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...
So i am curently weaning of predisone and onto Plaquenil. Between that and the other meds I take (statin and Zoloft and melatonin) I needed to get a Am/PM weekly pill organizer so I don't miss any doeses. This of course has me constantly worrying about my RA, which is mild at the moment..but every twinge I feel in my joints, the stiffness I feel after my hour and a half hour commute to work, the being tired because I get up at 5:40am daily...it all keeps my anxitey level higher than I would like. It's so hard to know if what I feel on a daily basis - which doesn't stop me as much as it annoys me - is RA or not. And if it is RA, should I be doing something other than getting on the meds? How do you cope with the constant thoughts in your head? How will I know when the pain or stiffness or tiredness is something I need to really do something about? Sorry for the ramble...
A pill organizer is an excellent thing! I've been using one for 15 years. I take 17 different drugs, so it is essential to me! Some of those are pills, 3 inhalers for asthma and a weekly needle, and another weekly needle starting next week.
But, even if I miss one for some reason it will not necessarily cause a flare. These drugs do build up in your system. And if you do have random flares, sometimes it is hard to figure out why. Sometimes I wake up with terrible flares and stiffness right after my Orencia shot (a biologic) and other times, I am great on the day before the shot, like today! I've been trying to track down the reasons for breakthrough flares, and after 18 years, there is no rhyme or reason for me.
RA is a serious illness, and of course you are going to have fears and worries about what is happening for a long time. You might want to see a doctor to get some counseling, about coping with RA mentally.
Whatever you do, be proactive. Don't be afraid to see the doc if the Plaquenil is not cutting it. I have tried it twice and got 0% help from it. (For a year each time) But I know others it was the perfect drug. So if you don't experience any relief after 6 months, you need to go back and see your rheumatologist! The same for tiredness.
Sorry to hear you are struggling so much. If you can find a med that works, you may be able to keep on working. But please consider that for some of us, work is impossible. I tried for 2 years to keep working, and finally had to stop and go on disability. But many others here can testify to being able to work.
Welcome to the group, but not to RA!
Sometimes it's good just to give yourself permission NOT to second guess everything ...... if only for a little while. As Marlene pointed out, if it's NOT RA, but is another autoimmune form of arthritis, the treatment is identical. So by taking DMARDS, you're covering all your bases.
I use two of those pill cases - different colors - one for morning, one for evening. I've allocated one shelf in my kitchen [well, half a shelf] for drugs, refills, etc. I have a number of diseases and conditions, so I take a number of Rx drugs.
About your commute to work: are you driving, carpooling, taking a train? Look into being a passenger. That's a LONG commute and I'm sure it's a lot longer in bad weather.
Is there an opportunity to work from home with your job? Even one day a week can be a huge help. Explore that possibility.
I was diagnosed over 20 years ago. I was newly divorced and didn't have the luxury of quitting my job or taking any time off from work. And that was a good thing, really, because it kept me from dwelling on my pain.
What should you be doing other than the drugs? Here's my list [hey, you asked!]:
1. Get the best rheumatologist you can....it's going to be a long relationship.
2. Exercise daily. I'm not talking about strenuous workouts in the gym, which you probably don't have time for. But if you're a passenger in your commute to work, why not bring a resistance band and do some stretching? Walk as much as you can. If you can swim, even better.
3. Understand that you may need to make some changes to your lifestyle. Begin educating family and friends close to you. They need to understand that you might not be able to attend every function when you're flaring [if you flare.....you may not]. Explain that part of the disease involves lethargy and sometimes little energy reserves. Most importantly, they need to understand that because you don't have a visible condition, it doesn't mean you're healthy. [This is a common issue amongst people with RA.]
4. Eat a well balanced diet. Forget about the vitamins and supplements unless prescribed by a doctor on the basis of some deficiency that shows up in bloodwork.
5. If you've put on a few pounds, take them off. It's hard enough moving around with RA. You don't need excess baggage.
This is the primary message I'm trying to impart: RA is not a death sentence. The disease can be controlled and life can be very meaningful. Attitude is EVERYTHING.
The commute is an ongoing issue..I have tried to get a job closer to home but have not been successful yet. It's the kind of thing I can work on every summer and one day I hope to get lucky. Carpool not an option at the moment, First thing I do when I finally get to work is stretch.
The meds are something I need to get used to. So is remembering to fill my pill organizer on Sundays. Not my biggest hurdle but it's still there...
I am currently following Weight Watchers - seems I have been for years - and I have lost weight in the past year. I should try to get in the pool with my kids so I will make that happen...
I think I am just feeling a bit sorry for myself which is not how I ever get. I want to be upbeat and peppy and have that "RA is not going to bring me down" attitude....just not there yet.....