Dermatomyositis

Hi, my name is Chris_mom. I’m new to The Mighty and look forward to sharing my story.

My son was diagnosed with Dermatomyositis in April. He’s 33 and he now has a gtube and can no longer eat or drink anything! He’s very depressed and I’m just looking for help anywhere I can even if it’s just a prayer! Please I want my son to live and also be able to eat!!#MightyTogether

Hi, my name is Susangen_. I'm here because i have questions for others on the same dermatomyositis journey.

#MightyTogether

Hi, my name is Maribell. I'm here because

#MightyTogether #Dermatomyositis #TCellLymphoma

Hi, my name is Jwimmer. I'm here because

#MightyTogether #Anxiety #Depression #RheumatoidArthritis #PTSD #ADHD #SchizoaffectiveDisorder #AnkylosingSpondylitis #Dermatomyositis

Hi, my name is Tryan553. I’m new to The Mighty and look forward to sharing my story.

#MightyTogether

#parkinson 'sDisease

#Dystonia

#Dysautonomia

#IdiopathicPulmonaryFibrosis

#Dermatomyositis

Hi, my name is BrilliantGoddess_ish. I’m new to The Mighty and look forward to sharing my story and learning from people who are survivors like me.

#MightyTogether #Fibromyalgia #Dermatomyositis

Hi everyone, new to the group and happy to have found it. I was diagnosed with #Dermatomyositis last year when I was 26. I was experiencing red rashes on my hands/knuckles, feet, and knees as well as a lot of joint pain, especially in my hands and wrists.

A few of questions; any answers/discussions are appreciated:

1. Has any one else been diagnosed this young? My doctor told me that it is more common in older adults.

2. Does anyone else experience joint pain? I don’t experience the muscle aches/ fatigue; is this common to not experience this? Will I eventually experience muscle pain/fatigue?

3. My red/itchy areas(hands, feet, knees) did not respond while to cortical steroid creams and eventually I stopped using them and not kind of float by on other creams but nothing seems to truly help. Has this been the case for anyone else?

Thank you to anyone who reads and/or responds. I’m feeling extremely overwhelmed by this diagnosis and quite depressed because I feel like my life will be forever changed and that truly scares me. I’m terrified for how this disease will progress and I don’t want to be unable to do my favorite activities (playing piano/guitar, drawing, hiking).

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

Have you felt like your illness has made u behind in life? I see people my age achieving great things and i am still here like a failure.
How do I deal with this feeling and accept the fact that I am not where I wanted to be currently in life.

A dermatomyositis fighter

#RareDisease