Latest
I’m new here!
Hi, my name is SillySphynx.
#MightyTogether #Fibromyalgia #Myositis #antisynthetase syndrome
8 reactions •
2 comments
Myositis
Join the Conversation on
Myositis
Myositis
630 people
0 stories
46 posts
About Myositis
What's New in Myositis
All
Stories
Posts
Videos
Latest
Trending
Post
I'm new here!
Hi, my name is MyoSister4390. I'm here because I have a rare disease called Myositis and I am always looking at building a community of friends, family that also know what it is like to be chronically sick.
7 reactions •
3 comments
Post
I’m new here!
Hi, my name is chronically_ch_ill. I've been diagnosed with Dermatomyositis, Interstitial Lung Disease with fibrosis, Antisynthetase Syndrome (Jo-1), Ankylosing Spondilitis, Psoriasis, as well being neurodivergent for a couple of different reasons. I'm 34 and I've been dealing with my autoimmune issues since 2017. I feel like I have a fair bit of insight when it comes to being chronically ill, but I'm always up for connecting with other spoonies and learning different strategies to cope with the day to day.
#MightyTogether #Myositis #Arthritis #Depression #ADHD #Anxiety
(edited)
7 reactions •
3 comments
Post
#Fibromyalgia #MyositisArthritis #sciatica
I have Fibromyalgia, Myositis Arthritis & Sciatica & my mom tries to force me to do things that my body literally can't do bcuz of the extreme excruciating pain that I'm feeling. When I let her know that I can't do certain things on certain days bcuz my pain gets extremely worse when I try to do those things she gets upset at me & starts comparing her pain to my pain. Her pains have to do with her age, she isn't diagnosed with anything pain wise but I am like I said above.
There are just times that I'm literally not physically able to do certain things & she doesn't understand the spoon theory. It's just aggravating me so much & I cry my eyes out bcuz of her words. Sometimes, well most of the time she's not very nice.
13 reactions •
4 comments
Post
See full photo
Ugh lol we’re too responsible
Hi. I have fibro, hEDS, migraine…and now also myositis apparently idk…? I come back to this app every once in a while when things get really bad, and such a time is now.
Does anyone ever feel like dealing with a chronic illness is like the self-control Olympics? So two months ago my disability benefits got cut off adversely and now my basement tenant is failing to pay their rent. This all started happening right after I had reached a point of emotional exhaustion (compassion fatigue…? towards myself?) where I just wanted to take a break from trying to successfully diagnose/treat my symptoms (ever been there? ever been to so many doctor’s appointments in a row that just the act of getting there and sitting through the appt and getting back home throws you into a *physical* pain flare? yeah…). So I was already kinda over everything…
Here’s what I’m feeling (aside from lots of symptoms lol). If we never learned how to ask for help in the right way, we would get ignored or trampled over by other people, even when they have the best of intentions (some don’t). And learning how to ask for help is an important life skill for everyone to learn, but having severe chronic health issues puts the development of that skill onto a sink-or-swim, sometimes literally life-or-death trajectory. And that’s EXHAUSTING. The day I got my denial letter I had a drs appt in the morning that I almost dIdN’t gO tO because I had slept so poorly, it was a long commute to get there, and I was feeling so jaded about anyone having anything useful to offer me that I hadn’t tried before. But then sh*t happens like my life exploding and I’m reminded that I have absolutely no leeway, no leeway whatsoever, no room for other aspects of my life to go wonky (don’t even get me started on my family ugh lol) because 100% of my time and energy is focused on managing—*managing*, not treating—my symptoms. And I need something to at least make a dent in that 100%. It can’t just be all pacing and stress management. Not that those things aren’t important, but I’m talking about very specific (probably biomedical) treament that directly targets an identified pathology and leads to significant improvement. Would be nice. Kinda need it.
Bc all the other stress that’s going on in my life right now goes away if my illness does. Or almost all of the stress would, anyway. But as it is, I can’t go for a run to blow off steam, I can’t blare music in my car or binge watch TV shows because of headaches, I cancelled a trip to Florida because I already wasn’t feeling well and now there’s financial concerns…so no vacation for me.
This morning I was feeling all zen and happy like all I need is love and the sunshine to make me happy but now my mood has swung and I’m not the greatest. I’m feeling like the reason why I have to be so serious and responsible all the time is because I live in a world where scientific understanding is stuck in the 70s and nobody really has any compassion for anybody besides themselves.
I want to believe that’s not entirely true. In fact, I know isn’t, but I’m a little stressed out rn, and my heart is breaking. 💔
If you’ve read this far, thanks for reading, and I hope you are feeling safe and loved and relatively comfortable and low pain. Pic of my little bedroom haven for tax. ❤️xoxox
4 reactions Post
I’m new here!
Hi, my name is hippityroo. I've been diagnosed with Inappropriate Sinus Tachycardia, Cluster Headaches, Neuropathy, PCOS, lumbosacral transitional vertebrae (LSTV), IBS, Hashimoto's, Autism Spectrum Disorder, Bipolar Disorder, OCD, C-PTSD, and ADHD. I have a EMG/nerve test tomorrow afternoon and I'm scared out of my mind. Does anyone have any tips or advice? Maybe advice what to expect? Not knowing it driving me up the wall. Thank you in advance! We're testing for Myositis and Limb-Gurdle Muscular Dystrophy if that makes a difference on the testing?
#MightyTogether #Depression #AutismSpectrumDisorder #PTSD #ADHD #OCD #EatingDisorder #Osteoarthritis #AutonomicDysfunction #Myositis
6 reactions •
3 comments
Post
I’m new here!
Hi, my name is JackieLightheart. I'm here because I was recently diagnosed with Myositis - Immune-mediated Necrotising Myopathy.
2 reactions •
1 comment
Post
RNP + Ana +
Hi everyone! I was wondering if anyone could help me… I tested + for covid 1/6 and had a severe case of it… I am still on leave from work. I have had heart issues plus the breathing of course and severe leg pain. I was on prednisone 26 days and 3 rounds of antibiotics. The severe leg pain improved while on prednisone so maybe it is myositis? I was so slow at getting better that my dr tested me for autoimmune and my ANA and RNP were both +. I know that is mixed connective tissue but is there a lupus component with that? I have the malar rash, hives, severe gerd, and neuro issues that started in 2015. I am slowly getting better but will probably only work part time when I return to work… I work in a hospital so now I’m worried about being around so many germs after all this. Does anyone have any advice on the RNP? My appt with the rheumatologist isn’t until august 4th. #RNP #AutoimmuneDisease
2 comments
Post
The conflicting emotions that go with waiting for test results. #Fibromyalgia #MyastheniaGravis
I’ve had new symptoms that are due in part to myasthenia gravis, and in the bloodwork rheumatoid arthritis and lupus markers were found. I’m now waiting on a myositis blood panel, nerve conduction test, and possible muscle biopsy. There’s a special kind of fatigue making appointments with various specialists, getting blood drawn, another follow up with someone else, making appointments to go over those, etc. I completely and totally understand why they do all this, because if they can figure out exactly what I have going on, we’re all going to be better off with targeted treatment. But OH MY GOODNESS the wait. Then more waiting. And these poor overworked health care physicians and nurses and the whole healthcare system. I’m conflicted because I want them to find something to help them help me, but I’m afraid of what that something is. I look forward to confronting whatever this is so I can try to manage it best I can. #Fibromyalgia #MyastheniaGravis #Myositis #rheumatoid #Lupus
1 comment
