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Posted 4/27/2006 8:24 PM (GMT 0)
On top of fibro and osteo in my spine.. now the doc says he's 85% sure I have RA. Tests last year came back negative (blood) but he says they are not totally reliable on their own.

I began having knee pain, both knees exact same amount of pain, now they are swelling. Xrays are neg. for osteo there. So I am having an appt. set up with a rheumy. But he is pretty sure that is what it is.

What should I expect? I'm only 32 years old with four children. Can they stop the progression of this? How dangerous is it healtwise? I read somethings about affecting the heart and lungs.

I think I'm just freaked out totally right now. Guess its bad to post or look up answers right after doc appt.

Sarah

Posted 4/27/2006 9:35 PM (GMT 0)
yeah  Hey there Sarah - welcome to the Arthritis side of Healing Well... Sorry about the news you got today about RA... Hopefully you have caught your RA early on... and the earlier it gets diagnosed, the better off you'll be.  :-)

 

The different meds out there can slow the progression of RA, and hopefully stop it from doing too much damage. 

 

I have PA and I am on Enbrel.. I can honestly say that the Enbrel has helped me IMMENSELY... I could barely walk before I started it... I still can't run, but I can walk without any assistance and I don't even have a limp anymore... I still have bad days that make me want to curl up in bed and sleep the day away.. but those are few and far in between.... :-)

 

I am 32 also and I have 3 kids... I have refused to let this arthritis get the best of me and take away any time from my family... I'm just too stubborn for that!  nono

 

It is totally understandable your feelings right now... When I first got diagnosed I thought, "This can't be true, I'm only 31!  You're not supposed to get arthritis til you're in your 60s or 70s!"  But I have found out that arthritis is not age specific after all... Don't fret Sarah, it will be ok.  I know it probably doesn't seem like it now, but it will be.. I promise... :-)

 

If you ever need anything, come and post anytime... We are always here, and we'll help you through this... Best of luck to you!

 

Duck

Posted 4/27/2006 10:40 PM (GMT 0)
hey Sarah,

 

i think you'll be alright.  what's positive in your corner is that the doc is confident and seems like he doesn't want to waste time. :-)

Ducky pretty much said it all.

i wish my RA was treated MUCH earlier.  i just started aggressive treatment the past 2 years (i'm 25). before that they were fooling around with COX2s, NSAIDs...nothing was helping.

 

Enbrel i think helped a good deal.  i was on it for 1 1/2 years...but i needed more intervention since it was way out of control.

now on Humira every 4 days, and 3 other immunosuppressants. even though i'm at a point where i'm partially disabled (walking & mobility problems) and cannot work, i really feel optimistic that a remission will come.  since on much stronger meds, the RA seems to have plateud and has not been getting worse. 

 

unfortunatley the RA i have does effect my heart & lungs...but then again, since i was young when this started, i was pretty much ignored! sad

so there's nothing better than early diagnoses and early treatment.

 

every person is different.  people with RA are athletes (hey Craig!) and other folks continue to go on just as they were...but just need some shots every week!

 

are they going to run the RA panels again in the bloodwork?

 

a lot of patience & knowing your body is very important.

take good care.

erin

Posted 4/27/2006 11:07 PM (GMT 0)
I'm not too sure what the rheumy is going to do. The doc mentioned a bone scan or MRI to determine exactly what "damage" (the word he used) has been done so far on my knees. Also he mentioned that the rheumy would probably take a sample of the fluid in my knee to have analyzed.
He told me that it doesn't always show up in routine blood work, even if it's a rule out blood test, which is what was done to me. Rule out lupus and RA for dx of fibro. Maybe the rheumy will do a more extensive blood test.. if that's possible. I quit looking it up on the web.. kept getting more and more freaked out.
Due to panic attacks, I've had my lungs/heart tested from here to Saturn, and so far no effects have shown up there.
I'm curious about all these drugs I read about. Are the side effects bad for them? I know I need to ask the rheumy these questions, but with fibro I've learned to try to go into any appt. with any doc armed with some knowledge.
NSAIDs are not an option for me.. have reflux issues, and I'm allergic to aspirin, so finding an anti imflammatory might be a little hairy.
I think I'm over my freak out, OMG, hysterical, crying..etc episode. Thanks for the positive replies!!!! I have always loved this forum and love it even more now.
Blessings,
Sarah
Posted 4/28/2006 4:20 AM (GMT 0)
we love you right back! XOXOOXOXO
Posted 4/28/2006 11:54 AM (GMT 0)
Hey Sarah - how you doing today? What meds are you wondering about the side effects for? Hope you are doing ok... Rest easy - Duck
Posted 4/28/2006 3:08 PM (GMT 0)
Hey Duck.. I'm doing okay today. Slept in, fell asleep on the couch and now I'm thinking that was really, really dumb..lol. I think a couple fingers and a few toes may NOT hurt.
Pretty much I'm worried about the steroids and I came across some articles about RA talking about IV meds. THAT almost sent me into a tailspin. I'm not a needle/hospital person on a good day.. only time I've ever "okay" with it is when I'm in labor.. and who cares about anything at that point?lol.
I'm the ONE in my house. Four kids, active in sports/scouts. Dependant mother who doesn't drive and who has severe high b/p problems. My fiance works all the time, and he does what he can.. but I take care of just about everything. I have to "fit" in my pain pills around everyone elses needs, since I cant' drive while I take them.
So this is really going to be a difficult adjustment for everyone.
Believe it or not.. with this crap in my knees.. I'm going to tile a floor this weekend. First I will dope myself really, really well tho..lol.

OH.. I almost forgot my main question.. (really should drink enough coffee before I start posting)... How crippling can RA get? Especially in the knees? I just finished rebuilding my mothers basement into living space, and know I have twelve stairs to go up and down.. kitchen and bathroom are up there. Older kids bedrooms upstairs, younger ones downstairs. I have to trot up and down those stairs all day and night. Lately, I'm pullling myself up by the rail.. and coming down really easy b/c it feels like my knees are "wobbly" and dont' like my weight too much. I'm afraid one of my knees is going to "go out".. I know that can happen with osteo, but what about RA?
Okay.. that's my chapter of my novel for today.. I'm sure later I will think of more. And you will begin to roll your eyes when you see my name.. LOL
Best Wishes
Sarah
Posted 4/28/2006 5:32 PM (GMT 0)
hi Sarah, well the most important thing regarding disability with RA is prevention. to reduce the chances of RA getting disabling, early treatment with DMARDS and TNF meds are key. it really is like A MUST!
if you need to go on shots like Enbrel or Humira...don't worry, we'll throw a            yeah  shootin' up party  yeah for ya here on HealingWell! tongue seriously!! it's not bad at all. first time is always scary. i had given hundreds of shots to patients...but when it came to myself? geesh, even a pro got the jitters! but wow...what confidence you get from it! very empowering!

ok, back to topic. mantaining as much joint flexibility is crucial. the worse thing a person can do is NOTHING! and this is simple...just walking a little, rotating your ankles, range of motion exercises...every little bit helps.
there are many days where i cannot walk....but even standing for a few minutes, using your arms for exercise...anything as long as the blood is flowing.
basically in all attempts to prevent contractures (that's what you see in bedridden folks at nursing homes & hospitals).
RA is not a death sentence. yeah, it can get bad...and at acute times during bad flares...it hurts a lot, and you may be limited in things....but it takes dedication to keep yourself up.
and by the sounds of it...if you're remodeling rooms,,,YOU'RE DOIN' PRETTY GOOD GIRL! just know how much you can take without a 5 day recovery. LOL
erin  :-)
Posted 4/29/2006 2:04 PM (GMT 0)
Well, I finally got smart and went and bought a portable chair for my kids softball games. Those bleachers and I were having some difficulties..lol. I'm learning slowly, very slowly, about this mess. I sat for an hour, perfectly still in this chair last night ( I keep the official scorebook, so I'm zoned on what's going on)... and suddenly noticed WOW did I hurt. So I took my book and got up and stood a while and it hurt, but I felt better when I sat down. Sooooo NO more sitting in one position for long periods of time..lol.
The swelling keeps getting worse, and more painful. Last night on the drive home from game I was wimpering and it hurt just to press the gas pedal. Had the heat on high and was about to run my kid out of the car with it, but the heat felt good. I tried calling my doc yesterday to get him to call in some steroids to try to get the swelling down, but no help there. He wants the rheumatologist to script all the meds, who I dont' even have an appt. for yet.
I don't have a clue how to get past this type of pain. I have lortab for other dx's and I can take that and be more relaxed, but still feel the horrid pressure inside my knees. It's like someone took a big syringe and injected something into both my knees and it ain't leaking back out.
Any ideas on how to control this without medications until I can (finally) get into this rheumatologist? Short of chopping my legs off above the knee?
Thanks!!
Sarah
Posted 4/29/2006 4:59 PM (GMT 0)
Hey Sarah - How are things going? Have you tried using a heating pad or ice? Erin posted this on another thread:

If some joint is throbbing...I swear by ice.
If some joint is painful and HOT...I use ice also.
If it's swollen...ICE.
If some joint is stiff, painful, and hard to move...I use heat.
If I feel like muscles are invloved too...Heat.

The loratab will help you too... If it gets too bad, you can go to the ER and they will give you steriods to help with the inflammation... Good luck, and let us know how you are doing - Duck
Posted 5/1/2006 12:18 AM (GMT 0)
Well, today my thighs were swollen too, and I had red splotches show up on the right side of my leg, around my knee. I went to the ER and they did give me script for the steroids, but cautioned me to use them as last resort. Said they could maybe mess up any testing the rheumy does when I get there. So I tried taking a motrin with the lortab and it seemed to help a little. ( first time I've ever had a doc say load up on the lortab).
The swelling did decrease just a tad with the motrin, and the red splotches disappeared. But I almost fell down the stairs. Felt fine, went up to get some tea and my kids antibiotcs, came down teh stairs and made it halfway and felt this incredible pain shoot through one knee, and it started to buckle. I threw myself back a little and stabilized on the other leg, and came the rest of the way down with my back against the wall, sideways.
Is it normal with RA for a knee to just "go"? Obviously, I'll be much more careful on the stairs, but I dont' want to hurt my daughter by fallign when I'm holding her. This all just seems surreal to me.. one minute I have fibro, next my knees hurt, next they are swelling, now I'm losing stability. GRRRRRRRR.
Sarah
Posted 5/1/2006 1:05 PM (GMT 0)

hey sarah,

true, the prednisone can mess up test results, bummer.  it would have stopped a lot of this pain & swelling.  but if the appt is in a few weeks, i think you could take a few steroids just to get out of the flare.

i've noticed when sometimes i take the first step down a flight a steps, my knee kinda locks and WHOA! pain! and after that...impossible to use it for the rest of the day. don't really know what the cause of that is.  but i do find it harder to go down stairs than it is upstairs & harder to go downhill than uphill.  anatomicall, i would think that the knee joint isn't stabilized...if the hamstrings were stronger the knee would less likely lock & pop going down stairs; that's my only theory. LOL.

who knows! we all figure each other out as we go.

i am glad you went to the ER.  can you take a few steroid pills?  or is your bloodwork too soon in coming?

take care

erin 

Posted 5/2/2006 5:35 PM (GMT 0)
Sigh. I STILL have not gotten a phone call for my rheumy appt. Guess I'm going to have to call and throw a minor hissy fit. I still haven't tried the steroids, as the swellign seems to have stabilized a bit.. not gone, but not getting worse anymore. Still hurts tho. I take my lortab when I can, and when I can't.. grit my teeth. Last night my daughters coach wanted me to do the scoreboard for the game, which requires a walk up twenty something metal stairs and I flat out told him no. Kindof shocked him, but I'm now too afraid of stairs to risk it.
I have a question.. can you get Ra in your ribs? Not sure if it's a joint there or not. If you can, then my doc dropped the ball a year ago. I've been diagnosed with costochondritis and have had pain and some swelling around my breastbone and right where the cartiledge is on the left side. Sometimes it get so bad I have to rip off my bra to breathe. I'm constantly finding myself rubbing that area, and it feels like my ribs shift and crackle a lot.
Just curious b/c my doc is not the most wonderful one out there, and he very well could've missed it. And if he did, I've been presenting symptoms for over a year, not just a few weeks. Does that make a difference?
Thanks for listening to all my five hundred questions!!!
Sarah
Posted 5/2/2006 10:49 PM (GMT 0)
hey sarah,

YES! definitley, absolutely make sure the new rheummy knows about your HX and DX of costochondritis. 

i've seen 2 rheummy's (one who is TOP SHELF) & one pulmonologist and the 3 of them said that there is a strong correlation between RA and costo.  but...a person can have costo for other reasons as well.

if ya break it down:  ritis=inflammation and costal=the intercostal spaces of the ribs. and ya do have cartiladge in there too.  so in theory, it fits into an inflammatory process. (in my book it does! hey, i should write a book. hmmmm?)

i suffer from costo as do many here @ HW too.

 

but undifferentiated chest,rib pain needs further investigation.

i do not think costo is a criteria of RA diagnoses.

 

also, w/ RA there can be inflammation of the pleura and can cause very bad pain like costo.

 

so you'll need a series of chest xrays most likely too.

the fun just keeps adding up eh? LOL. :-)

 

so as of right now, there is not a definitive DX of RA yet right?  the rheummy is going to figure it out?

 

well my friend, just a glimmer of hope to you from me...

     whatever may be will be.

      you will get through this.

         it will be hard.

   sometimes harder than others.

          and someday soon

              just like me

                    ....you'll smile at a flight of steps

                                     ....and do a ROCKY all the way up them!

ps...a very slow ROCKY that is. tongue LOL. erin

Posted 5/2/2006 10:54 PM (GMT 0)
Erin.. write the book.. i would buy it!!! No, no sure dx until rheumy, but my doc is saying 85% sure and is turning the whole ball of wax over to rheumy. Which I guess is the best thing to do in this situation.
I have had chest xrays done, one not too long ago for cough and poss. strep throat and no one said anything was "positive"... so guess I'm good.
I just realized there is one humerous thing in all this... I used to joke that everytime I go in a doc office I come with an "O"... fibro, osteo, costo... at least RA doesn't end in "O"..lol.
Hanging on to my sense of humor by the skin of my teeth!!
Sarah
Posted 5/2/2006 11:15 PM (GMT 0)
let's then make a band! "RAO SPEEDWAGON"
LOL.
humor is what saves!
Posted 5/2/2006 11:28 PM (GMT 0)
LOL LOL LOL
Posted 5/3/2006 4:44 PM (GMT 0)
Grrrrrrr.... tommorrow will be a week since the doc said he'd call with a rheumy appt. Called yesterday and his nurse said "I'm working on it right now". Well.. obviously didn't work very fast, since I haven't heard a word..lol.
Now my fiance is starting in on me. He said last night that my knees didn't look too swollen, and if I'd get off my butt and do stuff they wouldn't hurt. (No, I didn't cosh him in the head, but it was a very close thing) He must think magic elves get dinner on the table and take care of the kids..hmmm? I'm finally getting it through my head to get off my freaking knees when the sharp pains hit and now he thinks I'm lazy. He's hanging on by a thread right now.. a thin one.. that is starting to fray in the middle. And he's not a small man, so that thread may snap pretty quick..lol.
I took a loooong hot soak last night, and felt sooo much better. (Probably why my knees didn't look so swollen, duh). Since my pain was less, I was working my knees and could feel a clicking noise when I bent them. Didn't hurt too much but I was loaded on lortab too. I'm assuming that "normal" knees don't click when you bend them?
I'm normally not a "spanking" mom, but last night my six year old was throwing a fit refusing to go to bed. He's a big boy for six, and instead of snatching him up dragging him there, I grabbed the nearest object.. a hairbrush.. and swatted him on the toushie each step towards his bed. Halfway there he threw up his hands.. "alright, I'm going, I'm going". Learning not to do really dumb things is sometimes a hilarious process..lol.
I also bought laundry bags.. and told my family to put their laundry in it and toss it down the stairs. They can take it back up. Oh the affront of my teen.. what? You want me to get MY laundry? But you always put it in my room! I told her (with a big grin) that life is no longer the same in my house, and she's going to learn what that big thing with the burners and dials that makes food is too. Along with that strange contraption that you have to pull a million times to start and makes the grass get shorter.
Still holding on to that sense of humor. Better this morning.
Sarah
Posted 5/3/2006 5:13 PM (GMT 0)

dear sarah,

i really think the are working on it.  i remember when i had to get TWO rheummies to correspond over the phone, one in NJ the other in Manhattan...and it felt like FOREVER.  in my head i was like, "yeah right, the office receptionist isn't relaying  my messages and they're never going to go over my case....i'm gonna get to NY and the rheummy is going to say WELL I NEVER TALKED WITH YOUR Dr IN NJ!"

but i was wrong...it just took A LOT of time.  and getting my appt set up & the ball rolling...that took a while too. 

i don't think they're forgetting about you.  but do at least once a week give a call just to see what progress is being made.

you'll get there!  hang on!

a normal knee can click or pop sure!  many athletes have a pop or snappy knee.  kinda like when you crack your knuckles.  just the fluid moving around.  many times it is normal.

but what the doc feels around the knee and the amount of fluid is what's important.  when the rheummy asks you to bend and flex your knees, he'll be able to asses the fluid in it & feel with his hands any friction coming from it.

your fiance isn't being hard on you is he? perhaps he's just scared?

you're totally right on with your teen!  they should do there own laundry or at least help.  the less that you have to stress your knee over the limit that is therepeutic the better!

hang in there girl!   

Posted 5/3/2006 10:25 PM (GMT 0)
Ditto what Erin said! She is reading my mind tonight! :) My hubby used to say stuff like that to me, in the very beginning... but once he started going to my appointments and saw the bone scans and x-rays, he sings a different tune... Now when I tell him, "I hurt" he leaves me alone... 'cause that's what I want. I don't want to be touched coddled or anything... just let me be... He gets it now... and I don't go to an appointment without him, BY HIS CHOICE. Guess it makes it more "real" for him... Who knows... Right on with your teen... my daughter is 9, and lord have mercy, getting her to clean her room is like pulling teeth from a crocodile... :) I used to hear... "WHAT? I have to do WHAT?... But you clean Brandon's room, why can't you clean mine? Why do I have to put my clothes away, why can't you do it?" Now, mind you, she has only said these things once, 'cause she learned the hard way, I'm not a cool mommy... If I ever back talked my mom, I can't even imagine what she would have done... I am not as strict with my children as she was with me, but I don't take any sass from my kids... They darn sure know respect.. and now slowly they are learning responsibility... it's painful for them, but they'll be ok... :)
Posted 5/3/2006 10:47 PM (GMT 0)

tongue  i m ust have been a weirdo kid.  every weekend i would tear apart my bedroom, clean the floors, re-do the clothes drawers, rearrange the furniture, and even color arrange my clothes! LOL.  can we say OCD? LOL

but i guess i made up for it when i was a teenager. i never came home! oh my poor mother!  curfew 10?...walk in at 1am.  man, i feel bad that i did that now that i'm older...i think  i would go nuts if my kid didn't come home on time.

 

goodluck moms! :-)

hey, i turned out pretty darn good though.

Posted 5/3/2006 11:16 PM (GMT 0)
I am not going into my teen years..lol. Right now I'm going to hobble up and finish dinner. My right knee is starting to slip sideways when I walk.. got a wobble there. I'm assuming that's probably not a good thing?
Sarah
Posted 5/4/2006 12:53 AM (GMT 0)
Oh I hear ya... if my daughter even does 1/2 the things I did when I was a teen, I'm gonna be TROUBLE big time... :) But what she don't know, won't hurt her! :)

Oh Sarah, you need to get in to see a doc... the stairs are not your friend right now... do you have a brace of any sort for your knee?
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