Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Hi. This is my first time using a support group. I am 27 and was diagnosed with RA when I was 16. I went into remission when I was around 18 and then it came back with a vengeance about 4 years ago. This tie is very different from when I was first diagnosed. Everything seems worse and nothing seems to help as much as it did. I am just trying to figure out if other people my age or with this disease are having the same issues as me and if they have any advice. I have difficulties walking for too long or being in the same position for too long. Sleeping is really hard. Working out can be painful like to hold the weights or to do anything that has to do with my wrists. I try to explain to my friends and get there advice but they don't understand. I have just been feeling really upset about it lately and I am not sure what to do. Any suggestions?
Welcome! So glad you found this group. Great people here with lots of good advice. Ask any questions you want - most likely someone will post with similar situations and/or helpful advice regarding those situations.
I feel that educating yourself on RA is very important (and also educating those around you). Look at the recent posts - sleeping is always a problem. You are not alone.
I am assuming that you are under a rheumatologist's care and on medication. What would those meds be? Have you had any good results at all from them?
Feel free to post whenever you feel the need. Someone will answer you back.
Linda
My name is Stacey and I was also diagnosed with Rheumatoid Arthritis when I was 16. I'm now 22, about to be 23. I went into remission for about 2 years after being diagnosed and I know what you mean when you say that it came back with vengeance! My RA started to creep back up on me when I was about 19 and it hit me like a ton of bricks. I was constantly in pain, I was miserable and medicines were not working. What medicines are you currently on? For the past maybe 7 months or so I've been on prednisone daily to get my pain and swelling down which has drastically helped. I have been taking Actemra sub Q since January and I must say I've been feeling like I did back when I was a teenager. I still get aches and pains but nothing compared to what it used to be. Perhaps you can talk to your rheumatologist and figure out a new treatment! It's tough when your friends can't understand what you're going through. I've turned to this site before and I love having the support and advice from so many great people :)
I'm so sorry you have this mean disease that seems to evade the detection of everyone around us. I too noticed my first symptoms at a very early age, at 15, but I was not actually diagnosed until I was 20. My pregnancy seemed to bring on the worst of it in my knees. Could have been that the additional weight was a factor for me, but I've heard that female hormones might be the reason that women get RA three times more than men.
Everything you wrote is like a page out of my own long "diary" of experiences with RA. Absolutely everything, from the remissions to the severe flares to the frustration and feelings of isolation.
My advice is (after 45 years of living with RA):
1) Try as many different treatments as possible until you find one that is right for you (or a combination). We all have different experiences with the same treatments, so what works for me may not work for you and vice versa..
2) Realize that you cannot push your body into doing the things it used to do. Listen to your joints and do everything in moderation (even a little less than moderately).
3) This is the hardest one: explain to your friends that you have RA and that it limits what you can do now. Tell them how things change from day to day for you, and how, even though you may look the "OK" on the outside, you are dealing with significant challenges on the inside, both physically and emotionally.
We are all here for you, so come back as often as you want. The more you read what others say here, the less you will feel alone.
Sending love and hugs your way.
I am new here as well, but quite a bit older. I'm 47, however I developed RA at the tender age of 5 so I know a little bit about what you are going through as mine didn't go away till I was about 25 and it has now just returned in the last year or so. Several people have shared some links on here with me about describing the problem to family and friends. Here are the 2 main ones that helped me the most:
http://m.wikihow.com/Understand-Someone-With-Chronic-Pain
And
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
I'll be honest it's a lot different for me this time too. Before when I was a kid the pain was in my feet/legs and my hands/arms. Now it's mainly in my back and neck with occasional joints of the day bothering me. The worst this time is the fatigue. I never had that as a kid so this is a major difference. I hope this helps some.
depot
Again truly thank you all so much for responding this really has made my morning honestly!