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A childhood in Ace bandages

A Childhood in Ace Bandages

No one had a clue about my arthritis at the time, but in retrospect there were many RA precursors present in my childhood. When I was six years old my white blood cell count was so low that my pediatrician deemed it unsafe for me to be exposed to all the viruses and infections first graders bring with them to school. I was kept at home for three months until my weekly blood tests indicated that my white cell count was high enough to return to school. No one has ever linked this to my rheumatoid arthritis, yet given that RA is an autoimmune condition it has certainly left me wondering if that was the beginning of a healthy immune system derailing.

Starting around the time I was eight years old the joint pain started, and I was diagnosed with countless sprained wrists and ankles. I was perpetually in Ace bandages; my mom kept so many on hand that I was able to wrap up my life-size Barbie like a mummy one Halloween. I remember overhearing my fourth grade teacher say that she would be worried about me if I weren’t doing so well. Presumably she meant that if I weren’t such a happy kid and a good student she would suspect that I was either being abused or was exhibiting attention-seeking behavior. Looking back, some concern was warranted: not for my emotional well-being, but for my physical health. My parents always took me for regular medical visits, and took me to the emergency room a few times when a wrist or ankle was so painful they worried I might have broken it, so there was never an issue of neglect. Rather, I think this speaks to how little was understood about RA, even by medical professionals.

Once I was in middle school my knees were the biggest source of pain. My mother has always been a big proponent of chiropractic care, so when the achiness in my knees would ramp up she would take me to the chiropractor. While I hated the cracking and popping sounds my bones emitted in those visits, getting a donut from the bakery next door made it worth it. Interestingly, I found some benefit in addition to the sugar fixes, as my knees did seem to improve for a few days or even weeks after a chiropractic adjustment. However, the pain eventually became severe enough for my parents to take me to an orthopedic surgeon. He did not provide a diagnosis, but showed us the swelling and cartilage deterioration evident on my x-rays, and suggested that I give up soccer in favor of a lower impact sport.

In high school, I did indeed give up soccer; however, it wasn’t the pain that finally made me give up a sport I loved, but rather fatigue. I was struck with such intense fatigue my junior year that I missed several weeks of school as my mother shuffled me from doctor to doctor in search of a diagnosis. Mononucleosis, the usual suspect in teenage fatigue, was ruled out, and blood tests didn’t reveal the culprit. My mother’s search for medical help led us to an immunologist in Atlanta, seventy miles from our hometown, who diagnosed me with chronic fatigue syndrome, which was a rather new term at the time. It was somewhat comforting to have a name to link my symptoms to, but as there weren’t treatment options to go along with it, the diagnosis was not a game-changer. Looking back, I certainly wonder if the fatigue was actually caused by RA.

In college I continued to have joint pain, and my wrist was so bad that I spent about a year in a splint with a misdiagnosis of tendonitis. My orthopedist was baffled as to why my wrist didn’t seem to improve. It was not until I was 22 years old, a full 14 years after my early symptoms had set in, that I was diagnosed with rheumatoid arthritis. I am curious as to how medical care has changed in the past 30 years, and whether it was really a diagnosis of juvenile rheumatoid arthritis diagnosis that would have been most appropriate all those years ago.

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

  • rockcandi
    1 year ago

    Reading about the trouble getting dxd you all were talking about makes me feel “lucky” to have been dxd with JRA at 6 years old. It’s still considered Juvenile RA even though I’m now 36 bc it was onset as a child. But, after I went into “remission” w/in a year after dxd, my mom believed a miracle had happened and that I was completely healed. The doctor had told her that by the time I graduated HS Id be crossing the stage in a wheelchair and there I was a year later walking/running/playing w/o a walker, so I can understand how she wanted to believe the best case scenario for her independent, active, happy only daughter. A miracle had happened in that I didn’t have any more terrible flares until I was an adult. But bc I wasn’t getting any medical treatment the disease was progressing w/o the knowledge of the medical community. And bc my mom didn’t take care of that while I was young, it became a decades long battle for me to get rediagnosed (RA, Lupus, Fibromyalgia, Sjogrens). I don’t blame my mom, she was young, going through a lot, we moved constantly when my brother and I were growing up, & she paid my medical expenses when I was 31 and waiting for disability plus I lived with her for free the whole 10 months. Anyway, I’ve thought back often and realized how much the diseases actually were to blame for all the things that were happening as I suffered (mostly silently) and knew that I wasn’t “normal” even though I was told I was if I ever brought up symptoms. Not that I knew they were symptoms. It’s crazy to me how I felt so alone all that time and here so many kids were going through such similar experiences that were out of the norm for kids out age. Thank you all for sharing!

  • Tamara Haag moderator author
    1 year ago

    Hey Rockcandi,

    Thanks so much for sharing your childhood experience with RA, your diagnostic process, and the difficulty you’ve had with that same process in adulthood. RA sure never seems to strike the same way twice, with each individual having a slightly different experience. In sharing your story, someone else may read it and say, “Hey, that’s similar to what I went through” and feel less alone.

    Autoimmune conditions remain one of the most mysterious areas of medicine. A doctor told me once that scientists will have the human brain completely figured out before the immune system is completely figured out. When I think about the (lack of) medications available when I was first diagnosed 17 years ago, and compare that to what’s available now, it’s astounding. So when I look back to all the issues I had 25-32 years ago, I know that doctors much have understood so much less about the disease then they did when I was (eventually) diagnosed. I’m grateful to have this awful disease at a time when medical treatments are available (it breaks my heart to think about your joint deterioration that was happening while you and your mom didn’t realize it), but I definitely hope that a cure happens in my lifetime.

    Thanks again for sharing!

    Wishing you all the best,
    Tamara

  • Bnee
    3 years ago

    My granddaughter was diagnosed with RA a couple years ago. She has a bad immune system and takes immunoglobulin and RA meds through a port in her chest. She is soon to be 12 years old. She still has times of flares. I also have RA.

  • Tamara Haag moderator author
    3 years ago

    Thanks for sharing your granddaughter’s experience, and for being part of our online community. I wish you both all the best.

  • Piper
    3 years ago

    Although my mother took me to the doctor often up to when I was six years old and kept penicillian which she would inject when I had a “spell” (which the doctor thought was a kind of cronic infection because of my low white count,) she began telling me to “suck it up.” I was diagnosed in 7th grade with Juvenile RA in 7th grade because my gym teacher recognized what the swollen joints meant and a school nurse refused to let me back in school without a note from a rheumatologist! Mother never mentioned it to my brother or my sister and “developed” arthritis herself right after that. That was the beginning of many diagnoses I have received. I am one of those rare people with both RA and Lupus. I also have Neurofibromatosis, type I–which was found when the rheumatologist sent us to a neurologist. I wasn’t told this until much later in life when several tumors were biopsied and identified as NF tumors. When I asked my mother about it, she said she “didn’t believe the doctors.” The rheumatologist who diagnosed the Lupus said she thought I had RA in “early childhood” looking back on my records. Also, it is still referred to as Juvenile RA on my charts even though I am 71 and still have symptoms!!

  • Jillian S moderator
    3 years ago

    Piper,
    Thank you so much for having the courage to share your story with us. It is so helpful and reassuring to learn from one another and members who are willing to share their experiences make that possible. I am sorry to hear about your multiple diagnoses but I want you to know that you are not alone in this battle!
    Although Lupus is not considered a common comorbidity or complication associated with RA, the two conditions do share similarities in the disease processes that affect the body.
    I thought you might be interested in reading an article written by one of our moderators, Leslie, who also lives with both RA and Lupus: https://rheumatoidarthritis.net/living/every-october-cringe-im-grinch-breast-cancer-awareness-month/
    Here is another about Chris Cronick, a 38 year old spinning instructor who lives with RA, lupus among several other diseases: https://rheumatoidarthritis.net/living/doesnt-let-disease-stop-her/

    Lastly, here is a JRA diagnosis story written by another one of our fabulous moderators, Kelly: https://rheumatoidarthritis.net/living/diagnosis-story/

    I hope that you enjoy reading through these articles. We are so glad to have you in our community and hope to hear from you soon.

    Warmly,
    Jillian (Rheumatoidarthritis.net Team)

  • Nanci Burns
    4 years ago

    The Disability Determination Board, looking at all my medical records from birth to this year, figured out that I have had this rheumatoid disease since I was 2 years old. I’m 55.

  • Tamara Haag moderator author
    4 years ago

    Wow! That’s so interesting. Thanks for sharing!

  • Juliet (DJ) Johnson
    5 years ago

    I hear you. From about 10 years old on I had the same issues. Sprained ankles a turning of my feet inward. Pain in my knees if I didn’t sleep on a comfortable mattress. My hands would lock up sometimes but a hot towel unlocked them. Chairs in school actually hurt to sit in and I had to bring a cushion to sit on. The days it rained I was achy but my father believed it all to be weight related though my weight was not even an issue until high school. As I got older I hurt myself more and more often and prominent health issues came up. Fibroid tumors run in my family but mine were extreme! Their average for a tumor was a mere 3 lbs. Mine were 8, 6, and 5. I have had carpal tunnel surgery and jobs where I used my hands became something to avoid. I had seen over 10 docs by this point with no answers other than, your joints are showing unusual wear. As a kid the bicycle seat caused me pain for days as well. I would get sick out of the blue for no reason and be taken down by it. Sometimes to the hospital with pneumonia, respiratory infections, that had no obvious cause. Then I would be down for weeks. Then be fine for years with no sign of even a cold. Every time I had a child I would be sick and weak for months after. Exhausted and sometimes falling asleep at the dinner table. Then I would perk up and be fine again. Sprained wrists , broken fingers that broke too easily, broken toes that I didn’t hit hard enough to break but they did, and shin pain that on a cold day was too painful to walk with. I can’t believe it took over 20 years to diagnose this. I can’t believe that no one caught it. Now I am suffering the consequences of medical neglect. The signs were all there. How did they miss them for so long? Some of these doctors I saw for years at a stretch with no answers. I am glad I know now and it’s so obvious looking back what was wrong. So I am now an adult with a late diagnosis of early onset Rheumatoid Arthritis. I sit on my couch with 2 blankets folded under me or it hurts. I can walk ok some days but mostly I limp on both feet. I can’t work right now and my liver has suffered from the constant ibuprofen and Tylenol I took so often to help me keep going. I am glad you were diagnosed but want you to know you are not alone. Too many of us are lost to the system and I hope and pray that awareness comes sooner for people like us. My life could have been better if more doctors had merely said, “Don’t worry I will do all I can to figure this out for you.”

  • Tamara Haag moderator author
    5 years ago

    Thanks for sharing your experiences, Juliet. It’s so interesting to discover how similar so many of our community members’ experiences are. I wish you all the best.

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