Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Symptoms worse in Winter. Any ideas?

Discussion in 'General Symptoms' started by CFSNZ, Apr 17, 2013.

  1. maryb

    maryb iherb code TAK122

    heapsreal - good job you're in australia - you're a cheeky monkey..
    justy - we went to Tenerife - had a week in a 5* - moved rooms twice but really can only sleep when there's no-one in the next room or above or below:rolleyes: then 2 weeks in an apartment - could just hear furniture being dragged across the room above and heels click clacking seemed to go on all night, walls were paper thin and we could hear people just talking in the next room - we moved around there 3 times - I was exhausted- last week back to the 5* - we were up-graded to a suite - heaven for 2 nights and then someone moved in next door so even in a suite its no guarantee - but I did sleep and feel better the last week.
    I was so glad to get back to my bed. Like you its only the owls or foxes, or pesky early morning birds that waken me, oh as well as the local farmer who thinks if he's up everyone should be and drives his tractor roaring up the lane at 5.30am. Don't forget to book wheelchair assistance at the airport, you get whizzed through all the check ins and security, only drawback was waiting at the spanich end for the w/chairs to come but apart from that great.
    CFSNZ likes this.
  2. clive powney

    clive powney Senior Member

    Like others on here I always feel better in the summer - especially if I go abroad in the hot sun. There are many reasons I can think of why this works for me:-
    1. no need for the body to generate heat - a huge amount of the bodies resource is needed to keep warm
    2. Vitamin d levels drop in winter and I dont believe supplementation is the same as sun exposure
    3. Out in the open air rather than a stuffy house
    4. Bugs tend to die off in sunlight ??
    5. Why do/did convalescent homes always put people out in the sun???
    6.On holiday and lying out in the sun there is less stress
    7. On holiday I tend to rest pretty much all day so I am not particularly doing much at all energy wise
    I have worn sponge earplugs to bed for many years now as I used to wake up when a mouse farted down the end of the road, now I tend to sleep through most noise , although I do still wake regularly but not normally for noise.
    CFSNZ likes this.
  3. maryb

    maryb iherb code TAK122

    I mention 5* not for any other reason than to point out that whatever the accomodation is if you have noisy people around/nearby then it will impact on you if you're like me and are a really poor sleeper.
    CFSNZ and justy like this.
  4. justy

    justy Donate Advocate Demonstrate

    Hi Mary - we will be staying in a villa - it looks attached though to some others, so we will see. We wont be going by plane - driving (i know sounds crazy, the whole way across france and spain in the winter) because i have a terrible plane phobia, but i agree for anyone that a wheelchair is a good idea - i have my own as i often need it to be able to go on holiday or for day trips, it;s a life saver.

    Justy x
    CFSNZ likes this.
  5. CFSNZ



    Thank you very much for the helpful replies. I'm relatively new to posting on pheonixrising, and I'm impressed by all the great responses.

    From what you've posted, I've come up with my 'winter protocol' to help make it through.

    Vitamin D

    Perhaps supplementing is no substitute for sunlight, or maybe additional supplementation is required in Winter? I will:
    • get my Vitamin D levels tested;
    • increase my dose of D3; and
    • get out in the sun whenever the opportunity presents


    Environment likely to be more toxic in Winter due to less fresh air, mould, etc. I will:
    • open windows / go outside whenever possible;
    • buy a carbon-monoxide meter; and
    • clean up my room (a lot of dust at present)
    • Stay warm so body doesn't have to produce own heat (minimise PEM);
    • Check Thyroid, maybe treat with medication; and
    • Do my best to avoid viruses

    Wish me luck!
    sianrecovery likes this.
  6. CFSNZ


    Have you tried earplugs? They saved my life!
  7. CFSNZ


    Haha, I could tell this was written by an Aussie! :)
  8. Valentijn

    Valentijn Senior Member

    I think the thumbs up emoticon plus some reference to proctology might suffice :thumbsup:
    sianrecovery likes this.
  9. maryb

    maryb iherb code TAK122


    I forgot to mention - some doctors are saying using sunbeds very carefully ie. 2/3 minutes a week during times of little sunexposure. I wanted to try it but just haven't felt well any time I've been near the tanning place.:( I think you have to make sure its a reputable place, I suppose its a suck it and see how how you feel.
    re earplugs - the virus (or one of them) I have started in my ear, I have dizziness, vertigo, can't move my head quickly etc etc. earplugs make it much worse. I did use the foam ones before getting ill but tried several times since without success.
    I too am looking at my thyroid at present - definitely a complex area with ranges etc. Good luck with that.

    justy A villa is a good idea - you should sleep better there. That would be my only option I think, but I don't know if I would feel safe being left on my own, and I have so little energy at times I can't face going out even to sit in a wheelchair. And the mould thing I have, it took me ages to get my house cleaned up - literally, think its tolerable now, but I am scared of going into a damp house, it'd kill me.
    Oh dear trying to meet all these needs!!!
    justy likes this.
  10. Tally

    Tally Senior Member

    First 4 years of having ME/CFS was also MUCH worse for me in the winter. I was bed-bound, subfebrile, and often had sore throats. 5th year kind of flat lined. I was never feeling neither as good nor as bad as in the beginning. I'm waiting to see this year what will happen.
  11. sianrecovery

    sianrecovery Senior Member

    Manchester UK
    Hey Valentijn - its a long shot, but that emoticon might just work - shouldn't it be scowling tho?:devil::thumbsup: combo?

    Dr Fry in AZ said to me the low pressure before a storm filled his waiting room - he reckoned it was the change in pressure, rather than low pressure - but for me, it definitely IS low pressure - and my nerve pain in my face worsens dramatically - a dentist once told me that was the tissues swelling around the lesion in the bone. (nice!)

    As for us UKers, its not easy- you can suffer from an inability to clear biotoxins from mould - or a simple allergy to it. This is also a small, industrialised country where it is very hard indeed to get away from most pollutants. Most studies I've read have been clear tho - indoors air is far more toxic than outdoor (by and large, depending on where you live) so adequate ventilation, dehumification and if poss, some decent form of purification helps....

    I just went to try and escape Salford for a weekend to a beautiful and remote part of west wales - and what did I find in the bedroom? A wall of black mould by the wardrobe....had to come back. There are moments when I think I just cant do this anymore - and they are always to do with the environmental stuff, esp mould - because so few others beyond the kind of people on here get it.

    We also seem to have the winter that never ends this year - it needs to, it really does...
    CFSNZ and merylg like this.
  12. stfluffybrain


    I also get worse in winter although I am pretty much housebound which is weird. I have Hashimoto's disease as well as ME and I know from many forums that thyroidal illness gets worse in winter for a lot of sufferers. My body seems to have so much trouble reaching a good balance and keeping temperature right is extra stress on the system. I also find really hot weather hard to cope with though.
    hugs Dawnx
  13. Star-Anise

    Star-Anise Senior Member

    Hi CFSNZ! Hopefully you find some of this information useful :)
    1. Is this 'normal' in CFS? I would say so.
    2. What might be causing it? It's complicated :)
    3. What can I do about it? Some suggestions below
    Symptoms that get worse
    • Low blood pressure / pounding heart on standing I would say likely dysfunction with neurotransmitters & adrenal function
    • Brain fog Can have *multiple origins* including gut function & difficulty with ammonia buildup. But also can be related to adrenal function & neurotransmitters.
    • Post-exertional fatigue For me graded exercise combined with low stress diet (paleo, low sugar, hypoglycemia diet) was key in strengthening my body's ability to deal with lactic acid. My theory is that over time due to not using them our muscles have become less efficient at dealing with lactic acid which has led to increased muscle soreness, and increased PEF. Neurotransmitters play an important role in motivation to exercise (engage in activity), and mitochondrial function is key to address with PEF as well. Acetyl-Carnitine was a key supplement of mine for a long time, and I found Dr. Myhill's website to be very, very helpful in helping me overcome PEF. I found that I needed to exercise post-development of CFS in an entirely different way. I used to always be a long-distance runner, and now I am a sprinter. I have way more fast-twitched muscles now versus slow-twitched due to a high emphasis on protein now (my theory). Relative hypoglycemia was also a key thing to address in PEF and insulin resistance, because these are major barriers to getting the sugar (energy) into the cells post exertionally via the insulin pathway.
    • Sensitivities (light, sound, chemical) For me, very much related to neurotransmitters and working with my seasonal affective issues. I still get somewhat sensitive to light in winter, but we'll see what happens this next round, as I am ++stronger now then I was last spring :) Sensitivities to sound can also be related to the Gaba/Glutamate pathway - again back to neurotransmitters.
    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 I wouldn't rule this out. Your ability to use the Vitamin D that you are supplementing with might be compromised to begin with due to genetic issues with breakdown & synthesis and gut function. What form of vitamin D are you using. The only one that has really helped me was a high quality liquid. Biotics Research makes the best that I have tried. As well, one cannot rule out seasonal affective issues. It is the obvious difference in addition to those mentioned already re: increased energy demands due to temperature differences, and increased viral/bacteria loads.
    • Viral - more viruses go around in Winter, but my relapse occurs whether or not I'm experiencing viral symptoms Fair enough, but you are also exposed to more, whether or not you have symptoms, which means increased immune activation, and more stress on your adrenals (which may be compromised).
    I ++agree with what everyone has said re: increased symptoms with cold weather, & taking precautions to ensure that you are warm! It was funny, but my husband noticed that I always chronically underdressed for the weather, and I didn't realize what a drain on my energy always being cold & shivering was! I noticed a huge difference from ensuring I was adequately dressed. I also agree with the possible extra viral/bacteria loads we may be facing, and the decrease in fresh air & exposure to possible allergens.

    However, for me, the biggest thing was to take a look at seasonal affective issues and my Vitamin D absorption issues.
    I am huge into addressing/investigating snps (there's lots on this site), and was just blown away to see that there is a genetic link with vitamin D sythesis & utilization & dopamine synthesis.
    Vitamin D stimulates the enzymes that generate dopamine, a good reason to keep your Vitamin D level up, as we need dopamine to defend against microbes and metals, and to keep our mood up.
    a) I noticed a HUGE difference in my ability to cope when I started to supplement with very large doses of Vitamin D. In my opinion there is a lot of unsubstantiated fear around large doses ( for example: 10,000 IU/day) of Vitamin D. The first year that I was really working on this for the darkest months I needed to supplement up to 16,000 IU/day. I found the next year that I didn't need to go as high, as often, and just rather intuitively approached it & took doses as needed
    b) Dopamine is really related to motivation & mood. The sensitivities to noise & light definitely could be related to neurotransmitter (I've had this & it improved with supplementation of amino acids). Brain fog has been really related to neurotransmitters for me.
    With respect to heart symptoms this might help you:

    Keeping in mind: phenylalanine is a precursor to norepinephrine (noradrenaline), and epinephrine (adrenaline):
    "One of the most important functions of norepinephrine is its role as the neurotransmitter released from the sympathetic neurons affecting the heart. An increase in norepinephrine from the sympathetic nervous system increases the rate of contractions.[5]"From Wikipedia.

    -Possibly connected to your low blood pressure/pounding heart? My hunch, this is not a simple mechanism. Because the adrenals are involved in the synthesis of adrenaline. Hence the common association of adrenal fatigue with low blood pressure, and heart palpitations (anxiety like responses). It doesn't sound like adrenal burnout (stage 4), as then I would expect that there would be less of the anxiety/adrenaline like response and more fatigue.

    What to do:
    a) I would experiment with neurotransmitter supplementation via amino acids if you aren't already. Tyrosine and Phenylalanine were my superheros this last winter, and the previous one to that I had a solid base of 5-HTP supplementation in place. These 3 were my saviors.
    b) Look at your adrenal function if you already haven't. I have heard of people having great improvement in the postural hypotension that you are describing with the appropriate support to adrenals, as well as the racing heart. You will need to experiment what approach will work best for adrenals, as in my history I have used a variety of different approaches including adaptogens, high vitamin C, and glandular supplementation depending on what my adrenals needed.
    c) Consider higher doses of Vitamin D as you start to experience symptoms come this fall.
    d) Consider suggestions above for post-exertion fatigue. Look at hypoglycemia diet, potential role of insulin resistance, and consider a graded exercise program (if appropriate and only to tolerance).
    e) Take a look at your methylation system, and how your body generally deals with toxins, as you are introduced to more mold, and potential allergens come winter. 3 winters ago SAMe was my best friend.
    f) Look into potential role of Seasonal Affective Disorder. A light box, and dawn simulator have been my best friends for years. They help on rainy days too! And my office is situated in a low light area, so I use my light daily :) Low light means lower levels of wake-up neurotransmitters are generated in morning, so greater fatigue due to disruption in circadian rhythms.

    All the best in this journey that we are all on! I live in Northern Canada and this has been a big learning curve for me!

    merylg likes this.

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