any members out there feeling very frustrated with going to the dr and finding out everytime you go theres more wrong with you? just 2 weeks ago at my 4 yr recheck appointments,now not only do I have polymyositis (just to name one thing) I now have a hiatal hernia, bilateral (both) glenohumeral arthritis, (arthritis in both shoulders). my rheumy has already injected my shoulder once but now I know why they both have been killing me. oh and also now a fatty liver even tho im not a drinker and never have been...ugh pain in shoulders and neck are almost unbearable, sometimes I wonder how much more pain can I take
Hey Wendy,
I notice many patients with Myositis suffer with additional diagnosis's. So far I have been "lucky" and have really only had sleep apnea, Raynaud's and Carpal Tunnel added to my list since Dermatomyositis.
I get frustrated going to the doctor and telling him the same thing everytime and him acting like he didn't know. Plus he always acts surprised "You aren't taking Prednisone anymore?" No doc, you took me off like 4 months ago. He has notes sitting right in front of him. I have to tell him every time that I have Carpal Tunnel even though he diagnosed me.
I'm so sorry about your new diagnosis's. What can they do about them?? The arthritis I'm assuming will be treated like the Polymyositis?
How are you treating the pain? I take Vicodin and the last time I went to do an automatic refill, the pharmacy wouldn't refill it without me going to my doctor to get a paper prescription. They are cracking down.
Well, I really hope these are the last new surprise diagnosis for you and you get some relief soon.
Nichole, great to hear from you. I’ve been on percoset for about 4 yrs now it helps somewhat but I take ibuprophen 800 mg for breakthrough pain, which is tearing my stomach up, but oh well…I’ve got polymyositis churg Strauss sjogrens arthritis in my back knees fingers asthma hypothyroidism, and the newest arthritis in both shoulders fatty liver hiatal hernia, of which most are complicated things in and of themselves but add them together, then what they use to treat 1or 2 things, you really shouldn’t take for the other things, ugh. I’m tired of it all. Sick and tired. Ready to stop all meds and say to hell with it all. Which I shouldn’t but that’s how I feel. I really don’t mean to whine, I know there’s plenty of folks who have it a lot worse. I’m thankful for my life too, it just gets to be a lot at times, which you know all to well.
Some people may have it worse, but that doesn’t take away from how truly crappy you feel and how it can bring a person down. I know.
You really are a trooper, that’s a lot to deal with. I don’t know a whole lot about pain meds but I think Percocet is stronger than Vicoden. At least I feel that way because it knocks me on my a@@! Lol!! I hang onto those for my worst days though. I had them when I had shingles.
Sorry I’ve been gone for a while.
Is everything better now with your shingles, I know you had a bad time with them. Yes I know you’ve been gone haven’t seen you around
Oh yeah, they’re all gone and the nerve pain went away, hallelujah! 
Just started going back for Rituxan to see if that will help me move around better. It does seem to help after a couple of months.
So are you pretty happy with your treatment plan? Besides being on meds for who knows how long. Plus I can’t imagine you are happy with injections for your shoulders. Is surgery an option? I don’t know if arthritis can be operated on, I’ve just never heard of it in the shoulders, so that’s got to be painful and cause a lot of tension.
My meds are more geared towards the poly, churg and sjogrens. The pain meds were originally rx’d for my back and muscle pain, but I’ve found its not really helping with my shoulders, it appears my shoulder issue might require replacements at some point but not sure how that will work with the autoimmune stuff, so I might just be stuck on that. My family dr told me I was his complicated patient, and so did my lung dr. So who knows. That’s why I get frustrated. Everytime the rheumy gives me meds she has to clear it thru the lung dr. Then back and forth…
That’s not good. I have heard of a few people getting hip replacements due to bone loss because of pred. So that does makes sense, why not, if the arthritis affected them so bad and you can take the surgery hopefully it will work.
I can imagine having everything cleared through the lung doc being frustrating, as if you don’t wait long enough as it is.