Coping with dystonia : Does anyone out... - Dystonia Society

Dystonia Society

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Coping with dystonia


Does anyone out there have dystonia in both legs as feeling really frustrated and feel I'm letting people down as I can't help them as they are having a flare up so I got one in a splint and one they are doing plastering every two weeks to correct feel alone and not understood

10 Replies


I do occasionally and definitely have in the past. I understand how frustrating it can be, you want to do things for yourself but it feels impossible sometimes. Asking for help isn't always easy and it makes your life harder and can make relationships difficult. All I can suggest is dont isolate yourself no matter how easy it is to do and no matter what a nuisance you feel you are being because its only creates stress which makes the condition worse (i have found). My way of coping with it is joking around with people as I feel that if you can make it a light topic then they dont feel uncomfortable in the situation.

Try and keep positive (i know its hard) and still catch up with people.

Krsnasmile in reply to loopss

Loops, i love your comment, I truly relate to it and YES joking about it helps a lot to diffuse the tension of others and ourselves. Being positive takes practice and there is no other way is there? We are stuck with this and the more we accept it and try to do the things that help us cope, the more we will be able to relax. Long ago i used to freak out, panic and feel so sorry for myself. I am done with that, go out and LIVE and if the tremor happen or the spasm attacks...remember this too shall pass and it will not kill you. Getting mad did not help me either,,,I am 62 now and I simply don't have time to dwell. Also the fear of an attack,,,itself can trigger it.

loopss in reply to Krsnasmile

Andree, so glad to see people actually respond on this!

There is no other way, and you have to learn to cope with it and make it a light topic of it, which at the beginning like you said feels like you just need to be sorry for yourself. Personally Im pretty positive about it, but some days feel really tough! Im only 21 and seeing my mates go out and do so much used to really upset me as just getting to the bathroom felt like a 20 step process. But now I do a lot more exercise and join in, most the time its good and i feel so much more confident about my condition. The other week I went rock climbing and my leg spasmed so hard and i was stuck up a 15m rock wall in agony, with friends i have tried to hide the condition from... that was hard, but the brave fake face, makes you stop living in self-pity.

Glad you are doing well though and powering through. Good to see that people can do that.

Krsnasmile in reply to loopss

Loopss right on!! and that's the way to go, we can't let this ruin our lives, it may try to ruin some hours but not our entire lives. We need to do things we love and do them carefully, sometimes i kayak when the water is calm...than it can get tough and I overdo it, the pain may come or not but I do take my chances and have fun, we must not be scared to live or scared of looking weak in front of others, when that happens i try to keep cool and explain so my friends do not get scared and call 911..We have the choice of living cheerfully or stay home and fear doing things. Again lets hang around people who are positive and opened minded.

loopss in reply to Krsnasmile

Exactly Andree! liking your spirit! Exactly getting the right balance and getting out there doing what you want but also holding back a little sometimes if you do need to stop. Good way of doing it, sounds very fun. Haha yeah others worry more than us most time i swear. Its when youre in pain and trying to deal with it and others are more stressed out than you are, the person in the situation.

Chumpschimps in reply to loopss

Hi and sorry for the late reply - I only just joined. I hope your symptoms have eased a bit in the last couple of months.

My daughter is 17 and has just been diagnosed with Dystonia. About 6 months ago, her right foot turned inwards and over tobthe side as well, so she’s walking on her ankle bone, if that makes sense. It’s in a completely fixed position and can’t be moved.

She’s been on crutches since February.

Her left foot has now started turning in, exactly the same as her right started. She’s waiting to see a movement disorder specialist but has another 10 weeks to wait for an appointment. I’m worried she’ll be in a wheelchair by then and her feet will be so far gone that they’ll be beyond help.

It’s completely tuned her life upside down and she’s really struggling to come to terms with it.

She went to an equine college and lives for horses, but had to leave college earlier this year for health and safety reasons. She’s looking at starting a new college in September but I’m worried how she’ll cope being a year behind, frustrated, in constant pain and struggling to stay awake and concentrate.

Every day is a huge struggle because she can’t get about easily. Walking is almost impossible and she’s in constant pain. She can’t sleep at night because of the pain and meds make her so sleepy in the day.

She gets upset when people stare at her feet and is fed up and frsutaeed.

I wish I could help her come to terms with it all and know what help will be available.

Sorry for the moan but I saw your post and I can definitely relate to it with my daughter.

loopss in reply to Chumpschimps

Hi I am so sorry to hear that your daughter is in so much pain. Has it been going on for 6 months?

I have worried about that too in the past, I was just very fortunate that my family clubbed together and we went private which meant there was less of a wait (not normally what we do). We did this because it was my 18th birthday a couple of days later and my driving test and a sky dive and we were desperate to not ruin it.

It is really hard when people stare and can make you so self conscious, which is something i really used to suffer from too (being a young girl in the same boat). Now Im almost 22 and I've learnt to let people stare. But now i just let it happen as although how crappy this illness can be, the only positive is that it is character building and has made me beyond confident than i thought i could ever be.

I was going through facebook the other day, and the BBC did a documentary with a section on dystonia, it was called "amazing humans" it helped me feel every emotion to it.

I feel like I haven't really helped here, but if it does help, it does get better. I have suffered with RSD and Dystonia since I was young and this week i found out i was graduating from university with a 2:1, after struggling for years battling health, mental health and school. If you ever feel you need to speak to someone, feel free to send me a message, the same goes for your daughter.

Chumpschimps in reply to loopss

loopss, thank you so much for your reply and Congratulations on your graduation!

I can tell you understand how she feels as, like you say, you’re a young girl in the same boat.

Yes, her foot has been twisted for 6 months now with no let up in symptoms. She saw a neurologist in May who gave her the diagnosis’s and sent her for a year MRI. He referred her to a movement disorder neurologist but it’s a 16 week wait altogether. Paying private isn’t an option for me right now but I’m so glad your family could do that and you must have had an amazing 18th after all that.

Thanks for the offer of getting in touch. I might just take you up on that for my daughter as she feels alone, like no one understands.

loopss in reply to Chumpschimps

No worries! Aw thank you.

It is horrible how long these waits are and seems so unfair, especially not knowing how hard it could get. As she is only recently ill and diagnosed i can understand the frustration, especially that she had a full chance to build up her life before hand (which i think is partially harder as you remember all the times of being well). For me I was ill since i was a kid so a healthy day was rare so I didnt miss as much of what I didnt have. Being passionate about horses and not being able to go and seeing friends go must be so hard.

Honestly I dont blame you, it is so expensive, and if i got another attack i doubt id be able to go private. But it was a fantastic 18th (if not very emotional). Its annoying that private is so much quicker and is so unfair, meaning that not everyone could be in the same boat.

Out of curiosity who is the movement disorder neurologist that you are seeing?

No worries, any time, I try and come on here often, as this condition can make everyone feel so isolated. Get her to drop me a message anytime.

Rkai in reply to Chumpschimps


Although I have cervical Dystonia, I can relate to the type and level of pain which few seem to understand.....I just thought I would add something which you have probably already tried....but your point about the dreadful length of wait for neurologist appointment....I used to ring and always ask if they ever had any cancellations, give them my number and say I am always available for any cancelled appointments. Your daughters situation is so desperate I would plead....worth a try....

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