15, with polyarticular arthritis... my experience

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15, with polyarticular arthritis... my...

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Rachael Gustafson

Posted Tuesday, July 28, 2009 6:24 PM

Group: Forum Members
Last Login: Tuesday, August 11, 2009 7:22 PM
Posts: 5, Visits: 4

Hi, thought id introduce myself as im new to this board. Im Rachael, 15, from england, and was diagnosed with Juvenile Idiopathic arthritis, with is polyarticular in June of this year. Thought I would post here to parents as the teen board is really inactive and hearing my experience may help with ur child Smile

For about 2 years, I had a really wierd feeling off pressure building in my skull and then a release which felt like warm liquid.. yeah wierd, then about last year my neck went so stiff and my movement was really bad, I went to the doctor, and he sent me for an xray, and said there was nothing wrong with my bones or joints, and said I have injured a muscle.. and too take painkillers :| For the next few months, I found it extremely hard to get out of bed in the morning, and had very disturbed sleeps due to my neck. I stopped P.E in school, was exhausted all the time, and stopped my swimming and dancing. In about May of this year, my left knee started swelling like crazy, and everyone in school was amazed haha.. although I was in so much pain, even putting my socks on was a big task, I went my GP once again and he send me for an MRI and CT scan of my neck and give me some pain killers for my knee which was like a balloon.. he didnt have a clue!! After coming home from my scans that day I was fine.. but exhausted as usual but in the night it started. I couldnt get up the stairs to the toilet, and sobbed like crazy, when i managed to stand off the couch with my mums help I would lose my balance like the scarecrow off the wizard of oz!! We went into casualty, and waited for 4 hours till getting seen too, then 4 hours to be admitted. The next few days in hospital I was given an intravenous drip to rapidly get the inflamation down, I was given 6 doses over two weeks and diagnosed with arthritis in my neck, jaw, hips, knees, ankles, and wrists. Since then I have been on methotrexate, an enormous list of painkillers for the bad days, folic acids after my attack of mouth ulcers as a side effect, and have been diagnosed with anaemia following my billion blood tests.. ive yet to be given any injections directly into joints, whilst my consultant waits to see how I react to my MTX.
Even when I cant eat because my jaw wont open wide enough,
I cant dance because of sore knees
I'm feeling down
I still feel good that I'm keeping it under control.. and im wishing for a remission and to be off the drugs within 5 years.. optimism!!
A really big intro.. but hopefully I can help you mums and dads who are really worried about your younger kids.. ask me anything Smile

Rachael xx p.s if you have read up to here well done i really blab on! x
p.p.s legal drinking age in uk - 18 .. methotrexate will totally limit me! Pinch

Post #4220741

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Juile

Posted Wednesday, July 29, 2009 9:50 AM

Group: Forum Members
Last Login: Wednesday, November 18, 2009 12:48 PM
Posts: 101, Visits: 134

Racheal,

Thank you so much for adding yourself to the parent board. I'm sure a lot of people will have questions for you. I'm really sorry to hear you are having to deal with this, but the first step to remission is getting the diagnosis and then finding the right meds.... so your well on your way to feeling better. Do you have a hard time getting through your days at school? Have the doctors told you that you will eventually be able to start dancing again? That thing about your head feeling pressure.... did they ever tell you what that was? I'm sure most of our kids are too young to describe something like that... I wonder if it is more common with jra then people know.

I think it is really great that you are offering to share your experience with this group. We, as parents, don't really know what it feels like, all we have to go from is books and what our kids and doctors tell us. Some of the parents on this board have very young kids who can't describe the problems as well as the older kids and I think you are a great person for offering your help.

Post #4220961

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Rachael Gustafson

Posted Tuesday, August 11, 2009 7:10 PM

Group: Forum Members
Last Login: Tuesday, August 11, 2009 7:22 PM
Posts: 5, Visits: 4

Im really sorry for my late reply been out alot during my summer hols haha BigGrin

thanks for replying its nice to know theres people I can talk to that have had experience with there kids and can help me and my mum Smile

x
Before being diagnosed it was really bad in school, id have a bad time waking up as moving out of bed with my stiff neck was unbearable and I was only prescribed ibuprofen by my GP, he didn't seem to really care! thankfully, my knees never went really bad until about a week before I went into hospital, so I never missed to much P.E and stuff until then. Right now, I'm feeling really good as i've just been back on an IV drip for a week and so am dancing like crazy but not doing too much just yet, but feeling alot more energetic. As for the crazy clicky skull.. my doctor never really seemed bothered by it and put it down to my stiff neck at the time so I don't know really, but since my joints started to hurt, I haven't had it.. so I dont know Blink

feel free to ask whatever you want.. better off working together to treat than feelin alone!

Rachael xx

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