I’ve been busy clocking the important effect dopamine has on pain and symptomatology since I first started noticing its close relationship to PEM (post exertional malaise) in ME/CFS. To recap, when you have ME/CFS, you have a fairly limited “energy envelope” in which you can safely operate without causing another crash back into fatigue, pain and other symptoms. However, the dopamine theory I have formed (though I have seen similar written about endorphins, I’ve not specifically seen dopamine mentioned in this light so its an idea I have been noodling around for myself) is that when we are (over)doing things but enjoying ourselves, that dopamine flood feels so good and rewarding that (like endorphins) it can mask that we are operating outside of our energy envelope. Then, when the dopamine wears off, the overexertion suddenly catches up with us and, slam, we’re sent crashing into PEM again. There’s a very good reason why I think that dopamine can have this effect, and not just because it feels like such a relief to some of us (those with ADHD, for instance, who are chronically dopamine depleted) when we get that first flush of dopamine back in our system again that we forget all about ME/CFS but also because dopamine can actually reduce the amount of pain we are in, like taking an analgesic. No wonder we can get carried away and overdo it.

This, of course, makes it very hard to evaluate when we are overdoing things because we may “feel fine” (or even more than fine than usual) when we are actually doing those dopamine inducing things, so then we become carried away and hyperfocused on the task that is bringing us so much temporary enjoyment. Juggling these two parts…the one that desperately needs its dopamine fix and the part that is so easily overwhelmed by overexertion or overstimulation…is one of the hardest aspects of living with the varagaries of ME/CFS for me as someone who is also AuDHD. There is one other thing that can have a similarly masking effect on pain and fatigue…adrenaline, meaning that when dopamine starts to lapse, adrenaline can feel like a very near substitute, or at least better than nothing to keep the feeling of stimulation going. Because after stimulation comes the fatigue, the burnout, the increased pain, the payback and it can be intense and lasting. I strongly suspect that the dread of feeling the come-down from dopamine, when it abruptly runs out, has kept me attached to stress and overstimulation since long before ME/CFS came on the scene and its a hard habit to break when the alternative is to feel like everything suddenly stops and exhaustion or oversensitivity floods in.

So the problem with dopamine isn’t so much the dopamine effect itself…which can be so positive and even pain relieving…but the fact that it runs out all too soon and, when it does, stress and a lifetime’s habit of “overdoing it” so often get used to plug the gap. The desperate hunt for more dopamine itself can keep you on the very edge of nervous overexertion all the time or throw you into addictive and adrenalising habits (which may include overthinking and over forecasting the outcome of events, even catastrophising) that are the very worst thing possible for somebody with an energy deficit.

In fact stress, as will be seen below, can cause an even more lasting shortfall in dopamine, altering the way the nervous system generates and metabolises it, perpetuating the loop of dopamine dysfunction and increased pain, so its really not what you want to attract into your life as a dopamine substitute.

It’s very easy to mistake activities that spin those adrenaline plates as being “the same” as enjoying a dopamine high, which can lead us towards adrenalising situations and the kind of drama we would do better not engaging with. When we’re in that adrenaline flush of coping with something, for instance, we rise to the occasion but then the payback comes back on us, very hard, once the adrenaline has finished charging around our system doing its worst at alarming our various body systems into a state of heightened responsiveness or “fight or flight” (in fact the payback from overexcitement, good or bad, can be one of THE most devastating thing to happen in ME/CFS; as dangerous as, say, catching a virus, which is why I avoid becoming adrenalised at all during the very-precarious phase of trying to refind my baseline after the size of crash I had earlier this summer). It’s all a very tricky situation to handle, one I’ve alluded to a few times lately.

But what I’m most interested in writing about, today is the positive dopamine effect…a very marked effect indeed, in my experience (and, yes, one that can help me forget all about pain and fatigue for a few hours at a time, sometimes to my detriment when I then overdo it…) which surely has to be linked to the fact I am neurodivergent, because low dopamine really does seem to be a key to the whole piece of my health mystery. If dopamine mitigates the pain response in the body, a systemic shortfall of dopamine is surely a pretty good “reason” (such as there is any single thing responsible) for why I live with chronic pain, also why just so many people who also “happen” to be ADHD seem to end up with chronic pain conditions or at least very highly, painfully, sensitive to a lot of things. So, does dopamine really mitigate pain?

I’ve since come across studies about dopamine in the context of fibromylagia and other chronic pain conditions (as I also have) from which I learned that, yes, “Dopamine is a neurotransmitter that plays a role in pain modulation, and research suggests that dopamine abnormalities may contribute to fibromyalgia pain” (Fibromyalgia patients show an abnormal dopamine response to pain). Another study states “several lines of evidence support the proposition that a disruption of normal dopaminergic neurotransmission plays a role in the pain of fibromyalgia. Given the diverse activities in which central dopamine is active, such a disruption may ostensibly contribute to the expression of many of the bizarre and seemingly unrelated symptoms that characterize the greater ‘fibromyalgia syndrome’. It goes on to liken this model of pain to Parkinson’s, pointing out “the overlap in phenomenology between the two disorders is striking and includes such symptoms as parasthesia, dysautonomia, genitourinary and gastrointestinal dysfunction, sleep disturbances, frequent psychiatric involvement and, perhaps most intriguingly, mysterious musculoskeletal pains” (Central Role of Dopamine in Fibromyalgia). Bingo!

Chronic stress is broadly considered to be the trigger of fibromylagia and was certainly the precursor to mine as I was under relentless stress, for a very prolongued time, right before its onset (ME/CFS then followed in its wake). Another study (A Multi-Locus Approach to Treating Fibromyalgia by Boosting Dopaminergic Activity in the Meso-Limbic System of the Brain) finds that whilst both serotonin and dopamine processed get disrupted by chronic stress, the dopaminergic effects last much longer afterwards. I would concur as I have never truly felt that I am “depressed”, except that the persistent and many effects of living with chronic conditions can’t help but get you down in the end, and I always flatly refused antidepressants when offered because I could not see how they could possibly help and would only complicate my situation. However, issues with severe widespread pain and low dopamine have only worsened with age, to the point I first noticed that I am ADHD in my 50s, in similar timing to coping with all-new levels of pain onset, post-menopause. Though subtle clues were always there, it had never truly bothered me or stopped me in my tracks before; indeed, I would guess a few other members of my family are ADHD but none of them live with a chronic pain condition and so I think that this is the biggest clue that there is a point, a certain benchmark, beyond which dopamine levels become so affected by stress and pain (and then pain levels by low dopamine) that they start to create a sort of perfect storm for some people. Being neurodivergent in more than one way certainly contributed to the overall stress of my life before I became ill but did not cause the crash itself; however, now that I live in a paradigm where “overdoing it” even slightly triggers much worsened symptoms, I feel truly and frustratingly dopamine poor at times and this only feeds back into much worsened pain and yet more awareness that I am ADHD because my deficits show up that much more starkly under these circumstances.

The same study as above concludes that a dopamine agonist could be used to target fibromyalgia pain in a way that typical analgesics don’t even touch the sides of (its a fairly well known fact that drugs such as NSAIDs, opioids and corticosteroids have not been found to be at all effective for fibromyalgia pain and this is certainly my experience, hence why I don’t use them). Armed with this idea that finding a dopamine agonist is the way to go in my search for pain relief, I dived into the mission of finding one (especially as my fibromyalgia and neuropathic pain has been just so intense again for the last few weeks). The best thing I’ve managed to isolate, so far, is avena sativa (oat straw extract from the green flowering part of the oat plant) which I’m now using on a daily basis. In fact, I came across it years ago but hesitated to use it, back then, because it can’t be certified as gluten free but, this time, I was desperate enough to give it a try anyway.

Here are two excellent articles on subject of the very broad benefits of oats in general (Oats (Avena Sativa) and Avena sativa benefits, both containing a wealth of references). The fact that avena satvia may be a dopamine agonist is attributed to its ability to inhibit monoamine oxidase B (MAO-B), an enzyme that metabolizes dopamine and other monoamines, thereby increasing its availability. My eye was particularly drawn to the information that this has, in turn, been shown to have a positive effect on cold pain tolerance, something which is at the very root of the seasonal worsening of pain for at least six months of the year starting around September, as we are now in. The findings of another study I found suggest that oat extract has positive effects on sciatic nerve repair (Effect of Oat (Avena Sativa L.) Extract on Experimental Sciatic Nerve Injury in Rats), which is of interest given worsening nerve pain and fear of hastening nerve damage is rapidly becoming my biggest preoccupation based on some of my symptoms. Consistent with the positive dopamine effect, avena sativa has also been found, in a number of studies, to be of benefit to kids with ADHD and to, more generally, have positive effects on cognitive function and mood (Acute and Chronic Effects of Green Oat (Avena sativa) Extract on Cognitive Function and Mood during a Laboratory Stressor in Healthy Adults: A Randomised, Double-Blind, Placebo-Controlled Study in Healthy Humans). All of this was quite enough to convince me to give it a proper go this time, no more hesitation, so I chose the A.Vogel brand of tincture and contacted them for advice. They told me I could safely increase the dose referred to on the product, which is 10 drops 3x per day (which is the advice meant for children) and that there was scope to experiment upwards to see what would best work for me, so that’s what I’m now doing. There are apparently no known side effects other than the caution about gluten contamination.

Straightaway, I was impressed by its very obvious effect on my nervous system; I feel immediately more relaxed and pleasantly flushed afterwards (like after an alcoholic drink), calm, soothed, sometimes borderline joyful after taking it but not in a way that feels fake or drug induced. Its as though I am refinding my own inner balance through the mists and it slows down my thoughts, which is a real blessing. I’m not finding that it turns off pain as such yet (which is a huge disappointment) but it is helping my nervous system to cope with all the rigours of living with a chronic condition and so much all-consuming pain that I can’t ever seem to dial it down or get it easily out of my thoughts or attention, also to sleep much better which has huge cumulative benefits since chronic poor sleep is a known contributing factor to both fibro and ME/CFS. Since using it, I go out like a light and, though I still have to get up for all those interminable toilet visits, I almost sleep-walk there and back now and mostly fall straight back to sleep, so the difference in sleep quality is immense. I’m also much more relaxed in the day and always schedule my other two doses at times when there aren’t too many demands on me so I can relax more fully and reap the most benefit out of them. I certainly wouldn’t take it right before going out or having to deal with a situation but I have taken it with me to places that normally overstimulate and found it to be a pleasant adjunct to sitting back and enjoying myself more once I get there. With caution and curiosity, I am increasing my drops a little all the time. There appears to be no issue with taking avena sativa on a long term basis (taken from this referenced article, which also highlights some of the many benefits) so I feel confident that I can make it part of a longterm approach to boosting dopamine on a daily basis.

I am also generally noticing a more “dopaminey” feeling building up in me at random times after two week’s use…a feeling I can recall from years ago (a sort of wave of being “happy for no reason” coming over me from time to time…I particularly recall feeling bursts of this in my childhood) and this is really intriguing me as it’s something I’ve found quite elusive for the past 5 to 7 years!

However the reason I want to explore this dopamine topic a bit more today is because I’m also noticing the key part it plays in recovery, right after doing something that is extremely rigorous and exhausting to my entire nervous system, as were the events of this last weekend, which we exactly the sort of thing that would normally risk me crashing back HARD like I did in July. Because, when this thing was over yesterday, and I was finally waking up back in my own bed and it was all put behind me, I couldn’t help but notice that I was experiencing a natural flood of dopamine with the relief of it all… literally on a natural “high”…and this had nothing to do with taking oat tincture, this was my own body doing it to me, perhaps to buffer my exhaustion and the additional pain I was in, an inbuilt attempt at anaesthesia to carry me through. Problem being that I end up using up all my dopamine in one go so it doesn’t last very long and, by the end of the day, I was at risk of getting quite addictive in some of my behaviours in the effort to keep the dopamine feeling flying high..and so I wonder if this is a prime example of what then typically causes PEM to occur on day two or three after the strenuous event.

To paint the picture, we went to visit my elderly father-in-law this weekend, travelling there on Thursday, a long and lengthy trip I wasn’t sure I could handle beforehand as I hadn’t been more than 10 mins journey down the road or a couple of hours’ outing since my crash in early July…and it turns out I couldn’t. The visit itself was emotionally and physical demanding on several levels but the travel there and back and the change of location all took a severe toll on me as well. By the time we arrived, I was in a lot of extra nerve and muscle pain, not helped by a total change of temperature from cloudy and cool autumn weather here to a heatwave there (the humidity I am now used to living with here having been suddenly cut in half in the other location, from over 90% to 40%, seemed to have terribly detrimental effects on pain levels to nerves, skin, eyes etc and is another reason I continue to consider Sjogren’s syndrome, which does better in more humid conditions), plus the bed and sofa in the rented cottage were absolute murder for my back. After a gruelling day and the return of much worsened orthostatic intolerance on Saturday, my heart rate reaching its three month peak right before we headed back to where we were staying and a pretty awful night of it afterwards, it was strongly suggested by both husband and father-in-law that I needed to cut things short and go back home more than a day early rather than put myself through a repeat of the day before and even more rigors having to check out early on Monday, so we left after a leisurely Sunday breakfast. The only way I could tolerate the car journey home was to almost lie flat with legs raised up on an inflatable leg support, head fully back to take pressure off my core and encourage blood flow back from my feet, though I still suffered the effects of car vibration triggering much increased nerve pain for a good day afterwards. I was extremely grateful to get home to my own bed.

Everything about that trip but especially the fact of having to be away from home comforts triggered me this time, perhaps given I’m still so far from recovered from my crash that home is very much where I need to be at the moment. Also because I’m still noticing a sort of PTSD response in my nervous system as soon as I even think about travel away from home or packing up my wash bag or the car again; no doubt, the aftermath of last year’s very stressful time of moving house, relocating so far, hopping from place to horrible place for months and never clearly knowing when (or if) we were going to be able to move into the house we have since bought…the stress and overexertion of which led to my current crash.

So I “should” have been in a terrible, fatigued and lifeless state yesterday, you would think but, actually, I couldn’t seem to calm down from a good kind of excitement, like a Christmas Eve feeling or a new lease of life fuelled by gratitude to have somewhere I wanted to come back to and having got back to my preferred routines. Though I was leaden in my body, I insisted we go out for coffee in our local drinking place, craving to be somewhere cheerfully lit against the dreary weather, full of life and familiar faces (an activity that is a favourite dopamine generator of mine) and I was completely animated the whole time. After that, I did housework I shouldn’t have even attempted when my husband’s back was turned (he would have been down on me like a ton of bricks if he’d known), I roared through a load of executive tasks on my laptop and then hyperfocused on shopping for entirely extraneous things for the rest of the day…all happy things that would enhance my feelings of wellbeing or the cosiness of our home as we now settle into autumn (the Danish word “hygge” kept coming to mind as the Scandinavian practice of celebrating the dark by focusing on making things light and bright in cosy spaces has always strongly appealed to me). In fact, I was in one of my creative dopaminey splurges all day, which on one level felt like I was getting carried away with overdoing it and that I should stop myself before the inevitable comedown or crash occurred (and I do have to keep a close check on impulsivity at these times as it can so quickly lead to overspending and buyer’s remorse) but another part of me knew, quite wisely, that these happy feelings WERE my natural dopamine coming in to rescue me from the pain and physical hangover of the aftermath; my body’s way of keeping me buoyant until the danger passed.

The risk factor then comes along in the form of two things. First, whilst that “high” feeling persisted, it was so easy to believe that I had “got away with” the arduous weekend without any physical repercussions…very wrong…as I am still very stiff, very much in more pain than I should be, very much prone to spasms and running out of energy suddenly, of becoming hypertonic when I stand up for even a fraction too long, of enduring the kind of rib tightening that affects my breathing and causes heart flutters, my skin, gut and mastcells still extremely fired up from the change of environment, and of becoming subliminally stressed for long periods because my system doesn’t know how to wind back down again after all the disruption and overstimulation of travel (I wrote about that effect just the other week; it can take me days to come down from overstimulation). The second risk comes from the fact that the dopamine flush so quickly drains away, leading me to the very cliff edge that looks straight down upon the next dark valley of awful and often lasting PEM, which is my absolute dread after the month I spent housebound this summer. When I woke this morning, I really knew I wasn’t yet out of the woods yet as my pain levels were way up, my mastcells flaring and my stomach so inexplicably upset all of a sudden, like I had eaten something detrimental (I hadn’t); all clues I needed to tread very…VERY… carefully today as 72 hours is actually the classic time for me to crash, not the day right after the event!

It would be just so easy to feel doomed at this point, like “here it comes then, the big payback” and resign myself to the crash…but what if I could keep that dopamine flush going today? What would it take and could I then stave off the PEM aftermath or even the risk of the exaggerated immune response that is hovering there in the wings…if I could perhaps keep my dopamine replenished for another day and perhaps tomorrow as well (and negative thinking won’t do that)? As it happens, I have a day at home all to myself and can orchestrate it any way I want to so let’s be careful not to pick mundane things or even duty things that make me feel flat, worried or down in the mouth but curate things known to give me that sparkle, that joy, that positive hyperfocus without over exerting myself.

I will keep the rest of this post short and sweet (the last thing I need to do is spend all day toiling over words, getting all caught up in my head or overthinking my health) but, in short, I realised I have to find positive, dopamine inducing, ways to spend my time during this crucial part of the aftermath of overexertion…this time, and every time, I’m at risk of crashing afterwards.

So, no downward spiralling of thoughts allowed, no hyperfocusing on symptoms, no hunting for adrenaline surges (I’m already noticing how natural it would be, right now, to take on too much or turn my attention to stressful things as the natural dopamine high starts to wane to keep myself busy), but just keep my eyes straight ahead and focus on the goal of pure enjoyment today because its make or break time.

The best way I could spend day two and perhaps days three and four of my post-trip recovery is like a kid in the school holidays where I get to pick which favourite hyperfocus to plunge into and loose myself in some highly pleasurable task, though it still needs to be a calm task, not adrenalising in the slightest, and certainly not too long or intense. I also need to find the goldilocks level of movement, neither too much nor too little (note this only works when the PEM isn’t so strong you can hardly lift yourself off the pillow). As luck would have it, the after effects of my trip aren’t completely preventing me from moving this time (as they did in July) so I can get on with some sort of art or craft or dive into some pursuit like this on my computer if I want to, even get out for a short gentle walk with my camera, ideally mix it all up and keep it light, just as long as I still remember to pace. All those juicy little tasks I’ve been saving up, all the things I’ve wanted to go and look up, tick off or find out about, I can plunder them all today, this (I realise) is why I’ve been saving them up, only don’t overdo it, there’s no rush, no deadline. Making plans for the future and setting positive things in motion can be an easy dopamine fix without overexerting today. Wear comfortable but pleasing clothes that make me feel good about myself, put on the right music, sit in the best puddle of daylight, take time to watch the birds, appreciate this comfortable house. Oat tincture will help when I feel the need to calm myself down for a while, and I’m sure it’s giving me crucial backup support through this while process, but it’s more about adopting a certain mindset….a mindset for dopamine creation and preservation.

This whole three month process of coming out of a crash has been like “ME/CFS 101” for me…even though I “should” have learned all this stuff years ago, as a veteran of 20 years, much of what I have finally got a handle on is completely new to me, including finally understanding about pacing. I’ve had so many crashes in the past but, this time around, it’s felt much more serious and urgent, like I had to get it right or risk ME/CFS becoming much more serious and ingrained this time around, plus demanding of me one hell of a steep learning curve to crawl even this far towards my baseline but what I’m noticing is how (while micro crashes still happen) the micro recoveries are getting quicker to occur and more rebust. I’m acquiring more tools than ever, like this one, for turning things around before they become set in stone or get any worse.

Learning my own particular relationship with dopamine (and I strongly suspect we each have a slightly different dynamic with this, especially if neurodivergent) is helping me to master things that were always elusive to me in the past. It’s still work in progress, of course, but the more I pick up on the feeling of what its like to maintain the right amount of dopamine, for me, and then prioritise achieving that over all the other cravings, priorities and impulses that might occur (such as those that lead to a rush of adrenaline that feels “good” at the time but is really just a sign of being desperate for stimulation at any cost and which will come with terrible consequences afterwards) the more stable, calm and resilient I seem to get. It’s fair to say that dopamine maintenance has to become the priority of my life if that life is to remain on the right side of tolerable so that’s what I intend to give myself to; more effective than drugs and with far better side-effects.

UPDATE, two days later: So how did it all go? Well, I didn’t manage to avert the 72 hour crash, it came in like a tsunami on day 3 as it always does. Did the dopamine hunt help mitigate the pain? Well yeeees, but its harder to find dopamine than you may imagine when you’re deeply fatigued and/or in pain.

For starters, the online shopping idea (which came with advisories not to be too impulsive; I try to stick to things I was already thinking about getting but putting the time in to track down what I want/need on these more sedentary days) was a failure. Everything I ordered on Monday turned out to be completely wrong and now has to go back to the shops, though I do find I get a sort of perverse dopamine kick from returning things and getting the money back in my account!

And it’s much harder than you imagine to do art and craft when everything hurts, I always forget that until I try. Even using a laptop hurts when my nerves are fired up, so a day spent working on my webite won’t work, I can only manage small doses.

Other people looking in may think its just so easy for us to buck ourselves up…to get out for a walk, go to somewhere cheerful…which is what I normally try to do every second day by going to my local cafe if I can get there. But my limitations are such that, out of two possible drinking holes in my village, I can likely get to one but not to the other as its further away (also less comfortable seating), and this presumes I am able to get dressed and out of the house at all…back in July, I couldn’t manage this for weeks on end. It can get very “samey” to keep going to the same place over and over again looking for the same dopamine fix so, whilst I’m grateful to have places on my doorstep (I didn’t have any when I was living in my old house) this can’t be the only dopamine prop as it wears out with overuse.

Doing this kind of thing to brighten up your day also presumes that being somewhere loud and stimulating won’t crash your energy, as it did for me yesterday though on Monday I was more than fine. Sometimes, the slightest thing is toooo much. When I am in a lot of pain, my overstimulation limit gets very low indeed!

So what low demand, low stimulation dopamine fixes are there? It’s a hard one, a real conundrum, and really does come down to mixing things up at home and making sure there are places that are easy on the eye and which don’t send you into a stress cycle of worrying about improvements that need to be made or housework to do. Then, making sure you spend your time in different rooms or corners can give you a real dopamine boost rather than always sitting or lying in exactly the same place.

This is proving to be much easier in my new house, which is fairly minimalist for me but with some very key things (artworks, plants, objects, soft comforts) that make me really happy just to look at or touch. My old house was fairly maximalist and frequently stressed me out to be in, not helped by how messy it often got with its constrained space, especially when there were kids at home. Being able to sit here and feast my eyes on a corner of the room that brings pleasure to the eyes and comfort to be around can be one of the easiest dopamine hits there is, as can looking out of the window into the garden (appreciating fully that not everyone has a garden to look into). In the same vain, if I can manage to make some small adjustment such as cleaning the area around a bathroom sink or moving a few objects around to make it look better, this can give me an even stronger reward from having actually achieved something.

There’s no doubt about it, its very hard to find do-able actions that are rewarding when pain is intense or the slightest thing you attempt to do floors you. So then, as previously mentioned, planning future things you could do, imagining them, setting even the smallest ball in motion (eg sending an email enquiry) and looking forward to brighter days ahead can be a real tonic as long as the thing in question is even remotely feasible. Cooking up plans that are entirely “pie in the sky” unachievable will only make you feel worse in the long run but having small steps you can look forward to taking soon can be a hand rail to pull you forwards through the worse of a crash and far better for you than to fixate on the current symptoms.

I’m not suggesting this is in anyway a cure-all or easy to achieve but I am finding that when I generally aim towards the more rewarding, dopamine inducing activities and thoughts I do better than if I allow myself to go the other way towards hopelessness, fear, negativity, rumination, endlessly researching fixes or seeking out other people who are in just as much pain or distress as I am, which can quickly snowball the negative effects. If I can choose this way and not that way more often, it does help me to get through the worst of it and, so far, I am feeling more resilient, more able to cope with the severe aftermath of overdoing it than the last time it happened, when I sank into the mud much more quickly.

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. Opinions are my own based on personal experience. Please seek medical advice from a professional if you are experiencing any mental or physical symptoms that concern you.