Mast Cell Activation Disorder

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Ehlers Danlos Syndrome - A Healing Journey (Actual progress!)

Dealing with Ehlers-Danlos Syndrome (EDS) and other chronic muscle and joint conditions has taught me a lot about how the body works under stress. One key takeaway is that when muscles are overworked or injured, they tighten up as a defense mechanism. This process takes up a lot of energy, so to conserve resources, the body smartly creates scar tissue to bind everything in place. It’s a clever form of resource management, designed to prioritize immediate survival needs. But the trade-off? Long-term function gets compromised.

One of the most important things I’ve learned is that getting those tight, restricted tissues moving again is the critical first step in recovery. Over the past decade, tools like foam rollers and massage balls have become mainstream. But while they’re great for some people, they don’t always work for bendy bodies. Our muscles overlap differently, and areas like joints require special care. Plus, when you add issues like Mast Cell Activation Syndrome (MCAS), dysautonomia, and fragile lymphatic systems into the mix, direct compression often does more harm than good for many of us.

For people with hypermobility, it’s all about balancing the release of bound-up tissue and restoring healthy function—without irritating the body further. Once the soft tissues regain mobility and inflammation calms down, the body can stop stops compensating and is ready to rebuild strength and proper function and with even better body-mind awareness. Proprioception (the body's ability to know where it is in space, e.g. how you can touch your nose with your eyes closed) can improve, and daily tasks can start to become less burdensome.

It's all incremental though, hypermobile bodies deserve and need gentle progress.

I'm so thankful to the Muscle and Joint Clinic for their diverse and gentle approach to healing. Focused shockwave therapy brings instant relief to my tired muscles and red light therapy down regulates my nervous system. Getting myself into the rest and digest mode has been so vital to my healing.

While my symptoms can flare up in sudden and unpredictable ways, my recovery time is dramatically shortened. I most recently had a migraine with a brainstem aura that had me 1. worried I was having a stroke and 2. asleep for close to twelve hours and sensitive to light for more. I was worried about what that much bed rest would do to my recovery. Luckily, I have some more wiggle room when it comes to full bed rest. My strength and function have been rebuilt enough that I get a day off from physical therapy. A year ago, one day off would cause a cascade of debilitating subluxations and autonomic dysfunction. So while these days feel scary and like there's no end in sight, I'm sitting at my desk two days later amazed that I'm back at 80% function, and not the 20% I would be a year ago.

I’ve focused here on the physical aspects, there's also the emotional layers of healing. Underneath a lot of this body pain, there's definitely the younger version of me, ignored by doctors, teachers, and even childhood friends. I also have to look after her and remind her to not minimize the pain, to acknowledge it, talk about it, and seek the treatment I know I deserve.

#EhlersDanlosSociety #EDS #POTS #HypermobilitySyndrome #DegenerativeDiscDisease #AutonomicDysfunction #ADHD #neuro #Fibromyalgia #MastCellActivationDisorder #MentalHealth

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All in the family

Exhausted trying to get a diagnosis of hEDS.

But now I'm under pressure because my two sons show symptoms. One is Autistic, one is pending assessment. And me? After seeing all the paperwork I realise I'm an undiagnosed autistic adult at 46.

This is on top of, my sister's Chiari Malformation, my late Father's Ankylosing Spondylitis, my Fibromyalgia (supposedly), Hypermobility etc.

Having a hell of a week. As I got full records from the doctor to check over for insurance, and I was diagnosed with CFS & Hypermobility Syndrome in 2000 - the doctor NEVER divulged it to me.

#AnkylosingSpondylitis #Pacemaker #Fibromyalgia #MastCellActivationDisorder #ChiariMalformation #CeliacDisease

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How Has Your Health Changed Your Perspective In A Way Others May Not Understand

If 1000 people with your same condition where in the same room as you , I bet you would be the only one with your perspective on life “

The man at our churches end of summer party responded to me in what felt like a half disgusted , and in another way half impressed form of bewilderment .

He is the type you can tell life had not handed a kind hand to .. and in process he has hardened with the pains he has had to endure
( kind of how the same water that softens a potatoe hardens an egg )

I smiled and said to him

“ Not exactly, I’ve had the opportunity to work along side and get to know many with conditions like mine ,
Or worse .. and the perspective on life with severe illness .. it’s kind of a mixed bag “

And he could just not wrap around his head around how im so happy .. but a 28 year old , with failing health .

I tried to explain how even though im lacking in the physical health department .. I I feel like I can have joy because God has blessed in so many ways .

With a chuckle and a smile he told me he was Jewish 😂❤️.

He could not wrap his head around how I see the world .

And I could not wrap my head around how he sees the world .

Maybe God knew I needed this conversation when it seemed like all I was doing today was marinating in the frustrations of my current situation .

I even came out to our Church cook out knowing I didn’t physically feel good enough to be there , and cursing out the constant drizzle of rain .

But as it rained , 2 rainbows formed

And through my conversation with this man . The rainbows just seemed to get brighter .

As I left the party , feeling a new perspective on how to face my current dilemmas .

I couldn’t help but say a silent prayer to God thanking him for the rain in my life .

So I know just how important rainbows are . 🌈

How has your health changed your perspective in a way others may not understand? #RareDisease #CommonVariableImmuneDeficiency #MastCellActivationDisorder #Epilepsy #LungDisease #MentalHealth #MixedConnectiveTissueDiseaseMCTD #Glaucoma #Gastroparesis #chronicmigraine

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Chronic illness & grief

Lately I’ve been being hit hard again with waves of grief. They come and go, and often are interspersed with severe depression.

It’s been almost a year since I was diagnosed with hypermobile Ehlers Danlos Syndrome. It’s been a year and a half since I initially decided to focus on improving my physical health which, ironically enough, has led to a snowball effect of diagnoses and a decline in my health as well.

I’m in the beginning stages of being evaluated for Mast Cell Activation Syndrome also. I just started double doses of Zyrtec and Pepcid to see if that helped with my chronic pain and constant state of flaring. Shockingly, it has helped, which has been amazing. Next step is to get assessed by an allergist or immunologist and probably two more medications if I do have MCAS.

With all of the stress associated with chronic illness, my eating disorder thoughts have cropped back up too. Hard to believe I’ve been living with anorexia (currently in remission from ED behaviors but the thoughts still pop in from time to time) for 20 years. Twenty years. That blows my mind.

It’s just a lot. I don’t have answers right now or anything super positive or optimistic to say. I’m just very tired. Managing my health is a full time job. I have multiple appointments per week. I’m on a raft of medication. I need to find a therapist who is comfortable & familiar with chronic illness/grief but I haven’t had the time or the spoons yet to do that. It’s on my to-do list though.

It’s a lot. I’m here, and I’m safe, but I’m not okay. I will be, but I am not right now.

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what if right now you're okay and for this moment, everything is okay?"

was listening to a podcast this morning 🎧and they mentioned something along the lines of (this is totally reworded as i already forget) "what is everything right now is okay?" or "what if right now you're okay and for this moment, everything is okay?" ☁️i found this to be super comforting. i know it can sound a little woo woo and like logical mind comes and says "it's not though" or "so many things are not figured out or are not okay right now" or "you have so many things to do that are stressful!" but what about just like for the moment - cant everything maybe be okay? ☁️meditation hasnt been my calling - and being in my body in that sense, as sometimes being "in my body" makes me very aware of my fast heart beat or exhaustion or *too* focused on my breathing so i start feeling like i can't breathe (haha) -- or even triggers that air hunger sensation because with dysautonomia, breathing isn't always so easy to regulate! but for me, painting, doodling, drawing - all of these are my form of meditation and taking mind/body breaks. ☁️☁️this was a big circle i promise it relates! i think that it can be kind of calming and meditative to just think "It's okay right now." a this teensy tiny moment in time. or this big moment in time - whichever resonates. and maybe when hard things come, "i'll figure this out" or "i'm okay for now, i'll figure out tomorrow when it's tomorrow" and even when not feeling okay, maybe just telling your body that it's safe - it is okay, and you are there rooting for it? ☁️☁️just pondering - would love to know what you think about this sort of focus on the now, but really just reassuring yourself that "you got this!" ? and also holding space for the moments when it's not okay right now, and when this isnt what you need in the moment to support yourself. i think there's a time & place & moment for anything and everything - so do whatever brings you the most peace, comfort, or strength ☁️🌵✨

#Dysautonomia #ChronicFatigue #encouragement #MastCellActivationDisorder #Spoonie #Hope

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I’m new here!

Hi, my name is chronicridiculous. I have POTS, CEBV, and MCAS. I’m looking for community and thought I’d check out The Mighty 😃

#MightyTogether

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Idk what to do

#Rash
I’ve talked to my specialist team they don’t think it’s my Mcas my dermatologist thought it was scabies but treatment isn’t working . Not sure what to do at this point . I have the rash now it keeps spreading it’s all over my boobs, butt, inner thighs ,hips, underarms and legs . My underarms an groin area are starting to get painful they feel like blisters

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