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Rheumatoid Arthritis (RA) Community
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Avatar universal

Can you have RA developing as a teen, but be diagnosed until later in life?

I am 15 years old and used to be very active. I played volleyball for my high school and on a club team and played/worked out around 12 hours a week. In April of 2017, I started having terrible throbbing pain within my fingers and their joints. Jamming my fingers was a regular thing for me so I just assumed I jammed all my fingers or something. I realized it was a problem as it got worse in the sense that it hurt to get dressed in the morning and the pain was really distracting at school and all day. If felt worse at night but never once disturbed my sleeping. I would take many different OTC pain medicines like aleve and ibuprofen and tylenol, but eventually I grew tolerant to that and nothing but icing my hands until they were numb helped. I mentioned it to a few times to my father who took me to a sports med clinic and it was written off as Tendonitis. In June during the four day AAU Volleyball Nationals in Florida did I finally tell my mom. The pain was so bad that I would cry every time I played (I was the only setter on my club team so I always had to play whether I was injured or not). However their was no swelling and the people who wrapped my wrists and fingers everyday said they never felt anything, despite the pain being bilateral. After nationals ended, I stopped playing all together and went to a hand specialist. She first introduced the possibility of RA, which I thought I was too young to get. I had xrays that were near perfect, so I got just some celebrex for the pain. In early July I had an MRI that showed bad bruising on the muscles inside the palms of my hands. After twice a week of 7 weeks of occupational therapy, the pain started to be less constant. Skip backwards to July again and I begin to feel the same pain in both of my knees, just without any swelling. However both my hands and knees to did begin to become very red and warm at random times when the pain was bad. Skip forwards again to after I finish physical therapy in the middle of August. I started school again and the pain was still bad enough that I had to have one of those plans in place to prevent me from taking handwritten notes during class for certain classes. I also had to take breaks during my art classes which were very important to me because I am hoping to attend art school and study animation in the future which requires a lot of finger and hand work. In September, I finally got in with a pediatric rheumatologist. She said she definitely felt limitations in my movement and could tell that I was in a lot of pain, though I felt like it was getting better. She had my blood tested for all possible indications, but besides my hands being slightly red around the joins and my genetically misshapen and lumpy pinkies, everything didn't seem urgent. When I got the blood tests back 4 weeks later, I was in less pain and all my blood tests were normal so she wanted to rule out all rheumatic and autoimmune diseases, which I thought it was great. Unfortunately I had begun to feel some pain spreading symmetrically to both of my elbows, shoulders, and wrists. I could barely put any pressure on my wrists at all without wanting to yelp or cry. I had another MRI of my wrists in the middle of October which showed no internal swelling. After that, everyone was very confused because of my pain and its weird flare ups. I am currently in physical therapy for patella femoral syndrome in both of my knees which improves my pain and grinding when walking. However I still have random pain all throughout the different points in my body. Sometimes there is symmetry with the pain and sometimes it might just be one finger on just one hand. It might hurt because I move it the wrong and it gets stuck, pops really loud, and then there is a quick flood of throbbing and then sharp pain. Other times, I just be sitting in the car and some joint(s) will just feel warm and start to hurt a lot. I am currently on Indomethacin for my pain but it doesn't work as well as it used to. My pain has changed dramatically. It hurts most in the mornings and at night. I have morning stiffness for about 2 hours after I get up and I just feel exhausted all day and it is hard to pay attention in school sometimes. Most of the day it only hurts overall at 2/10 but sometimes it will just flare up and hurt a lot. My ped. rheumatologist is going to see me again in December. I have an appointment with a physiatrist in January and may go see a neurologist sometime after that. The pain is very manageable but it prevents me from doing a lot of things I love. I don't think it is psychosomatic and every single doctor I have seen agrees that it is real but I always find myself second guessing because no one can give me an answer. I thought maybe idiopathic neuropathy, but besides no swelling and physical signs, the pain is very similar to RA. I am wondering if I could maybe have something similar or actual RA as a teenager, but it is too early in its development for evidence such as RF to show up in blood tests or for any swelling to accumulate. I am sure it isn't from stress because the doctors I have seen (around 7) all think it is both mechanical and something inside they haven't figured out yet. I don't want it to be given up on because I have heard stories of other feeling the same way I do now, and then ending up being diagnosed with RA in their 30s. I don't want my pain to be continuous anymore and am really looking for answers that make sense. Please help!!!
4 Responses
1530171 tn?1448129593
Possibly Juvenile Seronegative Arthritis.
It's the one that perhaps makes the most sense.
RF is not necessarily present in JA and in seronegative types, blood tests are  negative.
Did you have a synovial fluid test?

Anyway,if this is the case indeed, there are not too many effective treatments conventional medicine can offer.

You may do a search for "The new Arthritis Cure" by Dr Bruce Fife, which gives anyone who reads the book a new perspective on Arthritic conditions and well researched effective treatment approaches. ( drug-free)
Fascinating!

Sorry I can't elaborate more on this right now, but if you have any questions please post again.

Best wishes,
Niko

Avatar universal
JRA or Juvenile Rheumatoid Arthritis can happen to very young children; my daughter was diagnosed when she was three years old. Some of your descriptions sound like JRA, some don't.  You seem to have a great deal of medical knowledge for someone your age, be very careful trying to use that knowledge. I can't speak for other parents whose children have JRA, but it was a nightmare for my daughter and myself. Just trying to get a diagnosis was difficult thing, JRA can mimic a lot of other illnesses. I cradled my screaming daughter a lot more nights can I care to remember. Her knees were bent and it took a year of intense physical therapy to try and get her knees straightened back out. She couldn't tolerate the medications and by six, she had become so toxic, she landed in the hospital and nearly died. Schoolwork was always hard for her, the teachers would have to run warm water over her hands to get them to begin to function. Strangely, JRA can go into a long term remission and show up again in adulthood. For my daughter the pain came back again but because she had to have a heart transplant at 22, the drugs she was given for that problem, helped get rid of the arthritis inflammation, so that turned into a plus. Take care    
2 Comments
Want to thank you for this excellent answer and stopping in to help our members.  
Thank you Sara.
Avatar universal
Have they checked you for Fibromyalgia? It hit my head while reading your description of symptoms, etc.
And have you tried if heatpacks on the painful areas can help too? I read you had tried the cold.
The same with magnesium, vitamin D and vitamin B's (full scale), as you are very active. Magnesium helps the muscles relax.
Ask if they can take a vitamin and mineral analysis/tests of you. Avoid vitamin B, supplements a week before as they can give false high values.
And try to avoid sugar for a week, to see if it can improve, as white/refined sugar triggers inflammations.

I hope they figure out what it is, and that it's something that will pass, or at least easy to handle! :)
Avatar universal
If testing for it (fibromyalgia), it's easy for the doc to test as there is certain point she/he can test on the body.  
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