Worse at rest

Information about how to manage or reduce the severity of BFS symptoms

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Worse at rest

Postby Squidge on August 2nd, 2014, 10:54 am

Hello everyone
Firstly, thanks so much for this forum..it has been mu support through the last few weeks. I have only been twitching for four weeks and also have cramps in both legs. I am fortunate to work in Uk hospital and got to see neuro after two weeks. He did the clinical exam and asked my history and diagnosed me with cramp fasciculation syndrome. He said no need for emg as 100 percent sure I'm okay. Mine started n both calves and I now have twitches in other places. I also have aches and cramps which are worse when resting and I find lying in bed is the worse. If I walk around my legs feel fine(weird). I just hope they stop soon as affecting my daily life big time. Also my Cpk was 273 which worried me but neuro said this was fine with CFS and he wasn't bothered. By the way are there any other females from uk here?
Thanks guys you"re all fantastic support
Best wishes
Squidge x
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Re: Worse at rest

Postby Crampydr on August 6th, 2014, 1:50 am

Hi.
I am also a female, British twitcher! I am 38.
I have been going for about 4 months now. Twitching all over, aches, cramps etc.
I went to see a neuro privately about 4 weeks in because I was incredibly anxious about it all and wait for NHS appt was 3 months. He did a clinical exam and noted brisk reflexes and no weakness and said I did not need any tests or follow up, but to contact him if anything changed. He is a good experienced neurologist and I did trust him.
My worry is that things have changed. I am getting many more cramps and more muscle tightness. Still no weakness though and I can still run 10k happily enough. My plan is to not go back unless I actually get weakness and just do my best to cope meanwhile.
I am finding this hard though.
Hope all goes well with you!
Vx
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Re: Worse at rest

Postby Squidge on August 6th, 2014, 1:40 pm

Hi Crampydr

I have only been getting the twitches for about four weeks but I am finding it all very debilitating. I cannot sleep because of the cramps, soreness, twitching and pain and I find that as the day gores on everything improves and by evening my legs almost feel normal. It is all very, very strange. I also find that walking improves things a lot.I have been prescribed Carbamazepine but looking at the side effects I'm really reluctant to take it. I think there is a bit or should I say a lot of anxiety with me and I have really dark thoughts about this condition even though my lovely neuro has said all is fine. By the way, I live in Suffolk and am much older thank you..........54.

Nice to hear from a twitchier in blighty

Best wishes

Squidge
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Re: Worse at rest

Postby reanne2489 on October 26th, 2014, 7:27 pm

Hi ladies,

I'm also british but living in beijing. One advantage of the private health care here is you get through tests quickly but translation and seeing specialists can be hard as asian people dont typically suffer from neurological disorders/diseases like caucasians.

I had a lumbar MRI which showed a bulging disc but no explanation for symptoms and my EMG of the left calf after 4 1/2 weeks of twitching came back clean...so im hoping im ok.

I have been twitching for almost 2 months now. It's widespread but my hotspot is my left leg- very much the calf but now also the sole of the foot and thigh.

For the first few weeks the leg felt like it was buzzing in bed from dawn to dusk- it doesnt feel like that so much anymore, but there is a lot of pain in my left calf and sole of my left foot now for the past 2 weeks. I was prescribed muscle relaxants but they dont do much. Walking is fine but at rest it feels much worse. Also the foot feels like it stiffens and cramp-like when at rest/ in bed.

No fun! I just hope the variable nature of the symptoms points more so towards a benign case than something sinister.
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