Three decades of RA without a diagnosis
Hi. I'm 59 years old. I was diagnosed with RA FINALLY last year. I first showed arthritis in my spine when I was in my twenties. I had my knees replaced when I was in my forties. I had my first joint fusions in my foot when I was in my thirties. That was followed by many more joint fusions in the same foot. This was followed by severe arthritis, inflammation (chronic) swelling and continual severe pain which hasn't been alleviated by any RA meds I've been on. The latest is Humira, which helps my other joints, but not my foot which is hands down my worst problem. I've had fusions in my back, had a bone removed from my wrist to help with the pain, had both rotator cuffs repaired & clavicles cut down to remove the arthritic bone, both knees replaced plus about 15 more surgeries for various reasons - mostly due to the RA.
When the doc finally diagnosed me with RA, I felt like saying, "Well, DUHHHHHHHHHHHHHHHHHHHHHH!!!" You'd think someone would have gotten the clue somewhere along the line!! I also have fibromyalgia and chronic migraines due to chronic pain syndrome. I take Humira, prednisone, fioricet, suboxone, small doses of antidepressants to help with sleep; I use a therapy light in the winter to help with SAD which can induce severe depression in me. I exercise at least twice a week at my maximum ability in water aerobics. This is crucial to my pain control.
Everyone in the pool laughs at me (in a good-natured way) because I'm so much faster than all of them. They don't realize what it's like to have RA and not be able to move on land like I want to. If I can't exercise for more than a week, my pain level goes up over 60 fold! I love the water. Without it, my pain and mobility impairment would be severely curtailing my lifestyle! I'm disabled anyway (not officially though.) But going without exercise, I think I'd eventually end up in a wheelchair!
Like you, my family and friends have no clue about my RA. I can't even eat without pain in my jaw so severe it limits what I can eat and for how long I can continue to eat. My migraines interfere with my functioning practically every day. My family members think I should be able to produce a holiday dinner for 25 at the drop of a hat - no matter what! They denigrate my symptoms and treat me like a hypochondriac. They got mad when I was flaring so badly last Christmas that I couldn't have Christmas eve dinner at my house!
I have found a few friends who do understand what RA is like - but most of them are people with RA themselves! I've learned to lessen my expectations of support and love from people who don't have RA. It cuts down on the frustration and disappointment. And with lives like ours, who needs extra pain??!?
I have to say, if I could go back in time & not have RA I wouldn't choose that. My life was a literal living hell before the last year. My life has been totally transformed. I no longer suffer severe debilitating depression. I still have constant pain, but the joy I experience in life now I wouldn't trade for anything - even if it means living with RA and fibromyalgia and migraines!!! Good luck & God Bless you in your search for love and support and pain amelioration!!!
Do you struggle with insomnia?