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Question about joint deformity

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Posted 5/26/2006 4:45 PM (GMT 0)
 

I have a question regarding why my knees now look deformed.  The front of my knees look fairly normal just knobby, but the back of my knees are like that of someone 4 times my size.  The knees are larger than my thighs and the back of my knees are swollen and the lumps and indentations are exaggerated.  I look like I have elephant knees.  Is this normal for a rheumatic disease?  Is there any way to get my knees to look normal again?  I'm a slender person, so there isn't much I can do to hide it.  I really don't want to wear pants all summer if I don't have to, but I am very embarrased by the swelling and rashes.  I appreciate anyone's help. - Kris

Posted 5/26/2006 6:17 PM (GMT 0)
Dear Kris,

Well I can absolutely see why you would feel the way you do about your knees.  Let them not overwhelm you with insecurity or distorted body image.  Why?  Because however "we" see ourselves...to other people it is only half as bad! :-) It effects us more because it is our own body.  Last summer when my knees were like you described, LARGER THAN MY THIGHS, I thought people would gawk & stair...but I was surprised that they were more "concerned & interested" that FREAKED OUT! lol. tongue

 

OK, I might not remember correctly...but what rheumatic disease do you suffer?   Was it RA?

 

From what I understand, the soft tissue behind your knee is severely swollen?  This would be behind the patella? (Just want to make sure I know what I'm looking at!) :-)  

If the soft tissue is involved only, this sounds like marked edema stemming from something. 

 

In rheumatic diseases a knee would look like this from: bone overgrowth, collagen overgrowth, long term damage from RA/OA, an infection of some sort like osteomyletis, or as simple as an acute flare resulting in tremendous fluid accumulation.

 

When did this occur?

Can you describe the pain if any?

Also, take your temperature to see if you have a fever.

 

Imobilizing the knees by wrapping them, elevation, and some ice application can reduce some swelling.

If this is acute...the knees should return to normal appearance once the edema goes down. :-)

If this is something that has been developing over time & is actual joint deformity, than an orthopeadic surgeon consult is needed along with a rheumatologist.

 

What is your history with all of this that is going on?

 

Take care & please write back soon.  I would like to help you more...but I need a wee bit more information.  :-)  Sincerely, Erin 

 

 

Posted 5/26/2006 8:03 PM (GMT 0)

Erin:

Originally the rheumatologist said I had Lupus CNS, but now that I've had severe joint pain and swelling along with scleroderma symptoms and muscle inflammation, the doctor wants to reserve his opinion for now.  I am on 1200 mg of Ibruprofen and will probably be switched to Celebrex in a week or two.  Aside from my hip, the pain and has ceased.  I guess the whole back of both knees are swollen (the center knob and both sides w/indentation).  I don't understand why the front isn't swollen.  The left knee still pops out of joint now and again but is much better.  Both knees look about the same in swelling.  All I know for certain is I have a connective tissue and rheumatic disease.  The doctor said it's just like RA but I don't have a high SED rate and a negative Rh factor.  Although the medication helps a lot, I still have a lot of stiffness in most of my joints.

You are probably right, I'm kind of picky about how my body looks.  Kind of sad too, because a lot of negative appearance changes have occured over the last year.  Before it was just internal.  I lost all my teeth last year because of "lack of oxygen" and most people didn't even notice.  I don't want to get to "freaky" looking though.  Hopefully, the swelling won't be long term, but it has been over six months of progression though.  10 months ago I started with skin changes (tight/thick/shiny/scaly skin, rashes and swollen tendons and ligaments) and the joint problems.  The skin is starting to lossen up some but the joints are progressing.  The Lupus part just comes and goes at will - attacks an organ/system, disappears, then attacks somewhere's else.  The length of stay is anyone's guess.  I have had symptoms for over 10 years now.  I guess we will see what happens.  Thank you for your reply - Kris

Posted 5/27/2006 12:35 AM (GMT 0)

Hi Kris,  I'm sure you know this already, but it is possible to have RA without a positive RF, and it's possible to have a positive RF, but not have RA.  Both ANA and RF are not specific to RA or SLE, but can be found in both.  It's possible that you have both RA and SLE.  From what I understand, swelling does not  normally accompany Lupus arthritis, so I would think RA may very well be part of what you have.  From what you've described, perhaps it is MCTD?  In any case, I'm sure that Erin is right--how we see our bodies is probably 10x worse than how other people see us.  I am my own worst critic!  I hope you get the swelling under control soon.

Elcamino

Posted 5/27/2006 3:10 AM (GMT 0)
With all of the joint, ligament, tendon descriptions & the way your skin is...i would absolutely keep on top of all work ups and labs regarding scleroderma.
You know, rheumatics is so tricky & vague at times.
You've been going through this a very long time. Me too, over a decade.
Ah awful when an AI disease effects organs. the RA hit my heart & lungs and it's terrible to deal with.
I've a pretty bad limp most of the time...I attribute it to being a prefessional woman's rugby player! LOL.
Let's wave our FREAK FLAG HIGH!!!!!!!!!!
Take care Kris.
When is yor next doc appoitnment?
Posted 5/29/2006 1:11 AM (GMT 0)
Hey Kris, how are you feeling today?
Posted 5/30/2006 2:05 PM (GMT 0)

Hi Ducky, feeling alright today.  Just the usual stiff w/hip pain.  The weather here has helped some, but makes me more tired.  My rheumatic stuff doesn't like the cold and my Lupus doesn't like the heat.  Unfortunately, I love hot weather.  The days have been so beautiful here in New Jersey.  The only problem with living on the shore is that there aren't too many indoor things to do around here.  So, how have you been?  Saw your list, quite extensive.  Is there something major going on with you or is it a multitude of autoimmune diseases that are separate?  Guess it doesn't matter much, huh... it is what it is.  I wish there was a cure-all.  Would like to try the Prednisone but my immune system is shot.  Are the meds working for you?  I'm surprised with the constant UTI's that they gave your the Prednisone and steroids.  My UTI's are Staph and Strept infections that are drug resistant along with the other UTI infections.  I get them severe at least twice a year.  Are your's similar?  Also what is Graves disease of the eyes?  I had Hashimotos Disease in the past-so I'm the opposite there.  But, man, my eyes give me a hard time, vision constantly in and out.  Please write back when you can and thanks for your concern - Kris

Posted 6/1/2006 1:50 AM (GMT 0)
Hey Kris,

You may want ask your doctor to order an ultrasound on your knees. I had a similar thing with one knee (I have some combination of RA, SLE and Psoriatic Arthritis, the combination varies depending on the day of the week and which doctor I ask :)), it turned out to be something called a Baker's cyst, which is apparently relatively common in people with auto-immune disorders. It went away by itself with time.
Posted 6/1/2006 12:59 PM (GMT 0)
Thanks RandomDave. I was thinking of asking for an x-ray of the one knee and hip. I wasn't sure if I had to wait until something more drastic to happen like a fracture. Didn't think of a possible cyst, that is interesting. I like the going away part. I'll ask the doc next time I go in. Wish me luck!
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