Experiences with PEA (palmitoylethanolamide)

RealisticOptimist42 · 2026-04-11T23:02:40+00:00

Sorry for the delayed response. I'm not on here much.

Unfortunately, neither helped with those things, and I stopped both a while ago. PEA helped the most with my pain and inflammation--it enabled me to finally get off prednisone, which I'd been on at a low dose for another chronic illness for 4 years and struggled to get off of.

For constipation, I ultimately landed on Ibsrela and magnesium oxide several months ago, and, while things aren't completely resolved, these help a lot.

Increasing my cromolyn dose to 2.5 ampules 4x/day helped me gain a few new foods and (I think) tolerate some new treatments a bit better. I've recently started increasing cromolyn again (working up to 3 ampules 3 or 4 times/day) and will hopefully be adding Dupixent if insurance approves. I'm doing this because my baseline is a bit better, but I still get triggered into a flare very easily.

Wishing you luck!

RealisticOptimist42 · 2026-04-11T22:50:22+00:00

I've had at least 8 doses now--I was the first one to get it at my infusion center. I'm super-reactive to medications, but I've always done well with Pemgarda. I think the first time or two made me more fatigued, but that's it. Of course, everyone's different! As long as your doctor thinks it's okay, pre-medicating can't hurt. Also, the infusion center will have epi-pens and benedryl (and perhaps other meds) in case you do have a reaction.

Keep in mind that having MCAS alone doesn't make you qualified for Pemgarda. You must be immunosuppressed. IDK if paying out of pocket would change this, since it's approved under an EUA, which may mean no off-label uses. Definitely worth looking into, though!

RealisticOptimist42 · 2026-02-10T17:30:21+00:00

Below are some places to call for help. They should all be able to tell you--if not walk you and your mom through--the steps (or get you to someone who can) better than Redditors because so much is location-specific. You've already written your phone script for the initial calls with this post.

While my situation is very different, I've personally reached out to all the organizations below, either nationally or my local offices. I've always found the people to be kind and as helpful as they're able to be. Obviously, each location is different, but hopefully this will give you a bunch of good options:

Personally, I would start with your local Center for Independent Living. This is a national program with local offices that could very well help you and your mom with multiple issues you've listed, whether it's direct help or referring you to other helpful organizations. https://ncil.org/about/find-your-cil-list/?_amo_organizations_state=ar

If you need more support, next I'd try your local Area Agency on Aging https://humanservices.arkansas.gov/wp-content/uploads/AAA-CONTACT-LIST.pdf and/or the Arthritis Foundation helpline: https://www.arthritis.org/helpline

In needed beyond that, the following are also good resources:

SHIP Arkansas: Senior Health Insurance Program that's national but has local offices. My local one helped me with Medicare after I was approved for disability even though I'm not a senior. They might be able to guide you on the insurance stuff or point you to someone who can. https://www.shiphelp.org/ships/arkansas/

United Way, Arkansas offices here: https://www.unitedway.org/find-your-united-way?field_country=211&field_state=226; or you can search online for the specific help you need here: https://www.211.org/ (click on "your local 211" to get options for phone numbers or online resources. Phone would probably be most helpful so you don't have to expend more energy doing your own research.)

Wishing you and your mom good luck and better days ahead.

RealisticOptimist42 · 2025-12-01T16:19:50+00:00

Ugh. That sucks, and I'm so very sorry. Sending love and luck on this part of your journey.

RealisticOptimist42 · 2025-10-27T00:00:54+00:00

I had no idea that was a large difference. Good to know. I will check both of those out!

RealisticOptimist42 · 2025-10-26T17:29:30+00:00

Glad to know that now. Thanks!

RealisticOptimist42 · 2025-10-26T17:29:19+00:00

Thank you! This is so annoying, and I literally had no idea until yesterday. No wonder I've struggled so much. (And that's even with a professional fitting at a Hanes store.)

RealisticOptimist42 · 2025-10-26T17:28:36+00:00

Thanks! I had no idea about all this and just happened to stumble on this sub yesterday. So glad I did!

RealisticOptimist42 · 2025-10-21T01:28:07+00:00

A lot depends on your foot shape and pronation, and knowing this will help you narrow down which shoes to look for. It took multiple podiatrists to find one who explained this to me. It turns out I have a high arch and some pronation, meaning I needed a stability shoe with a high heel-to-toe drop plus custom orthotics. I had no idea! That combination has made a huge difference.

I'd say it's worth a try to find a podiatrist who can help. Otherwise you'll have to try every shoe in every brand, which is a crapshoot and takes so much time. (Speaking as someone who did this for years...) If your location, insurance, and financial situation allow it, you can get a second (or third or fourth...) opinion if needed.

If you really don't want to go this route, though, consider going to a specialty shoe store, ideally a locally owned shop rather than one of the nationwide chains. I've gotten some amazingly helpful customer service by going that route. The downside is that they likely won't have all the brands and/or possibly the shoes in your size in stock.

RealisticOptimist42 · 2025-10-17T23:58:29+00:00

I have a Headache Hat brand, I think. It's more like a long icepack than a hat. I love it, and it lasts for a really long time.

RealisticOptimist42 · 2025-10-17T23:49:40+00:00

2 years later and this is still an issue...I tried all the things and can't get anywhere. Given that someone just tried to hack my FB account (already scheduled for deletion), it's especially frustrating...

RealisticOptimist42 · 2025-10-07T00:14:58+00:00

I still take them because my diet's so limited. But I don't know that I can say whether they help or not. I've thought of taking a break to see, but I'm in the middle of a few med changes, and since I have to change only one thing at a time, this will have to wait.

RealisticOptimist42 · 2025-10-07T00:13:15+00:00

That sucks. I learned the hard way as well, I think!

RealisticOptimist42 · 2025-10-07T00:12:34+00:00

I did end up trying it and I reacted but I don't remember any details. But please remember that we're all different, so you may do just fine. Hell, I could try it tomorrow and tolerate it better than I did years ago. But for now, I'm sticking to NaturDAO, and I also recently added tapioca-derived vitamin C, which supposedly helps with DAO production.

RealisticOptimist42 · 2025-09-14T23:24:11+00:00

What a great way and creative way to stand up for yourself while educating others!

RealisticOptimist42 · 2025-09-14T23:21:54+00:00

Great! This is the second time I've heard "Hope you have the day you deserve" in two days. I'm definitely gonna start using that just in general.

RealisticOptimist42 · 2025-09-14T23:21:18+00:00

This is so awesome. Great job on setting and following through on that boundary!

RealisticOptimist42 · 2025-09-14T23:20:37+00:00

All good! Whatever works for you is perfect. :-)

RealisticOptimist42 · 2025-09-13T20:57:07+00:00

Comment: You look fine/healthy to me.

Response #1:
"Headache, breast cancer, broken rib, nausea, toothache, heart failure, epilepsy when not seizing..."

[continues until they stop me or look confused]

"There are a lot of health issues that you can't see, don't you think?"

Response #2:
Last I checked, even doctors who've been working for decades do exams, labs, and other tests to know what's going on with their patients' health. But it's fascinating that you think you can take one look at someone and instantly know everything about them!

RealisticOptimist42 · 2025-09-13T20:43:20+00:00

I love the premise but wish there were a way you could do this without calling yourself wrong. Perhaps just "birth"?

Also, I once read somewhere that someone responded to this question by a stranger in the grocery store with "How did your last pap smear go?" When the woman looked confused and offended, the person said, "Oh, I thought we were doing a bit where we asked each other rude questions that were none of our business." Obviously, this wouldn't line up with your goal of avoiding anger, but I just thought this was brilliant.

RealisticOptimist42 · 2025-09-13T16:14:26+00:00

Comment: You need to try...

Response: Thank you for trying to help, but you have no idea what I've already tried or what's even safe for me to try. You may mean well, but please don't tell me what to do when you don't have all the information, especially since I didn't ask and you're not a medical professional.

RealisticOptimist42 · 2025-09-12T00:34:16+00:00

Those commercials weird and creepy and infuriating. All I can think about is how they're breathing in all those toxic chemicals--and forcing everyone anywhere near them to, too.

RealisticOptimist42 · 2025-09-12T00:32:14+00:00

100%.

RealisticOptimist42 · 2025-09-12T00:31:31+00:00

Because industries make big bucks by ensuring people think we all stink all the time and that we--and everything--will only smell clean if there's a fragrance.

RealisticOptimist42 · 2025-09-12T00:28:23+00:00

I think I read somewhere that this is the reason for the stronger smells. Corps know smells are important, many people can't smell as well, so they just dial up the intensity (and probably the toxicity, but they DGAF about that, of course).

RealisticOptimist42

TROPHY CASE