hi ... i am early 60s ... i was diagnosed in 2016 with functional dystonia ... it affects my entire left leg down to my toes ... the symptoms started in 2014 ... rigidity, tightness, frozen gait ... the muscles engage but won't relax ...it's like i have a wooden leg ... very painful ... can't even walk ... have been on crutches for last 4 years ... i believe this resulted from excessive, repetitive, improper, over-use and mis-use of my leg muscles while working out for hours on end ... anyone else experience this ...?
... thanks
i have gone from being the most active person on the planet to not even being able to walk to the mailbox ... please help ! ... thanks
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christopher_cms
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This might be the least of ur worries but..what type of crutch r u using? I switched to a "Canadian crutch" n it made a huge difference..n also who makes it.mine has a sort of shock absorber in bottom.also the hook crutch makes it easier for long time on urfeet.I have wheelchairs to get me around in my home n when I'm out/manual n electric.it sucks to use them but it gives my body a break from the pain n weakness.
I know it's not a great reply.. when u have Dystonia. .anything can help.best of luck to u.
hi ... i had to look up what a canadian crutch is ... thanks ... am not sure if it will help ... maybe ... what is a hook crutch ?? ... my biggest problem is my leg stays rigid and i can't clear my left foot off the ground ... i can only walk a short distance on crutches ... i really can't do much at all ... i really should have a wheelchair ... thanks for your note
to begin, i'm always sceptical of "functional" diagnoses. I saw a doctor for years who had evidence of lesions on my spine and brain changes who couldn't figure out what was wrong with me so he told me it was all in my head. I fired him, found a new neuro who evaluated me and looked at my test results and was able to diagnose me.
having said that, do you try stretching? I have ataxia as well as dystonia so that complicates things, but stretching has helped me so much. when I first began exercising I could do hardly anything, but within a couple of weeks I noticed improvement. leg stretches might help with the stiffness and pain. do you see a physio? they could guide you.
hi ... thanks ... yes stretching and therapy helps ... acupuncture helps but the relief is short-lived ... i think there are some mis-conceptions about functional dystonia ... it just means it can't be tied to something like brain trauma or a known cause ... it is like a software problem vs a hardware problem ... that's my understanding ... but i do have dystonia ... what kind of dystonia do you have ?
oh, whenever I've heard 'functional' I thought it meant psychosomatic as opposed to of unknown origin. I have secondary dystonia brought on by neurological illness. it's up in the air which illness as I've had (hopefully) monophasic transverse myelitis, live with 'possible ms' hanging over my head, and recently have had whispers of young onset Parkinson's. as far as the short term relief... yes, that is rough. sometimes I get up a few times a day to do my leg stretches as the cramps in my calves hurt so badly I have to focus on breathing. I also stretch my arms and shoulders a lot as I spend most of my day in bed. i'm also on a lot of medication. for the first few hours I feel fairly human again, but some days I count down the minutes until my next dose.
there is a lot of misconception about functional dystonia ... that's what my doc said ... the thinking has really evolved over the years ... what are you taking for your dystonia ?
I use cbdmd.com, they have gummies, pills, and tinctures, but I use the vape additive (former smoker). it's a vanilla flavour, gmo and gluten free, and vegan.
also ... i noticed that this is a hemp product, which is different than marijuana ... hemp is not controlled ... marijuana is ... what is your understanding ?? ... this is why their products appear cheaper than other marijuana products
I live in the states now and only a few of them allow marijuana usage even for ill people. while the penalties are less harsh, i'm not interested in jail time. *sigh, that's why I use cbd instead. it's legal everywhere and helps. I've never actually used marijuana so I can't compare the two.
thanks ... i see ... my understanding is hemp and marijuana are both similar plants but hemp specifically has been bred to pretty much eliminate THC ... leaving only CBD ... marijuana has both ... so to get CBD out of marijuana is more costly than from hemp ... also, hemp is legal everywhere so the cost is lower ... is that your understanding ... maybe i should try hemp ... what do you think ? marijuana is expensive ... have you tried the supplement 5-htp ?
I read about the supplement after you mentioned it, but it seemed a bit dodgy to me. i'd have to know more about it before trying it. hopefully others have tried it/know more. as far as the cbd, the company I use extracts from hemp. i'm not in a legal state yet *sigh. we can use medicinal marijuana for certain conditions. while I qualify, there are many hoops to jump through and high costs to get it. i'd have to stop seeing my pain specialist as well, and he's the best doctor I see. I use cbd instead and it doesn't show up in drug tests, which is good.
i think i'm gonna try a hemp cbd ... i'm in california so everything is legal but the marijauana is really expensive ... i'm looking for a cbd capsule i can take daily ... do you take your cbd daily ? how much does it work out to each day ? i paid $60 for a 1oz bottle of CBD tincture (marijuana) ... it doesn't last long ... works out to like $5 a day and i wasn't seeing great benefit ... do you take a benzo ? ... lorazepam helped me but i stopped as i didn't want to become addicted
if I had the option, I would use marijuana. from what I hear, cbd is its shadow. i've never tried marijuana based cbd though. the company I use sells capsules, but I use the vape additive. it's about $60 a month. I took one of the azepams but got off of it quickly for the same reason.
if I remember correctly I took diazepam (don't remember the dosage, but it was relatively low the doctor said) and while it completely stopped my jerking, it knocked me out. after reading about it, I felt concerned and asked my doctor to switch my medication. as far as the hemp cbd, I wouldn't buy from a cheaper company. I just tried a new company and though they claimed to be gmo, additive, and gluten free, I had an allergic reaction... which means they lied. i'm sticking to my tried and true from now on.
you would basically take an ssri for the same reason you would try cbd, 6-htp, a benzo, etc ... to calm you and reduce anxiety hence diminishing the dystonia symptoms
Unfortunately didn't see the company online anymore..sorry
thanks ... i will check it out ... i would like to find a CBD edible that is cost effective for every day use ... maybe a pill ... if you can suggest something specific, let me know ... best, christopher
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I'm awful with computer stuff re:pics sorry. I'll find the web info asap ,so u can see it there.hope it all helps.
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