u/Celesty96

I have a bad habit of downplaying things which, as far as medical experiences go, has repeatedly gotten me into trouble when things were far worse than I let on or allowed myself to believe.

I suspect I have MCAS for so many reasons but today, like so many others, I worry I'm just going crazy and maybe this is all normal somehow. Please confirm this is not normal so I can stop invalidating myself 😭

This evening both my ankles are swollen and super stiff like they have been every day for 3 months. I, normally super flexible in both my spine and shoulders, am like a wooden board, barely able to twist without great effort. Everything is difficult. Sitting down, standing up, bending, rolling in bed, etc. All the muscles in my back feel strained despite no injury, my shoulders crack constantly and a bunch of my joints and tendons feel unstable. My calves, jaw and neck have been extremely tight for weeks. I have rapid muscle fatigue in my thighs and biceps. It's just non stop. And that's not even going into all the weight gain and other MCAS symptoms like GI issues, flushing, etc.

It's been surreal recently. I wake up and go to bed every day feeling like I'm sick with the flu. I think, this can't be normal, this isn't normal, but most of my blood tests are fine so I begin to doubt myself. Ugh. I'm sure some of you relate! 😩

Do your symptoms appear right away, after minutes/hours?

I've just begun a food/symptom diary and am noticing some things. Not yet diagnosed.

Some foods cause noticeable reactions right away, like tongue tingling, dizziness (almost like there's a lag in my vision?), ear pressure, headache, GI issues, etc. Alcohol and certain meds like dayquil are some of my most obvious and scary triggers.

Other symptoms like fatigue and weakness take longer, or at least are harder to pinpoint to a specific trigger.

I intentionally ate some trigger foods yesterday to see how I'd feel. I was mostly curious to see how I'd feel the next day. Well, today I feel like absolute crap 💀. Hit-by-a-train, can barely move kind of stiffness and exhaustion. Muscles are super tight and deeply sore, headache, bad TMJ, puffy eyes, early to bed but nearly impossible to wake up kind of thing.

Do you guys experience most symptoms immediately, are there any that take hours to show? Any chronic daily symptoms you had that you've realised were caused by histamine dumps or something similar?

Thanks and be well, friends!

Reading the description of MCAS, a light bulb went off. Suddenly so much of my life makes sense.

The past 8 months my health has gone down the drain. Rapid and inexplicable weight gain. No appetite. GI issues, especially after eating. Widespread, migratory tendonitis that just didn't make any sense. 24/7 bilateral ankle swelling. Pins and needles on my tongue when I ate certain things, or elsewhere on my body at random. Severe stiffness resulting in rapidly reduced range of motion and fatigue. Hair thinning and newly irregular cycle. 10 years of chronic leg pain, brain fog and cognitive decline. Arthritis and celiac both negative.

Then the realisation came that this might be histamine related, which brought me here.

I no longer believe I just have a sensitive stomach and sensitive skin. I think the hives I get from most skincare products and sunscreens mean something. The congestion, scratchy throat, bloating, puffiness and bathroom troubles after eating different things mean something. The itchy rashes I get from the shower, swimming and the sun mean something. The immediate pins and needles of my mouth and face and disproportionate drunkenness after a few sips of any alcohol, almost always followed by the runs and severe vomitting- that isn't just sensitivity. Feeling intoxicated after eating greasy/sugary things or taking certain medications. Rain making me itchy, summer air making me itchy; It was all a sign. So many signs.

I don't have a diagnosis and frankly if it's not MCAS I'm at a total loss. But I really believe it is. I have so many comorbidities, too. Finally something to explain all the weirdness.

There is plenty of Christian, bible-led, crunchy and traditional content out there when it comes to raising families and our role as mothers and wives. But something I've found missing from my algorithm is women who live these lifestyles who also have children with autism.

As the parent of a high needs autistic child, I simply cannot relate on this level to so many of the women I come across. Their tips and tricks seem almost amateur when applied to the needs and temperament of my child. As hard as I try there is no 'quiet' time in my house because my son is so often screaming, crying to be held or being aggressive to his siblings. He has a lot of energy and is very sensory seeking which, when combined with his inquisitiveness (which I love) results in near constant overwhelming messes. It's fine and dandy to lovingly say no and redirect your child, which I encourage, but it just feels different when mine is melting down 20 times a day because his sister touched his toy or he can't take off his pants or he was told not to yell or or OR (the list goes on). I've tried to limit screen time but feel I'm left with no other choice when I can't put my baby down to nap due to all the interruptions with my son. We have no yard for my son to enjoy or blow off steam.

Does anyone know content creators I can follow who subscribe to that way of life but maybe have better understanding of the ways in which it might look different for a child with autism or special needs? That could give tips on how to apply these great ideas in a way my child would better respond to? Or maybe you have some tips you can share?

Thank you!

It began about 8 months ago. I had my baby not long before and, while I was on a gradual weight loss trajectory, I suddenly began rapidly gaining weight without clear reason.

I noticed other things: frequent tendonitis, but with symptoms that came and went too quickly to be true tendonitis. Swelling in joints. Increasing muscular pain and stiffness. I would wake up stiff and completely wiped out the day after an easy, brisk walk.

Strange things like tingling on my tongue when I ate certain foods, often followed by nausea. Worsening IBS. Then my cycles became irregular and I began losing hair. Pins and needles elsewhere, too.

Severe brain fog and cognitive decline began 10 years ago along with heavy, throbbing leg pain.

I saw a rheumatologist after doing X-rays to rule out arthritis. They noted sclerosis, micro calcifications and bone spurs on my pelvis as well as enthesitis on both ankles. Blood work was clear however, when I raised concerns about my chronic iron deficiency without anemia, the doctor said it was borderline normal at the moment. He had mentioned earlier that inflammation typically raises iron. I asked if maybe the normal levels were actually a sign of inflammation as they're typically less than 10, especially since I'm not on supplements right now, and he concurred it's a possibility.

He suggested this might all be due to fibromyalgia. I do have a lot of the symptoms and had considered it in the past. But new symptoms like the to gue tingling and month long swelling of both ankles doesn't seem to fit the bill.

I also have several comorbidities of MCSA, such as hypermobility, obesity and a history of depression, ADHD and likely autism.

I will see the doctor again is a few months once MRI results are in. But based on your knowledge and experience with MCSA, is MCSA a possibility here?

Thank you and I hope this year brings you good health 🙏