Monday, December 08, 2008 Annika asks

Q: reality check on what it's like to live with RA

Hey,

I am a 27 year old female and for a few months now I have had some mild joint pain and tested positive for inflammatory factors. I am waiting to see a specialist. Although the pain is very mild right now, worrying about the future is consuming me.

I feel like the messages I get about RA on the internet are conflicting - on the one hand I read about great medication and how people with RA can lead "relatively normal active lives" but then I read on the message boards stories about how horribly difficult it is to live with RA. What's the story? Or is it just a different story for everyone? Does the severe pain that everyone talks about come in flares or is it always around? I realize that I may be in for some tough times but I would just like to know that even with RA my life is not completely over, that with medication I could live a somewhat normal life.

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Answers (7)

Sara Nash, Health Guide

12/ 8/08 7:28pm

Hi Annika,

The short answer is yes, if you do have RA, don't lose hope and think your life as you know it is totally over because it isn't.

The longer answer, and one of the reasons why there is conflicting information everywhere you look is because it is a difficult disease and is different for everyone, and fluctuates for most of us at times.

I am 30 and was diagnosed a little year ago when I turned 29. I felt nothing but utter gloom and doom after I was diagnosed. All the books I found and a lot of what I found on the web (I sadly didn't discover this site until much later) were filled with the words disability, degenerative, progressive, etc. and it seemed impossible to feel anything but despair, fear and, well, pain. I thought my life as I knew was over-I'd have to toss out my heels, quit drinking, and wouldn't be able to do my job or anything else I loved. I"m happy to report that that has not been the case.

I don't want to sugar coat anything-living and managing RA can be very difficult, and as I am learning, has its up and downs. It will change things, but not everything. It's still possible to be active and do the things that you love-you just have to be flexible in how/when you do them and how you prepare. There are a lot of crazy meds out there that have really revolutionized the treatment of RA, and many many people are able to find a combination of medicines and other treatments (yoga, diet, acupuncture, etc) that help them get their RA under control, including me.

Most of what I write for this site has to do with exactly what you talk about-figuring out how to have RA on my own terms as much possible as a young, single, active woman.

Good luck with seeing your specialist-this is a naturally scary time, but this is a great community here. Please keep us (me) posted and feel free to write with other questions or thoughts as you go through this.

Take care,

Sara

Carol

12/ 9/08 2:15pm

I think what you see on message boards are not a true example of RA on a whole. The majority of people with RA that are doing good are not sitting on a message board posting. They are going on living there life. Right now I am doing fine on my medication. I feel pretty close to normal after 8 weeks on medication. I have two daughters 26 and 29 that we are waiting for the test results. I don't want then to have RA but I think they do. I also don't think their life is over as a result.

Alessandra

12/11/08 10:34am

I was declared with RA at your age, And had a feeling of desperation. Now I am 42 and doing very well I was on Enbrel for 2 years and had to stop awhile because 2 of my kids had an infection ,so I was at risk. This happened october 07. I haven't started my treatment again and I am in remission for the moment and hopping it will last. Having a positive thought on RA will help you so much to live with the disease. I know that I stiil have it, just not having flares. One thing I should say Having massage therapy works great to not get flares.

terylynn

12/11/08 1:11pm

I have severe RA mostly in my feet and hands. I could hardly walk or stand for short periods of time but I'm taking Remicade treatments now every 6 wks and that has been so life changing! I'm still in pain but it's bearable. You're pretty young to get it but I've heard people as young as 5 or 7 yrs old can get it. Mine started right after I turned 50 and it absolutely "curled" my index finger which is stuck that way permanently! If I had gotten to a rheumetologist earlier, that could've been prevented.

My advise is never take it for granted .... get to your doctor as soon as possible and take care of it.

Best of luck to you!!!

Terrylynn

Vickie

12/11/08 1:38pm

Hi Annika, I am 51 and was dxed Sept 07. I cried for days. But then I pulled myself together and decided I wasn't going to let it beat me. If this is what life had given me...ok, the battle was on. Arm yourself with info, experiences of others, and a good medicial staff. There are many meds out there, the trick is the right combo for each indiviual. Sadly to say, it is usually through trial and error the right combo comes together. But, nonetheless there is generally one that fits. In my case, it took awhile for me to come to grips I have RA. However, once I did, that is when my search for info began. Yes, I have some bad days, some ok days, and some great days. It was VERY important for me to learn to pace myself. Especially on the great days, I have to be careful so as not to overdo...even though I feel I can. Each day I learn another weapon to fight RA. And honey, I use it. I have a pretty impressive arsenal. Yes, my life has changed, a total turnaround of my plans. Is it all bad? Oh no!!! The fact is I have gotten much, much closer to my loved ones, I appreciate things I used to take for granted. And when I laugh, I really let loose. Annika, it sounds as if you caught your RA early. That already gives you a leg up. Believe, dear, you will win. Lots of hugs and well wishes.

susan

12/11/08 2:03pm

Trust me! YOUR LIFE IS FAR FROM OVER! I have been living with JRA (juvinille arthritis)since the young age of 16 months old! Even though my parents were told that I would probably live my life in a wheel chair, and that I would most likley never be able to have children (do to meds taken) well lets just say this, THEY WERE VERY WRONG! I not only have NEVER been in a wheelchair, but I have a beautiful 18 year old daughter who is now in college, and she is perfectly healthy! I do take my 1st statement back about your life being far from over! It all depends on you and your attitude toward life,and if you want it to be over! Yes I hurt and sometimes it can be almost unbearable, but with the positive attitude I have and with my meds it is livable! I look much younger than most of my peers, and I am more full of life than most of them! So PLEASE whatever you do keep a POSITIVE attidue and you should do just fine!

sandra

12/13/08 10:18pm

RA is just what you make it. Meaning mind over matter ...keeping a positave attitude is the key. I was didinosed when I was about 23 years old. I struck kike lightning. I am now 54 years old But I keep a positive attitude and am doing well. take Embrel one a week...it has been a miracle drug. Yes I have had lots of surgeriesn my hands and feet and even my neck, ai have four vertabrays fused and an iron rod, with limited neck movement. I still keep four of my grandchildren 10, 8, 6, and 4.I drive everywhere I want to go. I hope this does not sound horrid, it is not It is life.. I have had it so long it is second nature to me.I ma really glad you are seeing a specialist..I wated too long for that.Keep looking up, and things will work out ok. Sandra

Q: reality check on what it's like to live with RA

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