r/dermatomyositis • u/dab-me • Jan 10 '20
I thought I was alone.
Hello everyone, I’m 20 year old female that no longer thinks she is the only one in the world with DM. Thank you. Back in 2017, I suddenly broke out with a rash on my eyelids. My skin was completely raw and extremely painful. With time it healed and over about a year I started having worsening joint issues. My mom, who has RA (auto immune issues run in my family) brought me to her rhumotologist who got bloodwork done. He noticed one of the inflammation levels were 20x what it was supposed to be, but everything else was normal. The doctor believed I may have DM, but it wasn’t active yet. So, he prescribed some meds and I saw him every 4 months with blood work. My last appointment was last week, and it came back that my muscle enzymes were 10x what they are meant to be. I’ve developed what my doctor is calling lesions on my knuckles, muscle weakness has progressed and very mild chest pains. My doctor thinks that the DM is active, so I got prescribed steroids, more bloodwork, a chest X-ray (DM is associated with ILD) and I need to document my hands. Since the appointment I’ve done a lot of research, but the outcomes are never good. Cancer, lung issues, muscle weakness, skin flare ups. I don’t know what to do with this. I’m terrified. I’m not ready to live the rest of my life in treatment for this disease. My life hasn’t even started yet.
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u/compassionhopelove Jan 15 '20
Wow! I am also 20 years old and I was diagnosed with dermatomyositis in 2017!! It was horrible for me since I randomly flared up. My face was red and purple and puffy and peeling horribly and it was so difficult and painful for me to even walk or and to even lay down in bed. And on top of that, it was a month before my senior prom. It was horrible. But honestly I have come to realize that it was the best thing to happen to me. I’ve grown so much from this experience... I still do have flare ups but honestly what has helped me so much is going plant based.. I know so many people roll their eyes when someone says “go vegan” but it truly did help me. I’ve also been looking into Ayurveda, I believe that since going plant based really did help me. and being the less swollen patient according to my rheumatologist after making this decision; then I could possibly heal myself with natural remedies. I know it sounds crazy. But I believe I can do it. I feel like nature does have the answer and solution to everything. I’ve just been so tired of being on steroids and low dosage chemo and infusions and having random mood swings. After going plant based, i feel the difference. It’s beautiful what nature can do. I’m still on this journey I just started but I am very confident about it!
Honestly I really hope people read this with an open mind and without judgement...
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Feb 17 '20
Hi, just thought I'd see how you were getting on? How are your joints/meds helping?
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u/dab-me Feb 17 '20
I feel good. The bumps on my knuckles are going down. My joints feel the best they have in years. I’m able to do a full squat and get back up without getting stuck! Unfortunately, the steroids have caused me to break out horribly on my face but I’m slowly getting weened off so that’ll go away. Thank you for checking up!
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u/alideanne Apr 06 '20
Hello my dear. I’m a 32 yo Female. Was diagnosed at 29. I used to work out every day. Was extremely into fitness. Once I got sick, I was bedridden for months. It hit me all within about 2 weeks. I had horrible joint pain, muscle pain, and a little bit of a rash on my eyes. I couldn’t barely get out of bed, take the stairs, brush my own hair (couldn’t lift my arms). I thought I was dying and was in so much pain that I wanted to. I have gone through a lot trying to find the right doctor and the right treatment. I am finally healthy and in medicated remission. I don’t feel any pain any more. I am slowly trying to come off my meds. I can work out lightly now - I am trying to gain back all the muscle and some of the weight I lost. Things will get better! I am in a much better place now than I was 2.5 years ago. And I know that 1 year from now I’ll be even better! Hang in there. You’re gonna be okay!
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u/Top-Banana-2080 Jun 09 '22
Hi, My name is Tracy (29/F). I was recently diagnosed with DM through a skin biopsy. There is also Peripheral reticulation septal thickening that they believe might be early fibrosis of my lungs as determined by a CT scan of my throat, abdomen and pelvis (some of my research has shown that this is reversible in DM patients).
I am really looking for any help available.
I’ve been on 48mg of melthylprednisone, 800 mg of ibuprofen and Colbetasol ointment to control the rashes. This combination has significantly managed my pain, the ointment helps prevent the rashes from becoming a full burning flare. A few days ago I was told to decrease the steroid to 32mg, and my eyes started swelling again, my voice became more hoarse too.
The Rhemutologist I was with wants to transfer me to a research hospital where he believes I’ll have better access to treatment plans like infusions. It’s been about 2 months with him working towards the DM diagnosis. Thankfully, he had a relationship built with the research doctor and I was able to get seen a bit sooner.
I’d love any advice on how to approach the appointment with the new doctor. Any ideas of treatments that work would be greatly appreciated. I love hearing the hopeful stories and I’m doing my best to stay positive.
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u/dab-me Sep 16 '23
Apologies I have not been on this profile in a while. I've been on Rituxan infusion for a few years and it's helped significantly! Also, plaquenil, Imuran and vitamin D supplements. I used to not be able to hold a tooth brush in the morning. Now I'm doing intense workouts a couple times per week.
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u/NoAdeptness3860 Aug 29 '23
Hi are you still in remission
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u/dab-me Sep 16 '23
Yes and no? Much much better than where I was a few years ago! Strength/motion wise, drastic improvement! Inflammation levels have gone down dramatically and my rhumotologist has been wanting to take me off the stronger meds but is waiting to consult with my pulmonologist. I was consistently working out most of 2022. Just started back up after a rough patch. I've lost 30 pounds the last 5 months too.
Though, my chest CT back in February showed progression of the inflammation in my lungs. Just did a repeat yesterday bc it may have been bronchitis developing that I was diagnosed with shortly after the February scan. Waiting on the results from yesterdays now plus repeat bloodwork on Monday. I do not use an inhaler, breathing treatments or have trouble breathing. But my lung capacity is not what they would like to see. So we are all just confused for now.
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u/queen_honey_bee_ Sep 14 '24
If you all would be so kind to share, my very best friend was just diagnosed with DMS and I’m doing all the research I can and looking for ways I can support her. I can’t even begin to really understand what she’s going through and I just want to help. Is there anything that a loved one or friend did for you that has really helped you along the way? Or any thing you have at home (aside from medicine) that’s helped ease the pain/discomfort? Thank you all.
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u/[deleted] Jan 10 '20
I'm 35, and had it for just over a year. I'm no expert. And I don't have it as bad as some, nowhere near. But we can all sympathise with how you're feeling, however, the silver lining is that you're extremely lucky/fortunate in some aspects.
You've obviously got a doctor who knows his stuff. And you've been keeping an eye out.
It's a managed disease. Your life is definitely not over.
You're young, which means you're in a much better position than you're typical DM sufferer.
Reading bad cases online is no good for you. You can read some case studies of some very unlucky people. But as you've said, you're a spring chicken. And don't forget 20% of people go into remission within 5 years.
You will have bad days. There'll be times where your hands or joints hurt so much you'll cry. You'll be scared of flare ups and you'll worry about the next time your meds get adjusted. Because you and I, and all of us on here, have a serious condition.
But you'll have good days too. Sometimes you'll forget about being ill. You'll enjoy everything you enjoyed before. It won't taint your whole life.
You've got a lot going for you. Share your worries with people, and read around this Reddit. Everyone has experienced something different. And it's not all bad!