Im going tomorrow to my rheumy. My mom isnt coming and im stressing out. After 7 weeks off humira im much worse off then i was with enbrel(which i thought wasnt helping) im on 10 mg prednisone and 25 methotrexate. im awfull. my ankles are the worst but most of my joints hurt. ive always been one that hurts most at night but now its most when i get up and night, i hate waking up in pain!
Anyway im just worried what my doc will do, my mom is like there is nothing else to try after humira but im like no there is, but she thinks im not severe enough to be on IV stuff. And i sort of agree, i mean i walk fine and stuff but i AM in lots of pain...i dont have damage and my blood work is normal though we just cant find anymeds that help! i dunno i guess ill have my mom call my rheumy after the appt if she prescribes meds my mom doesnt want me to take. im 19 and should be old enough for this lol
im stressing and stressing doesnt mkae anything feel better!
my mum is under the impression and believes very strongly that yoga will cure me. im sorry but i dont buy that i think just like any other excersise movement is good for te joints and gets them moving but not CURE!!!!!
GRRRRR im just a grump! I want to cut off my legs and get new ones which dont cause me pain. im tired of this. im tired of my mom saying i complain so much i only complain because when i dont she says you must be feeling better you havnt complained in awhile and im like no! im just not complaining as much!!! im tired of my friends not understanding and thining its not that bad cause its JUST arthritis..................AHHHHHHHHHHHH
Sorry guys. i feel awfull doing this cause i know you are all on the same boat or worse and i should just feel happy that things arent worse but the pity party comes anyway
Sorry you're not feeling well...hope you find something that works for you soon. I'm currently on Humira and doing well, but it took more than 7 wks to really kick in for me...everyone is different of course. It's frustrating sometimes but it takes a lot of patience to know if a medication is working. As for the yoga, I agree...and I'm a real yoga nut. I do about an hour a day of yoga. It helps protect the joints from future damage and makes me feel better psychologically...and reduces stress...but it is NOT a cure! I would recommend that you try yoga, or something similar, to help you deal with your stress. It can make a big difference. I do feel a lot better than I did five years ago so there is hope...hang in there!
Alan
((((hugs)))) let me tell ya from a parents standpoint...it is hard to let our kids grow up and go to the doc themselves. I envision I will have many issues with this when Danielle becomes of the age to do this by herself.
I wish you felt better tho. Please let us know what your rheumy says. And you aren't a whiner. As far as Im concerned any kid that can deal with this crappy disease is a trooper in my book.
Hi , littlemermaid, Oh my gosh I am glad you feel comfortable telling us all about your pain. That's what we are here for, to support each other, when you feel better and we are suffering I'm sure you'll have comforting words for us!
You are surely struggling with the medication, and I know how you feel . When you don't think the stuff is working for you it is frustratin', but I'm afraid it is all we have. I hope your doctor understands what you are going through and can give you a good 'medical path' to follow. I get really upset sometimes that my meds aren't working, but after the doctor talks to me and say, 'be patient Lynda' , I try to relax and believe him.
I'm so sorry you are in so much pain and I hope you get relief tomorrow. That is the most important thing right now, you just can't go on hurting. It will mess with your mind.
let us know how it goes, soooo sorrrry, Lynda
LM I wish you had more support from your Mom. I really don't think your too young to recieve biologic meds. I've seen very young children getting Remicade for JRA and Crohns. If you are in such pain and can possibly find some relief it may be worth any possible remote risks. But that is for you and your doctor to discuss. Best wishes for a good appointment with your doctor.LittleMermaid,
If you were here, I'd give you a big, yet gentle, hug. I am so sorry that you are having trouble finding a treatment that is right for you. We all know how terrible it is trying to deal with this pain every single day. It wears you down physically as well as emotionally.
My mom used to tell me all the time, "It's just arthritis, get over it." My dad used to tell me RA was the easiest thing to cure with herbal remedies. I realized that no one really understands the nature of this beast like the people who have it. That's why I feel very fortunate to have found this board. You can grumble here and know that the members of this board will understand exactly what you are going through. I find peace in that.
The only advice I have for you is not to be nervous about your appointment. He is there to help you. If he mentions a treatment that you don't think your mom would want you to try, let him know that too.
Please let us know how your appointment goes today. I'll be thinking of you.
Thanks so much you guys for your support. Im getting ready to head out now to the doc and woke up with my ankles hurting like always and my hip as an added bonus. Im hoping my doc actually sees some inflamation today. ill keep you updated,
Wait wait...not to get off topic here...buuuuuuuuuut...there is another cheesehead here???? There is one other one besides me. CHEESEHEADS UNITE!!! That makes 3 now!!!
Sorry hunny didn't mean to take the focus off of you. I will be waiting for your update. How is the EMS thing going btw? Even if the doc can't see inflammation...they can certainly see the pain you are in. And we all know pain=something not controlled right.
she didnt want to sign the EMT thing but she did anyway.((((hugs)))) I am sorry things did not go well today. Sigh. I am glad tho she signed off on the EMT stuff.
I know this is hard...but when she said Mobic...your answer maybe should have been...no didn't work for me let's do something else. It is probably difficult for you to do that since you have always had your mom there with you advocating for you. Now you are getting older and can start the process of advocating for yourself. We have started that with Danielle by letting her make some treatment choices for herself. I'm sure there will be times tho that I overrule her (for her best interest only) but we will work thru that when and if it happens.
As far as the steroid injection goes...my feeling on it is get it. They do help. Hopefully your doc will mix it with lidocaine and it won't hurt as bad and you will get 6-8 hours of relief in the area that was injected.
hehe she is gonna do it in my butt........sooo will it help all over?Yes it will help all over. I used to get shots of steroids in the butt all the time. My injection site would be sore for a couple of days so do it on the side you DONT sleep on lol.
I had in my shoulder joint (with lidocaine thankfully) and it really helped the shoulder, I didn't notice it anywhere else, I was just so glad that the pain (like a knife in the back of my shoulder) was gone.Littlemermaid,
Shortly after I started on Plaquenil, my inflammatory markers returned to a normal range. Sometimes the CRP would hover right at or slightly above normal, but the Sed Rate was always very low. I hardly ever swell. I only had visible swelling maybe two or three times, but never when I went to the RD.
I recently got copies of my medical records. I saw written comments from my RD about many joints where he felt inflammation. Just because you can't see it doesn't mean it isn't there.
I also wonder if the reason your RD asked if you were crying from the pain is because she is trying to get a handle and how bad it is for you right now. My mom is always telling me that I'm not very good at expressing the seriousness of my pain.
I think she obviously believes you or she wouldn't have treated you with Humira. You're a lot like me, I think. I'm always afraid people won't believe me because there isn't any outward sign of my disease. Just try and remember, there are a lot of us that don't have obvious swelling. You aren't alone!
I can't remember if you have ever taken prednisone. Have you? If you had a favorable response to prednisone, then your problem is inflammatory in nature.
yup im on prednisone now. and it does help. im on 10 now though and its not kicking this flare away.......Littlemermaid,
I'm not good at explaining either. What I usually do is tell my RD exactly what I can't do. "My husband has to dress me" is obviously worse than "I can dress, but I'm having a hard time fixing my hair." Get the picture? Maybe you should try that.
Did you start on 10 mg prednisone? I usually start on 15. Then after about a week, when I reduce to 10mg, I usually have a small flare before I level out. I'm usually fine when I reduce to 5. Maybe you need to start on a higher dosage?
well i started on 80 last summer and STILL havnt tapered all the way off! i was on 2.5 for awhile but was bad so went to 5 and now she has me on 10....