#myositis

my legs have been getting worse lately and lately my entire body has been hurting,, its better during the day but i wonder if ill need a rollator/walker. does anyone have any advice on how to figure out if i need one or if i should use one? my cane seems to help a good amount but it doesnt help both of my legs

If a creator disables comments on a post, that means you are not able to comment on the post because that option has been taken from you. It’s that simple, but I think the reason many folks with ableist thinking struggle with this truth is because it scares them. You cannot be expected to write if you have no hands, but many people are too afraid to imagine what their life would be like if they had no hands. So they pretend everyone has hands and the idea that they could, one day, theoretically, have no hands, is preposterous.

Anyone can become disabled and/or chronically ill at any point in their life. It can happen in a blink of an eye, and we have no control over most of it. Sure, you can make good choices in not putting yourself in harms way—you can choose to eat well, exercise, avoid tobacco and alcohol, have good streets smarts—but can you control the drunk driver barreling down the road, headed right for you? Can you prevent your connective tissue from attacking itself? Can you stop a hereditary condition from becoming symptomatic just by willing it away?

The lack of control really frightens people and they will often lash out on us for it because our presence denies them any more blissful ignorance.

“You’re too young to be that sick!” = “It makes me incredibly upset that youth can be that ill and I’d rather not acknowledge it as reality, and instead suggest that you are exaggerating, or flat out lying, about your experiences.”

“Just eat *insert diet*!” = “The fact that, no matter how healthy I may choose to eat, and no matter how much research I do, I could still become chronically ill, is a terrifying prospect and I refuse to accept it.”

“You don’t really need that mask.” = “I personally do not like masks, and cannot imagine having to consistently wear one to feel safer. I also do not want to acknowledge that not all immune systems are efficient ones, and that mine could go haywire at any moment.”

So I had a whole immunological panel done and apparently, I have myositis-specific antibodies (PM/Scl-75 and NXP2) several months after stopping Ajovy and also, I had PM/Scl-75 a few months after starting Ajovy and being tested for that after getting really bad fatigue and joint pain. I also had positive dsDNA and high ANA.

The rheum’s working theory is that Ajovy had caused those specific myositis markers and that chronic migraine leads to chronic inflammation as well. This is pretty bad — I sure hope I can report those as side effects? Has anyone else gotten positive myositis markers during and several months after stopping Ajovy?

I also found out at the rheum visit that apparently, my joints are hypermobile and that is causing my joint pain! I also have documented muscle weakness and eye muscle dysfunction which is causing my vision problems, but they have no explanation for it. Sometimes I am so weak that I have trouble chewing and swallowing food and the rheum thinks it’s psychogenic. I hope I can fix that, because it’s just scary and depressing.

I hope I can get better soon because the quality of life decrease has been drastic. I have no energy to move at all. I am so fatigued, despite having way fewer migraine days now than daily thanks to starting atogepant which is a miracle drug.

SO. it turns out that I didn’t get this new disease/diagnosis BECAUSE of covid, but it got much worse because of covid--which allowed my rheums to finally diagnose it (AFTER TEN YEARS RIP). dermatomyositis is really difficult to diagnose mostly because it’s so damn rare; what I read was that like 40-90 people in a MILLION get it (or, at least, are diagnosed ...), so most drs aren’t very familiar with it & don’t look for it.