My doctor does not use a pain scale. He uses a percentage scale. He says our goal of treatment is to stop the progression of the disease and to feel 80% better from when I was first diagnosed. He was very glad when at my last visit I reported feeling 70% better. I, on the other hand, broke down and started crying. I couldn’t share in his excitement. 30% of intense pain, soreness, and stiffness is still a big amount, in my opinion.
My rheumatologist also says that my feeling of extreme fatigue and inability to keep up in my fitness classes and with my running has nothing to do with my RA. This is making me feel a little crazy. And a little depressed. This is as good as it gets?
Cheryl, it’s common to have such goals for treating RA since there is no cure and everyone responds to treatments differently. Sorry you are still feeling so bad. If you’re suffering so much, perhaps the treatments aren’t really helping that much. Fatigue is a real part of RA (read https://rheumatoidarthritis.net/living/ra-fatigue-complex-poorly-understood/). It can be better. I recommend that you speak to your rheumy about what you’re feeling and maybe seek a second opinion if you’re not satisfied. Hang in there!
Andrew is right – as frustrating as pain or percentage scales can be doctors need some way to help understand whether or not things are improving. I suppose each doctor has his own style/methods too. And I also think that Andrew makes a good point that it may be worth seeking a second opinion if you aren’t happy with how your doctor is responding to you. RA is a lifelong condition so it’s important to find a doctor that you feels understands your needs and is willing to work with you to get you feeling as good as you possibly can. There are a lot of ups and downs, though, and it can require a lot of patience. We are here to support you and, if you really start feeling down, it may make sense to seek additional help too. Taking care of how you feel emotionally is just as important as taking care of how you feel physically – and one certainly contributes to the other!
Hang in there!
Wow, I really like the idea of the percentage scale. I don’t like the pain scale at all. My pain levels are always high and I try not to focus on my pain. The pain scales force me to do so which always drops my mood like a ton of bricks. NOW, if you were to ask me how much better I feel … that is a whole different ball game! As I learn ways to cope and adapt my life, I am able to do more and consequently FEEL better. The quality of my life improves. I am learning ways to not stress my joints/muscles, to care for myself, so that helps too. The pain is still there but it becomes less of an issue since I’m not pushing through the pain to perform tasks. This month, I have been going to physical therapy for a year. It has been wonderful and helped tremendously. Twice a week, I do water exercises and receive heat packs to my large joints. Once a week, my hands receive a hot wax treatment, massage, therapeutic exercise, and more heat packs for the large joints. My therapists have helped me learn new ways to use my body in productive ways without hurting my joints. The pain levels themselves have dropped only 1 or 2 points on the pain scale. However, on a percentage scale … WOW, what a vast improvement, I am at least 40% -50% better! Maybe this is one of those is the glass 1/2 full or 1/2 empty scenarios. 50% better … my tank is half full. Pain scale of 8, I’m running on empty.
Something for Cheryl to think about … RA is a journey where you are accompanied by a disease. Some days you get to smell the flowers, some days pulling weeds., some days a mixture of both. But always it is with you, holding your hand, and relentless in it’s companionship. Just remember there are others of us on the same journey, you’re not alone … and there are medical providers who truly care.
Right on point Jan! We can feel a lot better percentage-wise without much change scale-wise. Glad that you’re feeling better and have a good combination of treatments. Excellent! Really appreciate your persistence and outlook to keep on trucking in this journey called RA. -Kelly (Site Moderator)