Do you fall down?

[leela]

Does anyone else fall down more than an adult human ought to? It's not from vertigo (though I am always just slightly dizzy), but it seems to be a combo of some kind of total spaz moment, crappy peripheral vision and poor proprioception. I don't fall down all the time or anything, but I've fallen at least a half dozen times in the last six months, probably more.

It also seems like the shock and trauma of it to the already fritzy CNS makes my symptoms flare immediately.

I'm wondering if anyone else has noticed this, or if it's just my own special treat.

I fell over just now and feel so extra icky because of it, I thought I'd post and see if there are any fellow fallers-down, theorists about it, or remedies therefor. I hate that I have a doc appointment I have to drive myself to now, feeling all shaky and symptomatic having just keeled over...<sigh>

 

[Min]

poor you, hope you feel better soon - arnica gel is good for bruises

I fall over all the time - I used to just suddenly fall over sideways (have fallen out of the back door a few times) but now I have foot drop that trips me up too

sorry don't have any theories about it

 

[JAS]

Sorry to hear that Leela, not a nice symptom, and yours too Min. I had an acute vertigo attack along with a viral infection at onset....but not really since. I knows yours wasn't vertigo, lots of sufferers do have balance problems and probably due to that? I just have the usual ME/CFS symptom of when you stand up you have problems with dizziness, sometimes takes a little while to get your bearings and gets a bit frustrating but not tripping over kind of thing. Take care.

 

[wciarci]

Hi Leela,

When I was first ill, I did fall down alot but not anymore. I don't know the reason for this. I would just loose my footing or balance. I also had the drop the glass or dish thing, but not anymore. I don't know if I am just more cautious or if this thing passed. Just another strange symptom.

wendy

 

[leaves]

I have had this too, it is like getting an extreme drop in blood pressure and than I just fall down.
For me watching my diet (no gluten and allergens) helps.
Can be scary eh. Sorry you have to go through this.

 

[serenity]

i don't quite yet but i know that it is coming, my balance is gettin worse all the time.

 

[shiso]

I had a bad spill on concrete a few months ago (I didn't see that I had to step up to the raised sidewalk), and my knees and shins got all bloody and cut up the way they used to when I was a kid (I remember thinking, as I cleaned the wounds and applied the bandages, that this hasn't happened to me since I was under 10). I've ALMOST fallen a few times since them, but since that other spill was pretty traumatic, I try to be extra alert when I'm outside. So the falling thing hasn't been consistent, but I've definitely felt clumsier than when I was before ME/CFS. No explanation either, sorry.

Slightly OT, but my posture is terrible now. I guess I'm mentioning it because I used to have great posture and good physical coordination without trying, and both have declined since my illness.

 

[JT1024]

I've had many falls over the last many years. I've twisted my ankles and broken bones in my feet several times due to falls. I was diagnosed with FM first and one of the first things to go was my balance. My CFS diagnosis was later but my FM symptoms persist.

Recently, I came across an article that was sad but true. The link is here: http://chronicfatigue.about.com/b/2010/05/24/fibromyalgia-falls-are-you-prone.htm

Researchers presented data at The American Pain Society's 29th Annual Scientific Meeting. An interesting aspect of this study is that they looked at 3 measures of balance: visual, spatial and somatosensory (input from the skin and other organs.) The fibro folks did worse than their healthy counterparts in all 3. In fact, researchers tell WebMD that the average 50 year old with fibromyalgia did worse than what you'd expect in someone who was 70 or 80.

I emailed the above excerpt to a few very close friends and family members because it was PROOF that I wasn't nuts. I had been extremely athletic prior to FM with exceptional balance. FM and CFS has "progressed" despite the often heard statement that these conditions are not progressive nor would they kill you. It essentially kills what life you may have had before.

Some of my friends laughed but then realized it wasn't too funny. In their defense, I began my email with: "I wasn't always a klutz!" Many knew me as a strong, independent, risk taker and to see me become weak with poor balance, etc. just isn't something anyone wants to see... including me.

I thought the article was enlightening. I hope you agree! ~ JT

 

[alex3619]

Hi everyone,

I have fallen down so many times I have lost count. There are two reasons that I can see in my case (although I have some complications that worsen one of them).

The first is orthostatic intolerance. If you are passing out even for a second, it is like passing out when driving. You come to and find yourself out of control. It is a little hard to stop the fall half way down. Very often, in my case, when I pass out it is for several seconds and I don't always feel the impact of hitting the ground or stairs. This has happened to me hundreds of times, once three or four times in a single minute. (I was in a hurry while studying at uni and didn't wait to recover before I stood up again.)

The other issue is as has been described in several posts here: balance. Balance is a complex interplay of many parts of the brain. If just one is neurologically impaired, the entire balance is compromised. In my case I also have severe foot pain at times, and I step like I am walking on eggshells. This makes balance even harder. Once I lost my balance in the kitchen, but grabbed the fridge. It slowed the fall but then fell over on top of me. This wasn't OI, it was purely balance.

Bye
Alex

 

[girlinthesnow]

Hi folks,

I fall down, run into walls and break a lot of glasses. Unless I am singlemindedly THINKING about holding onto the glass, moving over so I don't hit the doorframe or concentrating on each step I will miss it. This has been going on for a decade at least. Obviously it's some kind of basic mess up, needing to use the conscious part of my brain to do things that should be taken care of by the sub/unconscious part.

 

[Athene]

"Total spaz moment" !!!! That made me laugh s much, that is me!!!

I was recently walking downstairs and my legs suddenly decided to do two seconds of "Riverdance" by themselves. My sister has noted that I often "trip over the floor".

I've been reading recently about impairment of proprioception, which is a loss of control and perception of where your own body, and especially extremities, are located/moving to.
An example which happens to me a lot is that I fail to percieve where a step is, so I think it is a shallow step when it is really a deep one, and fall onto it. Sometimes it is the opposite, I stamp my foot down because I think the ground is a bit further away than it really it.
This is a major symptom of Vitamin B12 deficiency.
It is also common in autistic children.

So I am wondering if that is what we have going on???

 

[shiso]

The step/depth perception thing is what led to my spill too. It does seem like a brain thing.

It's not directly related, but the mention of this happening in other diseases reminded me in a passage from a book by Michael J. Fox about his fight against Parkinson's. He described that PD patients have problems with depth/space perception but it's more than that - he described a symptom where he'll be walking in one direction and a person might be walking towards him at a doorway, and his body literally stops moving (legs won't walk) until the other person moves completely out of his way. He said sometimes some other movement (by someone else) is needed to trigger whatever his brain needs to do for him to resume walking.

 

[Wonko]

I used to - both my ankles have been broken so many times that they are now a weak link even when everything else works - 3 different types of fall
1. go to take a step and it feels like foot is nailed to the floor - used to happen on stairs a lot
2. got to take a step and it feels like leg simply isnt there - so I step and there's nothing to support me - so I fall over - fairly sure there is a brief loss of conciousness as it's rare for me to remember hitting the ground - mainly happens on a level surface but this one is great fun if it happens on stairs
3. the old legs do there own thing has caused to walk into doorframes etc quite a few times - when it happens outside it's quite annoying as I simply cant walk forward - however much I try or stop and reset I keep walking diagonally

fortunately it doesnt happen nearly as much as it used to - down to a few times a year now but thats probably down to me taking less steps than I used to

 

[Athene]

I can see some of you have had awful falls adn I am so sorry to hear about it because it is very frightening and upsetting. Sending love and hugs to everyone!


My mother (70 now and with CFS for over 40 years) has had some truly awful falls over the years. In the latest one she fell over in the road and nearly got run over. The car avoided her and very nearly crashed into another car in doing so. Her whole face and chest was literally black from the bruising. Don't know why I'm telling except that I am still upset about it myself, so go figure how she must feel!

I tried raising this issue before on this forum but without a response, so I am kind of glad to know it really is a symptom of CFS - a major one for me and Mum, which I think should be mentioned more often in symptom lists. I hate the fact that people think I am just clumsy or careless. I cannot remember the number of times I have got out of bed and walked straight into the door frame. Sometimes I miss-aim so badly I hit the wall at full tilt. Normal people don't do that no matter how clumsy they are.

 

[alex3619]

Hi girlinthesnow

Ha, one of my pet theories, though completely unverified at this time. Narrow focus of concentration is a hallmark of CFS, as is difficulty at quickly shifting this focus. I think our brains absolutely require a very high level of focus to do even simple things that should be conditioned behaviour, like making a cup of coffee. Because we have to focus on every little thing, we have nothing left to focus on anything else. This plagued me in my uni study days (when I was less ill than now) and seems to involve absolutely everything I do, including typing this post. What I am doing is what I am doing, everything else is gone. If my attention wavers while walking I kick my toes, or stumble, but I don't usually fall down. If I don't focus when cutting vegetables, I cut myself. I also drop cups and bowls.

I think this a big part of brain fog, and why we have so little conscious mental capacity - it is all spent on what would be unconscious behaviour in others. It is also very exhausting, wearing us out mentally. This is why when we are tired our coordination and manual dexterity drop to rediculous lows.

Bye
Alex

Unless I am singlemindedly THINKING about holding onto the glass, moving over so I don't hit the doorframe or concentrating on each step I will miss it. This has been going on for a decade at least. Obviously it's some kind of basic mess up, needing to use the conscious part of my brain to do things that should be taken care of by the sub/unconscious part.

 

[girlinthesnow]

Alex,

If my brain was in better shape it would be interesting to do some reading research to find out which parts of the brain are the likely culprits for this. I suspect we're back to the 'primitive bits', hippocampus ? since it is the unconscious part that seems to need help from the conscious part (frontal cortex) in order to function.

 

[leela]

Oh dear, while it's comforting to know it's a symptom for others too, I'm so sad to hear about the awful spills some of us have had...
On the other hand, some of the responses made me lol, (especially "Riverdance Legs"--that's a goodun!)

I too, like many of you report, used to be pretty coordinated with good posture, motor skills and hand skills as an artist. (Now I often get my own name wrong on a form and my handwriting is atrocious!) The shoulder/door frame thing, the hip/tabletop thing, the dropped dishes, the spilled everything, the trip-on-the -floor thing....omg! When when when will we get ourselves back? Why oh why is it so hard for others to understand that these things are part of a freaking illness? Worse yet, just one of a long LONG list of pesky symptoms?

I think it *does* progress. It just also remits. It's like a chokehold some nasty little invisible demon keeps taking on us until just before we can't breathe, then he laughs and lets up until we catch our breath a bit and then....on and on.

Gosh, we have all come to take such a huge pile of crap as a baseline, that what we think of as a good day is often more than healthy folks would be able to bear with dignity, I'm sure of it. I'm used to so much disability and pain as part of the package, I don't even cut my own self a break sometimes unless I'm in a huge flare.

Anyhow, back to the falling...I think this question of focus is a good one. Much like all the metabolic energy is focused on running the simple tasks the body needs to stay alive, with nothing extra left over, it's sounds like the same is true for our mental energy. Multi-tasking is entirely impossible for me, so perhaps we as PWCs have simply reached the point where "walking and chewing gum" is demanding too much of the brain. Oddly, and ironically, my mindfullness practice was one of the first things to go with this illness.

Still, I think there's more to it than focus. Surely there is some glitch wherein we are not perceiving correctly where we are in space, and the balance mechanism is wonky. I think there are some things in common here with PD.

 

[alex3619]

Hi leela,

I don't see evidence of the spatial perception problem in me, but then even the brains of identical twins are a lot different - but there is a perception problem at times for me in that I can see fine but not understand what I am seeing. This might be related.

I also had to give up meditation, though I never got into mindfullness meditation or most Buddhist practices, I was more into advanced breath meditation (which has Buddhist roots) and autohypnosis. The breath meditation was really useful to me earlier in my illness, as I used to be able to go more than five minutes without breathing, a useful skill when you have CFS related bronchospasms.

Bye
Alex

Multi-tasking is entirely impossible for me, so perhaps we as PWCs have simply reached the point where "walking and chewing gum" is demanding too much of the brain. Oddly, and ironically, my mindfullness practice was one of the first things to go with this illness.

Still, I think there's more to it than focus. Surely there is some glitch wherein we are not perceiving correctly where we are in space, and the balance mechanism is wonky. I think there are some things in common here with PD.

 

[alex3619]

Hi girlinthesnow,

It might help to understand which parts of the brain are responsible, but it might not. This might only be useful in a research setting where they can do controlled experiments, brain scans etc. Personally, I suspect that many regions of the brain are compromised, and that our conscious planing and control capacities are locked in to compensate for these mulitple problems. The cerebellum and the motor cortex would be two candidate areas, with possibly the visual cortex, but I would bet there are others as well.

If I were looking for the culprit it would be widespread neurological damage, perhaps immunogical, or hormonal or metabolic, or even XMRV.

Bye
Alex

Alex,

If my brain was in better shape it would be interesting to do some reading research to find out which parts of the brain are the likely culprits for this. I suspect we're back to the 'primitive bits', hippocampus ? since it is the unconscious part that seems to need help from the conscious part (frontal cortex) in order to function.