Hello all :)
I was wondering if there are any other youth out there who've been diagnosed--I'm 18 and was finally diagnosed with RA a month ago after experiencing symptoms for four years.
As far as treatment goes, I suppose the disease progress has been very gradual...I just started plaquenil and fish oil, and I try to do yoga whenever possible.
Just a few basic questions...Anyone else in my age group out there, or anyone else diagnosed in their teens, or has anyone else gone through college with RA?
And what treatments work for you? Personally, any kind of excercise works for the day but as soon as I go to bed it all rewinds and everything hurts all over again in the morning :( I'm looking into accupuncture, has anyone had success with that...?
I'm just looking for people to talk to (most college kids have little experience with chronic pain, lol) and if you want to know more about me just ask. :)
Hello! Yeah, where are you from? Are you the only one in your family with RA?
Hello...I am not anywhere close to 18 as I almost have an 18y/o person. There are a lot of young people here to help you, and I think at least one is in College. Good luck and you can ask us oldies questions too.
I was diagnosed right when I started college. I was put on Methotrexate
Welcome little gypsy, we do have a few young people here with ra but alas I'm not one of them. Little Mermaid, Katie, and Joonie are young and will be around soon. I'm sure you will love them, they're all sweeties
I'm 19 (a day away from 20) and was diagnosed with RA just after my 19th birthday and in my first 2 weeks at university. My doctors think I had it for about a year prior to diagnosis.
I now take Plaquenil and Arava (leflunomide) and they seem to be doing the trick as long as I don't over do anything. I have been on both Methotrexate and Sulfasalazine but neither did anything for me, and I developed an allergy to the MTX. I do take pain-killers and anti-inflammatories - my weapons of choice pain-killerwise are codeine and paracetamol together and my anti-inflam. is dicolfenac. As the DMARD's are working I have been able to drop the anti-inflam. from 3 times daily to taking it when needed but my levels of pain have remained the pretty much the same.
I go to pilates once a week, finding it really relaxing and it helps to stretch out all the muscles that get tense through pain etc. When I'm at uni I try to swim once a week, but I will admit to skipping in Winter when I can't face the thought of walking back up several flights of stairs and a huge hill in the cold.
My first year at uni was tough. I had to get my head round this whole RA business and physically I was very ill. I had to get between 14-16 hours sleep a night to be able to function the next day, so my social life wasn't great! I couldn't do a lot of things and my doctors wanted me to defer the year but I was stubborn and won through in the end. Even though it was tough RAwise, I love uni and made some great friends. The people who need to know about my RA do: some friends, my flatmates, my tutors, the societies I joined. I don't keep it a secret but I don't use it as an excuse either. Finding that balance is quite difficult as others don't understand at all what you're going through.
I'm from the UK and here all universities have a Disability service to help get extra funding for study aids and to give advice to you about how uni can make life easier. I have just got Disabled Students Allowence, which is buying a voice recorder, voice recognition software for my laptop, a new desk chair and a book holder. It is also providing me with a book allowence so I can buy books I need online if I can't walk to the library and is giving me special exam conditions. I'm sure your college will have something similar. It's worth getting in touch. I was stubborn and didn't until the end of the year, unwilling to admit I needed help, but I know this year is going to be much easier with all this in place.
Sorry, I appear to have waffled a bit! Hope it helps. Ask any questions you like!
HI Gypsy, what a great name, welcome to the board, hope you find what you need, hugs Janie.Welcome to AI Gypsy!!! I was diagnosed when i was 20 after I had my daughter so I dont know what its like having RA and going through college. Well I'm doing online courses now does that count? You will LOVE everyone on here. We have lots of fun! Good luck w/ the plaqunil...Feel free to ask any question that may pop up...At least 1 person on here has gone through it, but in most cases we all chime in w/ some advice. Can you give us some more background? Where are you going to school, major, that sorrta stuff.
~Shannon~
Welcome to the boards! I have had RA for five years. I am 20 and was in college, but now I'm taking a semester off to do art projects and work... oh, and figure out what I want to study When I was in college last year, I didn't tell many people I even had RA, just my closest friends and my room mate of course. I stored my Enbrel in my refrigerator in my room so naturally my room mate wanted to know what I was injecting into myself lol. UGH just typed a whole long thing and it got deleted.Little Mermaid, I was just going to tell our new friend here to find you. But you found her first. I'm so happy you college "kids" found each other. And you will soon be adding Katie to that group because she'll be in school before long too.
Gypsy....welcome. ALways glad to "see" a new "face". Well, except for that means you have RA which of course doesn't make anyone happy. But since you have it, I'm really glad your here.
Linda
Aw, thanks guys. <3
It's pretty awesome to hear that other people have gone through (are going through) college and stuff with RA :) The only people I've met that "get it" are my adult friends...
To answer some questions...
I'm going to state school in the central valley, California, I signed up as a music major, but dropped it for various reasons (SJ has a rigorous music program, and I wanted a life to go with my school lol) I play the flute, wanted to be a music major/join the army as a musician since forever... And now that I've been diagnosed I can admit that maybe the flute isn't the best thing for the finger joints... So now my major is up in the air - English, Humanities, Sociology? There's a minor in Community Change that I'll probably take.
Disease progression for me has been relatively slow... I take OTC pain meds (Naproxen is love) when I need them (which my doctor says I don't use enough, huh? Something about high pain tolerance), I have some swollen finger joints and water-on-the-knee, and I have yet to hear back about how much joint damage has been done...
My aunt (who has kids getting their masters, for an idea of her age) was just diagnosed a few months ago with RA and is on methotrexkdfjsomething, I think my grandparents had it, so yeah, it runs in the family..
Ok, question time again :)
Is the only difference between RA and JRA the age of diagnosis...?
Has anyone else had a problem with accumulation of lymph fluid? (Doesn't that just sound wonderful, lol) I've had problems with my shoulder--it's just the right one, which makes me think it isn't RA...My friend is a CMT (certified massage therapist) and he mentioned something about lymph fluid accumulating where there's scar tissue in the muscle.
Bone erosion! What the hell! My elbows don't straighten and my pediatrician gave me some b.s. answer about how some women just can't straighten their arms! So there are 30 degrees both ways in which my arms don't bend in and out all the way...push ups are no fun, lol. Anyone else have this problem? I have yet to see it any of my RA reading...
I've also been reading up on alternative medicine--supplements, mostly. Anyone find anything that works? According to one website there were like, 14 supplements to take in addition to regular DMARDS n' such.
Okay, one more--Has anyone read anything about the effects of premature birth on OA/RA...? I was born 12 weeks early and there were no side effects apart from asthma when I was younger, but I was in an incubator (a heated plastic box with needles stuck into everywhere you can imagine...basically did EVERYTHING through tubes for the first three months of my life, lol)
Anyhoo, it's good to hear from everyone--I didn't even know there was such a thing as remission! That's rad, congrats on that Katie :) And yes Shannon on-line classes totally count.
Thanks for taking in the newb, ya'll. -Theresa (you can call me gypsy if you'd like, though
ps: I'm adding people to my aim buddylist... my sn is c00lm0o (how dorky, I made got the account in fifth grade
Hey Theresa,
H
anyway!!. It is such fun having new people join this forum (sorry you have the dise
I have a granddaughter (Kat's her name) and she's 16. and grandson's 28 and almost 30! Wow, time flies for us grandparents. A son, daughter in law and a very nice husband. We live in california
I've had RA 15, years and took only a small amount of plaquinel and then methotrexate until just 7 months ago. I played tennis on a ladies team, hiked, played golf and walked the beach.....no problems. Now, I've had a little set back, but going to be okay again soon.
I'd love to chat with you anytime and I love the Private Messenger posts. So, hope to hear from you either way.
Lyndafor jra to be considered jra you ussually have to be dx by 16,
dunno about the elbows-mine hyperextend.....
just got back from my singing class...never knew standing still for 1.5 hours could be so difficult and painfull!
feel free to private messege/i can give you my aim I don't call mine JRA anymore. Sure, I was dxed at 18months, but I'm an adult now so it's just RA! Yes, remission is TOTALLY possible, this will be I think my 3rd or 4th remission in my life. I'm so excited for it!
I don't think you should stop playing the flute. Exercise of the joints is GOOD, so play away! Bone erosion, yeah it happens. This is what my doc told me (I think, don't quote me here I have a crap memory) Something about how when your body attacks your cart. it can, in essence, "eat" it away. Then you get bone on bone, and that's no good. They were battling feverishly to stop that from happening in my left wrist, but we failed sort of. Two of my wrist bones (the little ones) fused together when I was 4. But we saved the rest of them!!!
Your grandmother is on Methotrexate. Or, MTX as we call it (MUCH easier to type and remember)
Anywhos! My AIM is AliceLiddell83 if you want to add me. I'm an AIM junkie and I'm online CONSTANTLY.
Yea i agree keep playing the flute!!! it will keep those fingers moving. I did a lot of gymnastics when i was younger before and after dx we think that really helped me stay mobile and looser. I dont do gym anymore, but I still dance when i can :)
what sort of dorm are you living in? do you have roommates? Im in a suite with 8 other people and in a double.... im a bio major and gonna die this year doing orgo and cell bio at the same time, thats like 10 hours of lab a week! spent all day today inthe ibrary
I was 20 when DX my junior year in college. I really have had arthritis my whole life. I'm 53 now. WOW that is 33 years.
Do all the things you can do! And for heavens sake don't do the stuff that makes things worse! I didn't sleep enough while I was in school.
Hello again,hey there! I found out about my RA when i was 14, and I'm now almost 25 (on Sunday actually!). I did the whole living with RA during college. I actually moved to Phoenix for 4 years for college, so the dry heat helped me a lot with that. I was on a few different meds but plaquenil seems to be the one that works best for me. The heat in California might help you too although I'm not sure the humidity from the ocean will help. I guess depending on where you're at in Cali.
I also had the stiffness in my elbows. It was mostly during the first few years but I haven't had it in a long while. That was actually what made go see the doc in the first place and led to my diagnosis. I found that if I slowly and carefully tried "stretching" my elbows that they'd get a little better... you might try that if its not too painful.
I've mostly just learned to take life a little easier and to understand and accept the fact that I WILL wake up with a bit of soreness. As long as you have a gradual progress of RA and a good doc in Cali, then you should be alright.
My personal opinion on the flute thing... I would keep going on it but maybe do it as a hobby instead of a major... I agree that exercise is good but if that's your major, you may be doing a TON of work on your hands which will lead to swollen and stiff fingers the next day (my personal experience). Hopefully it doesn't change too much of your life and good luck!
Kelsaysmom- Do you know if the Humira actually helped with bone reconstruction or something? What is, exactly? I don't recall even being offered that by my rhuemy...
And yes, I'm in a suite with 7 other girls... I get along really well with one, we're both funky-artists types, and the rest are the party-type, which is...unfortunate, especially when your roommate gets carried in at 3 in the morning once in a while. Right now I'm sleeping from 12-7, at home I had to get up at 5 for work, that was *hell*, sleeping late really helps my joints. I should probably sleep more, now that I think of it, lol.
And yes, I'm looking into the disabilities resource center, I'm also eligible for ASPIRE b/c I'm a first generation college student and eligible for certain grants from the state. I have an appt tomorrow, I'll let you know how that goes :)
Dry heat is AWESOME. I live in the bay area, born and raised here... I adore california, seriously can't imagine living anywhere else. I went with my Dad on his honeymoon ("familymoon" lol) to Cancun and it was even better there, really warm :) On the other hand, I was in England for a week...even in the summer it's all rainy and cold, not as good =/ And I'd like to do my semester abroad in Zimbabwe right now..So I'm looking forward to more of that...
And yes I will be continuing the flute as much as time and lack of practice room allows...
Hm, so anyone have any alt medicine recommendations?
Hah, a friend said to me... "An old body for an old soul", how apt. :)
xs and os ! Theresa
Wow, you have a lot going on. Keep us in the loop, we can lend a ear if needed.