Riding With a Muscular Inflammatory Disease

By Marilyn Trout | 08/17/11

Sue Clark , “pg 206 Thigh Muscles” October 2, 2009 via Flickr, Creative Commons Attribution.

We’ve teamed up with Marilyn Trout, certified USA Cycling Elite Coach to answer Voler Newsletter List members’ training questions. You can view her coach profile at http://www.linkedin.com/in/mountainpedalscoaching80903 Send your cycling inquiries to Marilyn, and for a limited time, if yours is selected to be answered in our Training column, Voler will send you a $20 gift certificate that can be used towards any purchase from the Voler Store at http://www.voler.com. To submit your inquiry, e-mail her at Marilyn@MountainPedals.net, and type “Voler Training Question” in the subject line of the e-mail.

The following tip is a reprint of a July 2009 question submitted by Voler E-Mail List member Mike Harris – still an excellent subject at any time.

Riding With a Muscular Inflammatory Disease

Hello,

I am 61 years of age and became an avid recreational bicyclist when I turned 30. In 1999 I was diagnosed with what my rheumatologist thought was a slowly developing case of polymositis. I never developed the profound weakness associated with polymyositis, so that diagnosis was ruled out. Instead, I experienced bouts of profound fatigue and significant exercise intolerance to the extent that it took me the better part of a week to recover from rides of less than 30 minutes. I was able to start riding again more or less regularly about two years ago and I recently began training for a 525-mile charity ride. I have noticed that I have little difficulty developing endurance and I can handle hilly rides. My concern is that I don't seem to be able to develop speed, whether climbing or on the flats. I find out-of-the-saddle climbing, which I used to do without even thinking about it, extremely painful in my quads after less than a minute, and I experience the same intolerable burning pain whenever I try to make any hard effort. The pain ceases almost immediately after the effort ends and I don't feel fatigued; I simply can't ride fast. Club rides with faster riders are frustrating, to say the least. Current medications include low-dose methylpredisolone, azathioprine, and a calcium channel blocker to counteract an increase in blood pressure caused by long-term steroid use. Is it reasonable to expect that I will ever gain speed, or should I focus on increasing my endurance while keeping out of the "red zone?" Do other cyclists with idiopathic myopathies have similar experiences and advice to share? I realize that these diseases are extremely rare. My rheumatologist, although highly competent in his field, has no relevant experience in athletic training. He encourages me to do as much as I can tolerate, but can offer no solid advice on improving performance. What do you suggest?

Thanks,
Mike H.
Moorpark, California

Mike,

From a preliminary investigation, it would appear that your medications have an adverse effect upon the musculature, especially anaerobic work during cycling, including muscle weakness and fatigue. (Dehydration manifests itself in a similar way, with cramping during exercise being a classic situation. I have become aware of an athlete, a professional chef, who would cramp so often he simply had to stop racing. Working in a hot kitchen and training were the culprits contributing to this situation of being in a constant state of dehydration.) I spoke with a pharmacist athlete of mine with regards to your medications for your muscular disease so I could get a bit of a handle on the impact of these drugs:

“All drugs being reported, decrease muscle trophy (increase chronic atrophy). Long term corticosteroid use equals muscle atrophy and the other immunomodulators also decrease response to exercise inflammation. Ironically, these immunomodulators minimize acute muscle atrophy (ie lactic acidosis and myopathy from muscle degeneration caused by athletic events and other stressors). Hence, this athlete can do long aerobic exercise but lacks muscle strength because of the immune system's decreased activity while the athlete is on these medications. From a pharmaceutical point of view, decrease the dose of all drugs to the lowest therapeutic possible, otherwise, if this is not advisable by the rheumatologist, know that aerobic activity can be enjoyed while any anaerobic work will be effected adversely.”

“Is it reasonable to expect that I will ever gain speed, or should I focus on increasing my endurance while keeping out of the "red zone?" At this point in time, the medications that you are prescribed limit how intense you are able to ride and unless there are medicinal alternatives, I believe being able to do these endurance events without going into the "red zone" is the prudent approach to take.

Do other cyclists with idiopathic myopathies have similar experiences and advice to share? At this moment, I am not aware of any but will do some investigation. (If any Voler reader has experienced something similar and would like to contact me, please send along an email.)

Would it be possible for you to get a second opinion? I found in the past that even the best of doctors have their limits when it comes to understanding the needs of athletes if they themselves aren't of a kindred spirit.

You’re an inspiration to your extremely high pain threshold,

Marilyn

PS Mike followed up our initial correspondence with some additional information.

Marilyn,

Thanks for your reply. My CPK has been elevated since the illness began 10 years ago. It is currently stable in the four to six-hundred range. At one point it was as high as 4,000 and I was restricted to slow walking. I keep well hydrated and have virtually stopped drinking caffeinated beverages and soft drinks. Water is my drink of choice. I closely monitor my weight as part of keeping well hydrated.

I got a second opinion on the disease from one of the foremost inflammatory muscle disease specialists in the world and a third opinion from a team of specialists at the UCLA medical center. I think maybe the missing piece is a consultation with an exercise physiologist who understands cyclists. Thanks for the suggestion. At the time of the earlier consultations I was too sick to ride a bike and the focus was on getting a good diagnosis.

Today I rode a hilly 43 miles, my longest ride since I resumed. I felt fine when I got home. A couple of days ago I did a 17 mile hilly ride and climbed a short (1/2 mile) 14% grade. I seem to be able to develop endurance and some strength, but not the power output required for speed. Regardless, I still love riding the bike.

Mike

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