Hi I am new here!
I have a question because I haven’t been to a rheumatologist in so, so long. I would love to hear what you think.
Firstly, I was diagnosed with PsA in my mid-thirties about 11 years ago. It was a horrible, ghastly time in my life. I had three young kids and my life was in turmoil. Then the pain. I could barely walk. I used a cane and my life was so limited. I was so exhausted and so many strange symptoms. I took NSAIDs and pulses of cortisones. My life revolved around my pain, my immobility and my medications. I felt like everything was falling apart. I became depressed and convinced I was suffering from something else. So many issues I see mentioned on this site, nobody was talking about (like tendon inflammation and dizziness, hearing loss etc) I felt like I had the wrong diagnosis or maybe I was faking it all and started a downward spiral of doctor shopping and sadly, also psychosomatic issues.
Eventually, with the loving support of my partner, I was able to distance myself from my illness obsession and rumination. Of course, my symptoms didn’t disappear, because truly, I do have PsA and it does affect my life. But with self-training and acceptance, I was able to refocus and start being as active as possible. I think in the past years I have been able to find a happy balance of respect of my limitations and healthy adventurousness. I try to not hold myself back from doing things I really want to do. Sometimes it causes a flare, sometimes I over-do it, sometimes I just naturally have a flare but I think I have become pretty good juggling it and being responsible.
Which leads me to my question. Should I indeed still be seeing a Rheumy? I haven’t been in years. I have always been of the “leave well enough alone” camp, but I have been in a bit of a nasty flare since before Christmas and during this time I have come to realise I am seeing some (albeit very small) changes in my hands. My thumb is starting to bend at a weird angle (it’s very minimal but still a little scary to think about) Noticing this and a few other things has opened me up to thinking maybe I have been letting the disease progress so much and I may be irrevocably damaging my joints. My biggest inflammation areas are my hips and lower back, but my daily stuff is really hands and wrists feet kinda stuff as well as the obligatory always stiff in my hips stuff. What kind of damage are these joints suffering?
My dermatologist has been great. He wants me to see a rheumy because I had chronic hives and some other unsavoury stuff (think random swelling body parts and joint pain) but I feel like it was a fluke. I haven’t had it again and it’s been two years. He understands I am afraid to “go back” to that place I was years ago and isn’t pushing.
I just last year I started with MSM (with which I have really good results) but other than that I don’t take any other tablets. (I do eat a vegetarian diet and I have been considering phasing out to a vegan diet / anti-inflammatory diet. Still researching though) During this current flare, I was often at the point of feeling like I wanted to have some meds, but I couldn’t push through my very strong desire to avoid the rheumatologist. I just feel like I might risk falling back into the rumination of the past and I really don’t want to focus so much on my illness.
But should I!?!? Advice anyone?
Also, sorry for the novel, thanks to anyone who stuck it out and read through to the end, hahaha 🙂