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!!!

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Comments

View Comments (5)
  • mxvkan
    4 years ago

    Thank you Sally, I just found this RA site & was wondering why so many migraines recently. I am an RN; was sick for years & had a compassionate physician that said I just needed “rest” ~ I was fortunate to see a fellow physician that saw all of my chronic infections (sinusitis, pneumonia, pain everywhere) and after many blood tests, was diagnosed w/ RA/Fibromyalgia & severe osteoporosis). Just agree with you, very few people “understand” these conditions unless they have these autoimmune diseases.
    I really thank you for sharing your story & that you are so positive! Anna

  • Maria luisa tubbs
    4 years ago

    Hola sally!! soy Mexicana y no hablo ingles y estoy feliz de poder leer sus historia , mi hijo cambio mi computadora automaticamente para traduccion , asi puedo sentirme apoyada en ustedes sobre AR, yo la tengo desde hace 20 años, y apasionada en jugar golf, a mi me la diagnosticaron despues de un año , se me han inchado mis muñecas pero gamas deje que me las operen , y despues de dos años regresaron a su lugar, y luego una leccion en mi rodilla muy severa ,pero tampoco permiti que se operara , siempre hice rehabilitacion y lograba regresarlas a la normalidad ,no quedan perfectas, lo que hay que tener es pasiencia con AR, yo le digo mi hermanita y la cuido como tal, nunca he dejado el Remicade, y nunca he tomado cortisona, mi dr, esta en mexico , yo me siento como tu cuando tengo torneos de golf, tengo un handicap de 13 y me siento muy feliz cuando gano un trofeo , por que es con mucho dolor y felicidad de poderlo hacer , no se cuento tiempo dios me lo permita …. pero me cuido para poderlo hacer por mucho tiempo ! estoy feliz por encontrar este grupo

  • Sally Gecks author
    5 years ago

    Thanks so much for your feedback and support Andrew and Mariah!!

  • Andrew Lumpe, PhD moderator
    5 years ago

    Sally, I could relate to your story. Unfortunately, it often takes a long time for people to get diagnosed. Thanks for sharing.

  • Mariah Z. Leach moderator
    5 years ago

    Hi Sally – Thank you so much for taking the time to share your story. I am so sorry to hear that it took so long to get the proper diagnosis! That must have been extremely frustrating for you. I think we would all choose to go back in time and not have RA if we could! But since we do I am really glad that you have found our community – if you need to talk to people who understand what you are going through this is one of the best places there is! Hang in there and remember that we are here to support you!

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