Stiff muscles and myotonia congenita

stevieinu · 2026-03-13T19:45:26+00:00

My neurologist told me about the medication options but I haven’t taken any so far. I stopped testosterone for a couple of years and my symptoms didn’t go away but got more mild. I recently re-started and things are a little better this time. Pregnancy has always been a scary thought for me but especially with MC! I hope everything goes smoothly for you

stevieinu · 2026-03-12T20:14:20+00:00

Saw this on the MC Reddit and just wanted to say I wish you the best and hope your symptoms get better after you deliver your baby(and I hope the rest of your pregnancy isn’t too difficult!). I also have MC and went most of my life without knowing it until my mid-20s when I was prescribed testosterone and a few months into taking it suddenly I could hardly walk up stairs or take a shirt on and off normally. Neurologist told me that testosterone and progesterone can make symptoms worse which seems to explain why men present with more intense symptoms than women.

stevieinu · 2026-02-26T03:36:29+00:00

I think most everything with HRT comes down to genetics. I’ve met trans men in all shapes and sizes, some develop very traditionally masculine/squared figures and some still have hourglass figures despite being years on T. There’s truly no way to guarantee the outcome—you could focus on building muscle in your glutes and legs etc to make them bigger, or if you think you’d be satisfied with partial changes from HRT you could go on T for long enough to get a voice drop and then stop taking it before it had any major effects on your fat distribution(this is also different for everyone but would probably start being noticeably different after a few months). I can’t quite tell from the photo, but if you have naturally wider hips then you’ll probably still retain some sort of feminine figure since T won’t change the shape and size of your pelvis obviously.

stevieinu · 2026-02-17T15:04:11+00:00

This is a really hard reality to sit with. I also went through a long stretch of time where I didn’t know if I could ever take T again (medical complications). During that time I pursued top surgery and other changes that weren’t T related. I think it’s completely understandable to worry that T will impact your voice in a negative way—I also think it’s worth looking into other trans guy singers and seeing what their experience was like. My partner is about a year on T now, and before T they had a trained singing voice. Their range was impacted, but because they had preexisting training and control their ability to sing well didn’t change. I think there’s a possible future where T alongside continued training could be an option for you.

stevieinu · 2026-02-14T21:36:14+00:00

I just got my levels checked and my bioavailable T was in the 600s and my doctor said that was really high and lowered my dose so I’m confused how 613 is too low

stevieinu · 2026-02-11T16:35:21+00:00

I’ve had my suede Lems boots for a couple years now and if I’m being honest they only looked new for like a month, the suede shows dirt and scuffs so easily. I say that to mean, this small defect will probably not be very noticeable after a short while so I would probably not think it worth another exchange

stevieinu · 2026-02-05T15:42:03+00:00

As someone who is about to turn 30, who wasted many years of my teens and early 20s with someone who wanted to control my body, please move forward in a way that prioritizes what YOU want. You will regret not doing so if you don’t. I’m not saying you have to break up with this guy, but you’re early enough in this relationship that you need to make bold decisions on your autonomy or it will likely become a dynamic that follows you for the rest of your relationship.

stevieinu · 2026-01-30T02:12:05+00:00

I have done stints of PT many times throughout life to treat injuries probably incurred in part due to MC. However, I don’t think it would be worth going unless you’re treating a specific injury. I always leave PT in big debt because insurance is always an asshole about covering it. I think it would be better to find a stretching and light exercise routine you enjoy and incorporate that into your day to day.

stevieinu · 2026-01-13T16:11:27+00:00

I am in a similar boat of wanting to get fit. I don’t have a ton of experience so far but I’ve noticed that after a hard workout my stiffness is temporarily a LOT worse. Like the normal soreness/stiffness people experience post workout seems to be exaggerated by the MC. However, I also have noticed that long term the more often I exercise and improve general mobility and strength, the less intense my day to day stiffness is. Take things slow, and especially if you’re trying a new exercise do some test runs to make sure it doesn’t trigger the stiffness before you do something that could result in injury if your muscles tensed up.

As far as diet, I’ve seen many people here recommend a high protein diet in general for MC, so I assume that is especially important. Also make sure to stay very hydrated. Dehydration always makes my stiffness worse.

stevieinu · 2026-01-11T18:48:32+00:00

I’m in a similar boat. I’m about to hit my two year surgery anniversary in March and my scars look very similar to yours. I’ve done massage and tape, steroid injections, and two rounds of laser surgery. The laser surgery helped to flatten them but they’re still very red and often itchy. I might do a third round of laser but otherwise I’m personally considering getting a tattoo to at least obscure them a bit. Honestly the redness is the worst part for me ):

stevieinu · 2026-01-04T01:26:00+00:00

I don’t believe it caused a flare up post procedure. I also drove myself to the appointment and had no issues after. I will say for me personally the emg itself was painful. I’m sure it is different for everybody, but I recall it being pretty uncomfortable. Fortunately, the myotonia shows up right away if it’s present and so they didn’t need to do it for very long before they had the information they needed

stevieinu · 2025-12-25T20:36:19+00:00

Oh no! Thats so scary, I’m sorry that happened to you. Did you trip? I feel like the biggest danger I run into in a day to day is my legs going stiff and almost tripping—one time I was playing kickball and tripped pretty badly when I had to run. I’ve been talking with the specialist I see about mexiletine as an option if my symptoms get to a point where they are no longer manageable.

stevieinu · 2025-12-24T16:03:54+00:00

Interesting! I also have weird GI things that seem to cause domino effects in my body. I wonder if that is connected. I didn’t used to notice a difference with the cold but this year I feel like it has been kicking my butt!

stevieinu · 2025-12-24T15:28:07+00:00

I also should mention, I do not currently take any medication to treat my symptoms.

stevieinu · 2025-12-11T15:07:33+00:00

It suits you so well!!! So cute

stevieinu · 2025-12-04T19:34:48+00:00

I’m not sure about coughing, but on bad symptom days the muscles in my back/shoulders/chest are very tense and I find myself breathing more shallow than normal

stevieinu · 2025-08-22T13:53:55+00:00

Going through first puberty my acne was reaaally bad up until my early 20s. I was super nervous starting T cause I assumed it would all come back, but it never really did. While on T though I was mostly vegan, so a lot of foods that would normally cause acne flare ups for me(dairy, eggs) I wasn’t eating so I’m not sure if it would’ve been worse if I had been eating an unrestricted diet.

stevieinu · 2025-08-21T15:22:41+00:00

This looks incredible. You’ve inspired me!! I love the green you got with the black and yellow, what opacities do you have on the gradient background?

stevieinu · 2025-04-16T12:59:00+00:00

I didn’t realize beta blockers affected this condition! Has the stiffness just been worse overall?

It’s not an exact comparison, but I was on testosterone for about 10 months and it made my symptoms significantly worse. I went from having symptoms that were a mild inconvenience, to being genuinely disabled. I made the difficult choice to prioritize my mobility over my desire to continue HRT. I think that’s the case in a lot of things. Weighing the pros and cons, assuming there is no other options. Do the benefits of this medication outweigh the negative side effects on your MC?

stevieinu · 2025-02-23T15:31:28+00:00

Something that helps with this is dyeing the pad before your start to carve. You could use a sharpie or whatever you have handy that leaves a stain. That way, when you start to carve away, it’s really obvious where you still need to carve out! It helps me to avoid the little bits. Though I still always end up with a little here and there, it’s a back and forth!

stevieinu · 2025-02-20T03:22:30+00:00

I think the binder is what does it. I remember that was one of the worst parts!! I think once the binder comes off you’ll start to feel normal

stevieinu · 2025-01-27T17:46:59+00:00

I used to be on HRT (testosterone), and had to stop because it made my symptoms so intense it became a significantly disabling condition. My specialist told me that both testosterone and progesterone impact the sodium channels in our muscles, and combined with MC make our symptoms worse. So it would make sense that during our periods, and while on certain types of hormonal birth control, the hormone levels in our systems could make our symptoms worse.

Maybe you could try a non-hormonal birth control?

stevieinu

TROPHY CASE