Last reply 8 months ago
Heat effecting leisure time

Hi everyone I was diagnosed August 2016 last year.I went blind in my right eye spent 8 days in hospital when neurologist confirmed it was ms after mri scans 😦 aches pains dizziness fatigue even tho I’m very fit due to gym and sports…I can deal with all that but when I finally was feeling OK to take part in a match 2 mins into the game I couldn’t see a thing and it keeps happening wen I came off I could see again wen I cooled down anybody on here that had similar experience and over came it and continues to play I’m desperate to keep playing the sport I love please help cheers πŸ˜†

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stumbler
8 months ago

@maurice , it’s called Uhthoff’s Phenomenon (https://www.mstrust.org.uk/a-z/uhthoffs-phenomenon).

As your core body temperature increases, so your symptoms play up. So, it’s important to keep your body temperature stable. Now, that doesn’t exactly fit with playing sports, but look into cooling vests and see if that is a feasible option.


maurice
8 months ago

Thank you for the advice much appreciated πŸ™‹


billybilo
8 months ago

I also had Uhthoff for many months after ON relapse. I couldn’t ride a bike as every time after 10 mins of riding, my seeing in eye affected by ON was horrible (mostly blurry). It subsided after approx 5 months.


souljackerfool
8 months ago

Hi Maurice , I can relate to your issues , if I go hiking then my left eye ( 70% sight) throws a wobbly and I have to rest for a while. I now try more a more sedate pace or hike on a route with plenty of watering holes . I hope you find a solution . If I do I will of course post it on here .
Take care , Tom


bonang1975
8 months ago

Yeah deffinatelly look into the cooling vest I wear one to work and it seems to help as the temp increases.


noelie
8 months ago

Everyone is different, I hope you recover and can carry on with your activities.

My case is probably not what you want to hear, but I think it’s important to be aware that managing MS means we sometimes have to make some sacrifice to protect our future. We need to look long term.

Diagnosed Jun 2016. it’s my left leg that is mainly affected along with the left arm, they just stop responding at the slightest raise in body temperature, and I had to say bye-bye (amongst other things) to Step aerobic about 3 years ago, an activity I absolutely adored. The symptomps have been getting worse overtime, maybe because I didn’t understand MS and kept pushing the limits and didn’t give my body a chance to rest and recover properly (or maybe it’s just tough luck and that’s the way it is, i’ll never know). So far, cooling vests haven’t really worked for me.

I now stick to yoga and pilates, it’s not enough to keep my fitness at the level it once was, my strength and cardio are deteriorating, I’ve been meditating to come to terms with it and the diagnosis and that’s helping. Currently struggling with constant fatigue but once i get better, because I WILL get better, I plan to go back to body pump for strenght and swimming as the water cools me down enough to allow for a bit of cardio.

Is there a different sport you could try that would be less taxing on you?

Take care of yourself


noelie
8 months ago

(I am not knocking out cooling vests, by all means, try them, but don’t expect miracles)


sciencegeek
8 months ago

After I had ON, it took about 8 months before it stopped flaring up with increase in body heat. However, as it only affected one eye for me, I could still keep running even when my eyesight was bad.

You may just have to find a new sport for a few months, and keep your fingers crossed for continued recovery. Full recovery can take as much as a year.


maurice
8 months ago

Thanks very much guys much appreciated I’m going to give it on last go and if it comes back so be it at least I’ve given it a go

Thanks again

Maurice 😊


kzak76
8 months ago

M- It looks like you got lots of good advice already. My suggestions are: don’t feel tied to your current medication (copaxone?) There may be something else that will work better for you going forward. Also, if you can find a physical therapist who knows MS it can really help. I got a recommendation from my Neuro and it was awesome. My PT taught me ways to maintain and regain strength while being very knowledgeable about what can help/hurt MS. Good luck!

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