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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

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

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

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


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

"How Are (Really) Feeling?#ChronicPain #EhlersDanlosSociety #Myositis ,

Yes, you !

One thing, one Really Big LittleThing, that I said, starting as a child, was (when asked how I felt?)

(pick just one,)

-not too bad
-a little sore
-kind of tired
-having tummy trouble
a little sleepy,

And then, I always said, "and how are you"?
I turned it back.
(because having attention focused on me, gave me anxiety). Why?

My Momma had made it painfully clear, just how aggravated she was when I was sick or home from school. I was sick a lot, especially from 1st to 9th grade. Streph, EBS, Bronchitis, Allergies, Colds. Aches, sprains, broken bones. She also hated driving, and Drs., So I was usually treated by a phone call, and an RX for Amoxicillin.

I always cared more for others, and I really wanted to be happy, active, an asset, loved, appreciated.

But, my mistake was that of being afraid to push others away if I were to be negative, or honest, about how I was.

That little habit turned out to spite me, by making me "sound" stronger or healthier mentally and physically, than I really was.
People wanted to be released from having to care about it.

So, when I started needing those same people to hear me, to realize that I felt worse, or my condition was/is really serious, they found it hard to process.

All my years of saying, "I'm Okay", had Brainwashed them into refusing to think that I was not "Okay, or Just Fine, or Well Enough". So, Then, when I did limp, or crash, I felt like they saw me crying wolf! Poor Me!

My desire to make things easier for everyone else, cost me my family, and my nice life. Because for 25 years I've been increasingly deteriorating, but they don't have time, anymore, or compassion, or empathy, to see how much I truly need them.

Don't Sugarcoat your feelings. If they seem too sharp to share; If you can't get the right thoughts out, try writing them as letters, or using a journal that you could share, at times. Stick up for yourself!

And there may be times where you have to call your problem, an "8-9", instead of a "3-4", so they sit/get up or notice, you Really need help. You really Deserve it! So do I.
#MixedConnectiveTissueDisor -ders

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Too Many Obstacles to Bear …

I just would love one day without any kind of issue especially when it concerns my health … I am going thru so much lately with all these Diseases that just won’t let up … Lupus.. RA.. Pulmonary Fibrosis.. Myositis DM .. MPN - Myoprolifative Neuroplasam/Rare Blood Cancer within my Bone Marrow .. Thyroid.. Macular degeneration in my Right eye.. Raynauds Syndrome.. and I have fallen 5 times this past summer due to neuropathy in my feet 👣… so now still healing from a 4 fractured pelvis, fractured shoulders, fractured spine … I mean along with my u supportative living situation with my mother and her EVIL husband that I constantly get demeaned daily … my own mother doesn’t even believe I am sick, she’s called me a Junkie 3 times all because I am on ONE pain med for ALL the pain I endure and even that doesn’t give me a half normal life .. I also have a huge hernia that was told cannot take out because I will die on the table so Hopkins put me as Terminally ill 😷.. and now my mother is moving and I was told I need to find a place to live .. and I am to the point in my health to where I need constant care…. SO AFTER ALL OF THIS that I actually deal with daily I still find a way to put a smile on my face … I use to smile all the time and laugh and love life but now I do t see the point .. the only reason I am pushing is for my twin boys … they are my life and soul … but if anyone has any ideas of a person like me could look into for living that’s not a nursing home could you please share ??? I was told about apartment complexes ran by health care and for disability patients like myself… sorry for the book but needed to vent …. Thank u for listening ♥️♥️ #beingsickSUX #smile

1 comment

Can myositis cause a sprain?

I was diagnosed with UCTD two years ago, with my symptoms follow Dermatomyositis and Lupus patterns. My hips are particularly week, despite consistent weight lifting and physical therapy.

The muscle weakness causes me to stumble often. Yesterday when I stumbled, I caught myself before falling by engaging my hamstrings. I immediately felt pain. My physical therapist told me today that I should visit my orthopedic surgeon because I likely tore my hamstring.

Is this normal? For myositis to indirectly cause an injury? Just wondering…

#Myositis #UndifferentiatedConnectiveTissueDisease

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Lymph pain but not enlarged?

Been in the process of a diagnoses for 2.5 years. Rheum has put possible #UndifferentiatedConnectiveTissueDisease #Lupus #Scleroderma #Myositis #mixedconnectivetissuedisease
I have esophageal dismotility and #SmallFiberNeuropathy and a high ANA but no specific ana markers. What has my rheum stumped is I don't have an elevated CRP or SeD rate, but I do have joint effusion on the xrays and I'm losing hair and have huge puffs under my eyes all the time with sun rash. No lupus markers though. When it gets bad I have pain in my groin and armpits and i can feel lymph nodes that aren't very big like maybe marble sized but they are tender and achey. Of course I get nervous they are missing something like cancer. I have been checked twice for multiple myeloma and it's not that. Wondering if anyone else had this lymph pain? I have neurological issues as well so it has confused the doctors. First they thought myasthenia Gravis and then MS but my scan was good 2.5 years ago. I've had EMG etc. I have a lot of muscle twitches like zaps and buzzing along with nerve pain and chronic weakness. They tried getting me into Mayo but I was denied charity. I feel like they have no idea what is really going on with me and it would be nice to know others have similar symptoms and mine aren't so bizarre. Sorry for the long rant. Photos for reference lol no shame in my autoimmune game.