Problems With Proprioception (Sense Of Where Your Body Is In Space)

[Batik]

I'm going through a bad patch right now, and I'm noticing problems with proprioception in particular. They're most annoying when I'm exhausted enough that I'm not really up to analysing the problem, let alone figuring out a solution and explaining it to someone else. I seem to do best without people in my immediate personal space, I find it very confusing if they are there and it makes me more likely to stumble. For instance, I live on the first floor and rarely get out of my flat. When I do get out, I always have someone with me these days, and they naturally try to help me down the stairs. I always ask them to give me a wide berth, as it is far more confusing to have someone by me, and to have to adjust to them, than it is to hang onto the bannister on one side and my walking stick on the other. I prefer to have them about half a staircase away, in fact, so that they're not bothering me. Something to do with vision, perhaps?

Right now I'm finding it awkward when people are getting me out of the shower - my support workers are still poor at this task - and helping me to dress. I'm not very experienced in being helped to dress, and I keep on being bothered by people moving around near me and wobbling all over the place as a result. I honestly don't know how this works. I suspect vision's a component, and I am guessing that I may do better with people directly ahead of me instead of to the side, something to do with peripheral vision.

I've had many occasions of all sorts where I've stumbled due to someone touching me or just coming very close, too. I'm generally clumsy, often drop things (gauging weight is hard), walk into things, am hugely worse in unfamiliar surroundings, and when my former partner was around, would accidentally elbow him quite often.

Does anyone have a clue how this works, and how to work around it?

[roxie]

I don't know if this falls umber proprioception but if sometimes when I try to walk I feel like I'm being pulled, usually forward but sometimes backwards.

[Batik]

Oh yes, walking can be even worse. All those people moving around near you, and the light, and the noise. I've conked out from merely being pushed around a hospital in a wheelchair, come to that, and feeling physically disoriented from the people around me was a big thing.

[Angela]

I don't so much have a problem with people as cars, they make me completely disoriented in traffic. I can't tell if they are moving or I am, even when I am at a standstill the motion of other cars around me makes me feel depersonalized or whatever the medical term for that is. I have always had a tendancy to "walk into people though" and occassionally I develop gait problems where one leg doesn't seem to keep up to another, on certain days only. I sometimes I have the sensation the floor is falling out from underneath me when both standing and sitting (although more frequently standing) I have no solutions or answers, am told that is normal with pots.

[brethor9]

yes I have these issues too especially the sensation you describe bananas...the push pull sensation.....i also get the feeling like my feet are being sucked through the floor......it drives me crazy...and makes me feel crazy glad to know I am not the only one.....

[Batik]

Angela - thankfully I never learned to drive, but I find that crossing the road is a nightmare, and I have immense difficulty seeing the cars. Do you reckon it's part of the same phenomenon? They're both unpleasant and disorienting, but one is about things right up close to me, and the other is about things further away from me.

[puppylove]

I feel like I'm floating sometimes- like I don't have feet.

[Angela]

Hi Batik, come to think about it, it's the cars closest to me on either side that make me feel icky so sounds like the same problem to me. I just don't seem to have that issue with people. Funny, but on the otherhand I am not usually in crowded environments and don't have to walk busy intersections. Havn't been to a concert in years, so who knows.

[Kellysavedbygrace]

I never thought of it as proprioception- but you may be right.

In stores I'm afraid I'll run into other people and/or their shopping carts.

In a crowded room I'm afraid I'll run into people and prefer someone to hold my hand or guide me. (usually a family member or friend)

At home in my kitchen, when anyone else is in that space. I'm afraid I'll run into them.

In the car, whether someone else is driving or I'm driving (I've recently started driving - very limited) I'm afraid we'll run into other cars - especially on narrow roads, tight car spaces or on multi- lane roads, I'm worried about the cars on the side of our car (not oncoming traffic).

Ive never run into either cars or people but nonetheless since Dysautonomia onset this concern is crippling.

Interestingly, my son had severe sensory integration disorder as a toddler. And now I have it.

[Batik]

Sensory integration disorder? Interesting. This is starting to look like one of those areas which overlaps with autism spectrum disorders. I'm wondering with the ASD folks might have useful resources about this kind of problem.

[roxie]

Batik, do you mean autism spectrum disorder? I've tried to describe my mom how this like swirl around when a lot is going on and it's hard to process and she said it's almost like autism. But I'm not autistic.

I normally don't feel like I'll run into things but I have this problem of thinking everyone's too close to me. It's normal at my house to hear me "you're too close" and it's like a joke to ppl but maybe it's why I feel crowded?

[Batik]

Yes, I meant autism spectrum disorders. Some of the neurological symptoms which you can get with ME, and I'm gathering with POTS too, are the same as symptoms experienced by people with autism or Aspergers. This includes problems with light and sound, and it seems that this issue falls into that category as well. There are various learning disabilities which also overlap here, such as Auditory Processing Disorder (which I've had since birth) and dyspraxia.

[Kellysavedbygrace]

Yes, when my son was little we were quite concerned that he was autistic. Turns out he just had very severe sensory integration disorder which is part of spectrum. At that time (ages 1-3 yrs) I couldn't touch him w wet hands because he would experience pain and cry. He was bothered by lights, touch, sounds, etc. His case was quite severe. The local news station even came out and did a story on his condition.

After diet change and occupational therapy he improved and now only has a mild remnant of sensory issues. He is now 9 and still can't tolerate a really loud crowded place but other than that, you'd never suspect he had anything wrong.

I've wondered if others have kids w sensory integration issues. Maybe I'll start a new post about that.

[POTLUCK]

Batik- When I am doing badly this is what I experience. I also get cognitive difficulties, can't think of a word, or thing I want to describe. Can't figure out how to say what I want. Can't recall what I'm in the middleof writing etc. Some of the other things mentioned sound like the ictal phenomenon that goes with Temporal Lobe epilepsy. In those cases ( like floating sensation, and feet being sucked through the floor ) does it last 30 seconds to 2 minutes with a maximum of 30 minutes. That is suggestive of Temporal Lobe Epilepsy ( Simple Partial Seizures )

[Batik]

I tend to get this when I'm quite bad, so it'll go with increased cognitive difficulties. It also means I don't form memories well because my brain's only partly there, so it's harder for me to remember exactly what it was like and how long symptoms went on for. I've noticed that I tend to close my eyes when it's happening in order to reduce the sensory input. I don't keep trying to do an activity for very long when this hits, it's a sign that I need to get into bed fast, so I don't know how long it goes on for. It was other folks getting the floating sensation and feet being sucked through the floor, not me. What do other people experience in this respect?

Autism folks are more keen on sending me for diagnosis (which is pointless, no one's interested in this aspect of ME and I'm sure I don't actually have an autism spectrum disorder) than helpful tips, plus everything seems to be geared towards young children, but they're sending me what they do have. I'm going to try the dyspraxia people next, that's another overlapping area, though again it probably focuses mainly on children.

[NMPotsie]

This is a great topic! I bump into walls all day long and swing my arms in a way that I crash my hands into things constantly; they're always bruised from hitting doorknobs and other objects. When people are too close I can't breathe and something weird happens wih my vision; I get tunnel vision and can't really "see" their faces, like I can't focus or something. I have no problem with driving other than when I'm stopped I feel like I'm still moving (have to mash the brakes to make sure I'm not). Anytime I sit at a computer for long periods of time my head feels like it's being pulled backward. This was one of the first symptoms I reported, and not surprisingly I was referred to a psychiatrist immediately.

I was reviewing my initial medical records from pots the other day and I mentioned this and "jello head" (ie brain fog), along with the sensation that my head is a balloon floating off into space. Sheesh, no wonder they thought I was nuts. LOL

[Kellysavedbygrace]

Here is a list of sensory calming things that I now use myself that I learned from my son's OT when he was being treated for the sensory integration issues. Wondering if any of you also use these aids:

- heavy weighted blankets

- ear plugs

- sunglasses / hat

- chewing gum

- rocking/ swinging /swimming

- brushing skin (with dry brush)

- read, watch tv/ or play video game in small space

- wear jacket/ sweater/ Use blankets to avoid draft on skin

- running hands through/ over different textured surfaces. (ie: rough surface feels good on my hands)

[Batik]

Interesting ideas, but how would they stop me from falling over when, say, someone helps put my socks on? Could you explain more about how this works?

[Kellysavedbygrace]

The list above is aids to help calm the nervous system down. Might not help prevent something specific like falling when socks are put on but may make overall coping w proprioception issues overall improve. I use the aids almost daily to help calm my system down. Think however I have a pretty severe hypersensitive system. For instance, I'm lying in bed now w earplugs in because the sound of my kids playing in the next room is difficult for me to bear. (this is a pretty bad flare)

[Angela]

batik, if u actually have someone to put socks on you then you r certainlly going to be okay

[Batik]

Not really - they're only here a few hours a week, I'm at high risk of falls and so forth the rest of the time, and they're pretty bad at their job anyway.

[Angela]

I'm sorry. I know not everyone's issues are the same. Often I wish I had a live in caretaker:)

[Batik]

The thing about someone needing help with getting their socks on is that it indicates a high level of disability, but doesn't necessarily indicate that those needs are being met, and for almost all cases, the needs aren't anywhere close to being met. I probably do need a live-in carer, yes, but I'm going to be lucky if I get enough help from social services to get more than one meal a day, now that my partner's left me. Don't worry, I know you meant well!

Kelly - ah, yes, that makes sense. I've often found that reducing sensory input from one source makes the overall sensory overload problem easier to deal with. I'm not quite sure how I could apply that to dressing, mind you - lower light levels?

Incidentally, my hearing therapist told me that ear plugs are the last thing we should be using, as they make the hyperacusis (hypersensitivity to sound) worse by training the brain to get used to silence and freak out at sound. You're meant to use white noise instead. She gave me little in-ear white noise generators, which I've lost by now (although I used them for a course of treatment and they helped hugely), but these days it would be easy enough to set up using an MP3 player and headphones/earbuds.

[POTLUCK]

NMPotsie- One of the times when I was quite bad and went to the ER for my POTS ( before I even heard of POTS but after symptoms started daily in fall 2009 ) I was trying to describe how I felt to the nurse and said it is like my head is spinning back and forth and I blank on things, can't think of words, it is like having a hangover.

The nurse wrote in my permanent record " Patient reports he feels like he has a hangover."

[Batik]

At which point they decided that you simply had a hangover? Eep. This is why I have trained myself to say "groggy" instead of "stoned" to describe how I feel on medications which over-sedate me.

On my GP and eye specialist's recommendation, I went for a visual field check yesterday. Nothing showed up. I suspect something would have showed up if it were my eye specialist doing the testing, she does very long, thorough tests which look at how my eyes fatigue, but she's taken early retirement.