In the morning, I’m going to see the pain doc again about my neck, the one who took the place of Sir Topham Head when he moved away. They claim to only treat back pain, but that might be a good thing.
When I was first diagnosed with RA, I met a woman at my church who had RA in her wrists… only. Seriously, being over sixty, she luckily had a milder version of the disease. Rheumatoid Arthritis is a heterogeneous disease that can be mild, moderate, or severely active (full-blown). Of course, she could not relate to or even believe what I told her about having every joint affected.
But both of the two rheumatologists I’ve had (2.5 – 3 years each) understood and documented that my disease is severely active and affects me systemically. So every joint stays inflamed and I live with constitutional symptoms like daily fevers.
Why are there many joints that have never been treated or examined?
With the rheumatologists, there hasn’t ever been time for me to explain about the specific symptoms in each joint. So, I focused on trying to provide a clear picture of what’s going on in my case: inflammation in so many joints at the same time. I realize that’s not how it is in every case (possibly about one-third of RA), but that shouldn’t matter.
It worries me that no one has ever examined my knees, feet, or cervical spine. They are the worst. Along with my shoulders. My shoulders have recently been sort-of “examined” in a cursory, lax way that seemed ridiculous to me and family members who know how little use of them and how much pain I’ve had over the past 6.5 years.
“Dr. Smart” had never looked at my knees, but once I brought a stack of photos I had printed to show what goes on with my joints between appointments. When I flipped through the photos, doc grabbed one of a Baker’s cyst and said, “This is a Baker’s cyst. It can go in your chart. You are allowed one photo in your chart.”
So my Baker’s cysts were documented. But nothing was ever done.
This is one area where I’ve tried hard, but I feel like a failure as a patient. I’ve not been able to get a doctor to pay any attention to specific joints.
I know I’m NOT alone and this is NOT about my knees
This is not about me or my knees. Patients tell us getting care for a specific joint is a problem. Here’s Kay’s example from January:
Reminds me how I sometimes feel a sort of healthcare envy. I know I get it when my husband has say…an injured shoulder. He gets all these tests, he gets therapy paid for, he gets morphine for pain and a special cooler to ice his arm with. Meanwhile here I am, hauling this sorry limb around all day, every day, same shoulder – but where is the care? It is just as useless and just as painful, but because I have RA… all the doctors have put me in a box and figured “she’s getting the required treatment” and nothing more is done for me. You hear about people getting these extraordinary treatments that cost exorbitantly …and none are offered to you – or to get them you have to yell loud and long until someone hears you. All you want is to lay down on some hospital bed somewhere and have them take it all away because the fight is sucked out of you. I’ve watched lots of patients describe this same problem. If they have lots of joints inflamed, no one pays much attention. True systemic treatment would be the answer, of course, and we try treatments faithfully.
Someone Tweeted about this problem a while back and I mentioned how my knees aren’t treated. Dr. Carlo Caballero replied the answer is to control the disease. What if we’ve tried every treatment available?
Communication strategy with Rheumatoid Arthritis joints and care
What if a single joint or only a couple of joints are mentioned? How does the discussion go? I’ve been curious for a long time whether that works.
What do you think of this strategy? Have you tried discussing only one joint? Did it work?
What about consulting an orthopedist or other specialist about affected joints when rheumatologists don’t help? It makes sense to me.
Since the cervical spine RA can be dangerous and it occurs so commonly, I’ve often recommended people consult a neurosurgeon or get second opinions on imaging. If we only talk about my cervical spine tomorrow, maybe this will be the first time that my neck will be examined. I hope so.
Heartbreaking yet true coincidence
I hugged my beautiful friend Carla this summer, remembering when her mom died of RA because the RA in her neck was neglected by doctors in 2005 shortly before my diagnosis. Tonight I read Tanya’s blog on her cervical spine tests where she talked about her own mom who died of RA that same year. I knew the story already since I’ve talked with Tanya about it before. I cried as I thought about Carla and dozens of others who have told me similar stories.
Together, Tanya, Carla, and all of us will change the inadequate understanding and treatment of Rheumatoid Disease whether it affects the spine, knees, all joints, or just a wrist.
- Death by Rheumatoid Arthritis: Possible and Preventable
- Can Rheumatoid Arthritis Affect the Spine?
- I Want My Life Back
- Can We Treat the Whole Person or at Least the Whole Disease?