I don't know about "paranoid," but I sure feel like a hypochondriac sometimes. I, too, often wonder if it's PM/DM, or a coincidence, or just my imagination.

BTW, if you are on prednisone, it can cause digestive issues and headaches--at least that's why I've been told. And fatigue definitely goes with PM/DM.

Perhaps I should be more paranoid...but, no for me. I used to feel like I had to tell my doctor every little thing that was going on. Now, i just wait for her to ask me if anything is new or different. If my labs are stable, then I don't worry too much. If I worry, I stress and that's my trigger.

Eventually, you'll get used to your new normal.

I worry most about the increased cancer risk. Cancer runs in my family. And I worry about getting worse physically. My Husband is disabled and he ould not take care of me if it required lifting. I worry about not being able to take care of my Daughter. She has Diabetes and it takes a lot of daily management. I was diagnosed in March 2010. So far I have not gotten worse, but I sure have not gotten any better. I take Methotrexate on Sunday night and for three days I am pretty wiped out. It makes me nauseous and I take something for that and it make me even more tired. I feel like I am walking through wet cement most days. And I usually start to itch again before it is time for my meds. It is what it is. I count my blessings. Good insurance and family and friends that love me.

I get your joke at end of post and No paranoia is not part of DM. But I think for us to get this disease our whole immune system is not right so lots of things that happen may not be classic DM or PM but they are bcause we are sick. Does that make sense?

I so here what you are saying. Everytime anything feels odd I wonder is this the disease or am I just going nuts.

I am not even sure at this point what is part of my diagnosis. How about this for paranoia, I am nervous to see my Rheumatologist tomorrow because I think I feel much sicke then I am and he wont take me serious enough.
Now that is paranoia!

Hi
Well, when I was first diagnosed with DM, I studied it thoroughly and when I came up with symptoms that were not in the diagnosis, I started looking for other known causes. I found: when ankles and wrists became weak, it was because of prednisone induced high blood sugar, not because of the DM, which affects proximal muscles, not distal muscles.

Diabetes is controllable, so my doctor and I have made all kinds of adjustments to control it. When I spiked high fevers, this is not DM -it is a separate infection and is controllable with antibiotics.

Also -you probably already know, but be aware that prednisone can cause some muscle weakness in some people. It may be something that you just have to put up with until such time as you can get off the prednisone. But again, knowledge is power and once a symptom is known, you then have a choice in how to approach it. For myself, it is very important to take as much power in getting better as is possible. That sometimes includes understanding what is not possible, or what might take extra patience. Charting symptoms for a while might give you some insight into what is and what is not associated with your version of DM. This might also help your doctor in tayloring your treatment. Hope this helps.

Luckybabe I can so relate to you right now!!! My rheumy has taken me off prednisone so my symptoms have escalated in leaps and bounds. Everyday now I come up with something new and I do question it! Who knows whether it is of it is not from DM. What I am trying to do is stay as positive as possible because I think if I were to give into everything I would go nuts.....so much going on ANC no real answers!!!! The suggestion about writing things diwn is good but try not to dwell!!

Hugs!!!

Barb

You are not paranoid. The problem that I have with DM is that it preoccupies my thinking too much. I am now taking an antibiotic while tapering on prednisone. My legs and ankles have puffed up with water retention. I can not tell if it is the taper or the antibiotic that is causing the puffy legs. Everyday is different with DM and never a dull moment. I have learned not to worry. It is what it is and do not get excited about what happens. I used to get on the phone to call the doctor right away but not anymore. Just move forward and try to get your mind on something else. If you are in bad pain then call the doctor; otherwise, treat it like the circus and watch the show. Good luck

Thanks everyone for some great replies and thoughts - good to have others in the same boat!

@ lisa1564

If you tale methotrexate in pill form, you should try the self-injected version; there are much less side-effects.