When you’ve just been diagnosed with a rare, debilitating, chronic condition, it can be hard to find your footing. The whole terrain seems to be different, unfamiliar, confusing. Here are 10 tips for first baby steps on your myositis journey from a nurse who knows the territory well.
- Be patient with yourself. Life after diagnosis will likely be very different than what you’re used to. The first year is the hardest; don’t give up.
- Learn as much as you can from TMA, not from Google. The search engine is nearly 20 years behind and sounds scarier than it often is. Searching Google Scholar or PubMed are also reliable sources, but the information is geared toward researchers and clinicians so can be difficult to understand.
- Consider a second opinion at a myositis specialty center. Myositis is a rare disease, and many local doctors are not experts in treating it.
- Create a medical binder where you collect all the information about your condition, including visit summaries, test results, and questions you have for your next visit. This information is also essential for family and doctors if you are unable to speak at some point.
- Keep printed records of abnormal tests.
- Keep a list of all your medications, including those prescribed by non-myositis providers, over-the-counter drugs, and supplements. Also include drugs you did not tolerate and why, so providers do not try to prescribe them again.
- Check TMA’s Myositis Tracker to document your symptoms. Add this to your medical binder before every doctor’s visit.
- Conserve your energy by cutting corners where you can, at home and at work. I found an Instant Pot and rice cooker easier for fast meals in a lightweight pan.
- Ask for help. Consider an app like Lotsa Helping Hands to get others to do laundry, run out to the store, or bring your favorite food. Carpooling and other appointment help can be scheduled too.
- Keep moving as much as you can. Exercise is medicine for myositis. Start slowly and increase as tolerated. Ask for PT and/or OT if you need help with moving and managing at home.
Shawna Nielsen is a registered nurse who has lived with DM for more than 26 years. She is a tireless advocate for those who live with myositis, serving as coleader for TMA’s Northern California myositis support group and managing two myositis Facebook support groups.
Shawna,
Thank you for your inspiration. Your faith, words of encouragement, and advice have gotten me through my first year of this DM journey. I appreciate the time and energy you dedicate to passing along tips to those of us new to DM. I was diagnosed a year ago. I had the characteristic rashes for nine months before my muscle involvement started. Thankfully I was starting Ivig in three weeks, so it was a quick turn around. God’s timing is always perfect!
I look forward to the other blogs you share with us. You are a blessing to me.
Shawna,
Thank you for these great tips. Since my diagnosis over 4 years ago, the first thing I did was create a medical binder. This is a necessity because it is overwhelming! Organization is key.
Each doctor has an index and in their section I keep the latest lab results, current notes from previous visit, questions for future visits, doctor contacts, and list of current medications. Doctors love it when you are prepared as it makes the visits easy and effective.
I was diagnosed with DM June 2021, 3 months after receiving the Moderna injection.. My rheumatologist documented that she believes the autoimmune diagnosis was indeed caused by Mrna, I started IVIG 3 months after that and seemed to be in remission for 7 months. DM returned and now I am back on monthly infusions. Thank you for this blog. I wonder if the on-off remission is a normal thing with DM?
Thanks!
I was diagnosed with Dermatomyositis in 2018 and later diagnosed with Mixed Connective Tissue Disease. I was having symptoms for many years before. I am so thankful and appreciative for Shawna and this group for the support and advice all these years. I have learned so much with different medications and what helps side effects as well as tips for nutrition for inflammation and just dealing with this disease. Just an amazing group I only wish I found them sooner when I was first diagnosed but so lucky to have them all these years.
Thank you Shawna! You have been a great help to me and others with your dedication and knowledge of Myositis!