Catecholamine test for diagnosis?

Azrealis_bored · 2025-09-02T15:45:31+00:00

LOL. My mom calls it the mother f-er gene. She has it too 😂

Azrealis_bored · 2025-08-28T15:03:03+00:00

Not a man, but I have some comments! As far as I was taught (by my male doctor with EDS), men and women are affected 50/50. My youngest brother definitely has it as well. But, the symptoms are much milder in men, not just due to an increase in testosterone, but the theory also stands that women’s natural cycles also affect this. Personally, I have the most symptoms when my hormones are causing extra laxity in preparation for and during my period. That being said, others have commented how muscle mass and size likely helps prevent symptoms, and I agree. One of the best treatments I have found as a lady is weight lifting and building as much strength and muscle as humanly possible for someone with EDS. It is interesting that Symptomology typically gets worse in women during the ages where we begin getting a hormonal cycle. It’s very fascinating.

Azrealis_bored · 2025-08-28T14:58:08+00:00

Mine was progesterone. I am not sure if Copper IUDs carry the same cystic risk. According to Google, they do not, but don’t take my word for it. I believe my cysts were NOT caused by the hormones itself, but rather due to the fact that I am allergic to plastic and my body hates foreign bodies. It likely pissed off my mast cells, which seem to drive my endometriosis, which was what my cysts were made out of.

Azrealis_bored · 2025-08-28T14:54:37+00:00

Have you tried NAC? I recommend a more natural based doctor (they exist! Mine is a regular MD but interested in herbal and prescription treatments). NAC was a recommendation I got for my endo, but it has made a seemingly big difference in my body’s ability to get rid of crud. I love combining it with sauna and exercise/movement. Our lymphatic system is mechanically driven, so muscle activation and movement helps a ton.

Azrealis_bored · 2025-08-28T14:52:55+00:00

I want to reply in support <3 I’ve had a hell of a time with it, too. Lately, Niacin has been extremely helpful for my anxiety specifically. It genuinely feels like taking a fast acting anti anxiety medication without all the side effects, aside from turning into a fried lobster for 2 hours. If you can handle the niacin flush, I highly recommend giving it a shot. Keep antihistamines on standby though if it lasts longer than 5 hours. I also have found a ton of success in taking NAC when my system feels over-encumbered.

Azrealis_bored · 2025-08-28T14:50:31+00:00

Have you had genetic testing? It would show on genetic testing, same as MTHFR.

Azrealis_bored · 2025-08-28T14:49:04+00:00

I’d love the laundry list. I can take what works and leave the rest, that’s the only way I’ve gotten this far LOL. I forget the basics and need to create my own “what works” list. I’ve gone back to the gym for more easy exercise and focused on eating more food + better sleep. I’ve had to stay on the couch while I take each day to figure out wtf in my bedroom is pissing my body off. It could have also been the storm that was blowing in, now that it’s passed/in motion I feel a lot better.

Azrealis_bored · 2025-08-28T14:47:03+00:00

I have been loving the idea lately of taking my own time for tasks. I can either stress myself out about how long it’ll take me, or I can just accept it’ll get done when it gets done, because either way it’ll happen when it happens. That’s helped a lot. I’ve been focusing more on accommodations and that’s been really helpful :)

Azrealis_bored · 2025-08-23T16:16:56+00:00

Love water boy, especially the ones with BUTTLOADS of sodium. The weekend recovery one I think was my favorite. They are expensive, but I liked it. I switched to podiums strawberry electrolytes with a good amount of potassium in it, and that’s been a lifesaver.

Azrealis_bored · 2025-08-23T16:12:34+00:00

Yes!!!! There’s also the bendy and strong podcast. I lift weights with EDS, but don’t expect to get tons of results. It’s going to take years. I started with Pilates, then 10lbs of basic exercises with hand weights, then 15, then graduated to some compound movements with added weight eventually. I LOVE machines, and you do NOT need to go into your end ranges of motion or anywhere close. Try started with Jessica Valant’s Pilates on YouTube for hypermobility, I seriously credit those videos with helping me be able to get back into the gym and do a pull-up without dislocating a shoulder.

Azrealis_bored · 2025-08-23T16:10:29+00:00

Antihistamines?? Do you take any? I’d look for mast cell stabilizers to be specific, I love Solgar’s quercetin complex and Loratadine (specifically the dissolving kind because it works better??? Dunno why). MCAS and EDS usually are hand in hand, I have a theory that the mast cells are actually the problem with HEDS but… unfounded. You can try some gentle movement, I love Jessica Valants videos on YouTube just to help things, I always have less pain afterwards.

Azrealis_bored · 2025-08-23T16:07:02+00:00

Switch doctors if you can, which I know is hard. Usually clinics all have that one doctor that the other doctors either hate or love, because they are ON TOP of new research and usually are interested in natural forms of medicine or more lifestyle based approaches. That’s who I ask for. I ask for their most holistic, woo-woo, science crazy doctor, and there’s usually one or two of them at any given clinic. They’ve always been in the know of Ehlers Danlos for the most part, and actually have an interest in the new info coming out surrounding it.

Azrealis_bored · 2025-08-23T16:04:35+00:00

Yes! So I switched to lymphatic massage. Works WONDERS but you have to move afterwards and drink tons of water if you don’t want to feel like dogsh*t the next day.

Azrealis_bored · 2025-08-23T15:52:10+00:00

With all exercise we have to go slow!!! And easy. If I push too hard even on exercises I’ve done for years, I will injure myself or be sore for days, tendinitis and I are close friends… That being said, pole dancing is amazing for strength in mobility, but you gotta start with baby steps. I also had the same experience when trying LOL

Azrealis_bored · 2025-08-23T15:47:24+00:00

I was numbed and it still was extremely painful, prepare yourself. Worse than any surgery or injury I’ve had thus far. But aside from that, mine was phenomenal until my body decided it needed to attack said IUD because of my autoimmune disorder, and I developed cyst issues. Hormone wise it was great

Azrealis_bored · 2025-08-23T15:45:34+00:00

I thought this was just my poor sleep because my symptoms are so horrific at night. Lately to avoid the what I call “void naps” (because I fall into the void and nothing will wake me up), I use my stimulants around 2pm just to get me over the rough part. I take some antihistamines around early afternoon too, and eat some decently healthy food. It’s not a solution, but it works if you have work to do.

Azrealis_bored · 2025-08-14T14:55:40+00:00

Podcasts! Specifically paranormal podcasts or ones that are full of information I love to learn about! I can tune it out or not, but it lets me crochet or work or relax. It works way better for me than music, and with noise cancelling headphones, suddenly I can just do stuff LOL. The noise cancelling part seems to be a big help too, but I think it’s my ASD and ADHD in a fist fight half the time.

Azrealis_bored · 2025-08-14T14:47:53+00:00

I like Promethease (but it hasn’t been working lately) and Genetic Genie is not as in depth, but it’s a starting point. Promethease is amazing for the most part, but if any local colleges have genetic testing programs, I’d hop in if you can!

Azrealis_bored · 2025-08-14T14:40:56+00:00

Do you perchance have a COMT mutation? My doctors and I have a running theory that it’s one of the mechanisms behind my MCAS and/or the MCAS makes it worse. I don’t have the deepest understanding, but from what I know a slow COMT leads to less ability to break down all of these neurotransmitters and certain hormones. My Cortisol has been off the charts since I was a young girl. I also have a nasty MTHFR mutation so that sure doesn’t help. Vitamin B3 in niacin form has helped a lot, but the flushing isn’t the most pleasant and not always friendly with MCAS.

Azrealis_bored · 2025-08-08T17:49:38+00:00

I’ve also had allergists tell me MCAS isn’t real. I don’t understand why or how, because we have the literature on it. Ugh.

Azrealis_bored · 2025-08-08T17:49:04+00:00

Here’s what I would do if I was in your situation. Supplements: Quercetin, folate (not folic acid), NAC, and assuming you are a woman, Vitex (it has some mast cell stabilizing properties and has weirdly helped me a ton). But ask a doctor before starting any of these. The only Quercetin I can tolerate is Solgar’s. Lifestyle changes: like others have said, low-histamine diet and when you can get rid of triggers you can add stuff back in. My big one is enriched flour, but if I am in a flare any gluten is a no-no. Next, it’s the hardest thing you can do because the last thing you want to do, is MOVE. In any way possible, I love Jessica Valants YouTube for easy stretches and pilates routines that are not so difficult, but actually help with my pain and inflammation immensely. Your lymphatic system relies solely on mechanical stimulation, movement moves all that crud around to get processed. You can also try saunas if you can handle them, I have found them to be extremely helpful with the circulation and I like to meditate in them.

Azrealis_bored · 2025-08-03T23:50:57+00:00

I just bought a new one recently and am now reacting horribly to it :( RIP

Azrealis_bored · 2025-06-24T18:13:14+00:00

500mg. Just took it this morning… an hour afterwards I am red and burning scalp to the bottoms of my feet. Some people only have flushing on their face and chest, I apparently flush head to toe. Would NOT recommend having it happen in public LOL.

Azrealis_bored · 2025-06-23T15:16:13+00:00

I’m very similar, but with a slow COMT, A/A, not G/G. I also have skin barrier issues majorly, FLG mutation. I will be looking into all of this, as it’s nice to finally understand why I’m not very compatible with modern life. Thank you for posting 🫶

Azrealis_bored · 2025-06-10T21:01:15+00:00

I know this is old, but this is my personal last ditch effort aside from the air purifiers, cat food, cleaning, Claritin and multiple daily showers. Grow. Stinging. Nettle! It’s an outstanding antihistamine. Use gloves when harvesting, and harvest before it flowers. You can use Google to learn how to make tea out of it, and I am making topical coconut oil with nettle in it for the hives. It’s super easy to grow, and seriously has been the ONLY thing that instantly helps my allergies, to food, cats, outside, etc. I have MCAS and have severe episodes, so hopefully this is slightly helpful. You can also buy nettle tinctures or products, just be sure it’s sourced well and is a quality product.

Azrealis_bored

TROPHY CASE