Missing that runner’s high? (Any high at all?) Your living circumstances or the losses you have endured may not be to blame. The loss of those good feelings may not be due to depression. Physiology could be behind all of them.
“Highs” or good feelings it turns out are, or should be, a natural part of living. Our body uses good feelings to reward good behaviors such as exercise.
But what if that reward system isn’t working? What if the production of those good-feeling chemicals are blocked? Could that result in something like fibromyalgia and chronic fatigue syndrome (ME/CFS)?
The evidence – most of it indirect to be sure – suggests that many of the pathways that produce feelings of pleasure, relaxation and rest may be blocked in these diseases.
Some of the pathways are familiar but a recent study may have added a new one that may hit quite close to home, into the mix.
Rest and Digest Down – Arousal Up: Parasympathetic Nervous System Teetering in ME/CFS and FM – Studies suggest that the “rest and digest” or “feed and breed” part of the autonomic nervous system is on the ropes in both ME/CFS and FM. Parasympathetic nervous system activity helps us relax, digest our food – and when the time is right – jump each others bones.
It’s counterpart. the sympathetic nervous system, appears to be now firmly in control in both diseases. It leaves us wired, edgy and prone to catastrophic thinking. If you’re having trouble relaxing – a wimped out PNS could be a reason why.
Reward Down – Fatigue and Depression Up: The Whacked Basal Ganglia Dopamine Reward System in ME/CFS – “Reward” is probably too tame a word for the basal ganglia’s dopamine system. Reduced basal ganglia activity has been strongly tied to both fatigue and reduced reward in ME/CFS and hepatitis C patients. Because the dopamine system affects both reward and movement it’s easy to see how dopamine problems could have global effects; i.e. no reward…no future…little movement.
Natural High’s Down – Pain Up: Endocannabinoid Activity Reduced in FM – Indirect evidence suggests that endocannabinoid activity in fibromyalgia may be reduced. A recent review article, in fact, suggests that increasing cannabinoid activity could block the pain in fibromyalgia, irritable bowel syndrome, headache and muscle spasm. A survey that found cannabis to be the most effective pain treatment for fibromyalgia suggested the cannabinoid system could definitely use a little strengthening.
Finally, researchers found that knocking out cannabannoid receptors in mice caused them to reduce their running. The researchers proposed that the endocannabinoid system reduces the negative signals sent to our brain during exercise. When they knocked that system down – all the mice felt during exercise was pain.
Leptin Up – Reward Down: Leptin Inhibits Reward and Movement in ME/CFS
Now comes a mouse study suggesting that leptin – the fat hormone that popped out in Jarred Younger’s Good Day/Bad Day chronic fatigue syndrome study – could also be blocking those feel-good systems. When Canadian researchers knocked out leptin in the dopamine regions of the mice brains, the mice jumped on the running wheel and ran and ran. In fact, those little mice ran 11 kilometers a day (as opposed to the six kilometers they usually run. Mice LOVE to run.)
The finding made evolutionary sense. Leptin is a fat hormone. Reduced fat levels and therefore reduced leptin levels put the body in running mode – the better to procure food. High fat levels, on the other hand, put the body in energy conservation mode.
The ME/CFS Connection – The leptin levels in Younger’s ME/CFS study were not high but still appeared to impact a wide range of immune variables. That suggested that even small increases in leptin may have a big impact in chronic fatigue syndrome.
Some more interesting leptin facts
- Decreased leptin could help explain why some people with ME/CFS and FM do better during short-term fasting
- Increased leptin levels during emotional stress could help explain how small stressors can be so darn stressful in these disorders
- Since leptin is decreased by testosterone, leptin could in part explain why testosterone supplementation sometimes works.
A Complete Blockade?
In an article on the recent leptin finding a biological anthropologist asserted that it takes a complex system to produce the motivation and ability to exercise. Every one of the systems he singled out could conceivably be impaired in ME/CFS and FM.
“The motivation to exercise is not a single protein, a single hormone, a single event. It’s a complex interaction. Opioids, endocannabinoids, dopamine, it’s an incredibly complex system.”
These findings suggest that virtually every “good-feeling” system in ME/CFS and FM may be blocked. That could help explain why studies find such low quality of life and functionality levels in these diseases. Tie together under-active feel-good pathways with a physiological inhibition on movement and you’ve got a difficult situation.
Has a kind of perfect storm occurred in ME/CFS and FM? What do you think and what can you do about it
- Check out another feel-good chemical that may be low in fibromyalgia – Could Fibromyalgia Be A Low-Endorphin Disease?
This is interesting as it was something I have been through with me/cfs and fibro. I felt like I had no motivation and my memories had no emotions at all. This is exactly what the article talks about
But I am happy to say that LDN has fixed all of this for me. I have my emotions back, I feel motivated (including the sexual motivation of a teenager! haha). Now if only I had the energy to follow through with these things more often!
How long have you been on the LDN? How long did it take before you noticed this improvement, and what dose was that at?
Any info you are willing to share will help. I have been using LDN off and on, more off than on because of sleep and nausea issues. Reduced the dose and doing fine, working up to a higher dose. Just wondering what I should be expecting in terms of improvement and what dose is required to get there.
Everyone responds differently. Your ideal dose may be lower than the standard 4.5. If you have problems, try a very tiny dose even as low as .1 mg. to start. You can also alternate days.
What is LDN please?
LDN = low dose naltrexone
“including the sexual motivation of a teenager! hah hah”
I want some of what you got 🙂
I’ve been using LDN for a year and a half. I can’t say that it’s done anything to my libido that wasn’t already there but it definitely has had an effect on what I perceive as my immunity. I don’t get sick as often or for as long and my seasonal allergies are less sensitive.
It was a not easy, starting and getting used to LDN and the dreams were wicked when I did sleep, but that did settle down after a time, it’s just not easy to push through it until the body adjusts, and I’m sure that there is some degree of a Herx reaction.
It’s interesting about the cannaboid receptors. I am on Nabilone (synthetic THC) but have reduced my daily dose by 75% as my pain is significantly less. I am wondering if there is something like LDN out there that binds with the cannaboid receptors (LDN binds with opiod receptors) but doesn’t give that muddled thick head and sometimes high feeling that Nabilone does. Clearing my already cloudy head is my prime motivation for getting off the Nabilone.
I wish LDN worked for me. I’ve tried it for a long time and it’s not at all helpful.
If LDN is a effecting the microglia as Younger believes it could be effecting parts of the microglia that aren’t effected in your system. Younger explained the microglia as very complex cells capable of pumping out a large variety of substances. If the microglia are behind this illness – something else might work for you.
Younger is checking a wide variety of microglial affecting factors.
I’m interested in ldn but does it mean I’d be getting off of my opossum to gain the benefits of ldn? I couldn’t find any articles that addressed this. Thanks to anyone who knows. PS I have no objections to getting off my opioids if this works better. But i also have a back injury in addition to the fibro and chronic fatigue.
Yes, using LDN means you have to get off all of your opioid medications. Naltrexone’s original purpose was to prevent addicts and alcoholics from abusing, drinking and opioid drug use while taking natrexone will leave you in a world of hurt. They used to call it Antabuse. I was admitted to my local hospital not long ago for a gall stone and even though it had been 3 days since I had taken my tiny dose of Naltrexone the doctor simply would not give me any of the usual stuff for the pain because of the risk. Naltrexone blocks your opioid receptors which would prevent your pain pill from actually doing anything for you.
Don’t assume your back pain is from your back injury. I broke L5 25 years ago and thought my misery was from it. Doc gave me some nabilone (binds with cannabinoid receptors and perfectly fine to use with LDN) and pain that I was willing to risk spinal surgery on almost vanished. Turns out it was fibromyalgia causing the debilitating pain in my lower back and legs.
May I raise another side to this Feeling Good pathways article? I feel very good when I have actually overdone it, but not enough to have crashed or to have triggered bad symptoms.
It has taken me along time to recognize that when I feel wonderful and well, it is almost always adrenaline talking. As a person with moderate ME, trying to add quality to my life, I can easily be tricked into overdoing it to the the extent that I will not just flare, but crash into a long term relapse.
I have set up a reminder sent twice a day the Feeling Good is Very Dangerous.
Does anyone else have these adrenaline highs? How do you deal with them?
Yes my experience is the same as yours. I too have learnt not to believe the high after an event and therefore take it abit easier than I previously would have done. It’s still nice to feel it though even if I don’t act on it anymore.
Suella and Kerry,
Yes to both of these comments! I’ve even seen it documented in CFS literature (sorry I don’t know where – I have about a thousand books and read all the websites too, but I’m 100% certain I’ve read case studies which document this)
My husband calls them my ‘manic moments’. I run around getting as much as I can done because I can’t believe I am actually able to. I also feel super creative and start ll sorts of projects. I push hard on the exercise and I even talk faster!
He thinks I actually bring on a crash by behaving this way, but I know it’s not that – I’m not actually aware that I’m doing it. It just happens – I feel a glimpse of happiness and motivation, of what life used to be like and it comes from inside, it’s not created by me. What I think is that (for whatever reason) this is the beginning of an inevitable crash that is already in motion inside my body. So although the extra exertion probably doesn’t help, it doesn’t cause it either. It’s already begun.
PS- Since I know shopping is dopamine related for some people, just like gambling, I will also wake up a few days into a crash and think “Why on earth did I go and buy all that crap the other day? I’m not even a painter – what did I think I was going to do with all those brushes?
If I notice and heed my body’s warning that I suddenly feel Good, I can head off a crash at the pass. That feeling Good is for me my body’s notification that I am in a flare, and potentially a crash if not a several weeks long relapse. Feeling and acting tired but wired is my body shouting at me that I am teetering on the edge of a crash.
I can head the crash off at the pass by not choosing to allow the adrenaline to allow me to do far too much. In fact when I get this Feeling Good warning I know I must back well off and take more flat rests, and postpone and reschedule any high energy activities.
I warn myself with a reminder twice every day that Feeling Good is VERY Dangerous. Otherwise I can very easily be in a repeating yo yo situation where I actually never climb back to my previous pre-crash/relapse level of health. Been there done that one year and I will never knowingly do that again.
I agree with your shopping comment. I will never buy anything at all expensive at the end of a long and tiring day. I know from past mistakes that my judgement is impaired.
Isn’t what you guys are explaining bipolar?
I find that regular cannabis use at the right dose keeps my emotions in check and prevents me from overdoing it to the point of crashing. It tells you whether you have some spare energy to use or whether you need to go and lie down and chill out. I no longer have to spend many days in bed. I often can’t do a lot but at least I’m not stuck in bed, feeling like crap.
I find I get the adrenaline rush when I lower my carbs (or just get hungry) – I don’t seem to get any energy from fats. I could eat (and nearly do) a pot of cream a day with no effect on energy or weight. When I went on a low-carb diet I felt dreadful for weeks, then adrenaline kicked in and I lost a little weight but felt hyper, tingling (and starving) the whole time. Not pleasant.
What I have found helps is glucose tablets (eg Dextrosol). I can do a whole morning of gardening – including digging – if I take a tablet as soon as I feel my energy or brain-power dropping, or a little pre-emptively. The exercise does leave me brain-zonked in the evening, but not unpleasantly so, and I’m okay to go again the next day in the same way. Not a cure in any way, but allows some functioning without an adrenaline rush. I do have to choose between physical work and brain work on a day, though – I haven’t worked that one out.
I think I would like to try your idea of the glucose tablets. I have never heard of that. That. How much do you take? Does it affect your blood sugar? Do you get a blood sugar crash? Thanks for the info.
Thanks for the information. How much of the glucose tablets do you take?
On the days I have those feel good adrenaline highs I take full advantage. Yes I pay for it for days after, yes I know better, but honestly those days are so far and few between that I go all out. I call those the F You M.E. days. I’m borderline severe with my ME and when these days come, glimpses of what I used to be like, it’s spiritually liberating, but then maybe those feel good feelings are really just unblocked pathways.
The more I let emotions/adrenaline/stress into my life, the longer it takes to get rid of it (I think my liver is very slow at the process).
So I don’t allow myself strong emotions, whether positive or negative. I’ve gotten pretty good at it.
I allow the emotions intellectually, but if I let the molecules into my bloodstream, I’m in for hours of removing them, far more than ‘normal people.’
I save them, use them to write.
I do meditation type deep breathing to calm myself out of them.
It sucks to have to tamp my own emotions down, but I’m the one who suffers the consequences.
The liver is an interesting organ in ME/CFS. I would study it if a was a doctor.
So would I.
E.g Hepatic encephalopathy produces many CFS-like symptoms.
That is very interesting, Alicia, as it underscores the importance of a mindfulness practice. I’ve observed thst when I experience negative emotions, I can literally literally feel the equivalent of a faucet turn on in my central nervous system as some pain inducing (or pleasure negating) substance floods my body — for lack of a better way to describe it. It’s a completely somatic experience, and unless I can “tamp down” the emotions, as you say, the levels of pain with fibromyalgia shoot way up.
Thank you for sharing. Luz
That’s well said and it’s my experience as well. One of the strangest things about these diseases for me is the physical effect that even little stressor can have. They don’t necessarily rock my world but they effect me physically and they didn’t use to. Mindfulness does help. Anything I do or take that makes me stronger helps so some supplements help as well. Pacing helps of course. ..Giving my system a change to relax helps.
It’s always a judgment call when it comes to the decision about whether or not to exercise, when and what form, for how long. For me, personally, I feel like a million bucks after a good workout in the pool, but I don’t lap swim. Too repetitive. Water walking and gentle aerobic exercise interspersed with stretching works wonders. So I know my feel good pathways can function just fine.
Since I have had Fibro since AT LEAST age 13 and perhaps earlier, I can’t say I even know what the runners/exercise high is.
Many people have described ME/CFS like having a terrible hangover or flu. ME/CFS sounds and feels a lot like, what people experience, who are going through opiate/drug/alcohol withdrawal, except it’s 24/7. The deficiency of dopamine/endorphins produces the syndrome of intense suffering known as withdrawal. Flu like symptoms; feelings of malaise; joint/muscle pain; problems regulating body temperature; anxiety; agitation; insomnia; nausea; irritable bowel are signs and symptoms of both conditions. And, since I believe that ME/CFS is linked to dopamine/endorphin depletion (much like Parkinson’s Disease) and an inability to restore sufficient levels of these neurotransmitters in the brain, anything that causes a further depletion (exercise, stress, aspartame etc) will only make ME/CFS worse (running on empty). That is why it is so important for people with ME/CFS to pace themselves, or they will find themselves crashing (no dopamine/endorphins; no brake – immune system goes nuts; into overdrive).
That is how I diagnoses myself 30 years ago when there was no internet and I was at a loss as to what was happening to me when no doctor could find anything wrong.. I was telling people it felt like a bad hangover and a friend of mine saw something about “Chronic Epstein Barr Virus” and a patient in the story described it like having a hangover. So I found a doc that did the test and declared I had it.
Even though it didn’t really mean much as it turns out at least my family who knew me and knew something was wrong had SOMETHING to say I had. I will always be grateful that it only took me about 5 months back in the dark ages to get a quasi diagnosis all due to the word hangover.
I will add that so much effort went into getting me more energy and a stronger immune system but that always backfired for me. It was the things that calmed me down that worked the most and gave me real energy and brain power even if fleeting. The best day of my illness was after I went under anesthesia for a minor procedure, I felt GREAT the rest of the day. I felt like me for the fist time in years it was so weird.
Same for me Jamie, it was the things that calmed me down that made me feel better also, giving me energy and clearing my brain fog. Anything that boosted my immune system only increased my symptoms of malaise.
So glad you were able to get a diagnosis so quickly. It is interesting that you felt so much better after anesthesia. I recently took propofol for a colonsoscopy, and when I woke from that I felt better than I have since I got sick with CFS/ME 28 years ago. The feeling only lasted a few hours, but it was wonderful to be reminded of how it feels to actually have rested. Other people I know through an online support group said the same thing about propofol. I would love to see some good research done on the effect of propofol on people with CFS/ME.
I felt that boost after propofol for colonoscopy, twice, though I also noted that when the boost stopped my emotions really went low. I also wondered if part of the boost was created by the need for IV-saline, needed each time because the prep left me so dehydrated. Did you also receive IV-saline? I don’t mean to steal your thunder, just to ask if they might be working together.
Ditto and yes and I’ve had numerous weird experiences like when I recovered from being very sick one time, I had one day where I felt absolutely wonderful. Like I hadn’t felt in years. Then it was gone. So is it due to inadequate transmitters (dopamine, serotonin, etc) or is this due to immune system failures or something else? So frustrating to live like this.
The ‘good feelings’ and ‘runner’s high’ I still have. My body and mind LOVE the feeling of exercise until I’ve gone WAY too far (which isn’t very far at all, after 23 years of this). When I’ve overdone big, my lactic acid overload is so great it’s like being poisoned – massive nausea and headaches, my whole intestines are awash, all my bodily excretions burn and smell acidic, and my sweat is so acidic it leaches the colour from any clothing I can stand to have touching my skin. It’s REALLLY not worth experiencing that temporary ‘high’ with those after-effects.
Likewise, when something good happens from ‘outside’, ie I sold a story or book to a publisher, someone surprises me with a lovely gift or thoughtful deed – the good feelings are just TOO good. They destabilize my entire adrenal and hormone systems, exhaust my heart reserves and burn through way too much ATP too fast. I have to moderate the emotions downward with St. John’s Wort and a tiny bit of Seriphos daily.
That combination also takes the edge of the catastrophe-cycles I used to get into, and lets me solve little problems instead of panicking about them (I have to talk myself through each step, but at least I am not talking myself OUT of doing those steps, so things get done eventually). Living fairly ‘flat’ emotionally kinda sucks, but it’s the only way to stabilize so I can get any productive mental and physical time; otherwise I just exhaust myself trying to manage the emotions and the physical/biological consequences.
So no, I don’t find this particular research reflects much about my condition at all.
That’s an intense reaction to exercise. On the whole, though, I would say that my condition is similar to yours. I do feel better when I exercise – at least the first time – and then pay for it big time. In fact I used to exercise – feel crappy and then exercise to feel good for a short period – then feel crappy for a longer period, etc. Each little bit of exercise cleared my symptoms up for short awhile only to have them coming roaring back.
I don’t have the sweat leaching colors out of my shirt problem. I wish somebody could get you into a lab and test your sweat!
I think you’re absolutely right though. It’s not simply that the good feeling pathways are blocked – the system is also very unstable – not resilient. I have found to my chagrin that I too share that tendency toward catastrophic cycles and talking myself down does help.
do you know what would cause not only that NO feeling but the scraping that a neuro does on the foot bottom of the foot when it does NOTHING? nothing happened and I would love to know WHY? the foots supposed to jump, not play dead!
I have mixed feelings about this theory, at least for me. Being extremely fatigued causes me intense, diffuse pain. I have plenty of motivation, feel pleanty of emotion (positive and negative), feel horrible mentally and physically if I am too fatigued to exercise. So for me too much physical activity and exhaustion cause pain, but I am highly motivated to exercise and about life in general. Fasting makes me feel horrible. I cannot go without food.
I do not doubt that inflammation is a big cause of pain for me. I tried LDN but had side effects and had to quit. I would like to try cannabis at some point as I know it can help with pain. I do not look forward to getting high, however, as this disease causes an unwelcome altered consciousness all by itself.
I have trouble fasting as well – I think it would kill me if I really did a good fast.
My experience with medical marijuana candy is that it can give you a high if you take too much – a pretty good high – but that the right amount wipes out the pain and the arousal leaving feeling clear mentally. How about that!
someone gives me a present, I feel NOTHING, I order something that comes through the mail and I feel NOTHING when it arrives! several yrs. ago I got stuck in a restaurants restroom and just sat on the floor waiting for my sister to come for me but I was in there a LONG time, EMOTIONLESS! if I was MYSELF, I’d pound on the door like crazy!
once, I was almost KIDNAPPED because I couldn’t speak up!
I wish I knew WHAT can help us?
I have nothing new to add. Just wants to say this is precisely my experience. Anxiety and stress, even good stress, makes everything worse. I am recovering now from the hangover of my daughters wonderful wedding. But I had to, wanted to, push through the warnings to slow down.
I love to read comments here. So validating.
Yes, I agree – exciting news – good things happening – also has an impact. Not as bad as negative news or views but it’s still a bit too much! Very interesting!
Any stress of any kind makes me worse too and I am under constant stress I can’t get control of, primarily because I’m too sick to do so and have no help from anyone. Does anyone have any solutions? I’m actually thinking that I may need to move into a nursing home if I can afford it. But I don’t know where to begin and everyone would think I’m absolutely insane, more so than they already do, because I look “fine”. To me, I know my ” fine “. I haven’t looked that way in years.
As a psychologist, I would suggest you find a clinic or private practitioner if you have insurance or money. Stress or anxiety are very much more easily helped than the FM or ME symptoms we have. Good luck.
hi steve, yes, even laughter makes me ill, exhausted, weak or even sneezing once or twice so seeing a psychologist would do nothing. I don’t know where to go or what to do as well! sure wish I COULD be of help!
Try Dr. Herbert Benson’s Relaxation Response…breathe in and out slowly and deeply. Pick a one syllable word, with spiritual or positive associations for you, and say it, even just in your head, as you exhale. If any thoughts arise while you focus on your breathing, ignore them and let them drift away. Start a minute per day in AM and PM, I won’t suggest how many minutes to work up to or you might expect too much of yourself too fast. Lots of good research data to show this decreases stress and has numerous physiological benefits. Sit in chair so you don’t fall asleep. Good luck again.
oh, stress is NOT my problem as I can’t RESPOND to things when they happen, I’m like TOO relaxed, too chilled out here!
someone sets off fireworks and I don’t even jump while everyone around me jumps!
Well, we know what free advice is worth so I will abstain from further suggestions on this.
steve, what you say is helpful for everyone here so keep on coming and helping! just because i’m one of those severely ill isn’t a good enough excuse to not suggest anything here, ok? God bless you! hope i’m making sense!
Please don’t abstain from commenting. I am so sorry!
🙁 I read as many comments as I can and have tried a zillion things over the years on these forums, including deep breathing, mindful meditation, etc.
If I can, I will try anything and everything. I just meant that in some aspects of life, certain things don’t work.
We all know that if they did, we would all be in perfect health, right? I cannot imagine anyone wanting to feel as badly as some of us do.
I wish I had done a lot of things very differently years ago, cause I think I might not be as bad, but there’s no way for me to know, of course.
Please, Steve, don’t stop sharing. Things that don’t work for some people will work for others. We all know that. And I have no doubt that a lot of your suggestions do help and would have helped me early on in my illness. I’m almost sure they would have. Again, I am so sorry.
No one should feel that they cannot contribute. Mine was just one comment about one person’s experience. Sounds like all of you are doing far better than me and that is so great. It makes me happy and gives me hope.
And hope is a huge thing to have.
Thanks, Steve. Your suggestion came at the right time for me. The stressors won’t change, but I am learning to sit with the situations, accepting my feelings of reactivity with more compassion.
I think you are probably on to something there. Remember, I’m just a small-timer with big time pain like most here but I’ll share a few more thoughts. I’m actually the world’s worst complainer, with my wife absolutely tired of hearing about FM pain. A few times I’ve groaned in the local supermarket, prompting folks to ask if I’m ok. I’m embarrassed to say that, at one level, I liked the acknowledgement but, of course, at another level, that’s just not a good way to get support! Every day I look my the Page-A-Day Zen Calendar ( no financial interest LOL) for a perspective, well worth the ten bucks a year I spend on it. Unfortunately, I forget them after pondering the imponderable for a few minutes and, since I hate to throw them out, have drawers stuffed with old sayings. The one I do remember and think of frequently though, is “chop wood, carry water”. I also saw a PBS documentary folks might find at their library on DVD called Ram Dass: Fierce Grace. Ram Dass, born Richard Alpert, was a Harvard psychologist with Tim Leary in the 60’s who experimented with lsd. Harvard threw them out but they each went on to become somewhat gurus. This DVD describes Albert’s coping with a massive stroke in his old age, still alive. He called it a gift. Oddly, several months ago when I briefly took yoga, my teacher also asked me if there was any way I could start thinking about my FM pain as a gift. I have a few simple ideas anyone would have but am not sure I’m going to evolve to that level of being. My guess is that, in addition to the daily difficulty of just coping, those of us with chronic pain start wondering about meaning and life. I will note that a pain management specialist, horrible doctor, who fired me recently for failing all meds, had absolutely no interest in thinking with me about issues we think about daily. After running me through a few algorithms and protocols, it was “suck it up and get on with your life”. But maybe the zen folks will help us keep perspective and enjoy the ride.
I really appreciate all that. And I know that it’s not an approach for everyone; it’s a perfectly normal response to say “this is in no way a gift!”
I also appreciate the slippery slope it is from a kind and insightful person asking you/us the question you got in yoga–about the gifts that may come with this pain–and someone else who thinks they’re being kind when they ask, from a New Age perspective: “what are you holding on to that is keeping you from healing?” or “what are you avoiding by staying ill?” The yoga instructor was encouraging you to live with gratitude, even found in unusual places. They are empathic, they are with us in our life path. Your yoga teacher also let you lead, another sign of empathy. The others are blaming us for our illness, suggesting we’re not approaching it right, that it’s in our heads. That kind of blame can also be wrapped in a similarly seeming “care package” of: “you just need to pray more,” or “God doesn’t give you things you can’t handle.”
I would be so very open to a mindfulness/based MECFS group.
I’m familiar with mindfulness but have never been in a group. It could be good.
I don’t think stress or anxiety are always helped. I have had a terrible run of bad luck for the last 8 years or so where I could not find one honest repair person or contractor (including with the local government), couldn’t afford to spend any more money on the ones I did find who continued to try to rip me off,am still struggling with how to deal with a car that is relatively new with low miles that the dealer and mechanics can’t fix, spent thousands in savings on treatments that didn’t help, have had to give up a beloved pet and have had to move back in with my mother who is 30 years older because she is in better physical health than I am. So the illness itself and the resulting life has caused the stress.
I have been seeing a psychiatrist who tells me she has no idea how to help me because she believes in ME/CFS. She has me on meds, but they cannot solve these issues.
So having some money and insurance doesn’t always help. I actually need people to help me and there are none of them around.
Nor can I keep going out and spending what little money I do have repairing and replacing things that keep breaking down.
All of that stress makes the symptoms worse.
I don’t know what everyone else’s situations are like, but I’m sure there are many homeless with no money at all and no insurance. They aren’t online, of course, cause they can’t afford to be. They are the very worst amongst us. I wish I could scoop us all up and have us live together in an ME/CFS group home so we could all help one another.
That was my dream the first and second times I recovered. I’ve never recovered in the last 7 years.
i have been thinking that the reason that i feel happier when i take cbd is because it lowers my inflammation so much, but now i’m thinking it might actually be affecting my brain without my realizing it.(not high-just happy 🙂 )
I took LDN and felt wonderful for 2 months but at VERY LOW dose but lost at cbd? sorry, that darn dementia from M.E. is terrible! thanx!
what can we take for the DEMENTIA everyone?
I’m having great results with ginko biloba. I stopped for a while to see if it would make a difference and within days I was so thick headed and foggy that I couldn’t stand myself. I resumed taking it and it cleared right up. I suspect it might have something to do with it’s ability to aid blood flow… better for brain function. I’m not ‘normal’ but it’s better with it than without it.
cbd is cannabidiol. it is from hemp/cannabis but is not the same as thc. thc will make you high,cbd will not.it lowers inflammation.i noticed that pro health now sells it but there are sites that are cheaper. as for dementia i have found a supplement that helps me but it is multi level marketing so i don’t think i should put the name here. do a search for nrf2. there are lots of articles on it now.
Does anyone know if it is a legal product in Australia
The problem with sugar tablets is that the sugar is just empty calories, providing no nutritional value, not to mention that sugar is addictive. One of my favorite “easy” meals was honey nut cheerios, many years ago. It gave me a temporary boost after working all day, but I would crash in short order, and be semi-comatose on the sofa. Indulging in a bag of chocolate candy was even worse, naturally. Over the years, it edged me towards pre-diabetes. We’re talking big trouble with type 2 diabetes, which fortunately, I have avoided at this point. I eat no sugar now and plenty of low carb vegetables and protein, eggs, cheese, whole grains and low sugar fruit. It works long term, is highly nutritious and provides even energy, and helps with sleep too. The fiber in the vegetables is essential for bowel function.
Hi – I too have had to be very careful with ingesting sugars. Even two hard candies in a row throws off my blood insulin response – ramping up fast (which feels great for five minutes) followed by a low-bp trough with headache and brain fog.
Worst still is that the insulin swing triggers my body to convert the next few batches of calories from all sources directly into fat under the assumption that food must be scarce to leave un-used insulin in the blood (same reason why Type-2 diabetics gain weight). With the nutrition being thus diverted, I feel starving and cranky and have no energy for doing anything.
So, a bad move for me. I never eat sugars, or any carbs, without a bit of fat or protein to slow down the sugar absorption and give the insulin something else to think about.
Very wise Jayne! Way to go!
This an interesting little study I got today, mentions probiotics, discussed on an earlier thread. This particular strain is in the brand I take, can’t say my mood is that great but maybe it would be worse!
I’m in need of LDN. Having trouble finding a physician to prescribe it for me. The integrative medicine physician I see might if I can educate her about LDN. If anyone could please message me links to articles re LDN that would educate my physician, please do so. I haveca couole of good ones. Will search PubMed too.
I’m also on Facebook, https://www.facebook.com/innergardenpath. You may message me there also. Thank you.
I ditto what so many of you have said here. My experience is also that mindfulness is an important tool to have in my personal “resource toolkit”. Unfortunately,after moving to a higher altitude, I became much worse for 5+ years. I’m better again yet altitude and season changes are still a challenge.
After I was diagnosed with FM in the early 90’s and Cort brought us ProHealth, I found D-Ribose. It was written up in an article posted by Cort. D-ribose saved me. Then came Curcumin BCM-95, another great thing that worked for me.
Becwrll. Be happy. Smile often. ~♡~
MOOD, what MOOD? i’m not anxiety ridden, i’m emotionless! maybe my body THINKS its stressed but really, i’m dead to the world! I hear a noise and instead of acting upon it I ignore it which of course isn’t what ANYONE would do! its like M.E. took away my emotions OVERNIGHT when it hit!
I don’t JUMP anymore when everyone else does! :>( I used to.
Tamping down of emotions can be a side effect of mood altering medications. It can also be due to trauma.
Very interesting comments.
The good phases and bad phases thing really resonates with me.
I wonder if others have kept a chart/graphical representation of this type of thing?
I have played with a simple line graph- I put days on the horizontal axis and a score out of ten on the vertical axis.
(Where 10 would be ‘normal’ (ha!!!!) and 0 essentially dead)
Each day gets a score out of ten, based on level of symptoms that day…and I annotate the graph with any particularly stressful life events etc for more context. This way after a period of time you end up with a bit of a line graph to see if there’s any pattern.
For me, I was fascinated to note there is a semi-predictable pattern. Of course, if I exercise too much or have a few alcoholic drinks I know this will wreck me….but with external variables kept relatively constant, I noted there is some sort of recurring cycle of a better patch (say 6/10) followed by a rotten patch (say 3 or 4 out of ten). These patchers might last around 8-10 days each. Every now and again (maybe twice or thrice a year, there is an utterly horrific patch (2/10) where I’m essentially crippled… and occasionally there is a (magical) much better patch…perhaps more like 8 out of 10. These are good, but pure torture…(as I’m sure most know all too well)…as they give a little glimpse of what life was like before the endless (19 years now) hell started.
To me, it’s evidence the system is in a fundamental state of dysregulation- I absolutely agree with there being a dopaminergic issue (all my experimentation has been consistent with that idea)..but finding sustainable treatments (again- I know I’m preaching to the converted!) has eluded me. I also suspect the OI/Pots I have, whilst being yet another ‘downstream’ symptom, may well be the most functionally incapacitating thing. Since being forced to move to a third floor apartment (something I knew was an awful idea, but really I was out of options) that side of things has been even more noticeable.
Just wondering if others have tried charting to see if any patterns emerge?
For me, the pattern is – assuming I can survive the OI and heart-function effects long enough to overdo the physical exertion – I’ll have the ‘poisoning’ crash 46-48 hours after the physical exertion. It will last for between 24 and 72 hours if i treat myself really well, and much longer if I am exposed to other stressors like chemical odors and viruses during this vulnerable stretch.
For mental exertion, the effect of blankness starts within a few hours and sometimes restores with a night’s sleep. Sometimes it doesn’t begin to restore until after my twice-weekly B12 injection.
I just notice nothing different whenever I do NOTHING too! take it easy and still pay BIG time! I am SO afraid to wake up mornings now because mornings to about 3pm. are my worse, feeling so awful, dead drunk, poisoned, disoriented, brain exploding, balancing problems etc.!
I thought of drinking BUT they say we can’t drink with M.E. but its getting mighty tempting! I just can’t take this M.E. anymore!
I started charting years ago but it got too complicated due to external “unknowns” like possible exposure to a virus, injury to my hand, etc. interesting to hear from someone who actually did it. I knew there would be a pattern but wasn’t convinced I could do anything about it if I did find a pattern
Yes, I’ve been charting.
Initially it was because I was convinced there was a pattern which coincided with my menstrual cycle. I went through 8 IVF cycles in total to get my kids – now 6 and 2, and the ‘proper’ fibro started about 6 weeks after the birth of my first. A pain specialist told me that reproductive hormones control neuro transmitters, and that all my messing about with them had caused my dopamine/serotonin/norepinephrine to be messed up. It made sense at the time, since I remember vividly after each failed cycle when i would tear the estrogen patches off my stomach, thus plunging my levels down much faster than nature would normally do it, experiencing intense muscle pain and fibro symptoms. Same when I put them on and estrogen unexpectedly rose. At the time I had no idea what this was.
Anyway – I did find a correlation with the cycle – usually three great days at the beginning followed by a week or at least five days of hell. But what surprised me was that nothing – I mean absolutely NOTHING I did or took had any effect whatsoever on how I felt the next day. Drinking alcohol two or more nights consecutively was the only tiny exception, but that puts my husband flat on his back too and he’s as fit as a fiddle. But I can rest all day and go to bed at 9 with a camomile tea and wake up a total mess, and I can have two glasses of wine and a bag of cheerios, go to bed at 1am and feel relatively ok the ned day. it’s completely unpredictable which is SO frustrating (as you all know) because it’s impossible to plan anything.
Hub keeps begging me to go to an endocrinologist. But every single person I know who’s been to an endocrinologist hated the one they went to! I can’t find a single positive reference. What is it about endocrinologists?Anyway if anybody knows a great one in Los Angeles please let me know!
My pain gets progressively worse through the night. I am up at least 6 or 7 times and nothing seems to relieve it. Even when I do sleep it is fitful and very light due to the pain. I often wake feeling like Iing on to something, with my muscles activated as if I’ve been doing some physical task. For me I haven’t slept an entire night for over 34 years with the birth of my first child. I feel chronic insomnia may have led to this condition. l also find l am up more having to wee during the night when my flare ups are worse. Any ideas?
The less deeply you sleep, and the more often you wake up, the more your hormones get thrown off, including the anti-diuretic ones. So yes, you wee more when you aren’t sleeping well. Excess wee can throw your electrolytes out of balance (sodium, potassium, calcium and magnesium) which can make inflammation and pain worse. Interestingly, our blood volume is so often low that our blood electrolytes test normal – for THAT amount of blood, not what should be there for a person our size. As if we’re trying to run a 6-foot tall body on the blood supply (and electrolytes) for a 4 1/2 foot tall person.
My solution was 3-fold: 1 – got a sleep study and treated for Central Sleep Apnea (brain stops sending ‘breathe’ signals so body wakes up in a panic); 2 – got an anti-diuretic spray for bedtime (like they give kids for bed-wetting) to let me stay in bed longer at a time whether I was sleeping or not, so inflammation could be dealt with better; 3 – get IV electrolyte replacement once a month to get magnesium & calcium into the muscles where they can directly relax the muscles to lower pain.
Added to that, I try to take a warm bath or shower before bed to ease the relaxation as much as possible, and avoid bright lights or computers for a couple of hours before bed to maximize my brain relaxation.
If any of these work for others, I’d be interested to know.
Thanks Jane, a couple of questions. Are anti diuretic sprays sold over the counter or do they need a prescription? And what is an electrolyte replacement? I do take quite a high does of a very good magnesium from my naturopath, it however doesn’t seem to make any difference.
Anti-diuretic sprays are prescription only. You can tell your doctor about getting up several times a night and that Diabetes Insipidus (DI means lots of urination in absence of infection – nothing to do with the other Diabetes) is common with ME/CFS.
Electrolyte replacement is also called Oral Rehydration Solution, a balanced mix of sodium, glucose and generally other trace minerals, with some Vitamin C to help it all absorb through your stomach lining easily. You can buy it in pre-mixed sachets or as liquid in pharmacy departments, or make your own as I do, from the World Health Organization recipe.
Not everybody needs the amount of calcium and magnesium we do, so there’s not much (if any) in the pre-mixed stuff. I add a quarter tsp of a powdered mag-cal citrate to my 1 quart jug and keep it in the fridge during the day, drinking a bit after each time I go to the bathroom.
Thanks so much for the reference to the WHO recipe. I can’t find it on their site. Would you kindly share it please?
More information on the mag-cal citrate would also be very welcome.
I can only find the following on the WHO as a reference.
“Ebola patients need to drink water and litres of Oral Rehydration Solution every day.”
“If you do not have Oral Rehydration Salt at home, you can make your own. In 1 litre of clean water, add 6 teaspoons of sugar and 1/2 teaspoon of salt. “
Yeah, that’s the basic one, a straight fluid and salt replacement for high loss of fluid. If you’ve ever tested low sodium, or if you crave salt and have generally low blood pressure, you can double the salt with no problem.
If you think fluid loss might be an issue for you, you might want to try one of the pre-mixed ones from the pharmacy section first, to see if it makes any positive difference, and then switch to a home recipe to continue because it’s a heck of a lot cheaper.
You have to do some digging and calculating to reproduce the pre-mixed stuff at home, and then tweak it with easy-absorbing powders from the health food store to make one that has everything you need. Not all magnesium, calcium, etc is easily absorbed, especially as so many of us have poor digestion, IBS, and other stomach issues, so look for powders, not pills, and citrate forms where possible but definitely not oxalate. Small amounts of Vitamin C help it all absorb better and work better once it’s inside your body.
hi, I keep childrens ELECTROLITES here all the time because I have stomach flu twice a yr.. you buy it in bottles or little tubes in plastic placed in freezer to make it pop up and enjoy like a popsicle. I always find it in the childrens/baby section at Walmart when I thought it would be with medications. oh well, hope this helps!
Thanks again Jayne.
Thanks again Jayne.
Cort, I just happened to check in to my LinkedIn account and saw this article I had missed. Great article! I tried reading all the comments but my poor brain had to give up. Living here in NY State, when I see a doctor about my pain, it’s like “well, let’s assume you’re an addict and not even give you anything that might really help.” I asked my rheumatologist about the possibility of LDN. “Oh, no, I don’t ever prescribe that!” said she. Early on in my CFS and fibro illnesses in Houston, I was sitting with other patients getting a weekly gammaglobulin drip. Anyway, I mentioned to the woman next to me “I don’t FEEL anything deeply anymore…don’t know how to describe it.” To which she immediately responded, “No joie de vivre.” Obviously, she understood that well. Thanks for this article with lots of good info about all those brain chemicals we don’t have much of anymore. Judith
hi Judith, I know what your NOT feeling! no one gets it though and when I told my sister how I didn’t FEEL anymore, she pinched me and I jumped and she said See, you can still feel! how hurtful people can be when they don’t understand its EMOTIONS we no longer feel! I remember getting my 1st computer. I felt NOTHING when I should have been HAPPY! almost 18yrs. of NOT feeling, emotionless as I put it. I wonder WHEN we’ll FEEL again! going through life without the FEELINGS we need is lifeless! I tried LDN and felt so much better overnight but then 2 months later it stopped working. I learned I have to start at a VERY low dose like 1.5mg. see, if you can get it and try it. if only I could REMEMBER, i’d ask my new dr. for it again. its worth a try!
I thought LDN wasn’t working for me until I ran out about 5 days ago. Now I know it did work a tiny bit. But how do I get it to work more or better? Any ideas?