Do sunny/bright days make your fatigue worse?

Everyday living
1

Morning all

I normally get a bad bout of MS symptoms in April / May, usually around the time that the weather improves and gets brighter. Previous years, I’ve taken a week off work to deal with the fatigue, which helps.

This year, the weather has been so cr@ppy, and I didn’t get the flare up (I was more or less waiting for it to happen). I’ve been fine, not better/worse than rest of the year.

The last 2 days we’ve had gorgeous sunny clear skies. I don’t go outside much during the day anyway, as I work to 5.30 from my home office. But, my husband and I might take a short stroll on the beach after 6pm. (Very short… I am a lazy lump!). It’s not as bright then, and it’s quite cool, so I am not overheating. Yesterday morning and this morning, the fatigue has been awful. I dragged myself out of bed. My arms feel heavy typing. On the other hand, clear frosty winter days make me feel better.

So, I guess I am asking, does the bright sun make you feel worse this time of year? Even if you aren’t necessarily out in it? Is that even possible- is there a difference between winter and summer sunlight?

I love the sunny weather, but it makes me reluctant to go out in it.

(I do realise that the “summer” will probably end today, so I won’t have to worry about it :smiley: )

2

hiya

i seemed to have a dodgy thermostat-have done for 7+yrs, i can be purple,frozen to the touch but i still feel hot. i have learnt over the years to dress according to the weather and sensibly instead of how i think i am feeling. so in warm/hot weather i still feel hot,as i do when i am really cold. confused?! me too!

so, i think the sun makes me feel better simply cos it feels right to be warm when its sunny! i could go round in circles trying to find an explaination but easier just to accept this is what happens for me and use my energy to eat mango!

have a good day

ellie x

3

Hi,

Well, there’s definitely a difference for me, but it’s completely the other way round! I’m much better when there’s a bit of sunshine, and worst on cold, damp days. So the prolonged cold Spring has not helped me one bit.

I also notice that cramps - which for me are mainly a night-time thing - are not just limited to bed, but in fact start once it gets dark, regardless whether I’m in bed or not. So in midwinter, when it’s dark at teatime, I can start cramping as early as that. Once we get the lighter evenings back, I have much longer cramp-free evenings.

When I think back over relapses and probable relapses (all the years I didn’t know I had MS), almost all of them have been January/February time. I don’t want to tempt fate, but I’m not sure I’ve ever had a Summer one.

So I tend to be much more confident in Summer, but apprehensive about the onset of Winter, as I think a relapse is going to happen.

Tina

4

Thanks for the replies.

Tina- what you are saying about being apprehensive about winter, that is how I feel from end of March onwards. I had my worst ever relapse in April 2010, which lead to my dx. 2010 was a hot sunny summer, I was in bits.

But most stuff I read encourages us to go out into sun, get our Vit D fix etc, so I wonder if I am a bit barmy thinking that I feel worse?

5

No you’re not barmy…I’m much much better in the winter…my fatigue goes into overdrive which then affects all my other symptoms, when the temperature rises. I don’t go out in the sun anymore and I used to able to bake in it for hours…in fact we used to go to Greece every year…no more. All of my relapses have been in the summer months…last year it was August. I’m afraid I long for winter and the cold, especially the dark nights and am willing the next four months away !!

6

Hi, For me, it’s heat related rather than sunshine. Once my body gets above a certain temperature, I’m basically rendered useless. It doesn’t matter if it’s a warm day, or if I’ve had a large meal, hot drink or wearing a jumper when it’s cold. Today it’s raining and miserable outside and it’s chilly inside, but the heating is only on 19C and I’m wearing light clothes. If I dress warmer, I’ll get too hot and will suffer for it, but it’s half term and my two boys are at home so I need to be able to function. Funnily enough, someone sent in a letter to the latest New Pathways about heat and fatigue which was interesting. They’d even recorded their temperature at various times. Heather

7

Hi Heather Google uhthoffs …my nurse recently told me about it…and my symptoms sound very much the same. Xx

8

It’s strange, isn’t it? It really is true that everyone’s different.

I’ve never really had this worsening of symptoms in the heat (Uhthoff’s phenomenon) that’s said to be characteristic of the disease.

Just before I was diagnosed, I did find buzzing sensations were worse in a hot bath, but at the time, I didn’t even think the problem was with me! I thought there was some sort of vibration problem with the hot-water pump, and that somehow it was magnified through water, which was why I mainly noticed it in the bath (also the bath is probably the closest place to the pump, which again, seemed logical).

But I find the increased buzzing is only very negligible, and more than made up for by a hot soak easing the cramps and aches and pains, so I still have baths just about as hot as I can stand.

The only thing I’ve noticed is I do sweat a lot, even when it’s not hot, and after fairly modest exertion. It hasn’t been hot really so far this year, has it? Yet if I go out for a walk, I come home sometimes literally dripping with sweat. I’m scared to wear light-coloured cotton slacks out and about, in case they get sweat-stained, and everyone thinks I’ve wet myself. Initially, I worried maybe I WAS wetting myself (not gallons, but sort of stress incontinence), but I’m pretty sure it’s not, as it’s colourless and virtually odourless, and I feel sweat running down my back, too, so it’s not just the lower half.

I remember, years ago, staying at Mum’s, whilst doing a course in London. I had to take the underground home each evening. Now the underground, of course, IS hot, even in Winter (this was February). But when I got home, I was absolutely bathed in sweat from head to foot. I remember showing Mum my soaking back, and she touched it, and exclaimed: “Oh, there’s something the matter with you!”

I snapped, rather irritably: “Of course there isn’t, it’s really hot in there!” (Mum hasn’t used rush hour underground in years).

But mums are always right. Sadly, yes, there was something the matter with me - and always will be. :frowning:

Tina

x

9

Oh, Tina,everything you said echoes with me…the slightest little thing leaves me, literally, bathed in sweat, even my arms and legs have a sheen in them. My hair will actually be wet and it drips into my eyes. I rarely have a bath nowadays and even a luke warm shower takes me an hour to recover from. I have just bought a fab little fan which I have to sit in front of until I recover. Even eating hot food brings on an episode. And an episode makes all the other symptoms, especially the vertigo, temporarily worse. And the underground, well that completely felled me last year. Pre-diagnosis and I had absolutely no idea what was going on…we were down there between December and May so cold everywhere but I just couldn’t cope with the heat down on the tube. I was drenched. MrH thought I was having some reaction to the tube as I really don’t like them but with hindsight, I now know. Xx

10

Hi Coughdrops,we are all so different that the weather that suits you will cripple some of the others.I suppose the weather in these glorious Isles gives everybody a crack of the whip.It is the humidity which knackers me up and because it can rise by 20-30% in a few hours I don’t get the chance to aclimatize.The temperature usually takes a few days to rise by 10-15 degrees so my stupid body has a chance to adjust.

Your aversion to sunlight sounds a bit like a Lupus symptom,but it is 'sposed to help us produce Vitamin D

I keep the humidity in my flat below 30% with three dehumidifiers and I’ll be passing the hat round for the electric bill a bit later.I used to be like a ‘Geordie Eskimo’ and wasn’t bothered by the cold at all,but 'cos of my total immobility the circulation in my legs is poo and my permanently painful feet get worse as they get colder.

Something strange but true is that high pressure makes me like a poorly kitten…Cute but really floppy.My home made reason for this is that I have a major stenosis in my right jugular vein and the pressure increases the effects of this.Not the time or place to get into the CCSVI debate/unholy row ,suffice to say…“I’m a believer.”

H,thank your MS nurse.That’s a bad thing in the tube.Couldn’t have been the smell from the locals could it? Oh,you’re not casting spells about our paltry bit of summer are you?

Enough already,

Wb

ps Immersion in increasingly cooler baths is a good way of lowering your core temperature

11

Hi, I’m not saying your imagining it (far from it) as heat also wipes me out & I have Uthoffs… but I also think that on a chilly grey day I’m quite happy pottering around at home & taking frequent rests, but when it’s bright & sunny I feel as if I should be ‘out there’ enjoying the good weather… and then I’m made far more aware of my limitations.

I think really it’s a combo of things… warm weather makes symptoms worse AND that heightened awareness of how MS affects us.

One more thing, since I’ve had MS I have also suffered from hay fever (never had it before). Hay fever affects the immune system so it’s bound to impact on MS symptoms.

Have you by any chance noticed that you are sneezing, tickle in throat or eyes are itching? That could be the answer.

Pat x

12

Sorry to have dragged this thread a bit off topic…

But strange thing, MrsH, is I don’t feel bad with mine. I mean, it’s mainly the embarrassment factor of worrying that I’m walking around with visible damp patches everywhere. Other than sweating a lot, I’m not aware of feeling generally worse. I just find it odd to be wringing wet when it’s not an especially warm day, and I didn’t think I’d even been working very hard. Then again, everything’s hard work with MS, so perhaps I’m expending more effort than I give myself credit for. It’s really weird to be mopping my brow, after just a walk. I do walk as briskly as I still can - I don’t hang about much. But it’s definitely still walking, not jogging/running.

T.

x

13

It’s awful…I too have a fear of damp patches !! But it soaks my hair and drips down my face, so I just hope people think I have a fever !! I’ve just had boiled tomatoes on pitta for lunch and the effort of just getting a pan out, standing in front of the cooker and eating it, means that I now need a shower. I’m sticky and my hair is soaked through. And wobbles…I am eternally grateful for a magnifico nurse…so much so, that I’ve bought her an MS bracelet to say ta, the next time I see her. Xx

14

Yes, worse in hot weather, and my eyes are very sensitive to bright light.- which I think is linked to MS. Wear sunglassess in the car all year round!

This weather is perfect, not to hot, not to cold. Still wearing 3 layers and sheepskin boots in the house, but no gloves - hurrah!

Jen x

15

It’s as some folk have said, our thermostats don’t work properly! I never have a bath anymore, partly because I’d struggle badly trying to get out of it, but also because I’d fill it to what temp felt good at that time then after a wee while it would be too hot, then too cold!, so I stick to showers now, so much easier to regulate!

Jools

X

16

Thanks everyone.

It’s dull and wet today here, so feeling much happier. Now that I’ve thought about it a bit more, and read your replies, it could be more to do with humidity and high pressure. I don’t necessarily feel too hot, but when I got up this morning I felt better before I’d even opened blinds, so had no idea what the weather was looking like outside. Maybe the pressure and humidity dropped.

Or maybe I am imagining the lot :stuck_out_tongue:

Either way, thanks, it’s “good” to hear it’s not just me!

17

I too am the opposite. Cold makes me hurt, sun and warm and I feel quite good so I try to get out in it as much as I can. I always feel like I get a bum deal though…it never lasts long enough for me :((

18

I have just crawled in from the front… My legs felt like they had a ton of lead attached. I had to come through the house on my hands and knees. If I have bath or shower that’s a tad too warm I’m the same. So for me it’s the cooler weather… ( although I hate the cold)… At least the lead weights are gone. XX

19

Oh my goodness !!!.. Sorry mods, I hit post and nothing seemed to happen

20

I’m with you, Tilly. Beautiful sunny day here today and I’m in big trouble. Symptoms in overdrive and I’m indoors in front of an air conditioning unit feeling really, very ill. Hate, hate it. Sorry but I’m longing for winter. Xx