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...
Sorry to hear about your trials with RA. Yes this disease sucks! I'm 46 but was diagnosed when I was around 43. When I first got it, I was fairly depressed about it but immediately became very proactive at finding a good Rheumatologist & hitting the disease aggressively as they all suggest. So far I've been very very lucky, I was on Methotrexate for about a year & 1/2 & now I'm presently in remission for about 6 months now. For how much longer?? Who knows, it could end tomorrow or could be fine for the rest of my life. I'll still have flare ups for certain but as for now I feel very blessed & lucky. My lower lumbar back is still giving me issues but I'm tackling that separately.
Take care! I hope you feel better soon!
Here's the trick and the best advice I can give:
1. Get the best rheumatologist
2. Find a drug treatment plan that works
3. Lose weight if you need to
4. Exercise - doesn't need to be strenuous - just move those joints
5. Accept that there will be some adaptation to the constraints of the disease
6. Set your boundaries with family and friends; educate them; don't feel you have to attend eery function or be all things to all people
7. Rest when you can
1. Be HOPEFUL! There are LOTS of treatments for RA some bring good relief for some of us, some even put us into remission (I have been in remission for 6 years on Orencia, minus 3-4 months I had to go off it).
2. There will likely be ups and downs un tis you and your doctor find a good med or cocktail of meds
3. Get plenty of SLEEP! For me, the only other factor other than medication is sleep. Weather doesn't effect me nor does diet. Sleep is restorative! You need it! I need 9-10 hours a night!
4. Be gentle and PATIENT with yourself try to avoid catastrophe thinking that you will ALWAYS be in the pain you are in now! I know cause I do the same thing. :-) I guess it's human nature, but it's just not true!
5. One thing that gets me through is thinking of all the diseases that are FAR WORSE than RA, and there are PLENTY! You sure wouldn't want to trade RA for ALS! MS is not exactly fun either. There are MANY, trust me! ALSO be grateful that you were diagnosed NOW in 2010, when there are good medications available. I have had RA for about 40 years and suffered greatly and have deformities because until recently there wasn't much they could do for it....so....
6. Take it one day at a time.
7. READ, read, read so that you become an expert on RA and can be inactive member of your health care TEAM!
8. And when you ned to bitch or moan...come here!!!
Sending gentle hugs.
It took a couple of years to get a diagnosis, and then 5 years being undertreated for severe RA. I had to go on disability and I just gave up on life. I was so depressed and miserable, and I could barely move. It was the worst time in my life, so I understand what you are going through.
I finally got on Kineret and mthx, and although I had some really bad hand and feet deformities, I felt so good I lost weight, started riding my bicycle and lifting weights and took flute lessons and did a Master of Divinity.
Then I had med failures, and lots of issues, but I took back my vow not to take prednisone and manage to ride out (literally) the med changes. I've been in a holding pattern the last 18 months, but even though I was completely bed ridden, I didn't get depressed like I did in the early years of this disease.
I still have that hope and trust that somehow things are going to get better. Whether they will or not doesn't matter - it's that I don't give up.
So don't give up! I think everyone in this forum is a testiment to the fact that you can feel better if you find the right meds. And sometimes that takes time. And welcome to the group!
I refuse prenisone except for a short treatment for asthmatic bronchitis. Enbrel shot on Monday, twice daily plaquenil with once daily mobic. After reading about the addictiveness of Tramadol, I limit my use to a max of three per week. Not three per day as prescribed. I've found out just how to schedule my meds. As I said, shot on Monday, Tramadol on Wed afternoon and Tramadol on Fri afternoon with a possible one on Sun. I also found that ginger capsules-1 capsule twice a day, has made a BIG difference. But! As with each med you try, EVERYTHING takes at least six stinkin weeks to kick in. Just watch the calender and reserve judgment until then. That is so hard! We are used to taking something for a headache, and voila! 20 mins later, the headache is gone. Doesn't work like that for RA. I also find some relief in wearing a copper bracelet. I do better without magnets, while hubby prefers magnets in his.
So I guess I want to offer my sympathy. RA sucks, true story, but it's your new normal and you have lots of company. Hang in there. Xoxo