Hi everyone, my name is Kelly.
First, I want to say how many times I have read everyone's posts and found such solace in knowing I am not alone. I am so very grateful for all of your input on this board.
I live in the USA, am 53, have been a highly active - working full-time for 30 years, raised two lovely daughters, etc., etc. One year ago, I was slammed with a terrible flu and ungodly headache with vice-like pressure. I could barely chew from jaw pain. I had pain down my arms. My vision was weird. No one knew what was going on. On the journey (many doctors and different specialties) they found 2 brain anneurisms and I had brain surgery last July. Still the pain persisted. I fell into the "migraine" hole for a few months and nearly took my life in December. I felt like a hospice patient. Everyone said "there is nothing more we can do for you." I would sometimes have my Dad take me to the ER and I would beg for Prednisone. Other than that, I had absolutely no pain medication that worked. I was in complete despair.
In January of this year, I learned of PMR and GCA. Because I had been on and off prednisone, no inflammation - no test at all - showed. As a result, no Dr. was comfortable putting me on prednisone.
I met with a rhuematologist and he said I was way too young to have GCA and I should work on any emotional issues and get a lot more vigorous exercise. I crawled back to my car.
Finally, another (I had seen many) neurologist was recommended and he diagnosed GCA. I have been on 40 mg. prednisone for 1 month; now at 37.5 for another 3 weeks.
My questions for the wise group here:
- Everyone seems to feel so much better than I do on the Board. My pain is down from a 9 out of 10 to a 5, but a 5 pain is very difficult. I take a few Percocet through the day as well just to get to a 5 pain level.
- On top of that, I feel so tired - emotionally and physically. I cannot make "plans" because I have no idea how I will feel. Every day is a struggle.
- Lastly, the prednisone side effects are tough. I have had thrush, fat redistribution, my face is puffy, my muscles are very weak. I am both restless and have no physical stamina.
Should I feel better? People here are working and caring for people and saying "their lives are back." I am definitely not laying 24 hours in my bed in pain, so that is good, but I wonder if maybe I don't have GCA and should be doing something else.
Thank you for reading this very long email.