Rheumatoid Arthritis (plus) support thread

[Frostfire]

Okay, I thought I'd start a thread where those of us with Rheumatoid Arthritis or other related auto-immune disorders can chat, complain, get/give advice, talk about treatments or medications, etc.

I'll start by complaining! My darn hands (knuckes mostly, and my pinky finger) make it so hard to take notes in my classes That plus turning on the water in the morning suck big time. Oddly, not much else troubles them (including climbing - go figure).

And my knee! So swollen and puffy since Monday morning. It was bugging me a bit out in the field on Sunday, but nothing like the last two days! And I was so happy last week because I was able to kneel down for the first time in weeks. *sigh* Today was a day of "dirty looks" from other students on campus as the rushed by me as I walked to class, and as I sat on a bench in the gym because I didn't want to stand between sets .

Other than those two, my shoulders and feet are currently behaving themselves , lets hope they stay that way! Gotta take my small victories when I can.

[highonlife]

I feel with you.But it will get better.
Nowadays my only complaints is my wrists, I can't lean my bodyweight on my hands.. So sun salutatations and all kind of asanas where you lean on hands is off

But on the good side, all else is behaving perfectly.. And gymnastics in heated pool really do help!! Doing more of that this afternoon..

[Frostfire]

Oh, man, I have GOT to find a heated pool in the area! I've been swimming at my University, but its SO cold (everyone else seems to like it ) that it just makes me ache (and shiver!)

[highonlife]

Oh you have to!! Today it was so nice and actually 34C it was so nice

[Frostfire]

Argh! So angry and frustrated.

I went to the Emergency Room yesterday because my knee just locked-up and was so swollen. But the STUPID fucking doctor had a look at my knee and said "it doesn't look that swollen to me". He didn't even compare it to my other knee, which was half the size. Granted, on the way in I saw a man (must have been diabetic) with black purplish feet that were massively swollen and my knee doesn't compare to that, but that is no excuse to dismiss me!

Then he pulled at it and bent it a little, which hurt, and preceeded to tell me that Rheumatoid Arthritis doesn't affect knees!!! That it "only affects 'small' joints, like those in the hands". What an idiot.

At this point I was getting really upset with him, then he had the nerve to ask if I had perhaps just fallen down or twisted it somehow?! Like I wouldn't know if I had! What an idiot! I had already told him I had just woken up to it being so swollen and that I had RA.

Then, he ordered x-rays, which I didn't want because 1) It doesn't show soft tissue, and 2) I don't have insurance and they are expensive! When I balked at getting x-rays, he said "fine, I can't help you then". Ass

So, he gets the x-rays back, puts them up and says "looks like a healthy knee to me, I don't see anything wrong" If its so goddamn healthy, why can't I move it!?

At this point I was just in tears because I was so upset, but he keeps going: "We'll put it in a brace and give you some crutches, just rest it a few days and it will be fine." A BRACE?! Is he stupid? Its already immobile from the swelling! How the f**k is a brace going to help that?! Walking and moving my knee some is the only way it even sort of loosens up!!! This guy wouldn't even listen to me by now, but I refused the brace and crutches when the nurse brought them in.

Finally, and not that its much better, he decides to precribe a 5-day cycle Prednisone, a corticosteroid, along with some ibuprofin to bring the swelling down. And some xanax because I guess he thought I was freaking out at him a little too much. So I took my drugs, went home and slept the rest of yesterday and last night away. When I woke-up this morning, the swelling is down a wee bit, but it hurts worse. And the side affects I've noticed so far is a HUGE appetite and I'm really thirsty. Yay

I hate American doctors, I hate the medical system here, I went through all that torture just to get a lousy precription and it will cost me hundreds of dollars. Get me outa here!

[Rochellita]

Frostfire I'm so sorry the doctor sounds like an incompetent arse. Is there somewhere else you can afford to go for a second opinion?

[highonlife]

Oh I feel so sad for you!! what an stupid arse!! He obviously had very little knowledge of RA!!! I wish I could help you somehow!! But the prednison did make me also hurt more before it helped me.. hopefully it will do the trick until next month..
Do tell me if it is anything i can do to help!! (like, from the other side of the world.. )

[Frostfire]

Thanks you .flux and highonlife, I appreciate your support

But the prednison did make me also hurt more before it helped me.. hopefully it will do the trick until next month..

Wow, that's actually good to know because again the pain is worse today, but the swelling is almost gone (still a tiny bit puffy though).

[Frostfire]

Wahoo! My trip to the ER bumped me up some priority list, and I'm in to see the RA specialist TOMARROW!

I'm super excited because maybe now I'll get some *real* help. That, and my last day of Prendisone was yesterday, and already my knuckles are swelling and hurting . Knee isn't swelling any worse than the last few days, but its hurting, too. Its surprisingly okay in the morning, but as the day goes on it just aches, which is odd because that's the exact opposite as it was before taking the drugs.

But I was shocked at how nice it was to wake-up without morning stiffness, I hadn't realized how bad it was until it was gone, or for how long I've been living with it. I could actually move first thing in the morning for the last few days! I felt so nimble and light, and it hasn't taken me so long to get ready in the morning. What a feeling!

Anyway, wish me luck tomarrow that this guy isn't going to be a total ass!

[Frostfire]

New day, new drugs. I got a new NSAID prescription today. I was taking ibuprofin before, but it just wasn't doing the trick. Now I have Etodolac which was RIDICULOUSLY expensive , but I'll give it a try and see if it helps.

Also, I got an immunosuppressant to start today as well called Hydroxychloroquine (generic name, I forget its brand name but who cares?). Its an anti-malaria drug, and if it doesn't help, then I'm on to bigger and better drugs.

I gotta be careful because both of these diminish appetite, and mine's terrible as is! I'll have to check to make sure I'm not loosing weight now

Blah, is it wrong to feel squimish for having to take a bunch of pharmacuticals?! I'm not looking forward to a lifetime of drugs and treatments

[highonlife]

So agree!! Not fun looking at a life with treatments and drugs, but then on the other hand life without it seems no better...

But on the bright side both drugs, treatment, physiotherapy and acupuncture and others does make life with RA easier and better.. At least in my case.

[highonlife]

More complaining.. my wrists hurts!! but local cold therapy helps some, and ibuprofen-gel and not doing anything helps some...

[Frostfire]

More complaining..

Glad its not just me

my wrists hurts!! but local cold therapy helps some, and ibuprofen-gel and not doing anything helps some...

Bah, no good . What is this ibuprofen gel you speak of? Sounds nice!

[highonlife]

Yeah.. Ibuprofen gel is nice, it is a gel that works locally. I put it on just at the affected place. On small joints it works almost better than ibuprofen in pill form. I use it on my wrists, fingers, ancles and toes. Sometimes knees and elbows.. but there its better with pills also.. I admire you that you manage to exercise thru all your pains..
Me, I cant exercise thru pain..

[Frostfire]

Okay, just back from another appointment with the rheamatologist. I asked about the ibuprofin gel, and apparently its not available here in the States! Bah. Oh well. He did write a prescription for another "creme", but I need to look it up to see if its worth actually getting.

Also, I mentioned that my knee is STILL bad and he said he would do a cortisoid injection, but then when I finally agreed (I asked a ton of questions first) he was all, on second thought lets wait. Bah, so if its not better by next visit, he said he'd do the injection. I doubt it will be better since there's been virtually no change (just ups and downs) since last October! So I'm left to wait again

And I still don't think he takes me seriously when I describe the level of pain, etc. Just because I look young and healthy I mean seriously, he looked at some of the recent blood work and said "wow, it looks more aggressive than I thought", but still just dismissed me when I said the pain level kept me awake at night and made everyday activities near impossible.