It seems that every article I read that discusses our lack of activity only points out that the public at large and the medical community in particular not only do NOT understand what living with Rheumatoid Autoimmune Disease (RAD – formerly Rheumatoid Arthritis) means, but also do NOT understand the actual amount of pain we experience. A very few examples:
Tell me, just HOW can we exercise if our feet become involved to THIS extent?I’ve noticed that, although there may be no difference in my disability, my pain perception has become changed. What I once would have classed as an 8, I now class as a 5 on the typical “0-10” pain scale (which is totally inadequate for those with chronic pain, by the way). It doesn’t mean I function 3-points better, but just that part of chronic pain becomes background pain. It never changes.
Those with chronic pain may begin to only rate the “changeable” pain. At least that’s what I have discovered that I do. Acute pain is studied all the time. But what about chronic pain? And the kind of chronic pain (location in the body makes a difference). When I’m hurting, nothing, and I do mean nothing, will extract me from my recliner except the need to go to the bathroom. And then, I may need help just to walk to the bathroom. I’m not the only one. There are 1.5 million of us with varying degrees of chronic pain due to Rheumatoid Autoimmune Disease. Of us, only 20% are getting adequate relief from the various treatments being used. Only 20%. Another 30% are getting almost no relief. This leaves 50% getting anywhere from almost no relief to some relief to almost adequate relief.
So tell me, how are we supposed to walk briskly? Much less for 10 minutes? My best days I manage to go to the grocery store OR get my hair done OR visit one of my kids OR go out to dinner with my beloved and most patient husband. Not two much less three of these – only one – on a good day. I have to plan my week so that I do one activity per day – if it’s a good day. The days that I’ve had to cancel visiting with my kids and grandkids are too numerous to even think about. I’m the unreliable one in the family. I’m the unreliable member of my Red Hats group. I haven’t been to Church in 5 years.
If forcing myself to exercise would cure me, I’d do it. But from experience I know that it only makes me worse – it makes me go into flares, joints swell and hurt, and even more damage begins to occur.
What are the researchers thinking? What do they really know about rheumatoid autoimmune disease? How about some researchers who actually have RAD? People who are getting less than adequate relief from their third set of treatments are who we need doing the research. Then, perhaps, we would have fewer articles that imply that we who have RAD need to exercise more in order to get better.
We need the medical and surgical treatments that will PERMIT us to exercise more. And we need them right now!
How about all these splintery arthritis research groups getting together and pooling their money in order to conduct more meaningful research to find those treatments? NOW!
- High-dose opiates could crack chronic pain (InnovationToronto.com)
- Deciding on Rheumatoid Arthritis Surgery (everydayhealth.com)