Grappling With Instability or Fusion
At a recent visit to a new spinal doctor, I learned that my top couple of vertebrae have become "naturally fused" as a result of my rheumatoid arthritis (RA). He explained that when a patient is having problems with instability that, as a surgeon, he would typically perform a procedure that would fuse these bones, but my RA had already done it for me.
It was like a lightning bolt of understanding. As long as I can remember, I have been fighting the slow deconstruction and fusion of my bones. In my case, my bones typically fuse into place and I don’t suffer much from instability (or bones sliding out of the joint). However, the downside is that in most of my joints, I have very limited (or no) range of motion.
Bone damage is unpredictable in RA
RA can be ruthless. In the attacks it makes on the joints, the bones can lose their place and become unstable. Unfortunately, the damage to the bones is unpredictable in RA. It becomes even harder when we think a joint is managing, and all of a sudden a movement sends it painfully out of whack.
In my case, I’ll be going along with my day and suddenly my elbow feels out of joint. It has always recovered, but for a number of days, I will have increased pain and an inability to move it. Frankly, I have come to prefer the fused joints to this unpredictable pain.
Neck pain leads to questions
I was getting my neck checked because in recent years I have experienced an increase in pain in my neck and shoulders, plus reduced movement. I wanted to know what was happening and see if I should be doing anything about it. A couple years ago I had physical therapy, which alleviated the acute pain. But should I be doing anything more?
The spinal surgeon stated outright that no surgery was going to help with my neck issues. The joints are gradually fusing and my periodic pain is probably from a combination of my shoulder trying to compensate in motion and the slow process of natural fusion. While it isn’t fun, hopefully the pain will lessen over time. Again, the immobility of fusion sounds better to me than the surprise pain of instability.
For me, losing motion is better than continuous pain
It does sadden me to lose more motion, especially because I have lost so much already in my more than 40 years of living with this disease. But I really don’t have a choice in the matter and must learn to adapt. Instead of turning my neck, I turn my whole body. Instead of reaching, I move forward. At least the slow process helps me to make gradual adaptations over time.
When I was a child I experienced so much debilitating pain from my RA. It was near constant. Looking back, I believe this was the worst phase of my disease. My bones were under aggressive attack and were breaking down. Then, slowly, they fused back into a more permanent position, and I have lost motion in all of my joints over time. While it sounds terrible, I would take this phase of losing motion over the terrible, constant pain of my youth.
Accepting that more range of motion will be lost
With this in mind, I have to accept that more motion will be lost. I will try to slow it with exercise and maintaining my strength, but it will happen. The important piece is to monitor joint instability and try to manage this aspect of RA as best I can. A sudden injury could dislocate a joint painfully, and I definitely want to avoid that.
The RA trade-offs really aren’t fun. It heartens me to think that better treatments for preventing the RA damage in the first place mean patients in the future won’t have these terrible choices. But if it’s a choice between pain and immobility... Well, I would rather have to adapt to immobility than be in great pain or discomfort.
Did you have difficulty receiving a RA diagnosis?