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).
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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…
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
I think one of the biggest injustices we face, as rare as we are, is being told to expect that our Primary Care Physician, the person in charge of "managing our health, tests, procedures, results, etc." will actually feel responsible for our progress, or even want to.
...."We' are going to be 50x more complicated than their average routine check-up! "We" aren't ever going to fit into that 15 minute slot that they have for us!!
"We" can't get to the bottom of our conditions, if they keep bailing out on us.
.... There needs to be another Specialty. Definitely not the Rheumatologist, who often knows a tenth of what we will.
There needs to be a Category of Interventional Physicians for Auto-Immune and Connective Tissue Disorders. Don't look away, but Yes, it would be like House and his team.
I chose a new PCP last September, an MD, a DO. Both, which she assured me made her uniquely more experienced to help someone like me. Her biography on line sounded great. I told her that I could help her learn more about these rare Syndromes, and she would become an invaluable member of our medical community!
... But, as I started to discuss me, and handed her (the most pertinent tests and documentation), my backstory of tests I had already gone through, she got that "Deer Doctor in My Headlights Look".
You know the look...the haughty ones will laugh in your face. They might even call a couple students in, to meet you or observe. The less experienced ones will realize that their bluff will be called. Whether by you, or the next Zebra.
... She nods with understanding.
.... She gives my files to the staff to copy.
.... She spends way more than my alloted time, typing every detail into my patient history.
I'm excited!! She's listened!!
She has me do a couple of those Yoga-ish arm to shoulder stretches before I leave, and promises to be in touch as soon as my very first labs come back.
But, when I next went to my Pt portal, her notes read, " Diana has a VERY COMPLEX CASE". I could feel her crawling under a rock to avoid me. All that hope I had, for just one more PCP who wanted to lead, or even just be on "Team Diane". *Poof* Gone.
I've just lost valuable time that I spent searching for this new Specialist, or lining up in the queue for months to get in to see them, having anxiety, IBS, and gritting my teeth as I walk into yet another new Drs office, for the same Damn result.
The negligence I feel, and their deficit in current, updated, relevant education, is terribly disheartening.
I know I will probably never get ahead of the curve of Western Medicine.
#EhlersDanlosSyndrome , #sjogrens Syndrome, #Polymyositis , #Dermatomyositis , #Fibromyalgia , #GAD , #MDD , #DDD , #RA , #oa , #AnkylosingSpondylitis , #mixedconnectivetissuedisease, #MCTD , #Rh -Disease, et al.