Symptoms worse in Winter. Any ideas?

[CFSNZ]

I have noticed a pattern in my CFS where my symptoms get worse in Winter, and better in summer. It's got to a point where the season is actually the biggest driver of my CFS symptoms! Bigger than sleep, medication, stress levels (though perhaps not viruses, now I think about it).

So I would be very appreciative of anybody's thoughts on three things:

1. Is this 'normal' in CFS?
2. What might be causing it?
3. What can I do about it?

Thanks guys. I've put some more details below for anyone who's interested:

Symptoms that get worse

• Low blood pressure / pounding heart on standing
• Brain fog
• Post-exertional fatigue
• Sensitivities (light, sound, chemical)

Causes I can rule out

• Vitamin D - you could say that in Winter, you get less sun and therefore less vitamin D, which may be associated with a relapse. However, I supplement Vitamin D all year around
• Viral - more viruses go around in Winter, but my relapse occurs whether or not I'm experiencing viral symptoms
• Depression - many people feel more depressed in Winter. However, my symptoms are equally bad on days when my mood is good or bad

 

[ukxmrv]

I only get worse in winter if I get hit by a bad lot of bugs so have a different pattern. The disease started as an acute viral one in the summer for me. Previously I was well. Diagnosed with ME. In the winter I can actually feel a little better in cold crisp weather.
Have you had your d levels tested?
What happens to your heart rate and blood pressure?

 

[Little Bluestem]

Perhaps you use more energy creating body heat to keep warm, leaving less energy for other things.

 

[sianrecovery]

Me too - I think its partly environmental, more time indoors with all the dusts, molds etc - partly because bugs, whether or not you know you have them, hate heat - viruses and some protozoa anyway.

 

[maryb]

I am definitely worse in winter too, maybe a combination of stuff - living in the UK we tend to stay indoors a lot as the weather is so bad, as Sian says, so exposed to more mold, other environmental toxins.
I also think its related to vit D - my opinion is its something about the way the sun converts it to what taking it orally does in the body. Those are the only 2 feasible reasons for me.
Like you I don't have mood problems and viral symptoms/relapses come and go whether its summer or winter.

 

[Plum]

Do you alter yr vitamin D intake with the season? i.e. less in summer and more in winter? Maybe you are still deficient? Only an idea.

I too get worse in winter. In fact this winter I crash at the start of winter. Felt awful. Shorter days and evening starting at 4pm are not good for me. I grew up in the southern hemisphere and am used to much milder winters than I have now. I do also have SAD which doesn't help.
I don't know what to do about it - sorry But I have tried to go with it. I do like the idea about body trying to warm up so using up precious energy. Also being indoors so much more can't be good. I also hate the heating being on - makes me feel stuffy.
For me it's fatigue, brain fog and PEM that gets worse. It has gotten to a point where I've contemplated looking into living somewhere else in the world just to feel better and not have such a drastic winter - how to make that possible is beyond me!
Maybe eating as well as you can, resting and trying to spend a little time outdoors each day may help?

 

[soxfan]

I also seem to feel worse in the winter. I actually had a pretty good summer and fall but usually by January I am feeling much worse. My PEM also tends to get worse from January until May. These past few months have been particularly bad for me. My vitamin D levels are great so I don't think it is that. I live in the Northeast too but we have recently purchased a house in NC and hope to move by fall. I am hoping being able to get outside more year round will help me.

I became sick in the fall but don't think that has anything to do with this. I am also never and I mean never sick with anything so I don't think it has to do with virus's for me at least.
I know I push myself to the limits just about everyday but I seem to be able to recover better from that in the warmer and sunnier months...

 

[Valentijn]

Being cold can have a huge impact. Your body has to work harder to produce more heat, which might mean you're getting worn out constantly. Shivering uses muscles, which can cause PEM just as much as any deliberate muscle use.

This past winter I've been very careful about staying warm enough - I use an electric throw when sitting on the couch if I'm even slightly chilled. It's also a life-saver when coming inside after a cold outing.

 

[vamah]

Being cold can have a huge impact. Your body has to work harder to produce more heat, which might mean you're getting worn out constantly. Shivering uses muscles, which can cause PEM just as much as any deliberate muscle use.

That's interesting, I never thought about that and I absolutely feel worse in the winter.

 

[maryb]

I'm not able to tolerate vit d orally but try to sit out in any little bit of sunshine we have.
I had a month away in the sunshine recently, but due to not being able to sleep properly because of the noise from neighbouring rooms/apartments - just felt it wasn't a good enough trial. I was looking to spend more winter months away if I'd felt better - but getting a quiet place to suit my noise intolerance will be hard.

 

[justy]

Yes i always feel worse from autumn onwards - like you not sure if its more flus and bugs around, less sunlight the cold or what. I also wonder for me if molds play a part - it's very damp where i live and i always feel a bit better at the beach or in sunny warm climes.

I have a month away in southern spain booked for next winter - to see if it helps and if it stops me from getting lung infections etc which always brin gme down, but like you Mary i am worried about noise levels. I live currently in the middle of no where - very quiet and i find it disrupts me sleeping very badly to be somewhere noisy. Where did you go for your sunshine?

I don't know what my vit D levels are, but supplementing a few years ago with 2,000iu a day of D3 helped brain fog a lot.

All the best.
Justy

 

[Plum]

Noise is always a problem on holiday. We often stay in campsites and usually don't get too disturbed. I also seem to sleep much better outdoors than in so I just kinda passout. I am very sensitive to noise when at home though. Need somewhere really peaceful and quiet to live!

 

[heapsreal]

i was just going to say its your imagination and that u have to think mpositive about being warm, graded exercise can also fix this as well as cbt, once completed the course u can throw away all your blankets , jackets etc

 

[sianrecovery]

they don't make an emoticon that is offering the hand sign I'm thinking about when you say that Heaps...maybe they should....

 

[caledonia]

How about an increase in chemical/toxicity load in the winter when the house is closed up and the furnace is running?

It might be worthwhile to get your furnace checked out and your ducts cleaned. When I moved into this house, we removed some old carpet and I got a sinus infection from all dust it stirred up (this was pre-CFS). We got the ducts cleaned and and coal dust from decades ago came out!

Do other people/pets suffer winter type symptoms or is it just you? Do you have a carbon monoxide meter? The symptoms that you list are ME/CFS symptoms, but they're also similar to low level carbon monoxide exposure.

 

[SilverbladeTE]

also get much worse in WInter
it feels to me, that it's not purely the cold, it is when it it is cold AND damp it is worse
i.e. a hard frost is bad
but a stormy miserable day just above freezing is much worse even though I am in the house and cannot see the weather (since watching screen in dark room)
air pressure perhaps is part of this? (lower on stormy days)

 

[Plum]

Yeah the damp is a problem for me too. I hadn't thought of it in relation to winter but hot humid summer days are hell for me too! Oh what joy ME is!

 

[Creekee]

Lots of us have to increase thyroid dose in winter months. Wonder if it's possible to need none in warm weather but need a little in cold weather?

 

[Xandoff]

If our bodies are not able to eliminate enough bacteria, winter certainly would stress that. Winter is terrible for me. Summer is not much better but is better. When you have a flu or cold, the worse the weather the worse you feel. It's the same with our illness. The body is just further stressed when it is cold. A lot like an old car with out enough battery power to turn the engine over. Circulation is an issue as well.

 

[justy]

I think checking for carbon monoxide poisening is a good idea for anyone with an unexplained chronic illness. I bought a CM alarm for £15 and stuck it near my boiler and then near my log burner, then near the gas cooker - but all was fine. Which is good because it means we are not all being poisened but bad because it leaves me with M.E rather than a simple fix.

All the best,
Justy.