Cold weather

Morning all? Now the cold weather is fast approaching, I wondered how the cold affects you all. We read so much about the heat, but I was a little curious about cold too. X

I have discovered that the cold badly affects my hands making them even more stiff, painful and useless.

funny you should ask, for me its the cold that makes my symptoms worse (although being a red head means the summer months have never been my best friend, I allways said if I lived abroad I would being living on a park bench becuase I am fit for nothing in really hot weather). Last few days have brought some awful pain, last night I thought my right hand was splitting in half and when the pain finished it was twitching with pain like mad. I also get very stiff and painful feet and fall asleep very quickley if I do to much. So far I have avoided meds for these symptoms (which has brought controversy as it is seen as you are not helping yourself, which is madness to me) but I am thinking of giving in. I dread the winter.

Catherine xx

I have grown quite fearful of getting cold over the past few years because it feels so uncomfortable, and upsetting in a way. This then makes me feel like that stereotypical ‘old woman’ no one wants to be and tell myself not to be so daft - strangely, this doesn’t seem to help… Recently diagnosed, I now wonder if this is due to hypersensitivity and feeling things in the wrong way - eg a bit of cold feeling painful? Uniqlo heat tech clothes are good for layering and keeping cosy, without being too bulky. My winter order is on the way!

I hate being cold with a passion…just been looking at matalan on line, need to freshen up my thermal drawer I also have a type of raynards condition so even in summer my hands and feet can be cold. We’ve had a bit of snow in yourkshire today!!

Muscle spasticity is worse in cold. Muscle contract even more in cold.

Moyna xxx

I am not dx but hate the cold my feet were so painful last night I was crying they felt like they were packed in ice (although hubby said they didn’t feel as cold as usual). Slept with thick socks on feels like my toes might crack off!!! Axx

Ditto Arwen - not dx but the cold is awful - its my ankles, they are so painful and the pain goes right down to my toes. Hands very stiff too and have watched my thumb twitching on and off all afternoon. I never used to be like this, I would spend all my time outdoors with my horses and dogs in the coldest weather wearing just a polo shirt.

Thanks for all the replies guys. It’s funny how most of you mention feet, and today I noticed I felt like I was getting the start of cramp in my left foot, something I have never experienced before. It wasn’t painful, but like at the very beginning of cramp before the full spasm sets in. I hate the cold, but haven’t been too and up to now, although, I wonder how long it will be before I am walking around the house in my outdoor coat, like I did for much of last winter. X

I was only diagnosed last year so only had one winter! But realise I’m worse in the cold my leg seems to stiffen up and shake my walkings so much worse when cold it’s gonna be a long winter brrrrr​:snowflake::snowman: Emma x

I’m having a knitted wraparound skirt made, like a scarf for my thighs to wear over my usual trousers. The tops of my legs always get really cold when I’m doing the school run. Moyna - that’s interesting. I’m noticing that I feel really stiff in this cold weather, could that be spasticity? Feet, hands and even nose are the bits my hubby notices as being cold!!! Still, I prefer the cold to the heat.

Well strangely today I have one hand frels warm to touch and the other hurts like hell feels like its packed in ice and is cold to touch! !!! A

I get the feeling that there is a link of clonus coming on more in cold weather. I had clonus in ankle in March this year when it was cold. Then for my neuro appt in August - nice warm weather my examination was clear. Yesterday cold weather my feet were cold and the neuro detects clonus again in ankle.

That sounds familiar…I’ve noticed several times whilst sitting with my right leg over my left that my muscles start twitching near my ankle, making my foot visibly move. It goes on for a while. I wonder if any of this odd stuff will actually happen whilst I’m at my appointment next week?

The cold messes with me too. I find if I have gone for a bath or shower which is warm (this aggravtes my numbness and hypersensitiivty in my hands) it’s not great but then if after I step foot out in the freezing cold my hand will be so cold and painful - abnormally so, even with gloves. Spasms and stiffness tend to be a lot worse too with the cold. I woke up from mocturnal leg spasm last week monday and my leg still had stiffness and pain in it on saturday. My L foot which has been the most severly affected by numbness feels like an ice block and I can’t quite tell when I’m walking whether I’m going to fall.

Either way hot or cold I’m screwed - I think I need to be kept in a stable tempeerature bubble :slight_smile:



I don’t know whether it’s my reaction to the cold or just a coincidence, but my symptoms got a little bit worse too. apart from fatigue (it may be caused by uni workload, because of many deadlines), my legs feel weak and heavy. Every time I sit down after some walking there’s this weird feeling, which is neither pain nor stiffness, something I can’t describe. it’s the worst when I lay in bed after the whole day. a few times I had a feeling that my legs ‘weren’t listening to me’ and I was going to fall down. also, short periods of dizzines occur far more often than before, even when I sit. usually I experienced it only while walking but now it doesn’t matter what I’m doing.

I don’t know what to think about it, I simply hope it won’t get any worse anytime soon, because a) I need to do my uni coursework b) I’m going home for Christmas and I don’t want my parents to see me struggling again (last Christmas was awful for us, because it was shortly before my diagnosis)

could any of you tell me whether this exacerbation may be caused by the weather?

Alex xx