Is it right that i feel dreadful in the sun? I was in the past a real sun worshipper, been to egypt etc so not shy of the sun! Last couple of days when i in the sun everything gets worse!
The shakes get worse, i get pain in my muscles in my leg and arm and i feel generally unwell. The heat seems to excasterbate everything. This morning the shaking is making it hard to type and i feel like i’ve been sunburnt on left side everywhere when i haven’t got any colour (due to hiding in the house last few days).
Its very worrying and find myself wishing for the rain again ! How bad is that!
Any ideas on if this is normal or do i need a trip back to my GP.
Oh and i typed up my symptoms in easy reading form all ready for my neuro appt in a couple of weeks! Do i need to include these symptoms as well?
The temperature affects a lot of people - some find that the cold exacerbates their symptoms and for others it’s the heat.
Although extreme cold weather affects me, heat is far worse. But I find that it’s not the sun itself but the humidity that kills me and it’s ten times worse when I’m working so I slow down have the window and door wide open and the fan on all the time!
Wear loose, cool clothing, keep hydrated and use anything you can to stay cool such as fans etc. I’m actually a big fan of the sun and it is very good for us - the vitamin D - so I sit out it in whenever I can but when I do I dress right down and relax. Obviously be careful if you do - don’t overdo it!
Definitely add it to your list for when you see the neuro. You may also find that taking hot baths or showers temporarily makes you feel worse too?
Unfortunately in this country we do have fairly high humidity levels but a lot of people who travel to countries which have a dryer type of heat find that it doesn’t affect them as much!
The other thing I’d suggest is to keep your feet as cool as possible - for most of the year I wear flippies or sandals.
Thanks, yes bath does affect me, it feels like bad sunburn and i shake too. sun is nice but its the heat more than the sunlight!
I try to dress cooler but i wear a uniform for work and its mostly black! Also i cant wear open shoes as its not allowed but i do find my feet tingle much more when i wear trainers…hoping to find some pumps or closed toe cool shoes !
Ok, i will add these symptoms to my never ending list! lol
Gets exhausting adding all these symptoms on paper! I must look like a train wreck!
Heat affects me too - I noticed it first when I got out of the bath and my fingers were all unco-ordinated and it took me a good hour to feel like they were back to normal. Wearing boots/shoes and socks flares up the numbness and pins and needles on my foot too particulalrly on a warm day.
The heat at the moment hasn’t had a major terrible effect on me though I have been in the middle of a new bout of symptoms the last 2-3 weeks and it’s difficult to know whether the variability is heat related or would happen any way. Also helps that even though I have to dress smartish I can wear long shorts and sleevless so I push the boundaries of what we’re allowed to the max and the rooms well air conditioned. So overall I’m not actually that hot until I go outisde or on the trains - then it does get a bit uncomfortable and my leg does go numb/tingly then.
I agree with Rubina in that it must be the humidity more than the sun if closed shoes and hot trains makes things worse. I’d never thought of it like that before.
Definitely tell your GP it’s important. If you’re struggling maybe speak to your manager or occupational health team to see if there is some compromise that can be reached to get you comfortable in your environment. I’m sure they don’t want you going off sick and if wearing a little less or having a few more fans is going to make you able to work then it’s a small sacrifice.
I always feel dreadful in the heat. I am not coping at all well with it atm. All my symptoms are exacerbated. I think I need to purchase a fan! Teresa xx
Boy oh boy, MS or not this weather is certaintly exasperating something!
I onle need to get up and walk from one room to the other and I’m exhausted. As for hanging the washing out, well, I think I might give that one a miss for today. It feels as though I’m carrying an adolescent elephant on my shoulders! I feel so heavy and still with horrid tingling jumping legs also my rib pain has bumped up a level or 2 and my vision/processing has got worse over the last few days. So wether Ms or not…it is poop!!!
The one thing that really does help me is placing a cold flannel on my feet! Give it a go, hopefully it will help you too!!
Oh I totaly agree,I feel weaker,tremors,photosensitivity.
I put factor 50 + on today,I went out n watered the plants,hung washing out,walked or should I say crawled upto the school and I am burnt yet I plastered myself every 20-30 minutes.
I’m lucky that I don’t wear a uniform work but much as I’d love to go in dressed as I do at home - I can’t. I need to look professional too. That’s why I always have my flippies with me - if my feet are cool then I have a better chance of staying a bit cooler. Plus whilst I need to look professional, my bosses are pretty laid back so as long as we look presentable they’re happy boys!
Lea,
It’s definitely worth having a chat with your boss - even though you have to wear a black uniform he/she may be happy for you to wear something sleeveless or something in a lighter weight material, even if it has to be in black? Oh and definitely ask about the fans…
Reemz,
Have you thought about getting a mini travel fan…I know it’s not the same but it might just help if you’re travelling on trains and the like. Also, a pair of open shoes/sandals for travelling in - you could always change when you get into work?
Yes at home I’m in shorts and vest top of thin strappy nightie and it’s great. I leave all the doors windows open and usually its pretty ok. Portable fan is a great idea for my journeys. I’ll see if I can get one - worse thing is when I can’t get a seat the standing and the heat together is the killer and my journey in total is an hour but maybe a fan will help. I’m also going to invest in some sandals that aren’t flip flops. We are allowed to wear sandals as long as I still look smart so I’ll maybe go shopping for some.
Apart from the usual lethargy that most of us get during hot weather, I don’t feel any worse for it, at the moment. I am hoping the heat won’t bring any of my symptoms back and it is worrying me a bit. I have just cut the grass this evening and the sun burnt my forehead! Great look
I am really wanting to book a holiday for me and the boys this summer because we have all been through so much and I am really just wanting to drop everything and run away and forget about my problems (and possible MS diagnosis). We all need a break so much, but I am worried about how I will cope with the heat abroad and I am on my own with two boys.
I have been looking up holidays on so many sites and very close to booking but the worry and uncertainty is preventing me at the moment. I wonder if I should make sure it’s disabled friendly just in case the heat does affect me and exacerbate symptoms. The last thing I want is to be stuck in a foreign country on my own with two kids to look after …and a relapse! …but…I can’t let things get in the way of life…it does go on. It has to.
Going on what I’ve read on this site, a lot of people have found that a dryer heat is better for them as opposed to the humidity that we tend to have in this country. So if you’ve already decided on which country then maybe ask on Everyday Living to see what others have experienced?
Checking whether the hotel etc is disabled friendly can’t hurt and it may also be prudent to find out what your chosen location is like too - whether it’s hilly. Years ago we went to Corfu - and not for the first time - but that particular time we chose a different part of the island. Getting down to the beach (which was rocky) meant going down a very long and sharp incline. Getting back up it was even harder and that was prior to my being dx with ms and I was a lot younger! So as beautiful as the place was the beach area was definitely not disabled friendly!
Thanks Debbie. I don’t mind where I go as long as it’s a bargain lol…and it’s hot!
Yes, it definitely seems to be a different kind of heat when abroad. I loved Majorca because it was hot but not stifling. We (when I was still with my husband) went to Cyrpus one year in a heat wave, my god, it was awful. I remember we would grab a kid each and leg it from our air conditioned room to the car as fast as we could because outside felt like being in a 200degree oven! Husband would go start the car before and whack on the air con ready for our escape. We couldn’t walk on the sand on the beach because it scorched our feet and even in flipflops or sandals the hot sand would flick up as we walked and burn us. Never again. Was so expenisve too.
Went to Spain a couple of years ago, that was nice but we went in November so it wasn’t boiling hot. Warm during the day but cold at night.
I fancy the Canaries next.
Will definitely look out for a flat location, near the beach and shops and possibly medical centre!
Thanks Debbie. I don’t mind where I go as long as it’s a bargain lol…and it’s hot!
Yes, it definitely seems to be a different kind of heat when abroad. I loved Majorca because it was hot but not stifling. We (when I was still with my husband) went to Cyrpus one year in a heat wave, my god, it was awful. I remember we would grab a kid each and leg it from our air conditioned room to the car as fast as we could because outside felt like being in a 200degree oven! Husband would go start the car before and whack on the air con ready for our escape. We couldn’t walk on the sand on the beach because it scorched our feet and even in flipflops or sandals the hot sand would flick up as we walked and burn us. Never again. Was so expenisve too.
Went to Spain a couple of years ago, that was nice but we went in November so it wasn’t boiling hot. Warm during the day but cold at night.
I fancy the Canaries next.
Will definitely look out for a flat location, near the beach and shops and possibly medical centre!
I totally agree MNM - life without a few risks would definitely be boring…lol…
Maybe the Canaries is a good option then. How about Tenerife? I went there a couple of times and it was lovely back then. A friend of mine regularly goes and she finds the heat just about right. Another friend has a house in mainland Spain and she said the heat in the height of the summer is extremely hot most of the time - she doesn’t have ms.
I went to Crete one year and they had a heatwave the whole duration of our stay, which was 3 weeks - a special offer when I simply could not pass up LOL (I like a bargain too!!). I’d definitely go back there though, we stayed in a small place (the name of which escapes me now) and it was beautiful.
Have you got an EHIC card (The European Health Insurance card). It’s free and worth applying for. My card came through real quickly. The nhs website below explains it all and has a list of countries that it applies too as well.
