Uwho Julie!! | Arthritis Information

 

Hello Julie,

How are you today? Doing just a wee bit better I hope. We realized that you have not posted in a few days. Just wanted to know how you were. Did you go to the clinic you posted about to see if they could provide you with something to give you relief?

How is baby Austin? I bet he is doing more things now. I remember about this time last year I was pregnant and "nesting", and now mine will be a year old next month.

Hope we did not scare you off?! We did not mind all of your questions & concerns.

Hope all is well with you.
June

I think she told us she was going today; but it was like 4 hours from her home so she might have left over the weekend to get there.

Julie; you'll be in my thoughts and prayers. Please let us hear from you as soon as you return. We're anxious to hear how it goes.

 

Thanks so much for asking for me.  The whole thing was a total waste of time and I just don't know what to do anymore.  I travelled miles and miles and when I got there the guy said, you don't have RA there is no swelling - then he said, 1 percent of people with a positive CCP don't get RA - that I'll probably get it but they can't treat it until I do and that - this is the worst bit - I must just be hurting myself looking after the baby - yeah in my mtp's and my jaw!!! - and that I was to go swimming to get my strength up and squeeze a tennis ball!!   All that way for nothing.  What am I going to do?  I SO KNOW I've got this.  ps quick question.  When I wake up every morning I have pain and stiffness in my feet, achilles tendons, knees, right elbow, left shoulder, one knuckle on my left hand ring finger and MY LEFT JAW!! every day my left jaw is stiff - is this normal.  I am starting to feel like I'm mad - am I describing the right pain or am I way off mark?  I just do not know what to do anymore.  The doc said my muscles and grip strength were very weak.  I tried to explain that I had been practically starving myself since I noticed that the less I ate the less sore I am - I reckon that it works because your immune system gets weak when you are run down so I have deliberatly been running myself down so the pain isn't so bad - but he wouldn't listen - he said he would not diagnose RA without swelling.  Also I told him I had 2 different kinds of pain.  The really sore one that jumped around my body and was really painful for 2 days until it moved, and the other one with was achey with sharp pains and was worse when I woke up or stopped moving for a while.  He said this doesn't sound anything like RA - but it does to me.  This is the so called expert.  So I've had 1 guy say he doesn't think its RA but to go away and see what happens because there's a small chance it might be,  one guy say 100 percent it's not then change his mind and say it might be mild palindromic.  One guy say yest you have RA, here take these crap meds that don't work for it and now this guy say I don't have it - it's pain from picking a baby up. 

HELP!!!
Joonie - OH MY - me too.  My baby is a year old on 28th October aw - I was the same as you last year - it was lovely, when I look back on it.   Julie that sounds like crap to me. I just got confirmed today with a combination of the results from my lab work and a physical exam. I have NOT had any swelling as of yet. They can diagnose RA without that. They need to go ahead and put you on meds to slow the progression down before you end up having joint damage. I'm lucky enough to live close to Nashville where I am going to Vanderbilt for treatment. They are a world class medical center with doctors heavy into research and prevention. Wish you could fly over here!Well, if you don't have RA I'd like to know what you DO have, cuz you just described me perfectly.  Except add more painful joints.  I must be in a bad flare, as I feel like I did before getting dx and getting meds.  And all of my blood work jumped off the charts indicating RA.   That was never an issue.  I'm only on prednisone and some pain relievers (which are not relieving) right now, as still waiting for Humira.  Sorry Julie, didn't mean to go into my problems, but it is SO frustrating.  For you not getting a proper dx and me who has, but still feel awful.I totally understand the frustration - for everyone.  I just do not have a clue what to do now.  Will I just have to wait until my bones rot away?

Julie; I'm so disappointed to hear this. I thought these doctors were supposed to be experts in this field. Although I have swelling off and on; and did at first especially....I don't think it's required. In fact I know it's not.

AAAAAAAAAAAAAAHhhhhhhhhhhhhhhhh....I can only imagine how frustrated you are now. Are you going to go ahead and start the plaquinel? Remember, that's stuffs not going to work over night now...it might take months to get the full effects from that.

I'm worried to start just the plaquinel because I've read that its very rarley used alone these days.  I've also read that there is a window of oppertunity in early RA where aggressive treatment works at its maximum capacity and also that a positive anti ccp indicates more aggressive and erosive RA.  Plus the doc didn't even suggest an eye exam so I'm frightened to take this in case I should be on something else and I miss my chance.  I just do not know what to do and I'm frightened about this morning stiffness in my jaw everyday too.  I feel like banging my head off a wall just now. Bloody Hell, Julie I'm sorry you didn't have any joy with them, not sure what to suggest next Just keep on at your GP??

Deb xI wish, my GP is trying to refer my to the mental health people again because she thinks I'm imagining this.  She just wants me on Anti Depressants.  I feel like I've been arrested for something I didn't do and thrown into a foreign jail where I don't speak the language and no one believes me.  It's terrifying.  I know you guys believe me - maybe if the Doc's actually listened to the patients instead of each other they might understand this thing.  You know what, I am so hungry. I have been living on fruit, veg and fish for 3 weeks now - still have pain and stiffness but no screaming flare - I think my body is to weak to be ill!!   Julie..... I SO feel for you. All I can say is...keep searching for someone who will listen to you, take you seriously and TREAT you! Following the birth of my son, I was having trouble catching my breath, could only sleep sitting up, exhausted to the point of not being able to get out of bed...etc. My doctors all told me it was post-partum depression/anxiety. I saw at least 6 or 7 different doctos, including 2 ER visits. All said it was anxiety and/or depression. Finally, I collapsed one day and was rushed to the hospital. I was in congestive heart failure and HAD been all that time. No one ever listened. You truly have to FIGHT for your health. It is extremely difficult to do when you feel as poorly as you do. However, whatever strength you can muster, make phone calls. Find out who your insurance covers and call every doctor in your network if you have to. Keep fighting for yourself....you are worth it! Love and hugs, Juliah

Sorry to hear you still did not get any type of relief. I just hope that you will soon. Like everyone else said keep going to different docs, you might "strike it rich" and find one who is up on his RA info.

Take care of yourself,
June

Did the doctors feel your joints to see if they are inflamed? My doctor does this thing every visit where he goes thru all my joints starting at shoulder ending at the toes to see what's inflamed. He squishes and I say yes or no whether it hurts. When I go back the next visit he will tell me my  right wrist is not as swollen as the last time.. I think it's cool the way he does that.

Yeah; mine does that too Murph. The majority of the time he'll say "You've got some swelling here" or "Does this hurt....it's swollen more than last time"

Often I don't even notice the swelling....but I guess they just know more about what they are looking for.

Hi Julie,  I remember how upset I got when at 14 the doctors kept telling me I had growing pains - I kept wondering why nobody could tell me what was wrong and started to believe I was imagining it.  I saw my first RD completely by chance and I'm so glad I did because she diagnosed me straight away.  There are however, many incompetant doctors out there and it seems like you keep finding them. There are also other possible RA-related diagnoses aside from RA, which they may not be considering.  I would just push for more referrals, there may even be other doctors available for you to see under your current RD at the same clinic.  Like Juliah said, if you believe there is something wrong, you have to fight for what you need, your health is worth it.

Best wishes,

Moonie

I am seriously wondering if I am imagining this,  but I can't be because I've had pain in joints that I really didn't know existed until they hurt.
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