Here is an article written by a fellow Myositis patient. It has some great advice on how to talk to your doctor about pain that may or may not be Myositis related.
He didn't mention IBM, but know that you are also included in this.
Pain and DM/PM
The statistics say that only about 1/3 of DM/PM patients complain of pain, and generally specialists regard that DM/PM does not usually cause significant pain. Some go so far as to say DM/PM never causes significant pain.
That doesn't mean you don't have pain. But it does mean your doctor may reject what you are saying if insist your pain is from DM/PM.
You don't need to change how your doctor thinks to get your pain treated. You just have to talk to him in a way that addresses how he thinks.
To us, we see the big picture, we "know" we wouldn't have that pain if it wasn't for DM/PM.
But doctors are looking at the micro-level, what is the immediate cause of the pain, so they can treat that immediate cause. He's trying to figure out if its strained muscle pain, tender muscles (pain), pulled tendons, bruised cartilage, joint instability pain, cancer, drug side effects, high blood pressure, tension from job pressures, fibromyalgia, whatever.
The pain from each of those causes is treated differently: Tylenol, muscle relaxants, physiotherapy, neurotransmitters, cognitive therapy, cancer therapy, blood pressure medicine, a rest from work, a rest from house work, an change in DM/PM medications, new shoes*, etc.
And those are all things I've seen different people here say worked for them and their DM/PM pain.
Different people, different sub-types of DM/PM, different medications, different occupations -- those factors means different pains -- and different pains mean different treatments.
I really hope those of us not getting adequate treatment for our pain can communicate their pain issue to their doctors in a way that will get them the appropriate treatment for whatever sort of pain it is.
1) Your pain is individual to your sub-type of DM or PM, and it may be individual to specifically to you.
2) Fully describe the pain at each appointment where you want new medications/treatments for your pain (they forget our details).
(a) What do you think triggers the pain (or when does the pain occur)?
(b) Where do you feel the pain?
(c) Does the pain seem to travel around?
(d) Is the pain dull or sharp?
(e) How intense is the pain? (How intense is the pain, not what emotions does the pain trigger. Leave emotions out of it.)
(f) Is it steady, throbbing or stabbing:
(g) Is it constant or intermittent?
(h) Are there any associated symptoms? (Sluggish feeling, exhaustion, breathless, fever, etc.?)
(i) Does anything make the pain feel worse or better? (Perhaps food, weather, body position, darkness, quiet, fresh air, rest, massage, etc.?)
(j) What do you think stops the pain (or when does the pain stop)?
(k) At what point in time did you start having episodes of this pain?
(l) Have these episodes of pain been changing over time?
3) Be persistent that you have pain at each appointment where it is still a concern. As long as it is an unresolved issue, keep bringing it up at appointments, but leave emotions out of it.
4) Don't describe the pain as "pain from DM", because:
(a) different DM patients get different pains from different causes,
(b) it is medical "fact" that DM doesn't cause pain,
(c) he may think you're just after narcotics.
5) If he says: "DM does not cause significant pain", and you have significant pain, reply with something like: "Okay, so I have something else causing this pain. What else can cause this kind of pain?" (Both of you should consider other causes for the pain.)
6) Keep your doctors updated on how the pain is and whether the treatment is working.
7) If you want to suggest a treatment suggestion to your doctor, end the suggestion with some words to the effect that, "Of course I'm just a lay person and I'll go with what you think is best."
8) If your current team of doctors can't resolve your pain, and the pain is having a major impact, ask for a referral to a pain specialist.
* Sorry, new comfortable shoes with low heels.
Disclaimer: I'm a fellow dermatomyositis patient. I have no medical training. As with medical information on all websites, the information is general. You should follow your doctors' instructions because they know the specific details of you and your individual case.