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My RA Story – I want to LIVE with RA not SUFFER from it!

Hi, my name is Teresa and I am 45 years old. Three years ago I decided to run a marathon for my daughter who survived leukemia. I was always an avid walker, my friends call me the “walking Nazi” so doing a marathon was really no big deal to me!

I started training and began to notice back pain all the time. The back pain then became shoulder, elbow and hand pain, but I continued to believe it was from the training. About a year after training and completing my marathon I was still walking, doing Pilates, yoga and other activities but the pain was still present. I finally broke down and went to the doctor – only because I noticed “knots” on my right fingers, who first diagnosed me with low Vitamin D, ran some more blood work and in February of 2013, I was diagnosed with low vitamin D, underactive thyroid and SURPRISE! Rheumatoid arthritis.

I started Mobic, Vitamin D and Synthroid and began my own research. I then found gluten free diet, so began eating glueten free. So far, I have felt well for one month out of 2013. I live in constant neck, back, shoulder, elbow and hand pain. All but four of my fingers are now “knot” free, but the pain is a 10/10 daily. There is no escaping it. I went to the doctor today, for more blood work, and hopefully a change in medication. I am also attending my sister’s “gentle” yoga class which gives me at least, 20 minutes of being pain free.

I have no clue how to get comfortable in bed, no way to sit on my couch or in my chair at home because it doesn’t give me the neck and back support I want and need. I am still walking, yet wake up stiff so much in the middle of the night I am afraid I will fall. Brushing my teeth in the morning is like stabbing my hands – I feel as if I can barely curl my hand around that brush! I feel pretty good every morning and evening AFTER I have had my hot, hot shower! I work with my hands at both my jobs, so I am very fearful of losing the dexterity I have now.

Living with RA and Suffering with RA to me are completely different…I would like to LIVE with it peacefully, not suffer with it as I feel I am now. I feel depressed and alone because I have an 18 year old daughter who doesn’t understand and the only other people in my family who had RA are deceased. I try to look for the positive articles about RA so I can find the HOPE for the “Living with this” portion of how I feel. This site instills that hope.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Mariah Z. Leach moderator
    6 years ago

    Hi Teresa – Thank you so much for taking the time to share your story – it sounds like you have been through a lot! RA is a very individual disease, which means that treatments that work for one person may not necessarily work for another (for example, I was gluten-free for six months but it made no impact on my RA symptoms). That’s why it’s so important for each of us to work with a good rheumatologist. Your rheumatologist can make sure that you get the treatment you need to prevent long term joint damage (which will hopefully help avoid the need for surgery in the future). So I really hope that you are working with a rheumatologist – and if you aren’t yet ask your doctor for a referral or find a listing with your local chapter of the Arthritis Foundation. And hang in there! So glad you found our community – we are here for you too!

  • Amanda Kohl
    6 years ago

    Hi Theresa. I can identify with your story. I have had sporadic symptoms of RA for many years, but was diagnosed 2 years ago. After a total knee replacement my symptoms were tolerable. Within the past 3-4 months I’ve had a flare-up that has affected my hands, predominantly more so on the right. My Rheumatologist changed my anti-inflammatory and started Methotrexate and a taper of prednisone. It is still painful, but after 3 weeks I am beginning to see some relief. I would highly suggest that you discuss your ongoing symptoms with a Rheumatologist. My PCP is part of my team and she keeps updated with Rheumatologist, but she knew when I needed expertise beyond her scope of knowledge in dealing with RA. My thoughts and prayers are with you as you fight your battle. Please know you are not alone.

  • Gay
    6 years ago

    Hi Theresa. I agree with Amanda. You must go and see your rheumatologist. Steroids will damp down the symptoms very quickly and a low dose can keep them at bay. Like Amanda, I am on Methotrexate and a low dose of Prednisolone which I am hoping to taper off as the Methotrexate has increased. There are good drugs out there to help you, and you don’t need to feel this bad.

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