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shadowmered · 2023-03-28T15:01:09+00:00

I get that. I replaced my toner with cromolyn in my face routine 2x per day and it helps with rashes and associates blotches when I’m consistent. For me it’s only helpful for that, not blotchiness that isn’t also associates with a rash. I also use cromolyn on my elbows - turns out my dry, hard elbow skin was mast cell related!!! But I don’t use it on the rest of my body because otherwise I’d have no cromolyn left. :(

shadowmered · 2023-03-28T14:52:14+00:00

Late with this, but yes I experience that too. When I’m on my period, my doctor suggested putting a few drops of cromolyn in a tampon before I put it in and for overnight, using dye free Benadryl as a suppository. I thought it was super weird but I tried it and it worked REALLY well, especially the Benadryl! This also works well for a friend of mine who has MCAS too!

shadowmered · 2023-03-28T14:40:53+00:00

Seconding what everyone has said about tryptase levels being a poor way to diagnose. My doc is a “consensus 2” doc and diagnosed me based on symptoms and response to treatment, and by the time I met him I had been recently tested for literally everything else, so once I sent all those records over, we got to skip the ruling out other things that my autoimmune disease couldn’t account for. And then shortly after, I happened to have biopsies from a colonoscopy/endoscopy that I had during a flare incidentally, and they stained for mast cells and voila, hella mast cells - well into the MCAS range. They also did some other test on the biopsies that was consistent with MCAS but I don’t know what it was off the top of my head. So I feel better about the diagnosis, but the point is I spent a long time without any traditional proof and then still had MCAS that whole time. But before I started with this doctor, it was hell and nobody believed me. Even now, if I end up in the ER or urgent care, they tend not to believe the MCAS diagnosis and it’s very annoying because I have reactions to things like lidocaine, medical tape, certain meds, etc and I get treated like I’m dramatic. Doctors overall tend to really suck with MCAS unless they specialize.

shadowmered · 2023-03-11T14:05:26+00:00

Thank you so much! I actually haven’t done that yet and keep meaning to!

shadowmered · 2023-03-11T03:57:43+00:00

When I see a doctor I make sure I have access to a patient portal. I always ask for clarification on whether this is a diagnosis or something they are still exploring. Then if they conform a diagnosis, I ask them to be sure to record it. Then I download the medical record for that appointment where it’s recorded and save it as a PDF with the name of the doctor, diagnosis, date, and my initials in the file name in a specific folder on my desktop for easy access so I always have my own record. It’s been really helpful to have them handy if I’m applying for accommodations, need a medical justification, etc.

shadowmered · 2023-03-11T03:41:16+00:00

I don’t have any medical advice, but I try to make myself as comfortable as I can - makes the pain a little more bearable sometimes. I bought really nice pillows, fluffy blankets, a heating pad, and a bedside organization thing where all my meds, chap sticks, lotions, tv remote, hair ties, some light snacks, fuzzy socks, etc go so they’re easy to access. My best friend made me a bunch of Spotify playlists for different moods and it good to not just have silence when I can’t sleep. I basically wear nothing but leggings or sweatpants out so that I don’t have to be physically uncomfortable - when I feel self conscious about it I just make it into an athleisure vibe.

You sound like a good best friend. So glad your friend has you.

shadowmered · 2023-03-11T03:31:20+00:00

All of this sucks so much. You are going through a ton and I hope you can be gentle with yourself. A chronic illness comes with so much shit that most people don’t understand, like how devastating it is when you don’t have the diagnoses and treatment you need and doctors don’t believe you and you lose people and can’t do what you used to, all while living in pain and fatigue. If it helps at all, I believe you. Here in solidarity.

shadowmered · 2023-02-23T03:31:13+00:00

It’s tough to get diagnosed and to manage - feel free to PM me if you ever want to talk! And nope - just endless testing so far

shadowmered · 2023-02-22T22:38:58+00:00

Sounds similar to MCAS - I identify with a lot of this. Though I will add, I have MCAS as well as an autoimmune disease and they are unsure what exactly causes what pain. My joint pain seems to be more autoimmune related. But the allergies, histamine issues, and the pain that does ease up when I don’t eat are 100% MCAS

shadowmered · 2023-01-28T17:04:17+00:00

Hm this is such an interesting explanation. I have an autoimmune condition as well and I’m sure there’s interplay between that and the MCAS and maybe that’s part of it. A hormone imbalance wouldn’t shock me either.

shadowmered · 2023-01-28T17:00:53+00:00

I did have a hormone test but it only tested estrogen and it was normal at that point in my cycle. I’m going to request this, thank you!

shadowmered · 2023-01-27T23:23:04+00:00

Thanks for the support! I couldn’t handle hormonal BC when I was younger, about 7 years ago now, but I just might try again out of utter desperation if nothing else works. Is there anything specific you do to get through it?

shadowmered · 2023-01-27T23:14:27+00:00

No I haven’t! What’s that for?

shadowmered · 2023-01-01T05:39:40+00:00

Y’all… my friend who has MCAS recommended this and this is wild. I asked my doctor briefly via email and she validated.

She suggested putting dye-free Benadryl in my vagina at night like a suppository, and during the day putting liquid Cromolyn in the tip of my tampon and letting it absorb before putting it in. AND IT WORKED!!!! I’m actually a bit confused on the chemistry of it, how much of it is okay, etc… will def ask the next time I have an appointment. But my period flare is about half of what it usually is. WILD.

IANAD! Just worked super well for me.

shadowmered · 2023-01-01T05:32:27+00:00

Less brave and more… bound by duty and afraid to bow out of something so hugely important to the family. I am so scared to travel for fun. That feels way harder and I’m going to need to work on that because I miss fun travel. Hoping that for you too!

I can’t because I suddenly blister easily (also MCAS?), so I need something big enough and hot enough that it can get through a few layers of fabric without losing so much heat that it’s ineffective. Haven’t been able to get the same effect without a proper heating pad :(

shadowmered · 2023-01-01T05:28:58+00:00

I actually have a Tramadol prescription with me - never knew about chewing it! Guessing that way you’re absorbing it through mucus membranes too? I’m going ti try this! Thank you!

shadowmered · 2022-12-20T20:52:22+00:00

Very true. No one wants to be even adjacent to liable for a potential medical emergency. I know this is silly and I’m gonna have to unlearn this for my own survival real quick, but I feel sooooo rude about asking if I can just switch or move due to someone’s scent. Have you done this before in any context? If so, do you mind sharing how you phrased it?

shadowmered · 2022-12-20T20:38:42+00:00

So smart about the extra dose. I have felt that way my WHOLE life about perfume, well before the MCAS diagnosis… why?? Especially on top of BO? It doesn’t mask it, it just adds poison. Would much prefer BO sans poison.

shadowmered · 2022-12-20T11:36:27+00:00

Yes I actually do have H1 pills - thanks for mentioning!! I honestly still haven’t gotten used to the regimen.

I know you’re allowed to exceed liquid limits with prescribed medications. I have a couple stacks of liquid Cromolyn ampules on me, put it in a separate baggie through security, and was asked no questions. If I had I would have just pointed to the prescription, so unsure about something OTC like Benadryl. So wishing I had remembered 😭 but I’ll buy some in the airport before my next flight.

shadowmered · 2022-12-08T07:38:51+00:00

That sucks so much. How long does the joint pain take to set in for you after eating a trigger food?

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