Hi all! I'm Kitty from Gig Harbor, Washington (USA) and this is my first post.
I'm 52 (and of Norwegian decent) and was diagnosed with PMR on June 25, 2015. I have been on 15 mg Prednisone for 3 weeks. My GP consulted with a pain management specialist who actually made the diagnosis. But then my GP left on vacation and I've been riding solo in this for a few weeks. I did call and update her PA as directed.
I responded quickly to the Prednisone and can now get out of bed in the morning. The pain is 75% better. I had a severe paralysis in my hips, shoulders and arms in the AM and could hardly bend my arms or roll over. The achiness and fatigue is still overwhelming. I haven't worked in two months and still don't feel strong enough to do much but lay in bed. The summer heat hasn't helped.
My GP has been on vacation in Italy since she called me with the diagnosis. I've had great anxiety waiting to see her again (on July 23). We didn't get the chance to discuss GCA before she left and I fear that I may have that too. I've had severe headaches for a couple of years (which we thought may be due to menopause). My scalp has been very tender, my vision is fuzzy and I have ringing in my ears. I've also developed an oral thrush infection from the Prednisone. I will let her know all of this when I see her in four days. Meanwhile, I continue the Prednisone and take Percocet as needed for pain.
At 52, I'm very concerned about the impact this will have on my career. I'm a marketing communications consultant in the healthcare industry. It sounds like this could take a while to resolve. Should I be thinking about Social Security Disability or early retirement now? My husband is 12 years older and retired. We're secure financially. But I'd prefer to continue working if I can.
Ironically, I believe this is the same condition my mother suffered with most of her life. She was diagnosed with Chronic Fatique Syndrome and Fibromylagia in her 50's. She passed away a year ago at age 79 after a series of small strokes, dementia and ultimately aspiration pneumonia. I cared for her most of my adult life with support of other caregivers and later, hospice. I left full-time employment 10 years ago to help care for her and my husband (who survived Stage IV throat cancer).
I was really struck by the opening line of Kate Gilberts's book on PMR/GCA when she first became aware of her condition and immediately related it to what her mom had. When my doctor said I have PMR, the image of my mother crying out to me with fear that I would get it too, is what came to my mind. In retrospect, I believe PMR/GCA is actually what she may have had. She also had a stroke in her 40's but recovered. Her brother had a brain aneurism, and more recently a stroke at age 75. He's recovering well. This is the Norwegian side of my family. The other side is Irish 🍀.
Sorry for the life story! I'm feeling a bit alone in this. Appreciate your thoughts about work!
Many thanks for this great chat room! Warm regards, Kitty