Patient Story

Shally Puri

I am a 37 year old woman and I was diagnosed with myositis after 3 years of suffering mentally and physically due to lack of knowledge about this disease and its treatment. My motive is to spread more awareness about myositis because if you get treatment on time, then you will get better in no time.

After getting COVID in 2020 I got 90% frozen shoulders and also I was not able to gain weight. I consulted a physician and they told me that it is one of the side effect of covid and some nutritional deficiencies, so you will get better after one year with supplements. After one year my symptoms improved, but I was still underweight and not fully recovered and had weakness in my body.

“Listen to your body, get the right diagnosis. Mental health is key in fighting myositis. Stay strong, recovery is possible. 💪”

In 2021 I got pregnant and I faced many complications in pregnancy like liver cholestasis, pre-eclampsia, gestational diabetes and my baby was born prematurely and was in NICU for a month- now she is thankfully a healthy child. After my delivery in 2022 my symptoms related to muscle stiffness and weakness were getting worse. My gynecologist told me that it could be because I already had weakness and after delivery it is common in some women, so again they gave me supplements for 6 months. My symptoms then improved but I still was not fully recovered. In January 2023 I was not able to stand from sitting position and also could not get up from chair so I consulted an orthopedic surgeon and I told him I think I have myositis but they were not fully convinced. When I did not recover after their medication I requested them to test me for myositis. They did an EMG/NCV test and my EMG results were abnormal so again they suggested some blood tests that clearly showed myositis. Finally I knew what is going on in my body and I was right about my illness. After my diagnosis I was admitted to hospital for 3 days to get a high dose of steroid to suppress my inflammation and after three days my test results were normal. Now I am on medication and my symptoms are getting better with physical exercise, lifestyle changes and medication. If I got the right treatment three years ago, me and my child may not have suffered so please don't ignore any symptoms because your body always give you signs if something is not right. You also need to have the proper diagnosis if your symptoms are not improved after supplementation/medication given by your doctor. Listen to your body and learn more about this. Also, accepting this disease is really hard but with a strong mindset and positivity you can win any battle, believe me it really works. Mental health is really important in the fight with myositis, so never ignore this. If you are mentally healthy then it will cure 50% of your problem. I feel so much gratitude that I finally know about my disease and I know I will soon get full recovery with strong mindset and with the right treatment, because if I can give birth to a child in this condition then my body can do any magic to make full recovery from this disease.. so be strong! 💪