How Do You Handle Autumn?

October 15, 2013

Jody Smith explains how autumn sends her body into hibernation mode, and it’s time to slow down – or else.

pixabay-tree
I read recently that the term “autumn” is predominantly used in the U.K. “Fall” is more commonly used in the U.S. I’m Canadian, though, so I guess I can use either one. And I choose “autumn” simply because it causes less confusion. It always means the season.
 
Added to that, “fall” can also mean what happens to me in the autumn. Everything drops for me as summer wanes. 
 
Even though this has been the case for about two decades, this fall or crash catches me off guard every autumn. I think that’s because the weather is still deceptively full-on summer, and my deterioration starts very gradually. I might wonder at first if I’ve got a flu bug. I might chalk it up to having been a little busier than usual.
 
But every year around the end of August, my body starts telling me that it’s going into its own unique hibernation mode, and it’s time to slow down for my own good – or else.
 
I’m not sure what causes this shift downward at the end of each summer. My guess is that it has to do with the shorter daylight hours. I suppose it could be some type of seasonal allergy, though I don’t know of any that I’m subject to. Perhaps the trees are doing something different … I don’t know.
 
I just know I start to need naps again. I start to experience a very subtle but pervasive sensation of an inner vibration, I don’t feel quite solid, I’m not quite steady anymore. My stamina and brain power shrinks. And I am far more prone to joint and muscle problems.
 
Mind you, in recent years, even the lows that come with autumn are better than my “best” used to be. But after feeling pretty darned good all summer, it is a jolt and a disappointment as I must begin to settle once again – in every discouraging sense of the word. Because each summer I am lulled into a feeling of security … a belief that I will not lose this again come autumn.
 
But inevitably, as the weather begins to cool, I find myself at constant risk of tendinitis, pain and inflammation, triggered by the smallest of slip-ups. Last year, I lost the use of my left knee after I switched from the sandals I’d worn all summer to a new pair of running shoes.
 
This season’s change with its cooler temperatures also means that I can never set the thermostat at an economical level. Anything below about 72 degrees F sets me up for sore arms, hands and feet for some reason. If I don’t protect myself from this adequately, I can end up crippled, with arms and hands useless. I have spent months in more than one autumn season having to type one-handed.
 
So an extra shirt or a sweater goes on and off, on and off, all day while the temperatures do their crazy ups and downs, until autumn finally takes over, and I can start dressing in layers and keeping them on. Already this year I have been given painful reminders that I can lose the use of my hands and arms, or find myself getting up in the morning unable to walk, if I don’t take precautions like a little old lady.
 
At 58, I am on the other side of “young” but – come on. This started when I was in my thirties.
 
As we all know, this condition is noted for being hard to pin down, and shows itself differently in each of us.
 
My 23-year-old son, Jesse, who has had ME/CFS for seven years, breathes a sigh of relief when summer heat is gone. He thrives (if that’s the term to use for someone languishing with ME/CFS) on cooler temperatures. Jesse is the type of guy who sleeps with his window open in the winter time, and is liable to wear shorts in the house year-round.
 
After I started taking bigger doses of vitamin D a few years ago, I stopped having such extreme crashes in the autumn. I no longer would find myself relegated to my bed, either sleeping or reading through the day. I no longer was hampered by vertigo. Paresthesias (psychedelic sensations) no longer popped and snapped like fireworks in my arms, hands, legs, feet, face. My cognition no longer went off a cliff.
 
The one thing that has not improved significantly, is the tendency to crippling pain and inflammation. But, I’m working on that one. I keep my muscles ridiculously warm. I never go barefoot in the house. When I start to have problems, I turn to cold packs, castor oil wraps and chiropractic visits more quickly. I know if I don’t act ASAP I can be crippled for months at a time, so I try to be proactive.
 
This last year has been better in that regard, and I know it’s because I’m being more careful. I got rid of my old chair in the living room, because it was an ergonomic disaster for me. I got a remote keyboard for my computer, and was rewarded with a huge decrease in back and shoulder pain, and less occurrences of swollen hands and arms.
 
Last year, I relied on wishful thinking instead of treatment. I ended up unable to walk in September, and limped my way to Christmas. My chiropractor was my salvation, bringing my right knee almost back to normal within about three months. Regular visits seem to keep me in reasonable working order.
 
Will I be able to steer clear of being crippled or bedridden this year? Time will tell.
 
What is autumn like for you?

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25 comments

{ 25 comments… read them below or add one }

slayadragon October 15, 2013 at 5:14 am

Extreme Mold Avoidance is a technique based on the concept that if you can get totally away from the inflammatory toxins that are problematic for you, the body will stop masking to them and then immediately react to them when re-exposed, thus allowing avoidance of them.

This is the same concept that is used for people to be able to tell they are reactive to gluten. Just cutting bread out of the diet is not enough, because gluten is in other products too. But if people can get rid of gluten entirely for an extended period of time (e.g. a few weeks), many people find that they start to feel better and then get much worse again if they reintroduce it.

By this point, many hundreds of people have reported becoming hypersensitive to certain mold toxins through this exercise (e.g. after moving out of a moldy building and putting aside their contaminated possessions). And dozens of people have reported very substantial improvements or return to near wellness from classic ME/CFS as a result of being even more scrupulous with regard to small exposures to these toxins.

This is relevant to this article because those of us who have pursued this route to wellness have found that there is a toxin in the outdoor air in some places — and not in other places — that becomes much more prevalent in winter. And this drives people who are hyperreactive to that toxin and that live in those places into poorer health in the winter months.

The idea that some locations are better than others with regard to the presence of mold toxins is acknowledged by Dr. Sarah Myhill, an excellent clinician who apparently heard about the "Locations Effect" frequently enough from her patients that she started paying attention.

http://www.drmyhill.co.uk/wiki/Mould_Sensitivity

And again, in many places, this effect is especially pronounced in winter months. For instance, those ME/CFS sufferers who go on a trip from (say) Berkeley, California, to a Caribbean island in the winter very frequently report a remarkable improvement in health, even if they have no idea why or attribute the improvement to "lack of stress." (Put aside all the possessions contaminated by the outside air in Berkeley or whatever other problematic place during the vacation and the effect is likely to be even more dramatic.)

When i first started avoidance in 2008, I would have been bedridden and severely ill if I had spent the winter in a problematic place. In good places, doing avoidance, I was basically totally functional, including being able to hike for hours without post-exertional malaise. (At this point, after an enormous amount of detox and other healing, my system is more resilient and I am not affected quite as much by these toxins. Though spending the winter in a problematic place still is not something that I would do.)

Unfortunately, despite efforts, I have yet to be able to get any researchers to study this phenomenon. (My particular hope is to one day persuade Staci Stevens to substantiate it with her two-day exercise test.) But it is definitely not a trivial effect, and it's been demonstrated over and over again in people who have been diagnosed with classic ME/CFS by the top clinicians in this field. So regardless of whether people choose to pursue this route to wellness themselves, they should be aware of it.

Best regards,

Lisa Petrison, Ph.D.
Executive Director
Paradigm Change
http://www.paradigmchange.me

Jody October 15, 2013 at 6:11 am

Interesting stuff, slayadragon.

Thanks!

vamah October 15, 2013 at 7:05 am

Yes, fall has hit me like a ton of bricks this year. I am a warm weather person — my thermostat is always set high also. I get reynauds in my hands and feet. But the biggest problem is that I only feel human if I can get some sunlight. We recently had a week of cold, rainy days and it helped send me into a huge crash that I am trying to claw my way out of. I ordered a light therapy lamp and hope that will help get me through the winter.

Jody, how much vitamin d do you take. I take 5000 a day even though my previous (idiot) doctor told me that much was a bad idea even with my deficiancy. I know some people take as much as 10,000, and I'm wondering if I should do that for the winter months.

Jody October 15, 2013 at 7:10 am
vamah

Yes, fall has hit me like a ton of bricks this year. I am a warm weather person — my thermostat is always set high also. I get reynauds in my hands and feet. But the biggest problem is that I only feel human if I can get some sunlight. We recently had a week of cold, rainy days and it helped send me into a huge crash that I am trying to claw my way out of. I ordered a light therapy lamp and hope that will help get me through the winter.

Jody, how much vitamin d do you take. I take 5000 a day even though my previous (idiot) doctor told me that much was a bad idea even with my deficiancy. I know some people take as much as 10,000, and I'm wondering if I should do that for the winter months.

Vamah,

I must preface my answer by the fact that I am not a doctor and would not dream of trying to tell people what they should or should not do. :) I will tell you though that I also had started at 5,000 IUs six years ago, and gradually increased that over a couple of years, and found 10,000 to be what seems to work best. Less than that and I still deal with some low level symptoms characteristic of my autumn fall. Feeling of breathlessness, shakiness, like my legs weigh a thousand pounds, feeling like I need to fall down, more brain fog … stuff like that.

xxRinxx October 15, 2013 at 11:35 am

Cold weather is my saving grace! I also sleep with my window open in temperatures from 50f-20f! I hate hot weather, it makes me tired, achy, and my head pounds..But I definitely perk up in the cold weather. I have more energy in the fall and winter, and i can even go on short trips out and walk more. I always love when the temp drops and I can function a little more.

Tammy October 15, 2013 at 12:04 pm

yep…………definitely affected in autumn…….and it usually lasts sometimes all the way up through Spring. My mood is lower and by Thanksgiving I'm downright depressed (more than usual)..Joint and muscle pain worse…….stiffness, etc.
I think I am going to try some vit. D………..I was actually going to start it in August thinking it might help ward off some of my symptoms by the time autumn came around.

Jody October 15, 2013 at 1:45 pm
xxRinxx

Cold weather is my saving grace! I also sleep with my window open in temperatures from 50f-20f! I hate hot weather, it makes me tired, achy, and my head pounds..But I definitely perk up in the cold weather. I have more energy in the fall and winter, and i can even go on short trips out and walk more. I always love when the temp drops and I can function a little more.

xxRinxx

Sounds very like my son, and a few other people with ME/CFS who I know.

Jody October 15, 2013 at 1:45 pm
Tammy

yep…………definitely affected in autumn…….and it usually lasts sometimes all the way up through Spring. My mood is lower and by Thanksgiving I'm downright depressed (more than usual)..Joint and muscle pain worse…….stiffness, etc.
I think I am going to try some vit. D………..I was actually going to start it in August thinking it might help ward off some of my symptoms by the time autumn came around.

Tammy,

If you try vitamin D I hope it helps.

SickOfSickness October 15, 2013 at 2:33 pm

In winter and autumn, I feel worse. That in-your-bones feeling when it's about to rain happens, even when it's not going to rain.

Jody October 15, 2013 at 2:55 pm
SickOfSickness

In winter and autumn, I feel worse. That in-your-bones feeling when it's about to rain happens, even when it's not going to rain.

Sounds crappy, SickOfSickness.

Delia October 16, 2013 at 5:43 pm

Yes! Every year, until this year, I have April to October as relatively much better. I live for those months.

October to March was a series of recurrent flus, some three days-some three weeks. With pre-and post crashes and very few decent days. However my duties and responsibilities never ease up during those months.

Three years ago my doctor put me on prescription vitamin D. That year I had only three flus from October to March, which was a god send, but yet I was as tired as if I was sick throughout the winter. But not having the flu all the time was heaven!

I have had an additional two rounds of the prescription vitamin D in the years since. It helps tremendously. In between they put me on OTC D3, even though I took it before, in between and after the RX version with no visible effect and had continued low levels of vitamin D in my blood tests.

I have no idea why one seems to work and the other doesn't.

This year I had no spring or summer. That was hard. It is hard going into it every year. Every year I feel I never got enough done during the summer that I hoped. I fear getting even more behind.

It's very interesting that many people have either good spring and summers and others have good fall and winters! It's nice to learn of other people who have the seasonal reactions. I don't feel so alone.

This was a great read.

Jody October 16, 2013 at 6:20 pm
Delia

Yes! Every year, until this year, I have April to October as relatively much better. I live for those months.

October to March was a series of recurrent flus, some three days-some three weeks. With pre-and post crashes and very few decent days. However my duties and responsibilities never ease up during those months.

Three years ago my doctor put me on prescription vitamin D. That year I had only three flus from October to March, which was a god send, but yet I was as tired as if I was sick throughout the winter. But not having the flu all the time was heaven!

I have had an additional two rounds of the prescription vitamin D in the years since. It helps tremendously. In between they put me on OTC D3, even though I took it before, in between and after the RX version with no visible effect and had continued low levels of vitamin D in my blood tests.

I have no idea why one seems to work and the other doesn't.

This year I had no spring or summer. That was hard. It is hard going into it every year. Every year I feel I never got enough done during the summer that I hoped. I fear getting even more behind.

It's very interesting that many people have either good spring and summers and others have good fall and winters! It's nice to learn of other people who have the seasonal reactions. I don't feel so alone.

This was a great read.

Thanks Delia.

ukxmrv October 16, 2013 at 7:25 pm

In the UK one of my times of the year is around November and December. That's the change from Autumn/Winter. My POTs symptoms are better as the cold weather sets in and it's usually before all the colds, flus and the winter vomiting bug hit me. Just after the clocks go back as well.

My original acute onset viral attack (the one that started ME) was in the summer.

I've tried the Caribbean holiday before (lucky for me twice) but although I am better by the sea (and with air conditioning) it doesn't make a huge difference.

Helle Nielsen October 17, 2013 at 10:26 am

Many ME patients feel better in the summer and relapse in winter. I have always presumed that higher levels of vitamin D in the summer from the sun was the explanation. But ME patients with high plasma levels of vitamin D and relapse in the winter made me wonder that something did not add up.

So I searched for answers and I found an article written by Professor Prue Hart, Department of Inflammation, Telethon Institute for Child Health Research, University of Western Australia:
Vitamin D supplementation, moderate sun-exposure and control of immune diseases

The article describes that sun exposure has an immuno suprressive effect that may alleviate disease symptoms in immune diseases. Is this a possibility in ME? I don't know, but I think it is worth while to learn a little more about photoimmunology.

Read more: "Photoimmunology" http://followmeindenmark.blogspot.dk/2012/11/photoimmunology.html

Jody October 17, 2013 at 3:23 pm
ukxmrv

In the UK one of my times of the year is around November and December. That's the change from Autumn/Winter. My POTs symptoms are better as the cold weather sets in and it's usually before all the colds, flus and the winter vomiting bug hit me. Just after the clocks go back as well.

My original acute onset viral attack (the one that started ME) was in the summer.

I've tried the Caribbean holiday before (lucky for me twice) but although I am better by the sea (and with air conditioning) it doesn't make a huge difference.

ukxmrv,

I'd be willing to go on a Caribbean holiday as a health experiment.:)

Jody October 17, 2013 at 3:24 pm
Helle Nielsen

Many ME patients feel better in the summer and relapse in winter. I have always presumed that higher levels of vitamin D in the summer from the sun was the explanation. But ME patients with high plasma levels of vitamin D and relapse in the winter made me wonder that something did not add up.

So I searched for answers and I found an article written by Professor Prue Hart, Department of Inflammation, Telethon Institute for Child Health Research, University of Western Australia:
Vitamin D supplementation, moderate sun-exposure and control of immune diseases

The article describes that sun exposure has an immuno suprressive effect that may alleviate disease symptoms in immune diseases. Is this a possibility in ME? I don't know, but I think it is worth while to learn a little more about photoimmunology.

Read more: "Photoimmunology" http://followmeindenmark.blogspot.dk/2012/11/photoimmunology.html

Helle,

Thanks for the food for thought.

jenbooks October 17, 2013 at 3:28 pm

In some places, autumn pollens affect the immune system of ME sufferers.
In northern climes, autumn is a very different experience. In southern climes, it doesn't get cold, really, until maybe winter–and even then can get into the 60s in the day. And the sun is always really warming. So the body doesn't need to hibernate.

ukxmrv October 17, 2013 at 6:09 pm
Jody

ukxmrv,

I'd be willing to go on a Caribbean holiday as a health experiment.:)

Glad to hear that you are well enough Jody. Those days are long behind me now sadly.

It's not a small thing to contemplate. Many PWME reading of the anecdotal reports of near cures from changing locations would find the barriers insurmountable. In my case it just didn't work. I was well enough to try it then but some people would find the upheaval too much even to consider it. We would need to arrange medical stretcher type transport for many.

Jody October 17, 2013 at 6:17 pm
ukxmrv

Glad to hear that you are well enough Jody. Those days are long behind me now sadly.

It's not a small thing to contemplate. Many PWME reading of the anecdotal reports of near cures from changing locations would find the barriers insurmountable. In my case it just didn't work. I was well enough to try it then but some people would find the upheaval too much even to consider it. We would need to arrange medical stretcher type transport for many.

I know what you mean. I would also find it a huge undertaking, and would be risking a huge crash just in making all the preparations that would be necessary. But it's nice to dream about the idea of going someplace else.

tatt October 18, 2013 at 12:42 am

I also find myself going into hibernation mode in autumn. My metabolic rate, always low, falls further and if I don't wear gloves my skin cracks.

I'd like to mention a few things – first vitamin D. Dr Sasha Gominak (a neurologist) says you need to keep this within a certain band for restful sleep. http://drgominak.com/vitamin-d-3/ So over-supplementation wouldn't produce greater gains. I had my levels measured, they were low (at the end of summer and after supplementing with 400 iu), I supplemented with 2000 iu overwinter and date a slow recovery from being practically bedbound to being able to do a little to the supplementation. I also eat a lot of oily fish, a good source of vitamin D. I've just gone back to supplementation after stopping for the summer and will take at least 1000iu per day. I'm considering a UVB sun lamp like this http://www.amazon.com/KBD-Vitamin-D-Lite-Flourescent/dp/B004GYB6X6/ref=pd_sim_sbs_hpc_4/190-3535071-8511601 although I'd have to have the expensive uk version http://www.phbhealthcare.com/uvb/ but as we age the skin becomes less effective at producing vitamin D and I'm no youngster :)

Secondly there is a theory that hydrogen sulphide gas is an issue in ME http://www.cortjohnson.org/blog/2013/10/10/atp-hydrogen-sulfide-natural-killer-cells-heart-mecfs-associations-video-series-back/ If anyone knows where to get DL-propargylglycine I'd try that but as it is I'm working on trying to change my gut flora, as that may reduce hydrogen sulphide. Could diet changes affect while we feel worse in autumn? I know that in summer I eat a lot more fruit, it's been a good apple year in England so I'm still eating a lot and not feeling as bad as usual.

I've also tried the "better on holiday" route and it does help me a little but that could be that I don't have the energy to keep my home dust free.

tatt October 18, 2013 at 12:48 am

I forgot to mention – magnesium is often very effective in reducing pain. As many people cannot tolerate its laxative effect magnesium sulphate baths are recommended if you can take baths and a spray like this http://www.amazon.co.uk/Better-Magnesium-Original-Spray-100ml/dp/B002VPDX4W if you aren't able to bath. If taking a bath add 500gms of magnesium sulphate to a warm bath, soak for 15 minutes and pat dry, don't rub as the magnesium is absorbed through the skin. For those whose holidays include sea bathing absorption of magnesium from salt water may play a part in why they feel better on holiday.

rosie26 October 18, 2013 at 2:00 am

tatt – your mention of apples made me think of that saying "an apple a day keeps the doctor away" I wish perhaps that I had been doing that before I got ME – I wonder could it have helped ? Possibly/probably not. ?

I start getting edgy when Autumn arrives, March in the southern hemisphere.
We can get an early cold blast from the south in April. I find I am on high alert for it, dreading it.

As soon as it comes my sinuses flare, inflammation increases in my head, my eyes are sorer, I start to feel off balance and more unstable on my legs. I shiver and shake and can't seem to get warm. And this increases the inflammation in the body. Like everyone else I am sick of it, utterly. What does it feel like to feel normal.

What is worst is that the physical deterioration of ME puts me in a more fragile mental/emotional state. I struggle to be able to think things through properly. I seem to become more stuck in my head. I lose perspective easily when I least can afford too. I feel like there's no hope and I don't have a future that looks promising.
I know that it is the increased inflammation in my head that is causing this, but knowing that still doesn't stop it from happening.
I have never been to a psychologist in my life, but I am thinking about it. Just to see if they can give me some tips on how to deal with this. I have to concede I am not winning with this one. I have tried to manage on my own all these years.

I am going to try vitamin d next April, be great if it helps. x

tatt October 18, 2013 at 1:42 pm

rosie26 apples are a source of vitamin C, one of the cheapest antioxidants. I eat a lot of fruit in summer (we grow some) so my diet definitely changes between summer and autumn and it made me wonder how much other people change their diets.

My sinus problems have been better since treating nighttime reflux. I always suggest that people try raising the head of their bed by putting wooden blocks under it. If that helps medication for reflux may help further. NAC (n-acetyl-cysteine) may help by thinning mucus or a xylitol nasal spray/ 100% xylitol gum by dealing with low grade infections. While a psychologist might help you cope with the illness personally I think reducing the physical symptoms works far better.

rosie26 October 18, 2013 at 7:05 pm

Thanks tatt

I've written those things for the sinuses down to try. xx

S.A. October 20, 2013 at 12:32 pm

Summer has always been better. I've always joked that instead of evolving from an ape, I evolved from a bear. Hmmm… wonder if that will show up in my 23andme…

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