Myositis

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.

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

Hi
I am wondering if there's a myositis groups or even just people that have a type...

Hi, my name is JackieLightheart. I'm here because I was recently diagnosed with Myositis - Immune-mediated Necrotising Myopathy.

#MightyTogether

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

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

Yes, you !

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

(pick just one,)

"Oh,....
-not too bad
or:
-ok
-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.
#EhlersDanlosSyndromeAwarenessMonth
#EhlersDanlosSyndrome
#ChronicPain
#Dermamyositis
#Polymyositis
#MixedConnectiveTissueDisor -ders
#Fibromyalgia
#sjogrens
#Anxiety

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