rheumatoid arthritis?

L

LisaMarie

Cathlete
Does anyone here have rheumatoid arthritis and wish to share how you cope with it? I went to the rheumatologist today and all signs point to RA. I go in for a follow up to all my blood tests on Thursday.

I'm very concerned about how this will affect me for the rest of my life. It's already been such a struggle to give up Cathe workouts for the past 2 months (due to pain/swelling)--I need to be active!! I'm so afraid of eventually losing mobility. I'm only in my mid-twenties and still want to have a family (wedding in 6 weeks!) and have a healthy, active life.

Anyone have first-hand experience?

Thanks so much!!
Lisa
 
Hi Lisa!

I don't have RA, but I do have lupus, and they're in the same family. I have dealt with it for about 9 years now, but I've been working out for 13 years. Once you can understand the disorder, and get enough information to know what to look for, what to expect, and so on, then it's easier to deal with. Lupus doesn't stop me from doing ANYTHING that I want to do, you just have to learn your limitations. What helped me the most in the beginning was a local support group. I found out that no matter how bad you think your illness is, there are others who are so much worse. It's a whole new perspective. To cope with it...prioritize everything in your life. If something's not that important, than don't stress out (stress makes the condition worse). Do what you can do, and don't give up.

Please let me know if I can help. You're welcome to email me, too.

Sharon
[email protected] :)
 
Lisa, I'm an occupational therapist who has worked with RA clients. Learning how to protect your joints is so important with this diagnosis. The rehabilitation hospital where I work runs a one week program that is purely to provide education. This program is run by a team with classes done by the OT, physio, dietician, pharmacist, etc. Maybe look around to see if there is anything in your area??
((HUGS)) Kim
 
Lisa.... I have RA and have lived with it for eight years now. The most important thing you can do is make sure you have a rheumatologist who is going to be very aggressive with your treatment. The disease-modifying agents available today not only control symptoms but slows damage to your joints. This is key to "going the distance" in life and staying active. Don't despair, living with RA is very discouraging at times but once you are controlled, you will live a normal life. I work out with Cathe and run and am eight years into my disease. It is very important to stay active, immobility is your worse enemy. RA is not just a disease that affects your joints, the joint effusions are just a symptom of what is going on in your body. RA is a systemic disease, not a joint disease. It will make you anemic thus causing you to have no energy, etc. You must get it under control as soon as possible and hold on to that control. My treatment course over the last eight years has varied. I've been on about everything because nothing works forever with this disease, your body has a way of adapting and the medicine stops working. This happened to me one and a half years into Enbrel. I am now on Humira and will be on it for two years in August. So far it is still working. Interestingly enough, my doctor says if it ever stops working, we can try Enbrel again. He has had patients do the same time I did and go back to Enbrel and it worked again.

RA is a progressive disease but it can be controlled with medication. You can keep your mobility and health by keeping your weight under control and exercising.

This isn't a death sentence. You will be fine. I plan on living a long time and keeping active the whole way.

Good luck to you. You can PM me any time you want to.

Oh and I am the "meet Jane" on the CC website.

:)
 
Thank you for your replies---I really appreciate your candid thoughts. I'm fortunate enough that my closest clinic with a rheumatology department is Mayo Clinic, who's rheumatology dept. was rated #1 in 2004, #2 in 2006, although I'm not sure what it was based on.

Petty as it sounds, I'm most looking forward to hitting the weights again! I had high hopes of building some nice definition for my strapless wedding dress..hope to get my symptoms under control soon so that I can salvage what little time I have left to get those wedding arms! :)

I'll know more on Thursday. Thanks for your support!

lisa
 
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