Hello!

Hi, I am new to the site as of today.  I am newly diagnosed with RA, although I have to wait until March for my first appointment with a rheumatologist.  I am 42, with two kids and a husband. I first had a problem with my knee the beginning of October, 2008.  Now many of my joints are involved, except my back and elbows.  The pain and discomfort are really depressing, as well as the first days I had trouble getting out of bed, or off of the toilet.  I am somewhat shocked. I guess I should feel grateful that I am alive, but this really sucks!  Oh, did I mention how mad I am?!!  I feel like my life is being stolen.

What can I expect next?  And does anyone know if a raised ESR is a definite yes for RA?

Hi there! Welcome to creakyjoints!

I'm sorry about your diagnosis- it is so hard in the beginning before you get your body calmed back down again! I was miserable for quite a while, but keep going- now I feel pretty much normal, it is possible! It just takes some work and a good doctor.

I think feeling mad (and depressed) is completely normal- you should be! it is absolutely not fair that this has happened to you! I think that you have to really let yourself feel those emotions for a while, because this is a big thing happening, and you have to acknowledge it. And after a while, you'll be able to accept it, and then, you'll get less mad and less upset and it will become just a thing you have to be practical about and accommodate, not a thing you have to rage against.

For me, I was pretty sick for a while, I have really bad RA and it took a long time to get the right combo of meds. But now my labs are pretty much normal, I feel pretty normal most of the time (I'm on a lot of meds to get that to happen though!), and RA is something I have to take into consideration every day of my life, but I've incorporated it into my routines, and its ok. You will be ok. It just might take a little time!

Hi creakymom!

I'm 49 and have had RA since age 5. I don't rememberl life without it, but the good news is, I still had a life. College, marriage, two kids, etc.   I really feel for those who have been rolling along living a normal life then get his with this non-fatal but life-changing disease. [[hug]]

What comes next? That's hard to pin down. RA, like any autoimmune disease, is unique to each person who has it. For example, my disease moved slowly and I was almost 40 before I needed my first joint surgery. For others, the disease is more aggressive and they face surgeries much sooner. There's no one-size-fits-all for treatments or disease progression. Once you find the right combo of meds for you and get on top of the acute symptoms, then you'll have a better idea what's ahead.

You may never need joint replacement. But if you do, the good news is the technology is advanced and getting better all the time! I've gotten tremendous pain relief from my replaced joints and I'd do it again in a heartbeat.

What's ahead? A good life. A life different from what you might have planned, but still a good life. You're going to be okay! [[hug]]

Previously wrote:

Hi, I was diagnosed with RA at the end of December after meeting with a Rheumatologist twice.  He kept telling me that I didn't have RA or Lupus and I was thrilled, as you can imagine.  I still kept working to get a handle on what was happening, so I got a x-ray of my hand, he saw nothing.  I was about to go to a hand specialist and my partner encouraged me to push for an MRI.  Well, that did the trick, it showed the degeneration and inflammation.  I am 37 and have a 3 year old daughter.  I go between being totally sad and crying - to super proactive, eliminating inflammation foods, reading a ton and feeling like I can handle this - to being totally pissed off.  It is crazy the swings of emotion I have. I can get crying over the drink I am trying to work into my routine to being annoyed at anyone for talking about their aches and pains.   I feel totally overwhelmed by the idea of going on medicaiton, yet terrified not to.  I am waiting to hear from my new doctor, hopefully tomorrow to discuss my recent blood work to hear her recommendation of medication.  I think the only joints I have involved is my hand and my foot and I am RF negative, so I keep hoping that means something good.  Anyway, I am sorry you are so uncomfortable.  I keep hoping for a good night sleep and then somehow everything is better.  I can't give you any good ideas of what is ahead - as it is all the same road for me - just trying to stay positive for the long road ahead.

[[hugs for Rebecca]]

Try not to be down on yourself for needing medication. No one likes the idea of "needing" help, but remember it's not just for you, it's so you can be the Mom you want to be for your daughter. If she came down with a disease, you'd wouldn't hesitate to give her whatever meds and therapies she needed, and help her deal with whatever came next, right? Give yourself the same care. You deserve it!

FWIW, bloodwork isn't always the definitive last word on whether you have RA or not. Many of us here are RF negative and are being treated for RA anyway because the collection of symptoms we have match the RA profile. I've been in a full flare and have nothing show in my blood tests! 

Being angry is normal. I've been there, and even after over 40 years I admit sometimes I still go there. But not for long. Channel that energy into doing something constructive, which it sounds like you're doing with the research and self-care through diet, exercise, etc. Controlling the things you CAN control goes a long way toward feeling optimistic about the future.

No matter what, that little girl is going to be the light that guides you through it. Hang in there!

Previously Carolan Ivey wrote:

Thanks Carolyn.   I really appreciate your words, more than you know.  I feel like I am waiting on pins and needles waiting to hear from my doctor.  I jsut e-mailed her and we are due to talk tonight at 6:30.  It is an incredible roller coaster and so truly confusing.  You are right, I would do anything to care for my daughter and sometimes worry that I have given her a bad set of genes - little did I know.  I went swimming this morning and have eaten really well today and have my "feet up" while my daughter rests... that is what I can do for today.  Thank you for your kind words.  It can feel totally overwhelming.

Creakymom and Rebecca,

I am like Carolan, I have had RA for 33 years and it was slow progressing for me but has sped up pretty quick in the last two years. 

You will have the ups and downs with this disease, you CAN live a normal life. When I was 18 years old and was told I had adult RA and not JRA, I was suppose to dance or do any sports etc.  What did I do as the rebelious child that I was (still am) I became a ballroom dancer, yes the flares would come, but I would either push through them or rest enough to be able to get back on that dance floor.  When we would dance for a show I was someone else, I wasn't the kid with the disabiling disease. I refused to be, then there were days when my brother would have to carry me to the bathroom (how embarrassing is that). 

Kate and Carolan, are so right you will find the right regiment of medications that will work for you and your body.  Read everything you can, just do not allow it to CONTROL you remember written words are just that written words, you have to listen to what your BODY is telling you.  Not everyone has the same symptoms, progress with the disease the same, some of us have RF Negative and have the disease there are others that I know that are RF Positive and have not one sypmtom even with MRI's.  There is no real explanation for it.

I found that if I read about RA, I also read the positive stories from real people that live with this disease and you can get those from the webcasts right here on Creakyjoints.org take the time to listen to them they will help with the anxiety and the stress you are facing.  Or reach out to Dr. Laurie and us here on the board during those vunerable times. 

This is one of the most supportive community boards you will find out there, the folks here like Kate, Katie, Beverly, Carolan and many others are there for you when you need someone to listen and/or share information with. We are not medical professionals only Dr. Laurie is, but we are just like you we have the diseases and we live and cope with them everyday. 

We all share these coping and pain management techniques with each other, from parrifan wax treatments, to Light Box's, iced bottle water, hot showers, how to suck on hard candy while taking an injection.  Many many tips and hints... Just let us know how they work, if you need any tips or if you have any to share that work for you!!! 

Welcome to the worlds best support group that I know of!!!!

Tess, one of your many creaky friends

You will be ok.

Thank you, that will be my mantra while I wait (I hate waiting).  I went on a 5-day course of steroids, and the pain is much reduced for now.

You will be ok.

Thank you, that will be my mantra while I wait (I hate waiting).  I so needed to hear that!  

Thank you so much!  I am doing better this week, seeing that all of you are doing so well.

hey!! i love reading these kind of msges, because it really makes u feel like there are people out there who care, even though they dont know u and could just be self-absorbed...

i found that what helped me the most when i first became ill was to find ways of giving to others in worse situations! when diagnosed with a life-long condition, it's so easy to fall into the trap of feeling sorry for yourself, depression, etc however, after 2 months of being ill i decided that im going to win this condition and it's not going to win me! i forced myself out of bed, drew a picture on my face (aka makeup) and went back to work as a full time teacher!!!!! it did wonders... of course i have days when i literally cant pick my feet off the ground, when i have so many rashes, ilook like i fell in a thorn bush, but at least i know that im taking what life has given me and make the most of it!

i volunteer for a kids cancer organisation and seeing the childrne and families suffering so much yet have such joie de vivre, gives me the strength to take my condition and be positive about it!!!

how many ppl out there are healthy and yet unhappy??? its a mindset, and based on teh attitudes on so many ppl on this website, it is possible to be sick, yet be positive, outgoing and lhave a meaningful life...

creakymom, u can do it.... as the silly expression goes, When life throws lemons at u, make lemonade.......

Rachel,

You are so right, yes each of us live everyday in pain with a life long disease that could be disabiling very quickly if we do not stay a head of the game.

I have always had the attitude "This is my body and I will control it, the diseaes will not!" yes sometimes I have to give in to it and rest. Though when you look at some others there is always someone else out there worse off than I am. 

The children with cancer, the troops fighting for us, those that can not walk due to other disabilities, and I could go on.  So I count my blessings because this disease has helped me understand I have learned from it to share with others that have yet to deal with it in their own terms.

The only way to kick this is to be positive, yes we will all have our weaknesses from time to time, but stay on it. Keep in touch with others that share the same experiences learn and lean on and from each other.

bless you all and hope you all have a pain free day!

Tess