I've been thinking about it for the joint and muscle pain, and as well as I remember from previous research and reading, it's pretty much side-effect free, at least in smaller 300-600 mg doses, since you produce it endogenously as well, .
Too much, too fast, can cause diarrhea, an unpleasantness none of us need to add to the already pretty full dance card, symptom-wise. Other than that, I can't remember anything negative.
I read a couple of good research papers on it, but can't remember if it was on Hindawi or NIH. You might search those data bases when you feel up to it ....
Sorry I don;t have more to offer, beyond that it seems fairly side-effect free. How effective it is against pain, not sure.
Good luck on this, and keep on posting if you decide to trial it ....
I actually commented on that article:
"Just wanted to add my experience here. I decided to give this a try with my 16 year-old daughter. She has ME/CFS with a lot of body pain, particularly mid-back pain, on exertion and even just on sitting upright for any amount of time. I love things like this that have a ton of potential and very few downsides. We live in the UK, so ordered Normast (micronised PEA) from an Italian pharmacy via Amazon UK. She’s been taking 1200 mg/day for a little over a month now and I have to say the results have been impressive. I haven’t heard her complain of back pain for at least two weeks now. We’ve had some days where she’s really pushed herself activitywise. In the past this would have meant a lot of pain over the following days, but she’s barely complaining of pain at all. Fatigue, yes, but not the pain. I am so amazed at the effectiveness of this and so sad that this is not more widely used in the US, UK and elsewhere. What a shame.
Seems to be saying that anything that upregulates the endocannabanoid system in the skin (don’t know if I’m saying this right) would exacerbate acne. PEA would upregulate this. Relatively small price to pay for pain relief, but thought I’d mention as everything says no side effects. Could be particular to my daughter as she's a teen.
Since the idea with PEA is that once you achieve the pain reduction you start to taper the dose, this unwanted side effect should decrease soon. We’re going to lower the dose today. I guess a drug/supplement where you take less and less the better it works is never going to win over pharmaceutical companies even if it could be patented, but I think it’s one of the best things about this."
Okay--so those comments were made about 18 months ago. Since then she's been able to taper off it completely. She finds it very useful to quell an MCAS or even POTS flare, though. She doesn't need to take it for as long a time as she did initially, so after about 3 weeks she can taper now. I love having it in the arsenal.
I will say that since covid and also Brexit the price seems to have shot up. I think that's what puts people off. I wanted to use Normast (Italian) or PEApure (Dutch)as those seem to be legit. I didn't feel confident with alternative products that may or may not be processed correctly or have the actual active ingredient.
I've also wondered if it could be useful for coronavirus. Reducing neuroinflammation at the right point in the disease process could be very useful.
Fabulous, informative, detailed info and post @Celandine, and thank you, thank you, thank you for it.
I'll have to reconsider my recent decision not to do any more 'trialing' of stuff. PEA sounds .... pretty close to perfect. Well, except for the acne thing. But I'm a bit away from my teenaged years so maybe not a current problem.
Thank you, again, and for the links.
It was good to hear that your daughter has seen some improvement, and has a few things to fall back on when the going gets flare-y .... at least in a couple of areas.
If I can ferret out any of my old research, and if any of it looks worthwhile, will come back and post it here.
Since the trustworthy-but-really-expensive brand has proven to be reliably effective, you could try a cheaper brand and see if it works as well. If it doesn't, then you know that the expensive one is worth the price. If it does work as well, then you can save some money, and maybe spend it on treats. PWME deserve treats.
@Wishful Yes, good idea. I have a pretty big stockpile of the good stuff here right now. Panic bought as we headed for Brexit and thought it might be hard to get stuff from Italy. It's a bit of a hard one to try a cheap version because the effect isn't immediate and it's also quite gradual. It takes long enough to kick in that it would become hard to differentiate. If I ever do experiment I'll make sure to add to this thread. Even with the expense, the fact that you taper down once it becomes effective makes it a good bet. Also guarantees big pharma will never be interested in it. Likely why it isn't used much in the US. A real shame as all the studies show good effect in neuropathic pain and allows reduction of pregabalin. Again, likely why it isn't promoted!
I've been thinking about trialling it as well for pain. My mum has been using it for about a year (Parkinson's disease and various back problems). She used to take multiple pain meds including morphine, but they were no longer effective. Her doctor recommended the PEA as a last resort and she now manages her pain with PEA only (and a few heat packs every now and then).
I tried PEA but didn't notice any effect at all, good or bad. I think it was PEACure (capsules) that I tried because it's 100% PEA, no fillers.
Here are some comments I've gathered about people's experiences with it:
*Very useful for pain relief*
PEA (Palmitoylethanolamide), from a comment on https://www.healthrising.org/blog/2...-fibromyalgia-chronic-fatigue-syndrome-mecfs/:
Fantastic News! I have been in extreme pain for about a year (and stuck in bed). There’s been a question as to how much of the pain is CFS related, how much because of degenerative disc disease, and how much might be caused by something like MS. I have been using 3000 mg/day gabapentin and 75 mg/day baclofen (max doses for both). Even then, I was supplementing with small amounts of oxycontin (during the day, especially on days when I got in the shower) or carisoprodol (during the night).
I was still having partial seizures (probably not associated with CFS?) related to the neurological symptoms and pain, and other pain related symptoms. I started to notice a slight but noticeable lessening of pain on about day 6 of emptying the PEA capsule under my tongue. The pain level has continued to decrease!!! Wonderful!!! I haven’t used any more oxycontin and I’ve needed less and less carisoprodol. And PEA works without any “fuzziness”, etc. or a prescription! These over-the-counter things are my favorite! No need to try to convince a doctor that I should try it.
*Calming glia and mast cells*
Note from Jan M Keppel Hesselink · Instituut voor Neuropathische Pijn:
Palmitoylethanolamide, a lipid signaling PPAR alpha agonist, clearly inhibits overactive glia cells and mast cells. We use it frequently in neuropathic pains and it has a very impressive effect in some patients.
From Jacob, comment on Cort's Health Rising article:
LDN and PEA go together, quite good actually for treatment of resistant chronic pain syndromes.
From Jammy88 on PR:
I take it, as suggested by my neurologist. Great supplement! I buy it on PeaVera.com and I take 2-3 capsules a day, depending on how I feel. Each capsule is 400mg. It mainly eases my neurological symptoms (paresthesias, etc). It's also indicated to ease fibromyalgic pain.
I started taking it in October and have been pretty constant for the first 3-4 months. Now I take it a bit less frequently, so yes I guess what is said on the website is correct. Then I believe it depends on the person.
I think PEA will help with neuromuscular pain, as it is very effective in reducing neuroinflammation - which is a very common issue for the all of us on PR.
From NK17 on PR:
I've taken Normast (PEA) this past summer apparently with no real benefit.
From hixxy on PR:
Gave me weird brain side effects but I can remember the specifics as it was a about 3 years ago now. I didn't take it long enough to see if it would help in other ways.
*Top 5 worst supplements*
From nandixon on PR:
I tried PEA a couple years ago (to inhibit microglia activation), and indeed it was very bad. I normally don't have significant brain fog but the PEA I took actually caused that. It was very insidious too. Probably one of the top 5 worst supplements I've ever taken.
The above varied responses re PEA puts me in mind of Truman's famous outburst after listening to several economists spouting endless "On the one hand ....", ".... but on the other hand ...." analyses.
As the last economist left the Oval Office, Truman slammed his notes down on the desk in exasperation and shouted to no one in particular, "Will someone please find me a Goddamned one armed economist?"
It's so much easier when everyone says "Hey, it's great !!! Cured me of everything from ME to chronic shortness, can't recommend it highly enough ....".
But that would be in a different reality zone than the one we'all inhabit...
I tried PEA for my MCAS-like reactivity. I say "MCAS-like" because none of what you'd expect would help MCAS actually helps me, and also because I haven't officially been diagnosed with MCAS. That said, my response to the PEA was terrific, perhaps a 30-50% increase in functioning and well-being. Sadly the benefits disappeared after a few months of daily use. I had the exact same thing happen from taking perilla leaf, and then from wormwood as well. The former is said to also help people with MCAS. What's the explanation as to how these helped me and why they stopped? Lots of guesses, but I don't know.
Interesting, since perilla has a benzaldehyde similar to cumin, which was so useful for me. I wanted to try perilla, but the effect from cumin at that time wore off (after a few weeks of daily use) before I could get any perilla (not readily available in small towns). I wonder if cumin (cuminum cyminum) would have had the same effect on you as the perilla. My guess is that if it would have, it wouldn't after the perilla stopped working.
Did you ever try prednisone? It gave me the same effects as cumin when I first tried it, and then stopped working.
Have to say I use pred when I need a boost. Works well for me but I don't like to use it too often - both because I don't want it to stop working, and because I know long term use of steroids isn't great for the body.
There's a lot to be worried about, that's for sure
Fair enough, I wouldn't want to be taking it either if I had that kind of history with it.
I always have it in the house for asthma that goes from asymptomatic for months, then severe within the space of 2 or 3 days. Can never get into the doctor in that time frame so have been self medicating for years. I don't like taking it, but it's the only thing that knocks the asthma on its head, and it got me through some pretty bad crashes too.
Can never get into the doctor in that time frame so have been self medicating for years. I don't like taking it, but it's the only thing that knocks the asthma on its head, and it got me through some pretty bad crashes too.
You're doing it in the most responsible way possible, and for the most valid reasons .... if it does the trick, it's an essential.
At least that's the way I feel about whatever makes me feel better .... I remember the shock and horror over my dosing protocol with mag glycinate and the daily amount I was ingesting. I didnt care. None of them were at the ER with me when I thought I was dying of a heart attack, so screw 'em .... with all due respect.
Each of us have found our own personal copes .... they may not be the Holy Grail, but they get us part of the way there, and sadly, that's what many of us have to settle for, for now.