rasnack, I feel so bad, that you have to go through this at such a young age. I developed RA when I was in my late 50s, my children were grown, out of the house, done with college. To get hit with something like this must be hard.

Have you asked your Dr to try different medications? Does your school offer activities that are geared for those that do not / can not move around? Theater, art, speech, debate, chess, etc.

Your age if tough enough without having to deal with this. I am glad you found our area.

@2leftfeet

I have contacted my doctor about medications, but I think because I am so young and not fully grown that too many/different medications may alter in some way? I don't know exactly, but for now I have to use basics like Tylenol and things like that. I will probably be on more medications when I am 18+.

As for school activities, I am in the school band and a R&B band, but even those affect it terribly. I play the flute which strains my fingers, and dance in R&B band, which hurts my knees. Most school activity funds are given to sports, so there aren't much things I can do. I would love to do so many different things, but it seems like I am stuck in my own little bubble? I am sometimes excluded from certain activities which really helps, but I feel like its, you know, exclusion, instead of inclusion that could fit with me needs.

But I am in a youth group on my free time, and they do whatever they can to fit with my needs, which is very encouraging! What do you do to relieve pain? I tried moving them but I feel like it makes it worse.

I appreciate your kindness, 2leftfeet. No need to feel bad at all, I am just a teenager figuring out themselves! But I have a few blocks that make it a bit more difficult.

i hope all the teens answer on here for you to get a sense of the age diversity on this group and so that you can, additionally, feel supported from the youth on here your age. we also have a pretty good size of early 20 somethings in college.

welcome, we are glad you are here

has a parent gone to any appointments with you and are you on dmards?

depot

@depotblue

I was on dmards, but I was getting very severe rashes. It was a side effect of dmards, but they were very itchy and painful, so I stopped taking it. I have been considering taking them again though, I don't want to be on crutches by my 30s, or worse, wheelchair bound.

My Grandfather comes with me to the majority of my doctor appointments, but it doesn't really make a difference if he is in the same room as me or not. He is there for emotional support, I guess.

gee that sucks, you are allergic to methotrexate, sulfasazaline, plaquenil and leftunomide, all four? If so that does indeed wipe out the dmard classification. is your Rheumie handle mostly Juvenile arthritis as a specialty? are you by any chance at a pediatric teaching hospital or a local doctor?

rasnack,
I'm sorry you are going through so much at such a young age. My RA (I am still in the process of confirming for sure will have the last of the lab results tomorrow) started when I was 5yo. I'm 47 now, so I've dealt with it a long time, but in a much milder form then you have. I actually believe I was in remission for probably 5-10 yrs starting at age 27. At age 5 when it started my mom took me to the Dr. but back in 1972 the classic response for my symptoms was that they were "growing pains". At the time it was strictly in my feet and knees. By the time I was 12 it had moved into my hands and elbows. My mom took me back then. They told her then in 1979 that it was "muscle spasms". No bloodwork, no further checks. At that point my mom kind of gave up, cause with pain medicine, heating pads and massage it was manageable. I will also mention that I could never roller skate due to the fact that my ankle joints were so weak every time I tried I would sprain them. In fact by the time I was in college I could just walk off a curb a certain way and the ankles would give out and I would go down. I also had a full blown flare in my 20's during college that was triggered by the flu. The Drs. tried to say it was a "Rare side effect of the flu that people get sometimes". The disease did keep me from doing certain activities but for the most part I was still able to do what most of the kids my age did. Like I said I believe mine is/was a milder form of RA, thankfully. The fatigue has steadily gotten worse over the last 5 years, which was something I did not have as a kid only pain and weak joints. It must be terrible for you having to deal with the pain and fatigue both at 15. I feel for you missing out on all the regular teen activities. If you need to talk feel free to message me.

@depotblue

I don't think it is an allergy, more or less just the side effects? I am still pretty young, so maybe it is just that it may not be best for a teenager undergoing puberty? The majority of it is Juvenile arthritis, but arthritis is a thing that goes through the woman in my family, so I will probably develop something more serious as I age. I was in hospitals for the majority of my RA time, but it was mostly for assistance and semi-rehab? I mostly just go to my private doctor now.

@jslittlegirlie

Thank you for sharing your story, jslittlegirlie. I found it very influential and took it to heart. It is less of missing out on regular teen activities, more of it being that I am doing more of the minor ones. Still, I try my best to participate however I can. Again, thank you for your amazing story, I'll be sure to remember it whenever I am having a hard time.

Hi rasnack!

I developed arthritis when I was 16 years old. I am currently 23 so arthritis also hit me right in the prime of my teenage years so I know exactly how you feel. I actually went about 4 months in crippling pain before I was taken to a hospital and finally diagnosed. I have always been very active and participated in every sport I could so when I started complaining about my feet/hands/knees/everything hurting, my family just brushed it off thinking it was pain from not regularly working out since I was in the off season of track and field.

I, eventually, was rushed to a children's hospital when I woke up one morning with both my knees so swollen that I could not straighten them enough to walk. For about a year or two after being diagnosed, I had a really hard time with my arthritis. I lost a ton of weight, I was weak, always tired and my social life suffered. I understand not being able to do what everyone else does and it was so painful to watch all my friends be fun, outgoing teenagers and I was just trying to figure out how to walk down the steps normally again. I left school on many occassions from side effects of medicines or just from being in pain. Other kids looked at me funny for my elbows or knees being swollen, it was just miserable. I actually never told anybody I had arthritis until I was about 20 because I was so embarrassed of it.

My advice is to find yourself some GOOD friends who can try to understand your situation. Nobody can understand it unless they are living it and if you find people who are willing to adjust their lifestyles a little more to yours, it makes having arthritis as a teen a bit better. Also, I'm not sure how much activity you are able to do but I always try to work out every single day; even if its just going for a walk. My body has become so used to having some physical activity each day that it has helped my pain and swelling and allows me to be more active.

Getting back to your normal self doesn't happen overnight, sadly. It took me almost 2 years as a teen to get into remission. Just stay positive and work with your doctors to find the best remedies. I currently take Actemra and it is said to be one of the most gentle injections on the market. There are many options out there and more coming in the future!

Stacey :)