I would strongly recommend more than 2 spotters watching in case you fall. And, hopefully they catch you!
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I have had ME long enough to compensate, so i may feel i am floating but i could keep from falling most of the time

DokaGirl said:
I had done the Romberg eyes open, and I'm wobbly with that test, but eyes closed I consistently fell against the wall everytime.
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I'd be bouncing off walls if i tried eyes closed. I have troubles in public restrooms because they are so small, i have no claustrophobia whatsoever (have had several MRIs without sedation) but i can't operate without banging into things unless i use the disabled stall because i need space to work with because of my balance and energy and concentration and whatever else is causing this.

Over my time on the other and this forum when i have posted symptoms i have been surprised how common they have been, usually more then a few members can identify with them and have their own stories. In the end i try to manage as best i can and try to do work towards getting my life settled while i still can and towards advocacy which hopefully leads to research and treatments.
 
I did actually fall during my Romberg test, but I was all over the place apparently.

Apart from that you could be describing me.

For ages I couldn't figure out why I kept breaking the edges of my finger nails- it was because I kept bashing them into the front edges of shelves and tables when reaching for things.

As I start to deteriorate I start to take clumsy to a whole new level!
 
Thank you all, for your comments. I have often wondered if doctors ever puzzle about how all their ME patients have such similar symptoms, if we're just supposed to be hysterical.
I understand part of the definition of hysteria is disorganized symptoms. But our symptoms can be categorized, and recognized as belonging in the same family, as Alvin said. It would be interesting to know if any of them ever see this as a problem with the psychosomatic theory.
 
When I was first diagnosed, I saw non-ME experts who had seen other pwME, but they just seemed to think we were all just depressed, or suffering from burn out. They couldn't see ME. They missed the differences between ME and depression. They seemed to think this "depression", or "burn out" would be short lived, and that I and everyone else with this thing called cfs were making too much of the symptoms - paying too much attention to them.
 
About the Romberg test, eyes closed, please make sure to have lots of people spotting you in case you fall. I did this test at an alternative practitioner's office. There were only 2 people watching me - neither of whom caught me, or helped me when I fell. I did this test in a narrow hallway, so I guess the practitioner knew in case people fell they would hit a wall first, and hopefully the wall would stop them from toppling right over.
 
DokaGirl said:
I have often wondered if doctors ever puzzle about how all their ME patients have such similar symptoms, if we're just supposed to be hysterical.
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Once there is a container they look for symptoms in it and ignore everything else and even its origins and implications. Thats why medical lies put into practice is so hard to combat, confirmation bias takes over and they believe and never question the lies. That plus they don't want to admit they were ever wrong after harm is done. Not just in our disease but from harmful obsolete treatments making a comeback to fat causing heart disease once something is entrenched changing it is like steering the Titanic with a wooden mixing spoon.

BTW i just did what i was trying not to, opening my 2400+ alerts when i was waiting till i had cognitive functioning to actually get to them. ARGH!
 
@DokaGirl these are all neurological signs that points towards cerebellum issues. I womder why these doctors you have seen do not clue in to scan your brain to determine what the issues are.

It makes me so mad when I hear stories like that and physicians don’t seem to either believe you or don’t want to do anything about it. That is discrimination right there!

One suggestion to you if you are unable to get follow through with physicians would be to get an eye exam. Request the eye doctor to test your eye movements. Certain eye movements are related to the cerebellum. The ophtalmologist can then send you to a neuro-ophtalmologist, who certainly can send you for a MRI or CT scan or whatever he feels important to do.

Edit to add: the ophtalmologist route would be an indirect route. In the best of situation, your GP would send you to a neurologist for a complete neuro exam as this is what you need.


Best wishes.
 
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Like @Invisible Woman I get more of this kind of symptoms the worse I get and certainly if I’ve overdone things for a while.

I tend to miss my mouth when I try drinking from a glass, and instead pour the content over my lap. I miss by several inches. There are periods where I’ve had to give up drinking from open glasses and cups entirely. The upside is Mr Pants finds it hilarious.

I also miss door openings by a foot or two. That’s not as funny.

Edited to fix autocorrect mistakes.
 
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andypants said:
Like @Invisible Woman I get more is this kind of symptoms the worse I get and certainly if I’ve overdone things for a while.

I tend to miss my mouth when I try drinking from a glass, and instead poor the content over my lap. I miss by several inches. There are periods where I’ve had to give up drinking from open glasses and cups entirely. The upside is Mr Pants finds it hilarious.

I also miss door openingsby a foot or two. That’s not as funny.
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So sorry @andypants :(
 
As with most things because my ME is Mild-moderate i only get any balance issues when my energy is in the red. I get a sway when I walk and I struggle on stairs also not happy standing at a shop counter for any length of time.. I feel like I’m going to fall backwards down the stairs and bend forwards to compensate. I didn’t really notice this was a balance issue I thought it was my muscles in hips not being able to hold my body up but maybe it’s both. Luckily I’ve only had one fall but it was quite nasty and I had ankle on one side and foot on the other both badly sprained at the same time swollen up. That wasn’t fun. I just put it down to being on too high a dose of pregabalin which zombified me. That fall was what tipped me towards more moderate symptoms. I wish I had a Dr I could raise this with but I don’t feel very comfortable bringing ME symptoms to them as they are so uninformed.
 
Thank you very much to everyone for your comments.

Thank you for your suggestions, Milo. But, as for neurological imaging that will never happen via the usual route, I'm afraid. Maybe if I go to another country, and pay for it myself. Can't afford to do that though.

I used to see an opthamologist who chuckled at all the symptoms I told him about: blurry vision, sore eyes, slow to focus, trouble scanning quickly etc. He just quietly laughed. "Charming"! I see someone else now - he has never heard of ME, of course.


Thank you very much Milo, for your kind suggestions, and best wishes!

Alvin, thank you for your container description, and ignoring all symptoms that don't fit into it. I just can't see not being curious. But maybe if my money, career, and reputation depended on me staying in lock step, I might not be curious either. Well, I think I would still be curious.

I also liked your description of steering the Titanic with a mixing spoon. I describe changing government policy on ME like turning the cruise ship around.

I saw a brand new specialist once - not an ME one. I tried to hand her a copy of the IOM report brief (4 pages), and she wouldn't even touch it. As if she thought she would become contaminated with some kind of bunkum a lowly patient was peddling.

More proprioception problems - I spill drinks on myself too. I carefully put breakable things a few feet away from me, if I am working at a counter - whenever my OI doesn't kick in that is. I don't always have complete control of my limbs, and I may brush against something and down it goes onto the floor. I used to drag a foot a bit when extra tired, and still trip, and the ground seems to come up too soon to meet my feet.

Yonks ago I wondered if I had MS. Our local ME support group leader said she was misdiagnosed with ME, but later found out she had MS. At the time, almost 30 years ago, I was afraid I might have MS. Now after all this time, being brutally stigmatized, and dismissed, I know ME is often worse than MS in many ways: QOL, huge stigma, lack of treatments etc. So, it may not have been as bad to have MS!

Thanks again for all your comments.
 
DokaGirl said:
Thank you for your suggestions, Milo. But, as for neurological imaging that will never happen via the usual route, I'm afraid. Maybe if I go to another country, and pay for it myself. Can't afford to do that though.
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What country are you in?

DokaGirl said:
Alvin, thank you for your container description, and ignoring all symptoms that don't fit into it. I just can't see not being curious. But maybe if my money, career, and reputation depended on me staying in lock step, I might not be curious either. Well, I think I would still be curious.
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DokaGirl said:
I saw a brand new specialist once - not an ME one. I tried to hand her a copy of the IOM report brief (4 pages), and she wouldn't even touch it. As if she thought she would become contaminated with some kind of bunkum a lowly patient was peddling.
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I've been dealing with the medical system almost all my life, doctors are not interested in learning anything beyond medical school. I seriously wonder how many avoid continuing medical education (unless mandated)

Having been to more doctors then i can count when i explained my symptoms they would diagnose me with utterly ridiculous things usually in their specialty even when the interpretation of my symptoms was stretched beyond belief. They would not listen when i pointed this out with explanations or examples. I had to push like crazy to get diagnosed with the right thing.

DokaGirl said:
I also liked your description of steering the Titanic with a mixing spoon. I describe changing government policy on ME like turning the cruise ship around.
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I love good analogies :)
 
Just to chip in, I experience, as far as I remember (I read most of the thread earlier), all of the symptoms mentioned, and have probably described them elsewhere on here and the other place. I like the container thing.

Cups, I mainly use metal cups now, due to it being inconvenient to be picking up smashed crockery all the time. They are also better for cold drinks, not leaving pools of liquid around from condensation.

A couple of them have significant dents, sometimes they don't just drop, sometimes there is a muscle spasm which can mean they hit the floor rapidly enough to dent a steel cup, the effect on a crockery cup is impressive, but a pain to tidy up before its; forgotten about and walked on.

You're not alone :hug:
 
A positive romberg test was considered to be almost diagnostic for ME. I began to fall when I was crossing roads or big rooms and I realised that I unconsciously kept a hand touching things. Nowadays, I even stumble when I blink when I am bad but I do not know if it would show up in a doctor's office because I press down with my feet to the ground to stop the falling unless I am not paying attention. Now all my furniture is arranged so I always have something to touch when I move. This layout means that when I have attacks of blindness I can still get around so it is dual purpose, love that :). Typically with ME we are so bad we have to work out ways to deal with our symptoms but we do it so well no one believes they are there at all.

I also can't do the touch your nose with your eye shut test but they still insist there are no neurological signs in ME. It is crazy.

MEResearch UK has links to papers on the vision problems in ME. There has been a lot of work done recently proving that we have difficulty seeing motion and distinguishing details.
 
Mithriel said:
A positive romberg test was considered to be almost diagnostic for ME
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I just looked it up and tried it on myself, i get shaky, I don't fall over but i have to use a lot of energy to not wobble too much (i can't not wobble at all). Its noticeably cognitively taxing to get through 30 seconds.

Edit:
The conditions associated with positive Romberg's according to Wikipedia are:
Some sounds rather familiar though different enough that they can be distinguished form ME in most cases (but i wonder if some of us might have one of these)
 
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