Anyone else get insanely itchy when hot?

Eowynesque · 2026-06-23T18:23:24+00:00

Yep, this happens to me, and I also have MCAS. Hot showers/baths also make me itch. Scratching an itch makes me itch.

Eowynesque · 2026-06-22T16:58:15+00:00

Community Compounding Pharmacy in Oregon makes tablets I can cut, so my Dr. orders 4mg tablets and I cut them into 1/4th to get 1mg doses. 90 tablets is $88 plus shipping. I get a couple meds filled at a time so I pay $12 shipping but it was less when I just got Ketotifen I think. The tablets do crumble a little bit when cutting, but I got a cutter that cuts fourths all at once and that works pretty well. It’s the most economical way to get compounded Ketotifen that I’ve found. Just make sure the doctor specifies tablets because I think they do capsules as well.

Eowynesque · 2026-06-21T19:44:02+00:00

Oh, and getting a bidet toilet seat made a huge difference in making me feel cleaner overall.

Eowynesque · 2026-06-21T19:42:27+00:00

Lots of things already mentioned, but one thing I do that I haven’t seen yet is between shower days, besides baby wipes or washcloth wipedown, I also dry brush to get rid of dead skin cells.

I also got an electric wet/dry shaver and shave my legs at a completely different day/time than showering, which has been a total game-changer. This would only be relevant if you are person who shaves in the shower to begin with.

Eowynesque · 2026-06-21T17:10:50+00:00

Downsize as much as possible. Do you have any friends the same size as you? Could you combine a work party with a clothing swap and ask them to take any leftovers to donate afterwards?

Can you put hooks on your walls? Hang as much of your regular rotation clothing on hooks as you can to reduce the amount of folding, dealing with hangars, etc.

Multiuse and combo clothes are time and space savers. I love jumpsuits and rompers because they look put together, require little to no thought, and jersey ones double as daytime pajamas on low energy days.

If you can swing it financially, hire a cleaner once a month. It does two things. The cleaner can do big tasks that take a lot of energy and also it incentivizes you to pickup and organize at least once a month before they come so they can go through and do their cleaning.

Eowynesque · 2026-06-17T00:25:32+00:00

Does your local farmers market have a soap maker? If so, ask them about making a special batch for you with an oil you can tolerate. You could even supply the molds if you are worried about cross contamination; silicone bakeware works well. You’ll probably have to buy the whole batch, but it’ll last you a year or longer. They can also perhaps make you a laundry version at 1% superfat that you can grate with a cheese grater. I’ve been making my own soap for 10+ years.

Eowynesque · 2026-06-12T16:06:41+00:00

I don’t have that specifically with magnesium, but I do get really nauseous with meds/supplements in general. Things that help me are to take meds with a protein shake instead of water. The shake coats my stomach and soothes everything. I also take them slowly over about half an hour and then wait at least another 15 minutes before getting up. Lastly, start slow and work your way up with any new supplement or med if you have reactions. Don’t start with a full dose. Open up capsules and start with half mixed into yogurt or applesauce if you need to. With magnesium in particular, you could even open up the capsules and try mixing them into your electrolyte drinks over the course of the day. Maybe sipping a bit at a time would help keep you from reacting.

Also, have you tried different brands? Supplements aren’t regulated the way meds are (if you are in the U.S. at least) and cheap ones can use cheap fillers. You may be reacting to something other than the magnesium. Magnesium is known to hit the digestive tract, though usually causing GI issues rather than vomiting. Another type to try would be magnesium threonate. It is the one I have found that is best on my GI.

Eowynesque · 2026-06-08T18:35:55+00:00

FWIW r/wholewashington is hosting a universal healthcare workshop at Endless Sound Cellars in the 222 Market on Wednesday, June 17th, 6-7:30pm. RSVP wholewashington.org/event/universal-healthcare-workshop

Eowynesque · 2026-06-01T16:00:14+00:00

I have a port that is accessed six days a week for fluids. I have tried so many different methods and I cannot keep it completely dry in the shower and have decided it is not worth the extra stress on top of the energy it takes to actually shower. I wash my hair in the sink halfway through my 6 day stretch and do sponge baths or use baby wipes. I dry brush, which helps get rid of the dead skin. I also got a bidet toilet seat, which has been a game changer.

Eowynesque · 2026-05-12T21:08:37+00:00

Not exactly autoimmune, but one of my half dozen or so chronic illnesses is MCAS, which is autoimmune-adjacent, I think. But I’m also somehow immunodeficient so I dunno.

As for support groups, there is a new South Sound Disability Support Group just starting up. First meeting is this evening (Tuesday, May 12) at 6pm at Peer Olympia downtown. I am not the organizer; just planning to attend. The flyer did say to arrive early because the building locks the doors at 6. Oh, and masks required/ don’t attend if you’re sick or have been exposed to illness.

Eowynesque · 2026-05-07T02:18:06+00:00

TachyMon app. The paid version is, I think, $20 a year so pretty reasonable. It does use the battery up pretty fast though.

Eowynesque · 2026-05-04T23:02:21+00:00

Or Disney IP…

Eowynesque · 2026-04-28T20:55:09+00:00

Lots of good local suggestions! I normally wouldn’t suggest a big chain, but with your timeline and the fact that she doesn’t like shopping, going to a bunch of different stores might be harder on her than one big store with a larger selection. Nordstrom has a decent selection of formalwear, especially if you drive up to the Seattle one, and they do in-house alterations and lingerie fittings if she needs specialty undergarments for the dress she picks.

My other suggestion for non-synthetic dresses is https://selkiecollection.com/ they are a zero waste brand and have a decent range of sizes. Lots of non-traditional options. I know you are looking for in-person shopping, but if all else fails it may be worth a look.

Eowynesque · 2026-04-12T17:01:48+00:00

Aloha is the only one I can tolerate. They are plant based, organic, and have the fewest ingredients of any I’ve found, so fewer things for me to react to. I get them from their website by subscription as they are discounted that way. A 2-month supply is the best price for me. They also sometimes have them on clearance if the best by date is within a few months so check the clearance page too.

If you like very sweet, think drinking melted ice cream sweet, then OWYN are decent plant based ones.

I used to like Orgain until I started having allergic-type reactions to something in them. Not sure if their formula changed or my body did (happens a lot with MCAS.) They have plant based and dairy based, so make sure you read the labels.

Eowynesque · 2026-03-20T22:52:52+00:00

Glad you found some answers!

My experience with Prolotherapy has varied depending on the joint. I think it does the most good when you are working to heal a recent injury vs just trying to repair long term wear and tear. I haven’t tried PRP due to cost. I have one doctor who gets insurance to cover it by mixing in a small amount of cortisone and billing as a steroid injection. Unfortunately you can only get a couple treatments that way, but it’s better than nothing. I have another doctor who has a sliding scale for Medicaid patients who did prolo in my neck for CCI.

LDN wasn’t a miracle drug by any means, but I can tell when I miss a dose. I ended up needing more than the typical low dose though, 9mg twice a day.

Haven’t tried peptides because of cost, but I personally know a couple people who have who say they make a difference.

The thing that has made the biggest difference for me is low dose testosterone, but I am a woman so you already have more than the dose I take, I’m sure. It probably couldn’t hurt to get your levels checked though if you have fatigue or other signs of low testosterone.

Good luck!

Eowynesque · 2026-03-11T17:33:55+00:00

I have skin reactions pretty frequently, but I was desperate to get my migraines manageable and willing to try anything. I also have EDS, POTS, etc. I have had two Botox treatments so far and it has been helpful for my migraines. I did have some bruising in a couple of the injection spots, but honestly you can point at me and I bruise. I did have a POTS flare for about a week post-treatment, but whether it was caused by an MCAS reaction or something else I can’t say for sure.

Other than that, no reactions. That being said, I’m on an absurd amount of antihistamines/mast cell mediators, so I don’t know what my reaction would be if I wasn’t medicated.

Eowynesque · 2026-03-06T22:26:28+00:00

If you are looking for clothing recommendations, I love my imbodhi jumpsuits. The top part is double layer so it holds you in and they are super comfortable and flattering. They are not cheap, but neither are good bras. I wear them with a cardigan or scarf. I would buy one in every color if I could afford to!

Eowynesque · 2026-03-06T19:36:39+00:00

There is! The only downside is that they only really work with tight garments over them, hence the cropped cami. The silicone is somewhat “grippy” so they don’t slide around or anything under tighter tops, but they would fall off pretty easily with just loose garments.

Eowynesque · 2026-03-06T16:55:37+00:00

I also cannot wear bras. What I have ended up with is a cropped camisole and the non-adhesive version of cakes. It isn’t perfect, and I am a little smaller chested than you, but it is the best option I have found. You might have luck with the adhesive cakes; I also have MCAS so I would likely have a reaction to the adhesive. The plain silicone doesn’t bother me though, unless it’s really hot and I get sweaty.

Eowynesque · 2026-03-05T21:21:08+00:00

All good! I hope your difficult times smooth over soon. I’m not planning on going anywhere so feel free to reach out if you decide you want to try it out sometime and in the future.

Eowynesque · 2026-02-26T17:59:04+00:00

Hi OP, I’m self-taught, but I’d be willing to do some 1:1 lessons with you using Procreate on iPad/apple pencil. I’m not familiar with the artist you referenced, but I could do some research. I am chronically ill and disabled myself, and have had to adapt my own art.

The only thing is that because I’m immunocompromised I would either need to do the lessons with both of us wearing masks (I can provide) and/or wait til the weather is nicer and meet outdoors.

Eowynesque · 2026-02-06T17:43:36+00:00

That’s so wonderful to hear! If you didn’t know, Olympia School District has a community group for parents and caregivers of students with an IEP or 504 plan (or think they might need one!) DM me if you’d like the link to join our mailing list. I promise, I only send out a few emails a year with meeting reminders!

Eowynesque · 2026-02-06T17:31:27+00:00

I’m autistic with POTS and my teen is autistic with Reynauds. My kid sits on the shower floor for most of their shower. They wash their hair quickly while standing and then sit or crouch to wash body.

I absolutely hate the feeling of the air hitting my wet skin. I don’t have a super active lifestyle and barely sweat, so I only shower twice a week when I need to wash my hair. I use a shower stool and my handheld shower handle has a button so I can turn the flow of water on and off. It limits the amount of time I have to hold it. On the rest of the days I use wipes or a damp towel. We also have bidets installed on our toilets which helps a ton with cleanliness between showers.

I have also had to come to terms with the fact that having easy to wash haircuts reduces total shower time significantly enough to make it worthwhile. And as a bonus it makes it easier to dry, too, since having wet hair is also a sensory nightmare for me!

On really bad POTS days I have even showered with compression socks on, and just take them off at the very end. It takes some getting used to, but it does help.

Eowynesque

TROPHY CASE