Hi CFSNZ! Hopefully you find some of this information useful
- Is this 'normal' in CFS? I would say so.
- What might be causing it? It's complicated
- 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.
From:
http://www.heartfixer.com/AMRI-Nutrigenomics.htm
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!
Star
