I am looking for anyone who has functional myoclonus, I was recently diagnosed as a consequence of a car accident
I suffer from weakness in one hand and numbness in the other arm and hand along with body pain and spasms- my arms chest and now my legs whether walking sitting or standing these can be for no reason or if I have tried to do anything physical with my arms etc , I have awful head tics when I speak which is becoming very embarrassing and causing me some distress
my life is gone from being super independent walking cycling swimming fell walking driving all over nice places in my camper to having all of that taken away - I can’t drive anymore either
Sorry if this is a big ramble - I was diagnosed and discharged - waiting for appointment to go and get some answers 🙈😳😒
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L5XXY
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have you checked out fibromyalgia as well as I have both bless you I do feel for you. It’s a tough journey but where you are doesn’t mean is where you’re going to stay so please hold onto that. Pacing is crucial you won’t always get it right none of us do but do try as much as possible good sleep their e healthy eating and avoid adrenal drainers in your life and reduce stress as much as you are able. Concentrate on what you can do and not what you can’t and build from there. Make sure you do things in the day that fulfil you and surround yourself with those who love and support you. Learn how to say NO as your needs are just as important don’t ever forget that.
Thankyou for your lovely reply, I am kind of isolating myself away from people at the moment whilst in my caravan but this does give me the chance to go out in nature it’s a funny one I want to be here but stuck until I can get a lift back home so my brain is trying to see the positives and that they can outweigh the negatives
This week is hard due to gp basically saying this is how it is and medication won’t do anything hence him wanting to get the nureo to speak to me as I am still on the sick from work and need some prognosis and plans for moving forward
A bit of a shock to the system mentally and physically
I know I get it I was working full times d had a busy life but I had fibromyalgia then I had an injection in my neck at the hospital which three days later caused a stroke and never returned to work so I get it I really do. But it’s not right what the doctor said to you that’s it it isn’t. You may always have FND or whatever but with knowledge about the condition taking care of yourself as much as possible in time things will improve be patient and as you say you need a plan going forward and who knows. So don’t despair you will find a way through I promise you.
sorry to hear of your experiences of late. Life knows how to throw spanners and curve balls at us hey. Unfortunately myoclonus is a bit of a staple for FND. Mine is worse if I am tired and mildly under pressure. You will have better days; and it may even go away for some years.
Where are you based? I’m in Australia. Here we need to do our own research and hunt down the specialist treatments we need to give us some remote chance of recovery. It Is possible though! I’ve been in and out of flares for 40 plus years. Only known my diagnosis since end of Feb this year though after a few years of the worst flare!
I have nearly every FND disorder plus some. I found an app called Curable helped with fibromyalgia pain, and also magnetic pair therapy is good. The very most effective self help is mindfulness and learning NOT to focus on your somatic senses—how crap the whole body neurological nausea feels!!! Stay off stimulating foods and coffee.
Hang in there. And we are at an age that at least we can care less about what we look like, twisting and ticking uncontrollably. Just have a giggle at yourself and make some fun out of it somehow 😜 enjoy your nature bathing opportunities in bare feet to earth more than ever 💫
My husband and I are leaving for around 3 years in a caravan at the end of the year. I am on a cane or folding power chair and plan to make it work somehow with hubby doing all the driving though 😅
thank you for your reply , hope you have an amazing time in your caravan. I went to see my work colleagues yesterday and the body spasms started but when I went to the kitchen area which is small and there were about 5 people there my spasms were uncontrollable it was horrendous and then settled a lot once with my boss only - it is a strange one and exhausting
I have come away today to caravan and I am adamant I am going to start my mindfulness and meditating a week of trying to get this part of my life back on track as I have been down and so tearful this week
Luckily my insurance lawyer is going to get me to see some people and hopefully go to a residential nureo. Rehabilitation program for two weeks
I guess it will just take time to learn how to manage it and learn what sets it off the most etc
Nothing like some humiliating experiences to figure out what your triggers are. I stay very homebound when I’m in flares. It’s just the way it is being self employed at home here at the moment. It’s just easier. We live in a remote mining town currently so there’s nothing for me to do here unless I have someone to take me maybe to the pool. I find the more recent interaction I’ve had with others at hospital and appointments etc. the variation in people’s energy is reflected in my glitching. I think that’s why mindfulness and energy work through meditation is so important so you can build the muscle to manage you perception of interactions and triggers and then so your responses rather than your reactions are also tempered.
I am also applying for government insurance here too. Probably stuffed it up today by mentioning we were leaving our work supplied house here to go live and move around looking for my treatment and supports in a caravan. Oh well! It’s the truth. And housing here in Australia just isn’t available for people like us anymore so looks like a comfy caravan is it insurance or not! I’ve self helped up till now so so be it!!!
Enjoy you meditation
Look up Mei-lan Music. Her app for meditation is sooooo lovely.
Thankyou I will check that out now so I can try and meditate tonight . I did a long walk country yesterday alone with the dogs which helped me mentally killed me physically😂 it is just trying to get your mindset right into accepting these awful changes and how to deal with them , and what social situations etc to avoid x
build up your resilience to fitness activities slowly slowly. Like Lin…‘a post here, taking the antagonists away with switching focus is key. Lots and lots of meditation, resetting, clearing energy through your body and into the earth on bare feet. Blessings
Hi, Your story sounds a lot like mine, so I had to reach out. I was just like you, energetic, sporty and held down a good professional job. I didn’t have an incident that triggered it like you, instead it was during a very stressful life spell and I wasn’t coping for one reason and another. In amongst the stress, I was starting to lose the ability to write, hear or understand words. This was becoming frightening and embarrassing at work which I think intensified it. Then one night, for no apparent reason, I developed spinal myoclonus out of nowhere. I’d have five or six episodes a day lasting 20 minutes or so, like I was being electrocuted in the stomach. Legs would rise up and I’d crunch over and over in quick succession. Sharp noises or light would trigger an episode, and episodes would also happen for no apparent reason. After several deeply upsetting visits to the GP, I took myself to A and E and they admitted me for a fortnight. My brain MRI showed 7 lesions which they initially said was small vessel disease, but they eventually said it was inconclusive. I had all sorts of tests but was discharged after a fortnight with no diagnosis. Since then, the movements went smaller and I had several years of fasciculations where my muscles squirmed and writhed on their own. Electric conduction tests picked up the fasciculations and also detected small amounts of nerve damage and muscle weakness in arms and hands. I am now five years on from the initial onset, and went to a neuro physio last week for shoulder pain. She actually identified weakness in both arms, hands and in one leg. I’m debating whether I should go back to the neurologist but if I’m honest I found that worrying about my health had actually become a PART of the problem. It certainly wasn’t the cause, but seemed almost to be connected to the volume button if you like. The appointments were so distressing and my symptoms would be worse for a few weeks after each. I cried in one appointment and the neurologist wrote to my GP about my mental health and menopause. It actually started to feel really quite toxic. Stepping out of the system worked for me, and the myoclonus and fasciculations fizzled out over time. I foucused on restorative exercise and diet, and did my research in those areas instead of reading medical reports, and that helped my mindset. The consideration now is whether I need to return to the system to discuss the weakness. I suspect that the extra muscle activity burnt out the electrical circuit in my limbs somehow. That’s how I see it in my mind, and that helps me to stop worrying that it might be progressive. I still can’t believe that someone with such extreme symptoms like yours and mine can be left with no diagnosis. That’s the worst part and I couldn’t accept it for such a long time. I honestly think that my quest for an answer was hindering my recovery, but that’s a perfectly human reaction right? I can’t help but look at old videos of WW1 veterans who had similar movement issues as a result of shell shock. I am still very much trying to wrap my head around all of this, so none of this is advice as such, just an explanation of the journey I’ve been on and I hope that it helps a bit x
You are very right the worry of the unknown future and hospital appointments certainly does trigger the body spasms and head tick and I feel hinder your recovery , my gp told me I would t recover I would just have some good day and some bad days
Luckily the insurance solicitor is looking to send me to neuro rehab which is a two week residential and also for me to see a neuro physiatrist which is a positive
I like you am trying now not to focus on the diagnosis. The hypersensitivity is a pain and the weakness , it’s awful that we get a diagnosis then nothing is done to help no occupational therapist nothing . I did a seven mile walk in the countryside yesterday which certainly helps me mentally to try and cope with the huge negative transformation of my life
you are so right in your assumptions around your experience Lin…. Over my 30 plus years of flares (usually triggered by overwhelm), as soon as I take my focus off, the symptoms mostly subsided. So glad someone else is noticing this. Diagnosis’s are distressing and of course they create a snowball of anxiety feeding the problem. Dr Dawson Church Wrote a great book, Mind to Matter. it’s about neural pathways and what we focus on, or not. Got me out of one flare around 6 years ago. This 3 year flare I’m in was triggered by trying to assist with care for my Dad with MSA at home till his passing last Sept, all the while with tending my sons mental health team while he has type 1 diabetes since he was a baby and a substance abuser with suicidal ideation. I just need to meditate and heal now, that’s all. Lol
All the best on your journey. We are all on one or another!!!
An older post re myoclonus: I still have myoclonus/myoclonic jerking and am still taking the benzo, clonazepam. When I got this condition in 2006, clonazepam was the first-line, go-to med listed for all doctors. Now in 2022, I am sometimes treated like a weak, drug-seeking addict, sure to get dementia and worse! The thing is, my long time dose of 1.5 mg. per day was mostly working until this year. (I don't know if my full vax status or my having had Covid has anything to do with it) I LIKE it, but fear ever having to go off of it. Too many scary stories out there.
The jerks normally begin as a jolt or electric feeling in my head which culminates in a moderate, sometimes strong jerk of my head, neck and upper left side. Sometimes it lasts all day. Sometimes not so much. I do have a pinched peripheral/spinal nerve in my back on the upper left side as a result of ski injury in 1995. The jerking started in 2006 when I was 48. I am in very good health (knock on wood) otherwise.
I will see my neuro soon and see if he could possibly increase my clonazepam dose a bit, but these days the medical community is very down on benzos for everything as they are so abused, even when they actually work! I must call for a refill every damn month. Doctors want me to go on anti-epileptic drugs, but those side effects are harsh. I recently tried Depakote and Primidone and they made me feel depressed and heavy while not really controlling the jerking.
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