Rheumatoid Arthritis (and its variants) :

back from the rheumy :'( - - Posted by rhea (rhea), 7 November 2002

Hello Everyone,

Well, after 12 1/2 agonizing hours Dad and I finally arrived back home. We had problems finding the rheumy's office (dad accidently parked in the wrong garage) and found ourselves in a mall enterance instead of Rosedale Medical Center.  So I had to crutch myself half a block to the correct building.  I was in terrible pain by the time we got to the rheumy's office.  

The rheumatologist was not that helpful.  She thinks my knee caps are subluxing (technical word for almost dislocating, but not quite) and she noticed that I had some water on my left knee (technical word for extra fluid in the joint).  She thinks the deformaties in my fingers (which the x-rays show startingly clear) are do to "extra ligaments that are loose".  Dad and I are more than skeptical about that with the way my fingers look, and the x-ray of them.  So anyways her final conclusion is that she doesn't think I have rheumatoid arthritis because I don't have joint effusions, and I may or may not have one of the 200 other types of arthritis but she's not sure.  She also wants me to get ANOTHER bloody mri done on my left knee to "help her rule things out".  That's exactly what my 2nd surgeon said and he and the surgeon after him used that mri as an excuse not to help me at all.  Now that the mri done last year is finally expired in accuracy Im not about to get another one done to provide them with a renewed excuse to dump me off of their patient list.   I also have to get a bunch of other tests done including even more x-rays that may or may not harbour clues as to what is wrong with my body.  We were suppose to get these tests done at that hospital, but after all I had endured that day, I waited 30 mins in the blood lab and that was all I could take.  Dad got our forms back and we high tailed it back to north bay.  We got out of the hospital just in time to hit toronto rush hour traffic on the 401. Just after Bracebridge a nasty freezing rain/snow mixture started pummeling us.  There were also a large assortment of transports racing by, and each time one passed us in the other lane about a 3 gallon bucket worth of water was hurled onto our windshield temporarily blinding us for a few seconds.  When we finally arrived home I was in worse shape than I have ever been before.  I was literally shaking in pain.  It was at that point that I've decided if this next rheumy I see in December doesn't know whats wrong, and if my knee surgery in september proves useless than I am going to hunt down a neurologist and beg him/her to sever the nerves in my legs.  A life in constant debilitating pain is not a life at all.  I'd have a much better quality of life wheelchair bound with no knee pain.

So a full day of agony and another demeaning paper gown later, and Im no further ahead!!  Im very dissapointed to say the least.  I had hoped she'd know whats wrong,  prescribe meds to help it, and I'd be back on my feet within a week or so.  Maybe the rheumy I see in December will know something.  Right now Im ready to give up and say the hell with it all.  These appointments are too emotionally draining and physically torterous.  I spent the last three hours before I fell asleep last night shaking in pain and sobbing.  I've fought this for so long and so hard, there is just no more fight in me left.  There's just more and more and more and more tests and none of them ever have any answers!  Im about ready to throw her test requisitions in the garbage and carry on life the best I can without any doctors near me.  Perhaps I am still overwhelmed by it all.  Right now I am in one of my lowest hours.  

I've got to go back to bed and my icing machine now.  I hope everyone else is doing okay.  Excuse me for this major vent, I do realize that many of you are having a worse time and my heart goes out to you.  

(((hugs))) to you everyone

rhea
Posted by Netty (Netty), 7 November 2002

Wow, what a day you had. I know your young, but if all else fails then maybe they should think of you as a TKR option. Anything would be better than you wanting your legs chopped off. I hear people who have amputations say that they can still feel their legs when they're not there and your mind has been programmed so long with having pain in your leg that you would probably still be feeling it if it were gone. I can understand your frustration with being told to go through the same tests all the time and getting no answers. Maybe they have some way of cutting the nerves in your leg so you cant feel the pain, who knows. I guess I was a lucky one , I have no genetic or arthritis problems, it was just a straight forward break of the ligaments. I thought you deserved a reply of some sort after your epic post. Good Luck girl
Posted by Stacey (Stacey), 7 November 2002

Hi Rhea
What ever you do dont give up!  When you are young it is especially hard to find good doctors that are willing to help.  Just remember you now have a good OS and Im sure a good doctor to help oyu out with other things is just around the corner.  Just keep smiling.  We all know that the constant dor visits are more gruelilng then the actual pain.  But they are worth it in the end.  
Posted by Liz_-_UK (Liz_-_UK), 7 November 2002

Rhea honey,

Don't give up! One of those tests sometime will have an answer, i am sure of it.

I know things are horrible at the moment but you are strong enough to get through it. And we are all here to help you.

I hope you feel better when you wake up, and if you don't then stay in bed with your doggy and a hot water bottle and things will soon start to look better.

I'm here if you need to rant. Sleep well sweetie!

Liz
xxx
Posted by Iona_-Uk (Iona_-Uk), 7 November 2002

Rhea

I'm so sorry the rheumy was as arogant as they come, not that that is any consolation to you.

Don't give up whatever they say, dr's tend to shale off young people with joint pain as being over dramatic, attention seeking or whatever, when in fact, if they bothered to do a bit of extra ground work then they would surely realise that they aren't.

I had a lot of rheumy trouble until I found someone who came recommended, he was excellent, he dud say it is possible to have an arthritic condition even if bloods are neg as the evaluation of this is usually made on history and physical examination.

For the firat bloods I had I had normal bloods than after about the 6th lot they started showing the rheumatoid factor, even so I had began treatment, because my history and exam both indicated it.

Have they given you any treatment at all or did she palm you off?.

I do hope that your next visit goes a bit better, it may be worthwhile, I assume you've done it though, to do some net research on RA or JCRA. I'll see what I can find.

Loads of love and hugs
Iona
Posted by sha22 (Sharon), 7 November 2002

Rhea,
I'm really sorry things didn't go well for you! Just don't give up! In the last 4 years of pain I've gone through, the one thing I've learned is that you can't lose hope. Right now don't focus on anything past the next appt you have, try to think positively about it. Things will get better soon, I'm sure of it! You're a really strong person and you can get through this! I really hope things are a little better for you today. If you need to vent, I'm here to listen.

(((Hugs)))
Sharon
Posted by Amber (Amber), 7 November 2002

Rhea,

DON'T GIVE UP!!

I know that it's so hard right now...and you aren't sure that you can take much more, just please, keep your chin up.  You may think it's easy for someone else to say, but we're all pulling for you!  Try to keep your spirits up and remember that we are all here for you.  

God doesn't give us more than we can handle.  At times, I know that that doesn't seem to be the case, but it is, I assure you.  This too, shall pass.

Hang in there girl, we're here when you need us!!

Amber  
Posted by rhea (rhea), 7 November 2002

Thank you guys so much for your support.  This all gets so overwhelming.  Im just completely sick of all of these damn doctors.  They make me think that Im making it all up, or its not that bad or something!  Actually thats not 100% true.  My OS that I have now, and his lovely student were WONDERFUL.  I said my knee swelled and they believed me.  I said it clicked and popped, and they believed me, even though when they felt it track it was fine.  Maybe rheumy #2 will be better.  Siiiiigh    Im kind of wishing I never brought up all of the other joint pains.  

Here are two pictures of mr. left knee today.  The pictures don't really do it justice as the flash tends to really fade out the marvelous purple and red colours.   But the swelling showed up pretty good.  What do you guys think of mr. left knee?  Does it look swollen to you or am I just paranoid?  Does anyone elses knee turn colours like that?  

Thanks a bunch.  You guys are wonderful.  I guess I won't quite give up all together yet, but Im putting a neurosurgeon on speed dial if that pain gets that bad again.

(((hugs)))  You guys are like a very close family to me.  Thanks for helping me through my really rough spots.

lots of luv to you special people

rhea

My colourful knee.  Its actually more purply, and the red is more intense in "real life".  The flash tends to fade a lot of the colouring, but this is the best picture of the colours in my knee:



My knee isn't purple or red in this photo just swollen I think:

Posted by rhea (rhea), 7 November 2002

Oops, hit the wrong button and posted the message before I was finished.  Here, I'll try getting the pictures to work.




Posted by Janet (Janet), 8 November 2002

Rhea:

Sorry for your bad experience. It's so hard emotionally to get your hopes up and then be so disappointed. But don't give up. You still have hope that the next visit with the next doctor will give you an answer!

Janet
Posted by AC (AC), 8 November 2002

It does look a little puffy to me, but it is hard to tell without comparing it to your good knee.  For me, I often think my knee looks OK, but when I put it beside my better knee, I see that it is really swollen

My knee was about 5-6 times as swollen as your picture after my LR, and then after I got a blood clot behind my knee, it doubled that.  But now, it is about 3 or 4 times as swollen as your picture.  I can't believe at 2.5 months post op that my knee is still this swollen, the doctor told me after 6 weeks, it should be gone.  Oh well, I did have the blood clot to complicate things.  My knee is still maltracking a lot so I guess it is having trouble healing.

Swelling isn't normal though.

Not sure about the colours.  Mine gets very hot to the touch and a little red, but not purple.  When I had the blood clot, it was kinda purplish though.  Purple usually indicates circulation troubles.  Why not get an appt with your GP about that?

Good Luck.
Posted by rhea (rhea), 8 November 2002

Hi AC,
My other more "normal" right knee is very boney and not puffy at all when not swollen, and it only changes colours after a quick shower.  Weiird.   The rheumy did say my left had water on it so I guess thats a techy word for some sort of swelling.  I think it means extra fluid in the joint.  Maybe after all of these other tests they'll know whats wrong with the rest of my joints, and maybe this OS will fix up the knees.  Sure would be nice to get my life back after 6 years of this garbage.

I hope your knee gets better soon too AC!!  Here's to better health all round.  

take it easy

rhea
Posted by Helen_uk (Helen uk), 8 November 2002

Hi rhea
Sorry you are ahving such a bad time the knee looks either rhumy or infected to me but then I aint no doc so I dont really know but I really feel for you.
I am back now after good physio and doing well changed my tablets and feeeling much better with more ennergy things still slow but better.
Try toi see the new tests in a posititve light a least they arent saying go away we cant help.
They need to make the right dianosis and hopefully this time they will.
Take care
H xxx
Posted by martiniswiller (martiniswiller), 11 November 2002

Hang in there, Rhea... You are such a strong person and everything WILL work out.  You will find the right person to help you.  I know (although I was in nowhere near as much pain as you) that when I had my old OS, I would leave there in tears every time, because he didn't offer me anything to try or any relief.  I sure hope you get the answers you need- you may just have to keep looking for a doctor that really is invested in making you better- now AND in the future.  I feel so bad that someone as young and vivacious as you is going through so much- you have incredible character and courage, and you are going to come out of this an even stronger person.
Posted by Tizzy953 (Tizzy953), 11 November 2002

Rhea,
You can't give up.  You are so young and have so much fight in you.  As they have said before, take it one doctor's visit at a time.  You can only take one day at a time and hope that the next one is better than the other.  God will only give you what you can handle and right now I am sure you are thinking He is testing your strength.  But you will get better.  One of these rheumy docs will do something other than blow you off, just like the new OS you have.  It will get better, you have to believe that.  Just keep postitive, when you are feeling down curl around one of your puppies and hold him for a while.  That always cheers me up.  

I hope you are doing better,
Kenzie
Posted by rhea (rhea), 11 November 2002

Thanks Helen UK, Martiniswiller, and Kenzie for your wonderful words of encouragement.  It really does help keep me on trucking, although this truck is running low on fuel.  Im so behind in schoolwork, and I am trying hard to catch up, but between pain and the drug daze I can't do much.   I find this scary, as I've always prided myself as a good student who gets good marks.

Well the newest development is lots more swelling and fluid in that knee as well as these spots!  I don't know what they are...  They are like irregularily shaped blobs between 1/3rd to 1.5 inches in circumference. They are red, hot, and painful.  Fuuu-uuun.  I'd like to have that rheumy look at them, but I don't see her for awhile.  Did I mention she wrote me out of school for 2 months?    Tomorow Im planning on hitting the hospital for bloodwork which 21 tests need to be run on (not exagerating, there will be 21 tests run on my blood.  Vampires!  All of em'!)urinalysis, and chest, pelvis, and spine x-rays.  Im feeling soo much like a lab rat right now...  Im hoping and hoping that whatever's wrong will be shown on these tests, but somehow I doubt they'll show anything.    I can always hope though right?  

Well thanks so much guys for your unwavering support.  Really, it does help me.  I wish this post was a bit more cheerful, but Im feeling a bit worn down.  Prolonged pain seems to wear me down and eat away at the person inside.  On a brighter note, Dec 13th (yeh, FRIDAY the 13th   LoL) I have my appt with the 2nd rheumy.  Maybe he'll be really nice and know his stuff.  Fingers crossed.

Lots of (((hugs))) to my special net family,

luv

rhea
Posted by Netty (Netty), 11 November 2002

Great pics Rhea,
I think it looks very swollen, especially on the outer side and that bruising should have settled you would think. The only place I bruised was where they took the Hammy graft on the back of my leg. Im not sure how you put the pic there but I might try and add one of my op, I got heaps taken during my last 2 surgeries. Drats, tell me how you add a pic to the post please.
Posted by rhea (rhea), 12 November 2002

Thanks M and Netty for your encouragement and suggestions.  I got all of the tests done today at the hospital.   They took 9 TUBES of blood from me!   And they didn't use the standard small plastic picky needle either, it was a nice large one for the "serious blood siphoning".  Fuuu-uun.  I've been looking a lot more pale, and feeling more and more weak.  The spots on my knee are getting larger and hurting more.  Its making bending my knee very painful, but I am making myself bend my knee through full ROM because I do not want to risk getting scar tissue and losing ROM permanently.  I find all of this worrisome, and I have this feeling that these tests are going to reveal something I definitly don't want to get into.  I guess thats why I was avoiding getting them done.  But oh well...I've gotta do what I gotta do.  One day, doctor, and test at a time right?

Thanks for helping me through this everyone.  I hope you are all doing okay and not getting much snow.

(((hugs)))

rhea
Posted by Liz_-_UK (Liz_-_UK), 12 November 2002

That's the way sweetie! Just take it one little bit at a time.

And whatever the tests reveal, at least you will know what you are dealing with and you can start to find a treatment that will work.

Keep going hon! we're all here for you.

Liz
xxx
Posted by Ross (Ross), 12 November 2002

rhea, don't back down, don't give an inch!  You're luckier than you know to have a Dad that may stuff up with his parking but got you there and got you back.  Don't ever give up!

We Dads are a fallible lot but we keep on believing and we keep on trying, most times we fail but just once in a while we win and when we do it's better than Christmas for us.  Give the poor b*gger a hug for all of us, you'll never know how much it breaks his heart not to be able to fix your knees for you 'til you have kids of your own.  Seriously kid, there's not many Dads out there that wouldn't cut bits off themselves for their kids.

Be brave, stand your ground, don't back down, don't give an inch!  Believe in the unconditional love of your folks, it's your life but don't ever fool yourself that any time you hurt you hurt alone.  We're all with you too, yell if you hurt, curse if you must but never stop believing in the love of your family and friends.  

There will be other surgeons and other experts and eventually you'll meet the one with the answers, don't give up, persist, you can only win if you finish.  The race is not always to the swiftest but you have to believe nobody ever won that didn't finish!  It's about getting back up more times than you get knocked flat, they can knock you down kid but they can't stop you.  You have history, years of the stuff, you'd have chucked in the sponge long ago if you weren't a tough one.

God bless you and His healing be upon you.
Posted by violin1 (mj/usa), 12 November 2002

Rhea--
I couldn't agree more with Ross--my heart goes out to you, I am rooting for you all the way.  Take care.
Luv from you electronic friend

Mary Jane
Posted by Helen_uk (Helen uk), 12 November 2002

keep smiling my little friend I remember being your age and being diagnosed and the thing is to find out what it is how to deal and treat it then deal with it head on and find out the things that you can do and do them.
I travelled for a lond time before I met david and setteled down.
A funny story I once flew with both my staight leg braces on and I couldnt shut the toilet door so the air stewardess had to stand at the door with a blanket to sheild me from the other passengers and a dishy passenger bought me a drink for putting on a brave face and even carried my bags for me to customs.
The things you'll do to pull??
Any way you can and will have a great life this is just a blip and you have so much to look forward to 'honest'
Love H xxx
Posted by rhea (rhea), 12 November 2002

Liz, Ross, and MJ, you guys are really sweet.  Thanks for your encouragement.  It is such a comfort to have you guys to lean on when things go bad.  I know my Dad wishes he could get my knees fixed up.  He saw me looking at Canada's Wonderland as we drove by and said that as soon as my knees are fixed up he was going to take me there.  That's really touching for him to want to do that for me, but even if my knees got fixed up all of my other joints are still going on me.  But at this point thats okay.  My body may be failing but my brain is still good. Going to the waterfront with my parents and my little dog and just sitting watching the water is an enjoyable treat.  Right now Im enjoying what I have, and not letting myself miss the stuff I can't have.  I wouldn't be pleased with myself if I spent my whole life wanting things, and not enjoying the things I have.  

Here's to better days for everyone and here's to all of you special people, whom without I wouldn't have gotten this far.  

Lots of (((hugs))), love, and energizer batteries,

rhea

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