Hi everyone,
I’d very much appreciate hearing from anyone who experiences severe tremor (whole body) if you get physically tired maybe after walking a few feet (with crutches). My neuro says I have ‘probable MS’ having had 2 clear flare ups in the last 2 years, the last being very severe leaving me with lots of problems, one of them severe whole body tremor if very tired and feeling drunk etc etc. I also have a very poorly heart & am waiting for an op which is holding up the LP (can’t have an MRI because I have a defib in my chest so no magnetics allowed.
I would love to hear from anyone who experiences this kind of all over severe shaking when physically tired after activity as I find this a very frightening symptom. I also have poor balance, mobility & poor co-ordination which worsens as I get tired. When it happened recently I was unable to stand safely, even with 2 crutches, so I hung on to my son for dear life & he had to manoeuver me around to the sofa as it was so severe. It went off after total rest for 2 hours.
I would dearly love some advice from anyone who experiences this distressing symptom as it would help me no end to cope better with all that’s happening to me at the moment.
Susie xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Hi Susie, so sorry to hear you are having a tough time at the moment. I can sympathise greatly with the whole body tremors, they hurt and are very scary. I myself suffered from them when I had my last relapse which was last year. My body would start to tingle from my feet up to and including my head then spasm and tremble. I had to lay down whilst this happened as I had no control over my body. It wasn’t epilepsy as this had been ruled out. Unfortunately there was no medication to help but I began to recognise the beginning of the tingling and when it was going to happen usually after doing to much. It was unfortunately made alot worse and more frequent for me as I blacked out at the top of my steep stairs and fell down them knocking me unconcious, cut face, broken ankle and broken wrist which then put me on crutches for six weeks after a spell in hospital! The effort to move around on crutches made the tremours alot more frequent. The only thing that helped was alot of rest and only really necessary trips on crutches. The only positive thing I can tell you is that when my relapse subsided the tremors went away and touch wood have stayed away although I am left with severe weakness on my left side and completely numb hands but that is probably permanent damage from the relapse. I am sorry I can’t be of more help but please feel free to pm me if you want any more info.
Take care and rest lots
Ang x
Hi Susie
The short answer is yes and no.
Whole body tremor is a bit unusual. More often it is one or two limbs. Tremor is not uncommon with MS.
Tremors normally come in two types:
Intention Tremor - you move (say) a hand, and it goes off in another direction altogether. Technically it is a tremor with a large amplitude and a low frequency (big movements and slow).
Essential tremor - this is the opposite: small amplitude and high frequency. A bit like shivering. This is often associated with Parkinsons Disease, but can also be a condition on its own. My wife has Parkinsons, but no tremor, except when she is very cold or very tired. Often Essential tremor goes together with balance problems.
Have you told your Neuro or MS nurse that this is happening? If not, I do suggest that you do - ring the nurse on Monday and leave a message at least.
You got the sympathy - I am 13 years into a triple heart bypass, and have a bad intention tremor in my left hand (imagine going to put a forkfull of food into your mouth, and putting it straight up your nose instead). The best precaution you can take is to rest the very moment there is any feeling of tiredness. It can be really hard to not do something that needs doing - but do not make yourself tired. If this works for you, you can then tell the neuro that you do it as a way of coping.
Geoff
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Hi Susie.
I find it amusing when I suffer from Essential tremor is my arms… Especially if I’m just about to jab one of my patients! I sometimes feel like I’m shivering on the inside too. no idea what that’s all about!
Shell x
Hi Geoff,
Many thanks for you message. It’s a very disabling symptom which I had during my first big flare up 2 years ago along with vertigo, feeling & moving like someone drunk, loss of control of my legs etc. The neuro I had been seeing said that it was because of damage to my cerebellum. It lessened after a few months as I came out of the flare up & then came back with a vengeance with the flare up I had this February along with the most severe vertigo I’d ever had, loss of control of my legs (they felt like they weren’t strong enough to hold me up), & lots of other symptoms which I still have to some level. Luckily for me I am now being seen by a professor who specialises in MS & I saw him when I was at my worst. He has given me a interim diagnosis of ‘probable MS’ but needs to repeat a lumbar puncture which I’ve been too ill to have due to my heart probs.
I also get some days when one or the other of my hands shake which is a pain to deal with but no way as severe as the other type. I think the hardest part of the tremor is that it is so visible to anyone watching & I hoped that it had gone as the flare up improved but it hasn’t & still comes back with fatigue.
Susiex
Hi Folks,
Many thanks for the messages. It’s really helping me to have other people to talk to who understand as I have been very isolated due to my heart problems & the MS side has had to be ignored by the medics until after my op (Jan/Feb). My severe body tremor always happens when I do too much & just as Ang said it looks a cross between epilepsy & being very drunk.
I usually get warnings when I over do things because I get a kind of vibration in my core supporting muscles. It’s a very noticeable symptom which you can’t hide. I also get very clumsy when I’m tired & when my hand/hands shake I have to be careful not to drop things.
I also get a lot of odd little tightenings in my calf muscles that come & go & lots of pins & needles particularly in my right calf & under my feet. The worst is when it burns as well. Another funny symptom is a kind of shivery, crawling feeling down the right hand side of my body & leg. Sometimes I get them on my head or down one side of my face often before a flare up.
Does anyone get these too?
Susie xxxxxxxxxxxxxxxxxxxxxxx