Effect of the sun on EDS, POTs, MCAS, ADHD etc.

I’m currently having a health dip, the first “big one” for some time, which always comes as a shock (to find myself back into pain and incapacity after a long period of running around in my shorts being fairly agile and animated for a woman my age…like I have to make up for all the lost time as soon as I feel a bit better). In line with the heatwave being swopped for a thick covering of cloud and a few much-needed showers of rain, my POTs symptoms including vertigo are back, my joints have become hypermobile again, my gut motility has all-but broken down, the pressure headaches are back and the all-over pain of fibromyalgia is quite relentless this week. What a double blow, after such a superb summer of feeling so pretty darned great much of the time, in which I’ve really surprised myself how much I can do, how upright I can be, even on some of the hottest days!

It’s very easy to assume I am having this intense dip because the weather has become suddenly overcast, cooler and rainy after the looooong heatwave…but is this dip really the backlash from the intense sun of the last week or so, especially last weekend, where it was INTENSE day and night and, with temperatures well into the 30s during daylight hours, amping-up as the afternoons turned into another airless evening? Whilst I kept out of direct sun, I was well-aware of feeling much more satisfiably “stimulated” during those heat-bathed few weeks and there was a part of me (and not a small part!) that relished this feeling of being amped up, as though I was feeling distinctly more alive, more “me”, as compared to the long months of being sofa bound and fatigued in the winter.

I remember feeling somewhat like a helium balloon trapped on the ceiling during the height of its intensity, with something in me pushing and driving to get higher than I was able to get, always this pressure in me (and, for some reason in this hypermobile body of mine, pressure can feel like a good thing, that holds my limbs together much like an elastic support garment). I can now throw light on this effect with all I have learned about my innate intensity this year, such a core trait of mine I realise (how I thrive in intense states!), a topic I have written about in some of my earlier posts.

Since the weather changed, and air pressure dropped, I’m like that balloon after its been pierced on the branch of a tree. I feel loose and unviable in all my limbs once again, a rag doll with no substance, thus my muscles are overcompensating with the kind of rigidity that hinders movement, turning what should be elastic into painful rock. I find myself craving tight clothing and a weighted blanket again. I also find my mind is scouring around wildly to find its required intensity via more sedentary pursuits than of late, such as hyperfocusing (on, for instance, writing my first blog for some time) or making up imaginary deadlines and objectives with which to pressure my days (always one to watch out for in my case).

I notice how all these things are versions of the same thing really…my relationship with “pressure”, which determines literally all about my day-to-day health. Its a known “need” for many on the autism spectrum (I always think of Temple Grandin and her self-invented “squeeze machine”) and it can profoundly alter the whole way we feel about ourselves, what we can cope with and do. Getting the degree of pressure right is a make or break for my health and wellbeing, and these switches in the weather throw out all of my coping mechanisms, setting me back to the makeshift all over again!

Yet during the time it was “being hot” I felt I was coping admirably, compared to previous years (my theory why, below), when heat has been as problematic for me as the cold. Something in me, this year, felt like a younger format of myself, when I always used to be such a heat-bunny in my youth, always outdoors as much as I could be and lapping it all up, always dashing around in it…and, lately, my tolerance has certainly increased, allowing me to enjoy some of the benefits that warmer days and enhanced vitamin D bring to a body that seizes up in the slightest chilly draught. Oh and dancing, I’ve been able to do so much dancing…including at a wedding!

I have also noticed another effect of the heat, being that I have been rather dopamine charged and hyper during its peaks (booking multiple future trips, starting several art projects, planning things, overhauling our house and such). Could this current dip be pay-back time for overdoing things, for over-reaching in that way that those of us with ADHD tend to do with every fibre of our bodies when we are in the midst of a stimulant “high”?

In fact, as already mentioned, I’ve been coping better with heat the year than I had for several years previously, thanks (I believe) to the mega thiamine doses plus NAC I’ve been taking all year (see earlier posts), which together have helped me to pick up the level of my physical and mental resilience like no other protocol I’ve ever tried, allowing me to enjoy leaps and bounds of improvement this summer. I’ve been less allergic, in fact less “Mastcelly” in general (thus able to enjoy a fairly liberal diet for once), less “fluey-feeling” for no apparent reason and I’ve certainly had less brain fog or executive challenges since I began on this protocol, in fact I’ve felt sharp-witted, well-organised, multi-tasky and much more like my premium “old self” these last few months. By contrast, one of the hardest things about having a dip is suddenly feeling as though your intellect has gone west and you drop all your balls because you can’t see them any more through the constant visual and auditory interference in your head. My mental acuity has been one of the biggest pleasures of my year and I’ve been lapping it up on a daily basis (please, autumn and winter weather, don’t take it away again). Its so hard not to feel depressed when the brain fog slips back in like a mist rolling in from the sea…

I’ve even been feeling pretty darned sociable and outgoing lately, as testified by the fact we have travelled away from home for a few days every two weeks since April and I’ve been cooking projects to do more things and see more people in the months ahead…not like me when I am feeling at all crashed-out or unpredictable in my health (which invariably causes me to retreat deep inside of myself to weather it out alone in my “cave”). So, yes, I’ve felt really good in the sun, by and large, and now its all too easy to say my crash is “because” the dull rainy weather is back…but could I be barking up the wrong tree, at least a little bit?

How do these things even relate? What is the tenuous link between weather conditions and the very structure of my body, affecting how my muscles and nerves pull together (or not)? How does sun or lack of it so profoundly affect my brain chemistry, as I know it does (the obvious example is how acutely I suffer from SAD in the autumn/winter months)? For instance, how does the sun exacerbate the hyper end of my ADHD spectrum (as I notice it does…like I am on stimulants morning, noon and night) and how does this lead to an inevitable crash, sooner or later? Am I blaming the wrong weather system for my variables when I point the finger at cloudy or damp weather? Are these duller weather systems my body’s chance to catch up with itself, by taking my energy down a peg or two? Am I now “meant” to lie back and allow the recovery process to kick in for a few days, before the sun shines again?

After all, the sun has (as I’ve observed before) a potentially excitotoxic effect on my brain chemistry, a bit like too much sugar or a meal with hidden MSG. So has it been too much of a good thing, have I binged on sun?

To be fair, its hard not to get excitable when you notice so much dramatic improvement in your health. By and large, I’ve really been enjoying the warmer weather’s effects on my limbs…as in, little to no muscle rigidity, flexible yet strong and reliable joints, minimal clothing to aggravate my hypersensitive skin, wrapped up in balmy warmth and no draughts to cause sudden spasms of pain, like having a permanent hot water bottle (as I’m generally married to from September through to March…) without having to go and refill it every few minutes. I’ve been enjoying playing at being “normal” for quite a few weeks now, hopping in and out of my car (which I am compos mentis enough to drive when I am like this), dashing up and down the stairs and all around my house, doing clean-out or art projects, sitting however I want in folding chairs in the garden without paying the price for it later. Now, I can’t get comfortable in any chair in my house, nor my bed, nor flat on my sofa as everything hurts again and climbing the stairs involves limping and holding on to the banister; so, why?

All because the weather changed, it seems. This doesn’t bode well for the turning seasons over the coming weeks and comes as such a disappointment, having felt I had at least partially recovered this year.

However, as above (since “the answer” is seldom as clear-cut as we might think…and, I’ve learned from many reliable sources, the effects of any “trigger” are often so delayed in the kind of person that has EDS, MCAS or POTs that we can all-too easily blame the wrong thing) it is just as likely that I am having a dip now because I have been overstimulated all these past weeks, meaning my body could be having a delayed response to the sun. All too often, and I know this from hard experience, it puts on a brave face when exposed to whatever it is (a meal, an environmental exposure) and then crashes after the fact. My body also struggles with transitions, which this week has been, from one level of air pressure to another. So, though I have come to mostly associate cloud with pain…and, before I blame it entirely…do I have to consider that my dip could just as likely be because I tend to spring up like a jack-in-a-box and get too busy and excitable when the sun shines intensively (and, let’s admit it, my quality of sleep also suffers when its hot)? Do I have to review my thinking and be a little fairer to the current weather, also learn to feel less negative about it? Whatever the conclusion, its hard to deny that the sun certainly has some profound effects on EDS, MCAS and POTs.

Blogger Russell Irwin Johnson seems to agree, in this post: “When I discovered how thoroughly sun exposure was exacerbating my symptoms (of both EDS and MCAS) last year, I began to think much more seriously about the role of the sun in EDS”. He believes, and I agree, that EDS is down to one part genetics but also at least another part due to environment, thus finding out what those environmental factors are in your particular case, causing the gene to become active (in other words, taking an epigenetic approach), is crucial to managing your own health. I certainly believe the EDS gene is present in several of my family members and yet I am the only one who presents with the symptoms that I do, so what makes the difference in my case? To what have I been exposed, or in what ways are my circumstances currently different, in ways that mean I have to live with what can be some fairly severe health challenges and they don’t? I’m extra determined to figure this out before it becomes a problem for my daughter, who certainly shares some of the family traits (and I certainly know unrelenting stress for several years contributed a big part of my illness progression, but there are other factors that I search for tirelessly and hope to help her to avoid).

The effects of the sun are just one example of something that can affect the outcome of having a tendency towards these conditions and I could just as easily have made this post about exposure to EMFs, chemicals, emotional trauma or dietary factors such as lack of certain amino acids, all of which (I believe) play a significant part in disease progression. On this point, I am in total agreement with Irwin Johnson, who urges others with EDS and MCAS to never cease experimenting with themselves or rely on waiting for science to tell them what these effects are (which could take a very long wait…), something I am a lifelong advocate for as someone who never ceases their self-enquiry and personal experimentation. Your triggers and responses are likely very different to the next person’s and it’s a case of closely studying your own rhythms along with what helps and hinders (including environmental exposures, supplements and diet).

Learning to treat sun exposure like any other stimulant (for instance, my beloved green tea!) that can both benefit my sense of wellbeing yet also crash me in excess, thus learning to treat it with utter respect, has been a big part of this process as I’ve come to recognise my distinctly ADHD wiring (something I was in denial of, for years, until quite recently, but its been a game-changer to take this factor into consideration). I now fully accept that there is always a big part of me that will lap-up a stimulant hungrily, greedily, relentlessly…sometimes to my own detriment…if I don’t step in to call time on it and slow myself down (before my body steps in to do that for me). Time to pay the piper, or pay off the overdraft facility…

So, I may not be able to influence the weather, but having some idea how it affects me and then mitigating those effects as best I can via my own behaviours can make impressive inroads towards finding a personal kind of balance in how my body responds and I guess I have to learn how to do this over again, having had a more active year than usual, which isn’t to say I have to cease enjoying the all better days that mean so much to me (and for which I am just so very grateful) but that I will always have to be wary of this one defining trait I have…of potentially overdoing it!

Disclaimer: This blog, it’s content and any material linked to it are presented for autobiographical, general interest and anecdotal purposes only. They are not a substitute for medical advice, diagnosis, treatment, or prescribing. This article does not constitute a recommendation or lifestyle advice. Opinions are my own based on personal experience. Any links and information shared are for your own assessement and research purposes, I have no affiliation with any of the attached information sources and share them as point of interest, with no recommendation implied. You should check all health-related supplement and other protocols with your medical doctor before proceeding. Please seek medical advice from a professional if you are experiencing any symptoms or before you change your diet, your nutrients, your habits or anything else.

2 thoughts on “Effect of the sun on EDS, POTs, MCAS, ADHD etc.

  1. I sympathize with what you are going through. The heat and humidity and relentless sun are a miserable thing to endure. I live in the southern area of USA. I’ve been here for decades…but there’s no such thing as “getting used to it”. Summer Heat and subsequent heavy perspiration do some things that make dysautonomia worse:
    Heavy perspiring draws oxalate crystals out of the body. While having less oxalate embedded in tissues and organs is a good thing; the process of this can use up thiamine and also cause severe fatigue/ exhaustion/brain fog and pain. The reason? Because dumping oxalate from the body stimulates mast cells—makes them over-react. Sulfate from an epsom salt soak or taking MSM can calm down the discomfort of a mast attack. Dr. Emily Givler has described this on some excellent podcasts.

    Low thiamine can cause or worsen dysautonomia and POTS. Since Ehlers Danlos folks seem to need more thiamine than “normal” folks, it stands to reason that summer heat would make us feel awful. ( Direct sunlight feels 10 degrees F. hotter than shade).

    In the past few years I have sat out on my shaded patio, mid-morning, with outdoor temps in around 28 degrees ( that’s about 88 degrees F., I think), it makes me almost pass out. It’s scary. Or the tachycardia of POTS. Just trying to move the trash dumpster in the front yard/garden made me almost pass out from the heat. I have found some relief and improvement by using large doses of thiamine Hcl. Also, taking MSM seems to help me have much less/sometimes no/pain.( But everyone is different; and one should consult with one’s health care provider before using supplements.) Still, I look forward to mid-October (every year) when the oppressive heat goes away and nights are comfortably cool.

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    1. I sympathise with you too Jeanne, I’m always very glad we don’t have intensely hot weather here very often (though that may be changing). Certainly, as mentioned in the post, the thiamine therapy approach has been the biggest improvement in my health so far. I use the highly bioavailable forms rather than HCL, as per my previous posts on this, and take 700mg a day, which is my own personal decision and I don’t advocate anyone else to follow it unless they have taken medical advice. I have a hit and miss relationship with MSM and don’t currently use it but have good results from magnesium applied via the skin (in a non-stinging format; epsom salts irritate me) along with a high dose of magnesium supplements. I don’t seem to have the same issues with oxalates that I used to have, which is a blessed relief, though I still keep them in check (spinach, sweet potatoes or almonds very rarely!) I do feel my toxic load has reduced massively in the last few years through good diet and limited exposure and that has helped enormously. For me, its those damp/cool October weather conditions that hit me the hardest compared to summer when I mostly thrive, but its different for everyone.

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