im a whiner, but what can i say this is not new, but pain totally has gotten to a new level. I physically cant run still, i dont get it, sure i understand it would hurt to run but not be able to, my ankles send the sharpest pain the second i try tat i cant. when i get up somtimes i end up sitting down again cause my ankles or knees didnt work right. not good! im frustrated and dont understand how i can feel this bad after the cortisone shot.....i did taper back to 5mg prednsone from 10....a week ago...... i dont know how i can be at camp like this. today i started to try and run after a kid but had to have somone else do it.. what am i gonna do? im 19!!!!! ive always danced and done whatever i wanted through the pain but this is too much i cant do itYou go ahead and whine anytime you want, we're here to listen. I'm so sorry you're dealing with this at such a young age. It sounds like you need to talk to your doctor about tweaking your meds. The good news is, I feel certain you won't have to face this your whole life and feel so rotten. New drugs are coming down the pike all the time and I'm sure there will be an answer for you to help you live a wonderful pain-free life. It's not always going to be like this. This must be frightening when suddenly you can't do things you could and it is very overwhelming.
Take a deep breathe for starters...and keep calm as this sort of thing can really panic you. This could be a flare or your RA changing as you transition into adulthood.
Probably a good idea to contact your Rheumy ASAP and tell them what is going on and get some advice. If you can access a GP close by that is a good idea too or your one from home.
And maybe PM Katie, Joonie or Steph and get some advice and suggestions from them.
This must be so tough to go through especially being at camp it would be really inconvenient and frustrating.
If it's any consolation I am 39 and feel a 111
yea i should talk to my rheumy im not going back till second week in sept. dunno what med she will try next done enbrel and humira, on mtx and humira and pred right now...nothing helps! GAR!!! Yes, it is frustrating, the meds, I know. I have just failed Humira. You do need to talk to your docs, darl, as soon as possible because you are not okay even though you want to be.
To echo what everyone else is saying, talk to your rheumatologist! You shouldn't be in that much pain. Have you had RA long? the docs are usually even more concerned at the beginning of the disease to damp it down as much as possible, to reduce any long term damage. So if your meds aren't working enough, they need to know.
I don't think your post even counts as "whining". You are very allowed to talk about what's going on with you and your JRA, even when it isn't so great. Listen to these smart people here and talk to your RD. And please keep us posted on how your doing.
Linda
Whine away lady. You know I do! LOL I dunno what to say....you need to put a call in to the doc. You don't suppose the fibro part is giving you problems, do you? It doesn't really sound like it. But I don't have it so what do I know, right? :) Once again, you are asking questions I've been screaming about for YEARS. Just, no one listens to me because I don't have it that often. It comes and goes so I always get the "oh, that's just how it is" answer. :( I'm sorry!!! Hi, please remember all the posts about tapering sloooowly!!with prednisone. Get some 1 mgs. and go from 10 to 9, for several days, the 9 to 8 and so on. If you get down to 5 and are hurting you can go back up to 6 for awhile. Those little things are really powerful and just a few mgs. one way or the other can cause a big difference in the way you feel. If you taper too fast you can experience increased pain and 'the fatigue'....hits you! I've learned a lot about prednisone from this forum....TAPER Slowly. Lyndayea yea, you are right, i dont have 1mgs but i did taper slowly, using 2.5 and alternating and stuff took a week.... i was ok for a few days......Sometimes, my right leg will just all of a sudden get sharp pains like someone is stabbing a knife right through it. It usually occurs when there's bad weather for a long time or if I've ignored those small little aches and overdone it. Doctors don't really know what is causing it. Best advice you've been given, call your doc. Let them know what's going on so they can check it out. Try to rest if you can. Depending how long you have been on the pred, you need longer than a week to taper! Have you heard from your doctor yet? no i havnt. ive been on pred for forever but had just been put on 10mg for a little, then i got a cortisone shot and was supposed to go back to 5.........
littlemermaid you may have small fractures, long term pred use can cause brittle bones. I know you know that but why don't you have them ex-rayed to be safe. Being at camp is very strenuous on a good day
Feel better soon!
Hi littlemermaid. Sorry you are having so much pain. I agree you should talk to your rheumy as soon as you can. "whine" anytime. nope ddint tell me to stay off my feet.......it wasnt in the joints though was in my butt hahah