That's definately getting worse my friend... I only get the jerky spasms when I'm doing relaxation or laying down - occasional smaller ones on sitting - like a feeling that my head wants to move constantly and sometimes in other parts of my body - arm will jerk etc... Oh the joy of the endless ever changing and increasing symptoms hey!
You take care of yourself - and thanks for showing this.
Hi Tania, It's pretty uncomfortable isn't it! I still haven't had it happen in public, fortunately. I have had the movements but not the noises. I have done dome more research into ME and have learnt that dystonia and myoclonus are features of it, especially in the epidemic version, much rarer in the endemic versions of the illness. So I am still open-minded to what it all is. Hopefully I'll get answers soon and at least some sypmtom relief.
wow.. I do definately have CFS/ME.. and I do get the same with the vocals when I occassionaly spasm ... same noise as you too (it happens when im at rest too, once happened while i was out in public and did draw attention to me). You mentioned one in which your head goes sideways, I get one where my head goes to the side, like a tic. Fortunately that one dont happen much but when it does, my head is thrown quite violently.
Hi Linda, They have been more frequent lately. They were particularly bad on a the day that I made the video. I am fortunate that I haven't had the vocalisations while in public yet, but I have to go to the doctors for some blood tests on Thursday,it could be quite interesting if they happen there! I am having increasing problems with walking. My legs go into spasm after a short distance. Still waiting to get all of the info together to send to Canada, hopefully I'l get some answers.
Paul - thanks for showing this. I tend to make vocal sounds when i am having severe spasms when laying down, particularly full body spasms. i am not sure if its the same sort of thing or not. It can be hard to deal with - very exhausting too.
i was wondering if you are experiencing the spasms /neurological symptoms more frequently now?
neurological problems are so common now,its not the boom in population it just getting commoner for people to experience these problems, well done for posting this vlog :-)
You made me jump when you made those sounds! Hope you find some answers.
neelubird 4 years ago
Hi,
That's definately getting worse my friend... I only get the jerky spasms when I'm doing relaxation or laying down - occasional smaller ones on sitting - like a feeling that my head wants to move constantly and sometimes in other parts of my body - arm will jerk etc... Oh the joy of the endless ever changing and increasing symptoms hey!
You take care of yourself - and thanks for showing this.
xxx
deadgirldreaming 4 years ago
Hi Tania, It's pretty uncomfortable isn't it! I still haven't had it happen in public, fortunately. I have had the movements but not the noises. I have done dome more research into ME and have learnt that dystonia and myoclonus are features of it, especially in the epidemic version, much rarer in the endemic versions of the illness. So I am still open-minded to what it all is. Hopefully I'll get answers soon and at least some sypmtom relief.
kaazoom 4 years ago
wow.. I do definately have CFS/ME.. and I do get the same with the vocals when I occassionaly spasm ... same noise as you too (it happens when im at rest too, once happened while i was out in public and did draw attention to me). You mentioned one in which your head goes sideways, I get one where my head goes to the side, like a tic. Fortunately that one dont happen much but when it does, my head is thrown quite violently.
taniaaust1 4 years ago
Hi Linda, They have been more frequent lately. They were particularly bad on a the day that I made the video. I am fortunate that I haven't had the vocalisations while in public yet, but I have to go to the doctors for some blood tests on Thursday,it could be quite interesting if they happen there! I am having increasing problems with walking. My legs go into spasm after a short distance. Still waiting to get all of the info together to send to Canada, hopefully I'l get some answers.
kaazoom 4 years ago
Paul - thanks for showing this. I tend to make vocal sounds when i am having severe spasms when laying down, particularly full body spasms. i am not sure if its the same sort of thing or not. It can be hard to deal with - very exhausting too.
i was wondering if you are experiencing the spasms /neurological symptoms more frequently now?
Much love to you,
Linda
Best wishes Linda
gregcrowhurst 4 years ago
neurological problems are so common now,its not the boom in population it just getting commoner for people to experience these problems, well done for posting this vlog :-)
sarahknowstheanswer 4 years ago