Sleuthing the source of my various aches and pains

Last summer, my right knee hurt. As far as I know there was no injury; it just hurt. The pain grew to the point where I hobbled around the house. I used food delivery services and generally babied my knee. Eventually, I went to my doctor.

At the doctor’s office, my knee was examined, and we discussed the origin of the pain. An X-ray was taken. At last, the diagnosis was, “You have a mysterious knee pain.” They couldn’t find anything wrong and referred me to an orthopedic practice.

Again, I went through the standard diagnostic procedures. And again, no specific cause was found for the pain I was feeling. I was given a prescription for a pain reliever and best wishes in dealing with it.

Similar mystery pains have come and gone in both a wrist and an ankle. Each time the doctors didn’t find any cause for my complaint.

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My hypothesis

I believe these pains are most likely caused by my cold agglutinin disease (CAD). CAD is an autoimmune, hemolytic anemia. When my blood is exposed to cold temperatures, my white blood cells attack my red blood cells (RBCs). The RBCs are subsequently destroyed, resulting in anemia. Thus, there are fewer RBCs to carry oxygen to every organ and joint. Weird aches develop throughout my body, clamoring for more oxygen.

I seem to go from pain to pain. This past weekend, the organization I work for held a series of meetings. While all of it was optional, I decided I’d attend the teaching sessions. After all, my only responsibility was to plunk my body in a chair and sit and listen. How painful could that be?

It was painful. As the conference progressed, I began experiencing pain in my chest. A familiar band of pain developed around my lungs. An invisible elephant seemed to be sitting on my chest, despite my seated position. (Which was a good trick. I guess if you’re an invisible elephant you can do anything.)

I now have a cough. Although I can’t find any documentation to link this with CAD, my cough does appear when I have other CAD symptoms. There is also an ache in my throat that feels as if I’m being choked. These symptoms appeared over the weekend and are now, on Monday morning, quite pronounced.

My puzzlement is, where did these pains originate? Why am I experiencing pain? Is it related to CAD?

The short answer is “probably.”

Possible possibilites

As I listened to a recent webinar, University of Pittsburgh hematologist Roy Smith mentioned intermittent pain that particularly appears in muscles after exercise. “In order for a human being or any animal to function normally, you have to get enough oxygen to your tissues,” Smith said. “And in order to get enough oxygen to your tissues, you have to have enough hemoglobin, which means you have to have enough red [blood] cells.”

There it was.

Smith also discussed exercise, noting that our muscles have to develop a mechanism to synthesize the oxygen that is in our RBCs. I am interpreting that to mean that I did not harm myself by attending the meetings, nor will I do so by adding exercise. I must work through it and then things will return to “normal.”

I am always faced with a quandary about whether or not to treat these phantom pains or wait them out. In the case of the wrist pain, I went to the doctor and felt I had wasted my money. I felt better about my knee pain, as the prescription medication did provide me with some relief.

My plan now is to take the muscle relaxer my hematologist prescribed and wait. I’m postponing a video I need to make until I can talk without coughing. But I’m also planning to resume swimming. I think swimming 10 laps is perhaps better than zero laps.

As I look into the future, I think I need to get more lab work done, which hopefully will provide me with a clearer picture of the severity of my CAD. I plan to return to the United States in mid-June. These phantom pains are definitely on my list of topics to discuss with my healthcare providers there.

Note: Cold Agglutinin Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cold Agglutinin Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cold agglutinin disease.