winters coming ...

[Ralph1]

I've lived with M.E for more than 30 years and throughout this time have tried many therapies and supplements etc with limited results.

I'm posting here as I'm seeking some advice:
My symptoms have always got substantially worse in the winter (for reference, I live in London, England).
There's a point each autumn (which varies sometime between October & November) when as though a switch has been flicked I will wake up feeling heavy limbed and over- fatigued and that's it I know from then until next April/May I will be running on M.E time, everything will be a struggle.

As I'm getting older this pattern is become more pronounced and like the characters in Game of Thrones I dread the onset of winter.

I'm curious, do other people experience this and if so what do you do about it?

Is it possible that in addition to M.E I'm experiencing S.A.D ?
I've tried using daylight bulbs, 5htp, St. John's Wort, L theanine, exercise, and so on but the pattern remains the same.
This winter I'm thinking about taking Prozac or similar. In the past I've always tended to avoid drugs like these but as I know the next 6 months are going to be hard work I'm open to anything.

Your thoughts/ advice appreciated. Thanks.

 

[Skycloud]

Just one thought - have you had your vitamin D levels checked? Low vitamin D can cause fatigue

 

[svetoslav80]

I fall into depression every winter, but intend to get by without meds. Good that ours are only 3 months.

 

[Wishful]

Winter doesn't increase or decrease my symptoms, and Alberta has long winters, so my take is that you're suffering from something in addition to ME/CFS. Maybe look for a SAD forum?

 

[TigerLilea]

If anything, I feel a bit better in the colder winter months. The heat of summer really wipes me out.

 

[unto]

I've lived with M.E for more than 30 years and throughout this time have tried many therapies and supplements etc with limited results.

I'm posting here as I'm seeking some advice:
My symptoms have always got substantially worse in the winter (for reference, I live in London, England).
There's a point each autumn (which varies sometime between October & November) when as though a switch has been flicked I will wake up feeling heavy limbed and over- fatigued and that's it I know from then until next April/May I will be running on M.E time, everything will be a struggle.

As I'm getting older this pattern is become more pronounced and like the characters in Game of Thrones I dread the onset of winter.

I'm curious, do other people experience this and if so what do you do about it?

Is it possible that in addition to M.E I'm experiencing S.A.D ?
I've tried using daylight bulbs, 5htp, St. John's Wort, L theanine, exercise, and so on but the pattern remains the same.
This winter I'm thinking about taking Prozac or similar. In the past I've always tended to avoid drugs like these but as I know the next 6 months are going to be hard work I'm open to anything.

Your thoughts/ advice appreciated. Thanks.

.I too worse from October to April......;
but do you increase frequency/intensity, of other symptoms or worsen only fatigue?

 

[Wishful]

I hate the heat too, but I don't think it worsens my symptoms, it's just one more burden on trying to do anything. In the context of this forum, I'd use 'feeling better or worse' to mean an actual change in ME/CFS severity.

 

[arewenearlythereyet]

I used to think that winter was a lot worse. I'm the type that gets infections and can't shake them , so I get all,sorts of lurgies which knock me sideways at winter time. The summer months have always been better but this year it's been awful, which I think is due to losing my job and as a consequence not spending the day time in an air conditioned office. I feel worse when it's hottest now. I guess we can't win.

 

[dadouv47]

I don't think there's a clear pattern about weather and ME. Some suffer more during the winter, others during the summer, while some feel better with dry or humid climate. In general I think extreme weather (too hot or too cold) are not good.
Like you, I feel way worse during the winter (I also feel very bad during weather changes and don't react well to any kind of extreme climate, too hot is not good as well).
I come from Belgium but decided to live in Brazil in part because of suffering too much during belgian's winter. Even brazilian winter is not good for me.

I don't know if u have respiratory problems (rhinitis etc...) like I do. If you do, having an air humidifier can help big time during the winter. I use one in my room all the time in Belgium (heating the house makes it very dry and bad for respiratory issues).
From supplements, it's hard to tell. Melatonin can help a little bit (at least it helped me once, but depends if your levels are normal).

 

[TreePerson]

Yes I have the same thing. I am ill all year but usually lose at least 30% of my energy capacity in Winter. In addition to this I also feel properly ill more of the time with the classic flu like sensations. It starts and stops in those months exactly as you describe. I live not far from London.

 

[gregh286]

I've lived with M.E for more than 30 years and throughout this time have tried many therapies and supplements etc with limited results.

I'm posting here as I'm seeking some advice:
My symptoms have always got substantially worse in the winter (for reference, I live in London, England).
There's a point each autumn (which varies sometime between October & November) when as though a switch has been flicked I will wake up feeling heavy limbed and over- fatigued and that's it I know from then until next April/May I will be running on M.E time, everything will be a struggle.

As I'm getting older this pattern is become more pronounced and like the characters in Game of Thrones I dread the onset of winter.

I'm curious, do other people experience this and if so what do you do about it?

Is it possible that in addition to M.E I'm experiencing S.A.D ?
I've tried using daylight bulbs, 5htp, St. John's Wort, L theanine, exercise, and so on but the pattern remains the same.
This winter I'm thinking about taking Prozac or similar. In the past I've always tended to avoid drugs like these but as I know the next 6 months are going to be hard work I'm open to anything.

Your thoughts/ advice appreciated. Thanks.

Same. I put it down to vasoconstriction in colder weather. I always do better in heat. Endothelial cells not perfect in cfs.

 

[Ralph1]

Yes I also think that the symptoms are more due to vasoconstriction than SAD and a Dr did once suggest the same. The body, weakened or already burdened by M.E struggles to maintain normal temperature once the temperature drops as the seasons change. Hence my feeling of a switch being switched.
However the term vasoconstriction and what I've read up on it doesn't quite cover the depth of the malaise that comes in with it. Vasoconstriction describes increase in blood pressure but doesn't describe the heaviness of limbs, inability to get out of bed and stay active and the increase in fatigue after any physical activity and general rough disordered sensations that come upon me in the winter.

 

[TreePerson]

Yes I also think that the symptoms are more due to vasoconstriction than SAD and a Dr did once suggest the same. The body, weakened or already burdened by M.E struggles to maintain normal temperature once the temperature drops as the seasons change. Hence my feeling of a switch being switched.
However the term vasoconstriction and what I've read up on it doesn't quite cover the depth of the malaise that comes in with it. Vasoconstriction describes increase in blood pressure but doesn't describe the heaviness of limbs, inability to get out of bed and stay active and the increase in fatigue after any physical activity and general rough disordered sensations that come upon me in the winter.

I agree. I think there is some additional immune disturbance in winter. Maybe due to increase in viruses doing the rounds. Or maybe the immune system is affected by hormonal changes brought on by colder weather and lower of daylight. Maybe people generally hibernate a little bit in winter and this exacerbates the illness - which would be interesting given Naviaux's theory.

 

[gregh286]

Yes I also think that the symptoms are more due to vasoconstriction than SAD and a Dr did once suggest the same. The body, weakened or already burdened by M.E struggles to maintain normal temperature once the temperature drops as the seasons change. Hence my feeling of a switch being switched.
However the term vasoconstriction and what I've read up on it doesn't quite cover the depth of the malaise that comes in with it. Vasoconstriction describes increase in blood pressure but doesn't describe the heaviness of limbs, inability to get out of bed and stay active and the increase in fatigue after any physical activity and general rough disordered sensations that come upon me in the winter.

I think maybe i coined it wrong. Cells stiffen in cfs and prehaps cold weather they stiffen more....combined with thicker blood and mild increase in constriction.

 

[Ralph1]

We do have a time change but thats not the trigger for me. Seems more connected with cold damp and reduced daylight, all 3.

 

[Mrs Sowester]

I've been taking vitamin D3 and finding that helps a little.
Have you tried one of those phone aps that links symptoms with the weather or air pressure?
My daughter has found a direct correlation between headaches and low air pressure. She finds it reassuring to know its the weather and not the onset of a catastrophic flare-up.

 

[arewenearlythereyet]

I've been wondering if this is mainly about energy expenditure to maintain body temperature (thermoregulation). I think maintaining body temperature can use up to 80% of your food energy or something of that sort.

So if we are pacing nicely and the environmental temperature suddenly changes by say 5 or 10 degrees C, this could disrupt normal pacing more dramatically than if the temperature changed gradually over weeks and months.

There would also be a comfort threshold we have adapted to based on how long we have been exposed to a certain temperature using our brown fat deposits etc. I'm pretty certain my optimal temperature range is between 20 and 21 deg C.

I think the variance between us would depend upon how you have adapted to the environmental temperature and by what degree it changes during season change. This would mean that the further you were away from the equator the more extreme the change could be (bit of a generalisation). Variation might also account for how efficient your heating or air conditioning was at maintaining your desired temperature and the duration of exposure to the extreme temperature ( e.g me spending all day in a non air conditioned room in the summer as opposed to only the evenings).

I'm sure this must of been discussed previously

 

[Orla]

I tend to be quite a bit worse in the winter. It is not SAD for me. I don't know the cause of this. I do feel better in dry weather (even in winter a dry sunny day is better than a wet, overcast, one). We have had a very wet summer here (Ireland) so I didn't improve as much this summer as I normally would.

 

[Marc_NL]

Have you tried one of those phone aps that links symptoms with the weather or air pressure?

Can you recommend an app in particular, if I do a search do all seem to headache / migraine related.

 

[Mrs Sowester]

Can you recommend an app in particular, if I do a search do all seem to headache / migraine related.

I'm waiting for my daughter to reply... but in the meantime I think she uses a headache app...

She says 'Cloudy with a Hint of Pain' is the project, umotif is the app.
She uninstalled it recently because it needed to use her location which drained her phone battery.