Extreme fatigue- strange symptoms

Hi folks Had a tiring day today and suffered for it. We went to Naidex - but that’s another story- I’m a bit low anyway cos I’ve got yet another UTI. Came home exhausted and feeling chilly, so wrapped myself up in a couple of blankets and Ruth made me a hot water bottle. Slept for a while and woke up feeling a lot worse, leg spasms continuously and convulsive shivering all over. I took paracetamol on top of my gabapentin, tried some deep breathing, and slept a bit more. Now, this isn’t new, it happens every now and then when I push myself far too hard. In fact I remember it happening long before neuropathy was ever a concern, so it was an early symptom. I used to do a lot of late nights and travelling playing gigs, and over the more recent years was finding I’d come in and crawl into bed shivering uncontrollably. My question- is this just my own personal version of the beast, or is it common? Question 2: someone mentioned in a recent thread about a syndrome where ms sufferers are affected by extremes of temperature, but I can’t remember what it’s called. Anyone? If you’ve got this far, thanks for sticking with me! Love Kev Ps 10pm, and in bed , feeling somewhat better, but ready for a LONG sleep

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Hi Kev,

the heat sensitivity is Uthoff’s and I still rember googling it… when I got the letter from neuro, I had to hit google as there was the Uthoff’s, L’hermittes, Attaxia and some other stuff mentioned and I was lost!

The shivering (and this is on my list to ask) just might be related to spasticity - I have quite strong recollections of having problems walking as my legs were shivering… I had actually put that down to weight loss. I did manage to overlook or find reasons to disregard my MS symptoms for quite a long time tho. Now I know a bit more though.

Hope you get a good night’s sleep, I’m just about to have a cupppa and then it’s time to sleeeep.

Sonia x

Thank you, Sonia. I did google Uthoff’s when it was mentioned. I’m sure you’re right, the shivering is spasticity related. I asked about Uthoff’s because I began to wonder whether my hot water bottle was in fact making everything worse. Anyway, had a ‘reasonable to good’ night on the Kev Adams quality of sleep scale. Have a more restful day ahead, too.

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Hi Kev. The UTI can also cause temperatures and shivering (rigor), so I’d see if it happens once you’re over the infection. See if taking regular Paracetamol (2 tabs four times a day) for a few days helps as it helps control temperature during infections. I know I feel cold when I’m tired too, there could be other reasons besides the ms, though with this illness it could be anything. Hope you feel better after your rest.

Cath xx

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Cath- good point about the UTI. I do take a lot of paracetamol anyway, but I always try to do without it if I can, for some undefinable reason, probably due the fact that of all the medication I do take it’s the only one I can miss out! Then I don’t feel quite such a meds fiend! Kx

Hi Kev, I think the shivering sounds like reaction to the UTI. Are you any better now? Hope so. Pat xx

Thanks Pat- the UTI is in retreat but the antibiotics are knocking me out! Still, last two tablets tomorrow, and we’re off on holiday tomorrow til Monday. I’ve been getting contradictory stories from the ms nurses and my GP. GP says I should expect more infections now I’m self catheterising twice a day, whereas the ms nurse and the neuro both insist I should have less because I’m properly emptying my bladder. Yesterday my ms nurse was going to ring my GP to talk it over, but I haven’t heard the upshot yet.

Kev, I think the general belief is that you should be getting fewer UTI’s because you’re emptying bladder… I think that’s really the big advantage. Be interested to hear what the outcome is. UTI’s are awful things and so many disabled people and older people get them… wish they would come up with something better to treat and cure them. Antibiotics and MS are not a good mix… both working on our poor immune systems… but you should feel better within a few days of stopping them. Pat xx

l am a little bit concerned with an unpleasent feeling that washes over me starting from head to legs and finishes in my stomach that is`nt easy to discribe.

l don`t know if it is thep.p. m.s or the medication in particular Tegretol and clonezepam Auden.

l also take baclofen and amitriptyline and would like to know if anyone else has had these episodes?


i start shivering when i’m tired.

where other people yawn i shiver!

my husband keeps on saying “it’s not cold”.

IT may not be cold but I AM!

carole x

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I get something like this, it also makes my eyes all watery, then filters down through my body. It is usually a sign for me that I have done too much and need to just stop straight away. If I carry on through it, I find the exhaustion after is much worse than normal.

I’ll vouch for that I’ve gone through that the past two days I just made myself a good meal steak dinner and took a Clonopin and magically I’m feeling a lot better and hope to get a good sleep tonight I have not been sleeping very well the past few nights I tried Requip for my restless leg syndrome first night at work second night it was pure hell didn’t work at all. This is my first day on this forum and it is very enlightening to see others who are getting the same symptoms with primary progressive MS such as the watery eyes and headachy feeling sick to your stomach feeling I feel like maybe I’m going to throw up I never do. I had the first symptoms of this when I was 40 and 56 now has not got a lot worse several hard time doing things although I can get things done but I feel like I’d rather sleep instead because I don’t get much sleep throughout the night and I’m tired all day. I can still walk ride a bicycle was exercising and doing a lot of push-ups until I tore my rotator cuff in June because I fell down. Best of luck to everyone this is been a humbling experience. I was diagnosed in 2014 in the summer so many doctors if I never saw one of them I would be in the same shape I am right now. Thanks for listening

I get cold parts of my legs and different parts of each leg

I find that taking a magnesium supplement at night helps my restless legs.


my wife has been suffering with this condition for several years, she has been diagnosed with the most aggressive version and really suffers with it. Her main issue is having nystagmus that has been caused by MS attacking her optical nerves.

The condition gives her severe motion sickness and extreme fatigue. The condition is getting worse, the ophthalmologist has done all the tests for inner ear issues, she had prisms on her glasses, which did not help. The conclusion is that he can do nothing to help and she has to manage her symptoms.

If we go out in the car, which is very rare, she can not function when we return. She is violently vomiting, she looses all functions with her legs and arms and she has to go to bed due to exhaustion which has been for a couple days.

The MS team she is now working with, we have recently moved to a new area, are great, but even they seem stumped as to what to do.

My question is, has anyone had similar experiences and found something that helped.

Things are getting pretty desperate and i hate seeing her like this and i feel helpless.

Thanks in advance

Hi there,

this is a very old thread, if you create a new post then people are far more likely to see it and respond to you. Also, there’s a ‘caring for someone with MS’ so it’s probably a good place to post too.

Sonia x