Which advice would you give to someone who has just been diagnosed with Palindromic Rheumatism?

wow this is a tough one for me,because i had absolutly no advice,the only person that believed me for about 16months was my doctor,i went through a very difficult time since closing my business in 2014. i have learnt the hard way which was not helpful both mentally and physically. So if i can help anyone going through the same i would be happy. The advice i wish id had the most,would have been a rough time frame of tests and diagnosis,as i had no idea it was going to take approx 3yrs. Which hopefully wont be the case for everyone,but be patient,be pushy but patient.dont take all the test results as gold. Even specialists can be wrong! If your not happy with results go back to your doctor and tell them your concerns and ask them to refer you to someone else for a second opinion.

There are 2 things I really wish I would have been told early on.

(1) Get familiar with a pain scale or create your own. Make sure the people in your life - partner, friends, anyone you interact with daily - is familiar with your scale and understands what the numbers mean in terms of your ability to do activities. Early on, when I was struggling to figure out my condition and how to talk about what I was dealing with, there were lots of miscommunications about what I could and couldn't do and how I was feeling. Life is much easier when those around you understand your limitations during flares and can respect and support you.

(2) Find hobbies you can do from bed or the couch, both with and without hand mobility. In the early days before medications kicked in, I was stuck home a lot and couldn't really walk around or grab things easily. It was really hard being stuck in one place until I found ways to entertain myself and engage with the world from bed. Whether it's books, video games, art, or something else you'll definitely want more to do than watch TV and it'll help your mental health immensely.