dermatomyositis and weight control

There are many people overweight, underweight, and of normal weight who have Dermatomyositis. Dermatomyositis is believed to be triggered by certain toxins, viruses, bacteria, chemicals, and even UV Light rays from the Sun and Fluorecent lighting. Being overweight or underweight is caused by other problems such as having a disease, cancer, or just taking in more calories than your body is burning. If you have a Myositis disease and activity is diminished, weight gain is likely and probable. If you have a symptom called dysphalgia, you are likely to lose weight, but not necessarly. If you have a malignacy, you will lose weight. Taking certain needed medications for myositis like prednisone can cause weight gain. The only way to get to a normal weight is by diet and exercise and in some cases surgery is a necessity. Being overweight will lead to Dermatomyositis and Polymyositis being a crippling disease much sooner and is also a higher risk for heart disease, stroke, and cancer.

 

Hope this answers your qustion.

As someone who went from extremely active (regularly hiking and running and yoga 4x per week) to as active as possible with DM (1 hour gym visits daily, 1 hour walks daily), I am frustrated that I seem to be unable to build muscle, and have gained non muscle weight (fat). I have definitely changed my outlook on life in general, i.e. how I look is less important than how I feel, but I find it hard to know if the weight gain is due to the high doses of CellCept and prednisone, if it’s because I’m doing the ‘wrong’ workouts at the gym, or simply that the enzyme is eating at my muscles and I simply can’t build the muscle to burn the fat. There are many issues that having and autoimmune disease bring up (like pain, fatigue, susceptibility to infections, etc.) I just haven’t seen much discussion on the weight issue. Managing the many other symptoms is priority and focus of my amazing doctor and treatment plan- I’m just curious if others struggle with this aspect of it. It’s sort of demoralizing to struggle with weight issues on top of everything else! I really hope someone finds a cure to this horrid disease.

I have to disagree with the post that weight gain from DM is from taking in too many calories and not enough exercise. This comment is far too generalized and the author clearly has no experience with dermatomyositis, which due to its rarity is no surprise. This disease causes necrosis in muscle tissue; muscle is necessary in burning calories therefore someone with DM doesn't 'burn' calories the way a normal body can, resulting in weight gain. As someone who has had this disease for 12 years, is not on steroids and does not over eat, I can attest that the weight gain is real and likely cannot be avoided due to the muscle disease this condition causes.

I agree I have extreme fluid retention and swelling that lead to fat on top of it. Sun swell, stress swell gluten swell pretty much seems like anything you want to do flares it up just miss having a life even little bit of one.