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Rheumatoid Arthritis
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Posted 1/2/2016 6:23 AM (GMT 0)
hello. Im new here.
Here we can get our frustration out and give tips and help.
For around 8 years ago i was diagnosed with juvenile arthritis.
Ive got an troubling type, that is treatment ressistant.
After being so ill and see the inside of an hospital so much and still not feeling any healthier i quit treatment a year ago.
In august my swollen joints got worse, normally the swelling comes and goes but since then it has not got any bether.
Troubling getting my joints out straight, cant barely hold any weight,cant jump and so on.
Or 1 week out of thoose months since august i was nearly free for swelling beacuse of prednisone, but after my first day off all the swelling comed back.

I dont remember a painfree second. I wake up at night. Cant sleep. Wake up with it. Having my day with pain. Where is the good days? Someone else have no good days?

Okey.
That was not the point.
The point was I really want to get painfree but I can handle it, its worse with what my joints cant. I just dont understand how it can be impossible bending them,jumping,walking normal.. And stuff.
Why?
And if someone just touches my swollen joints it hurt alot. Before it was not like that.. Anyone?

Question:
What helps you when you are in pain?
What helps you sleep?
Something you want to get out?


Sympthoms: rash,fever,fatique,immflamation,red,tender,pain,stiffness,muscle weakness,anemic,tremor,dizzyness

Treatment:nsaids,mtx(inj/oral),ramicade,humira,orencia,cortisoneinj,training(atleast 3times a week),diets,hot/cold, compression is what i remember now
Posted 1/3/2016 10:29 PM (GMT 0)
Hi and welcome to the site
you didn't mention how old you are so how old when you were diagnosed
I was young when I first got it but didn't get diagnosed till I was in my 20's and now older as 55
I did same as you get tired of the medication and didn't even go to a Rheumatologist again for a few years I just went to my local doctor and lived on prednisone and pain killers But this was a mistake,
I think if I had kept going and started on the medications earlier I might be a bit better now.
I know it gets Very Annoying going to hospitals and having tests but RA is something that if you get the right medication Early it can control it a bit better
Prednisone is Not a good drug to keep on for a long time so you want to get a good medication that way you can take less prednisone
When you said You Don't remember a Pain Free Second I know Just what you mean I said the same thing to someone not long ago, But you do get better days OK Not like they used to be but Better For You and you can do things.

You need to tell your Doctor and Rheumatologist keep a Diary of your pain and what makes it better or worse and take this with you when you go see them

Sleeping you can put a pillow behind your back or under your knees to support, I know sometimes the sheets are too heavy and hurt , there are things you can get from disability stores or pharmacies to help called (bed cradle) this holds the blankets up off you

Physiotherapy will help your stiff joints gentle exercises

I like a warm Bath to soak in this helps and put radox or bath bubbles in it, but sometimes it is hard to get in or out so need help to do this

You need to get a Team ; Doctor Rheumatologist Physio etc and hit this RA on it's head
Posted 1/9/2016 4:14 AM (GMT 0)
BadDay has said everything I was thinking. I use a heating blanket and sometimes a pad too but hot baths definitely help me at night when I am in pain and cant get comfortable no matter what position or where I try to sleep. I used to use ice a lot but it actually started making things worse after using it for all these years and getting relief from it. Kind of like the RX, sometimes they just stop working.

Pain meds are a touchy subject for some people but if you are in non stop pain I would ask for them. It is senseless to continually suffer while the Doctor tries to find a medication that works. Sometimes even when they do the damage already done is enough that it just isnt going to go away. Take them as prescribed and follow the Doctors directions and they shouldn't be a problem.

I hope that you find some relief. -Don
Posted 1/9/2016 6:44 AM (GMT 0)
Hi Kid,
I have tears in my eyes reading your story. We all know how really painful those joints can get and I wouldn't want my worst enemy to have that pain. It sucks that that the meds haven't worked and you can't sleep. It sounds like you are beginning to get joint damage too. I see you have tried Humira, but you don't list Enbril. It's what I switched to when the humira quit working. Maybe worth a try?
As the others have said, don't give up on the docs, because you have a lot of life left to live, and there are new meds coming out all the time. You need to make sure that when you get the one that works for you, your joints aren't badly damaged.
Hang in there, kiddo, and let us know how you are doing.
Wish I could give you a pain-free hug (())!
Posted 1/10/2016 1:52 AM (GMT 0)
I also agreed with everything Bad said.

It's important that you get back on meds.

I agree prednisone is a bad drug long term but when I had the mother of all flares that lasted three solid months where I lost 28 lbs., and was completely dependent on others for my even most personal needs...when I didn't sleep for 2 weeks straight the pain was so bad and no prescription pain killer even took the edge of...I had lost the desire to live it got so bad and a new doctor put me n 40 mgs. of prednisone a day. I turned the corner quickly and the MTX kicked in and I now live a very full life.
It took me 1 1/2 years to wean off of that dose but I did manage to get completely off.
Maybe discuss it with your doctor.

I wish you all the best.
Posted 1/15/2016 3:40 PM (GMT 0)
Weary, your story sounds so much like mine. I was down to 145 lbs at one point and was so so sick. The Prednisone worked but boy I hope I never have to use it again. I dont know if my wife can handle another go round with me on it!
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