Saturday, March 17, 2012

Comment Corner: Psoriatic Arthritis and a Bone Spur -- What to Do?

Before returning to breakdown and mending points, I wanted this week to share an interesting story from “Alane” that I fished out of the comment section. It’s a bit long, so I’ve edited it down a little. (Note: I added some bolding too, which I’ll return to later):
I will share my story as briefly as possible. At 31 I was diagnosed with Stage 3 breast cancer. The treatment I received: chemotherapy, a total hysterectomy at the age of 34 (which is not good for bone health), and daily doses of arimidex, an anti-cancer drug [with] side effects of increased joint pain.
I used to be a runner. I would run 5-9 miles, even though every time I ran it was painful. I had to give up running completely once my runs were leaving me unable to walk afterwards.
So, I took up walking long distances. It wasn't long before that form of exercise took its toll and I had to quit.
Over the years I have seen many doctors. Osteoarthritis is the agreed upon diagnosis. Many times I’ve been tested for Rheumatoid Arthritis, but the blood work has always been negative.
A few years ago I started cycling. I was immediately hooked. I signed myself and my husband up to ride in the Tour de Pink, which supports young women with breast cancer. I loved training for it and loved riding the three day, 220+ mile ride even more. My knees hurt, but ibuprofen, ice packs, and the infrequent cortisone injection helped.
I rode again the next year and the year after that. But each year has been more difficult. This year was the worst. My training was difficult and unenjoyable, even though I focused solely on keeping a high cadence to reduce the stress on my knee. Every ride left my knee swollen and painful.
My joint is so bad that I developed a bone spur under the side of my kneecap. I underwent a series of injections with cortisone plus a synthetic compound that is supposed to lubricate the joint. It didn't help.
Due to inflammation in other joints AND the fact that my knee will swell to monstrous proportions with no activity, my Rheumatologist again tested me for RA, with the same result: negative. She put me on a trial of steroids to see if they helped with the inflammation. They did, and I felt fabulous. This confirmed that I have Psoriatic Arthritis.
I have been taking it easy in the off season. I have my bike on a trainer and I work on spinning at a high cadence (around 90 RPMs). Unfortunately even spinning hurts: I am pretty sure this is due to the bone spur. My doctor doesn't want to do surgery because I’m only 43. Thankfully, he supports my cycling as it is "the best exercise for bad knees". His prescription: cycling at a high RPM, cortisone injections to relieve pain and reduce inflammation and swelling every three months, working with the Rheumatologist, and well, coping.
I am in some pain all the time. It makes me depressed and grumpy. I know there is no quick fix, but I refuse to be an inactive blob. I am wondering if I need to pursue surgery just to remove the bone spur on my kneecap. If you have any experience or insight on this, I would love to hear it.
First, the standard disclaimer -- I’m not a doctor or physical therapist, though I managed to heal my own bad knees against the odds -- so everything below should be considered, “Things to think about and discuss with a medical professional.”

After reading Alane’s story, my first reaction was: Wow. Alane, I think you’ve earned the right to be a little grumpy. Breast cancer at 31, then bad knees -- those are two big battles to try to overcome, and at a relatively young age.

Now for a few thoughts, starting with two bad things I want to get out of the way:

When I had chronic knee pain, I especially feared two things. One was having my knee change structurally, in a way that impeded healing. I wanted to save my knees before bone spurs developed, as they can restrict range of motion and complicate efforts to get better. The Australian study that I’m fond of citing, that showed 37% of subjects had cartilage defects improve naturally in their knees over two years, also found the worst prospects for joints that had bone spurs.

Second, I too was worried about possibly having rheumatoid arthritis. I was convinced I could heal my knees, given enough time, as long as some Crazy Switch hadn’t been somehow flipped on in my body, causing it to attack itself (which is what happens with an auto-immune disorder). Luckily, I didn’t have RA or any other auto-immune disorder, though I still suspect to this day that there was some kind of systemic problem, because of the pain in multiple joints that I suffered.

Okay, that’s the gloomy stuff. What’s the good news?

Well, for starters, are you sure you’ve got psoriatic arthritis? Getting a diagnosis, even a bleak one, can be a source of comfort. “Phew! At least I know what I have!” But do you really? Might it be worth getting a second opinion? Though if your joint has “monstrous” swelling with absolutely no activity, that does suggest something like an auto-immune problem.

Also, bone spurs aren’t exactly the death sentence I once feared! Distance runners routinely develop protective bone spurs, it’s been found. And bone spurs are actually covered with fibrocartilage -- a neat little adaptation our bodies make -- so they’re not as destructive as I previously thought. The big problem, I think, is when they restrict the comfortable range of motion you need for high-repetition exercises.

And more: You may be able to make some gains simply by moderating your activity level. You sound like a “warrior” type to me. That’s why I bolded certain phrases and sentences in your story, so you could take a closer look at yourself, in your own words. I strongly believe that exercising through knee pain is a no-no.

You seem like a fighter, a competitor ... which can be hard on damaged knees. Think about going Zen. Go backward to go forward. Ease up. Consider trying some very easy cycling at high rpms.

And finally: Have you tried swimming or pool exercises? I don’t know why, but something about your story screams out “pool therapy” to me. Give it a try?

As for having the knee spur removed, that’s a tough call. Any readers want to share knee spur stories? I have no experience there (I think I have a few knee spurs, but very small). So I’d discuss with a doctor, of course, and weigh how much the spur interferes with the range of motion of your knees and causes discomfort.

Good luck! Readers, please weigh in below with your own thoughts!

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