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, I'm new to the group but having read some posts already feel a bit less alone, so thank you all.
Was symptomatic on and off with positive bloods for over 2 years, but no diagnosis until July this year when the pain was unbearable, I'd had to take a month off work as I was so exhausted and unable, and finally the swelling became very apparent in my hands and wrists.
Trying not to be angry or bitter re the delay and doc started Methotrexate, Hydroxychloroquine and prednisolone very quickly which is helping. Have just weaned off the Steroid 2 weeks ago and starting to get pain and swelling returning to wrists especially. Guess the dmard dose might need to be tweaked. Do worry that I'll wake one morning and the pain and disability will be unbearable again, but try not to dwell on it. Trying to build up the exercise since treatment started.
True what others say here re the way this disease changes your thoughts, makes you super aware all of a sudden of every minor change in your health. Is it a cold or will it become pneumonia?... Hopefully this gets easier and you become less twitchy about overall health over time? I'm so used to telling myself all my life that I'd be fine if I just ignore health problems! Seems those days are over! Think I'm still feeling the grief re my lost health.
I don't know anyone personally who has this disease, so again, thanks. I appreciate your posts.
Some important points I've learned (a crash course in living with RA):
1. Try to avoid daily doses of prednisone. There are too many long term effects you don't want and can't reverse.
2. Be patient. With yourself, with the meds. You have turned a corner in your life. You must move more carefully, rest often, ask for help. Each med change will require a minimum of six weeks to make an effect. Yes six stinkin weeks.
3. Be a germaphobe. Avoid sick kids/grandkids. Avoid everyone who is sick. Wash hands often. Put hand sanitizer in your car to use after shopping. Put sanitizer in purse to use after looking at restaurant menus. I use Listerine gold each night before bed. Get flu shot ideally before 9/15.
4. Plan activities so that you don't overdo. Yes, maybe in the past you could do all that shopping in one trip. Don't do it now. Read the spoon theory.
5. Be prepared to do a lot of explaining that RA is an immune disease. It's not OA. It feels like the flu.
6. Explore to see if you feel better with a careful diet. (Not me). See if exercise helps. (It does for me.)
7. Purchase helpful aides like hand warmers, compression gloves, jar openers, cane (don't be proud- be smart)
8. One of the hardest things is the fact that you will have NO idea how you will feel on any given day. There is no rhyme nor reason to this disease. I'm unusual in that I feel better on rainy days. I hate heat. But this disease is different for every person.
9. To file for SSDI (social security disability income) here in the US, you will need a disability lawyer to help you. And you can't be working. (Yeah, how to do this?!) IF you win- and it took me several years, they do pay back money. The problem is that the government is cracking down on the number of approvals. SSDI is not welfare, it is insurance you paid. It can be done.
So that's my lesson for you. I'm not trying to be a Debby Downer. I am Reggie Realist. No sense in sugar coating it. It is what it is and many people deal with it.
Good luck and go carefully, my friend.
I'm developing my germophobic tendencies quickly, have adopted an early bedtime habit and have the alcohol rub supplies sorted
My rheumatologist said in one of my office visits that when I was in his office I need to stop being stoic and stop thinking about others who are in worse shape. As he put it, "When you're in here, it's just you and me. So tell me what's going on." That's permission to tell him how I REALLY feel. He needs to know this so he can appropriate adjust the treatment.
I think it's good advice [particularly to those stoic male patients out there].
I'd like to chime in about "super awareness". I'm not sure if it's the "disease" that gives you some ability to be more aware I just believe it's human nature that once you get something like RA you start to pay more attention to what's going on with your body & as time goes on you almost forgot what it's like to be "normal" again. So you're constantly "gauging" yourself against last year, last week, last month etc. etc.. I dot it all the time. Just the other day I was telling another forum member, "I look at my hands constantly to see if there are any changes". I've had weird curved fingers since I was kid from jamming my fingers from playing basketball, football so for instance my right pinky finger looks like a soft "S" & has looked like that since I was 8 or 9 years old, I'm 46 now & I STILL look at that finger & get a tiny bit paranoid thinking, "Is this the beginning of deformity"? Well, of course it's not if I can remember it's always been there. But see what I mean? I'm constantly asking my wife or my friends, "Hey do my fingers looks swollen or red"?
Oh & my #1 ritual of all time is seeing how easy my wedding ring pulls off & on.
So yes you do become more aware...... or at least I did! LOL!
Stuff like that. It's crazy-making. But that's what I think about. Why? Because years ago I caught someone's cold and it developed into pneumonia. I do NOT want to go through that again. So if I offend people by asking them to sanitize their hands, too da*n bad.
See? This RA makes you you're own best advocate!
For me however, I know my immunity is suppressed, but family, friends and colleagues still think I'm behaving like a crazy woman and over reacting about this risk of infection thing!
They say stress can cause flare ups....I'm thinking it's maybe the other way round that the flare ups / the RA itself causes the stress?
Love your dog. The University of Pennsylvania Vet School has a "staff" German Shepherd named Tsunami ["Sue" for short] who is one of I believe 3 dogs in the world trained to detect ovarian cancer. So when I see your dog, it reminds me of Sue.