calories burned with involuntary movement??

shakybabe

I've got a question for you?... I get involuntary muscle movements due to a rare neuromuscular condition, they only stop when I'm fast asleep.. if i was laid in bed all day watching telly for example but not fast asleep my muscles would still be moving even though I wasn't voluntarily moving them.. for example to type on laptop whilst I was in bed.

I'm in a powered chair most of day semi reclined but as I say my arms and legs muscles still contract and relax more or less constantly.. how many extra calories a day would I burn than someone my height and weight (with no involuntary movement) also just sat in a chair all day?

My height is 5ft 3 and half and weight currently 154lbs (11st).

I just wondered if the involuntary muscle movement would be classed as NEAT (fidgeting) or require equivalent calories as a 1-2 hr workout?

Also if I'm managing to also burn 500 cals in exercise via a passive trainer bike and some floor exercises I can do.. how much should I be eating? MFP has me at 1210 I think for 'lightly active'.

Thanks

rudegyal_b

i googled this for you and i think youve asked this question on other neuro forums and have had many responses, doubt anyone here can really tell you any better

this is one for a neurologist

deeharley

Years ago, I worked in a nursing home and one of our residents had Huntington's disease - he had constant spasms, like you describe. Part of our job was to make sure he consumed 6,000 calories a day, just to maintain his weight. So, I don't know if "fidgeting" would do your calorie count justice. Maybe talk to your doctor about it.

Johnny_Castle

Years ago, I worked in a nursing home and one of our residents had Huntington's disease - he had constant spasms, like you describe. Part of our job was to make sure he consumed 6,000 calories a day, just to maintain his weight. So, I don't know if "fidgeting" would do your calorie count justice. Maybe talk to your doctor about it.

WOOW! That's so interesting!

shakybabe

Yes, I have asked elsewhere I haven't found anyone who can give me an accurate estimation, which is why I'm asking again.. on the off chance that someone on here may know! .. the kind of response like from Dee who worked with someone who had Huntingdons.

Some numbers I had been given were 500-600 extra, up to 1,000 and now 6,000??? is this a tall/big man who already requires alot of calories for his basic BMR PLUS the additional ones from very vigorous constant movements?

I've asked on Ataxia forums and Dystonia ones (Have Ataxia/Dystonia mixed) no-one seems to know other than Ataxia would make you burn more doing simple things cos of co-ordination and effort needed and Dystonia too cos of Involuntary movement, mine are still classed as mild.

I saw a post on here which mentioned taking your goal weight in Kg and multiplying it by 30 or something to get the amount of calories you would need to maintain your goal weight.. mine was 60kg and 1,800 cals, but I'm guessing that would be for the average person.

I'm eating nowhere near that but still losing, even if I choose lightly active on here I only 1250 cals a day. I was wondering whether to increase to moderately active to include the involuntary movements but log the exercise too and eat those calories back?.. but I don't want to pile the weight back on after just lost one and half stone. .. and I'd have to add carbs back in to be able to get anywhere near the amount of cals it suggests at that level?

My guess was 500-1,000 depending on how bad the muscle spasms are (some days are better than others) I figured if added them all together by end of day it would be about equivalent to maybe a couple of hours down the gym for someone with full mobility?

My neuro has never seen a case of them mixed.. she's trying to see if she can find anyone from Walton Centre of Neurology in Liverpool or a London hospital who may know... but it will be next year before I get an appointment (9 month wait once she finds someone).. long time to have to wait to find I was on wrong calories and damaged my body in meantime! .. so just trying to work out temporary solution from info I can find on internet.

rosied915

Not sure what you're trying to ask here........do you think you should eat more due to your tremors?

Are you unhappy with your rate of weight loss? In past posts, you have been concerned about not being able to lose due to being wheelchair-bound and somewhat exercise restricted.

Consider this: if you were not eating the correct amount of calories you wouldn't be losing at all, right? Do you really think that you could add 500, 600 or even 1000 more calories to your diet and still lose?

This is totally an opinion (but I DO have MS, another neuro disorder) : I think that, for YOU and YOUR body, the tremors are part of your NORMAL bodily functions and would NOT be considered exercise.

I think you're doing a GREAT job and don't think you need to keep "tweaking" things.

(please read that last line at least 10 times )

shakybabe

Hi Rosie

Thanks.. they aren't constant tremors as such (not like parkinson tremor for example) mostly confined to arms my movements are jerky if try and move arms and my hands more or less constantly flex .. (particuarly at rest when I'm not trying to do anything with them) unless I have weighted splints on. my leg muscles do intermittently contract and relax too throughout the day. My condition has been more closely likened to resembling a mild athetoid CP, if you've ever seen a child/adult with cp who can't seem to stop 'fidgeting or moving.

I have noticed recently my left leg in particular starts going into spasm and 'shaking' if I'm on passive trainer bike too much then back of left leg will swell for a few days.

Today I pulled back doing pilates as mucles jerked mid move and I seem to have pulled something so currently laid on hot water bottle on the bed.. trying to get the pain under control for Tuesday which is my day out xmas shopping and lunch with a friend so I be sat in manual chair for about 6 hours and pushing myself up and down shopping centre for about 4-5 of them (stop for lunch for an hour).

I do wonder if I'm pushing my body too hard sometimes and if I would naturally burn off higher than average anyway.. so if I knew this I probably wouldnt push myself as hard with exercise. I thought I was losing better cos I had dropped carbs (white flour, rice, pasta, bread etc) so rarely make it over 1200 unless its a treat day and I had chocolate or something or allowed a jacket potato etc.

I would say at this stage my movements are more like fidgeting than very vigorous I certainly don't think I could be burning off as many as 6,000 a day! .. I feel I'm starting to stall though now my body has got used my involuntary movements and new diet.. so was wondering if should up calories and what to?

fiberartist219

Adjust your diet by 100-200 calories and see what happens after a few weeks. If it is working, great. If not, go back to your old number of calories.

Sometimes, when you plateau, you just need to do something different, like zig zagging your calories for a few days.

Good luck!

shakybabe

Thanks I'll try going up to 1400 and zig zagging around that number for a week or two.

shakybabe

Thanks I'll try going up to 1400 and zig zagging around that number for a week or two.