Tips & Techniques for Treating Chronic Fatigue Syndrome: Shortness of Breath and Joint Pain
January 14, 2004
By Dr. Richard L. Bruno
Director, The Post-Polio Institute
and Fatigue Management Programs
Englewood (NJ) Hospital and Medical Center
Patient Question: I have terrible trouble climbing stairs. I get totally out of breath and my hips and knees kill me. My doctor sent me for breathing studies, a stress test and X-rays. My lungs and heart are fine but I have arthritis in my "good" left hip and knee. The orthopedist says I may need a hip replacement. But both hips hurt the same when I climb stairs. What's wrong with me?
Dr. Bruno: You probably just have Post-Polio Syndrome (PPS). Many Post-Polio Institute patients report shortness of breath when climbing stairs or walking any distance. Your doctor was right to test your lungs and heart first. You should always rule out other
diagnoses before saying symptoms are due to PPS. But it's usual that those tests would be negative. The overwhelming majority of polio survivors aren't short of breath because of lung or heart disease. The problem is that they're doing too much with too little.
Since polio survivors have half the usual number of motor neurons on average and have weaker muscles, it makes sense that activities that aren't breathtaking for others will be for polio survivors. If one of our 25-year-old therapists gets winded running up a flight of stairs, you wouldn't worry that she had heart disease. She is short of breath because she just did something strenuous.
Polio survivors may be using the same amount of energy walking up stairs as the therapist does running. So what is the treatment for your shortness of breath? Stay off the stairs.
And the treatment is the same for joint pain. The overwhelming majority of polio survivors don't have hip, knee or back and neck pain due to arthritis. The pain-causing culprit is usually overexertion, doing too much with too few motor neurons and weakened muscles. When you climb stairs repeatedly, your muscles burn, your ligaments complain and you develop "polio hip"-- inflammation and bursitis in your overstressed joint. The same thing can happen in your knee or shoulder. The big question is whether your pain is in the joint, due to arthritis, or in the muscles and tissues around the joint.
Even if severe arthritis is causing hip pain, polio survivors aren't the world's greatest candidates for joint replacement. You need strong muscles around an artificial hip to hold it in its socket. Unfortunately there isn't even one follow-up study of hip replacements in polio survivors. But our experience is that polio survivors with severe arthritis can have successful hip replacements if their hip muscles are strong enough.
Adequate muscle strength is also the limiting factor when polio survivors have total knee replacements, as the only follow-up study shows. Pain decreased and function increased after knee replacements in 60% of knees where the thigh muscle had at least antigravity strength. But all knees with less than antigravity strength and 45% of the knees even with antigravity strength weren't better or got worse after the replacement. So knee replacements aren't a cure-all
for post-polio knee pain.
Unfortunately, some polio survivors have actually been told that knee
replacement is a "cure" for new leg muscle weakness, especially knee buckling due to a weak quadriceps. A patient who came to The Post-Polio Institute from Puerto Rico had both knees replaced with the promise of walking without braces; he was unable to stand at all after surgery. Replacing a joint to "cure" post-polio muscle weakness is like replacing a tire to "fix" a car that's run out of gas.
If you have a joint replaced, you need to be concerned about muscle weakness after surgery. In this age of managed care your insurance company will want you out of the hospital long before your muscles are ready. Non-fatiguing muscle strengthening exercise--which is monitored by a physiatrist and physical therapist knowledgeable about PPS and whose pace is determined by you--is required if muscle strength is to be regained and retained after surgery (see the
"Preventing Surgical Complications" articles in The Post-Polio Library at postpolioinfo.com/postpolio.)
But before you decide to replace anything [like a hip!] you need to stop your huffing, puffing and moaning by stopping the climbing. This is true for polio survivors and for people with CFS. Limit trips up and down stairs to two a day, get treated for inflammation or bursitis and then see how your joints feel. Even if you end up needing a joint replacement, replace your stair climbing now with a stair glide. Your lungs will thank you. And remember that old adage: Be true to your joints and they won't be false to you.
About Dr. Bruno: Dr. Richard Bruno is Chairperson of the International Post-Polio Task Force and Director of The Post-Polio Institute and International Centre for Post-Polio Education and Research at Englewood (NJ) Hospital and Medical Center. His new e-book, How to STOP Being Vampire Bait: Your Personal Stress Annihilation Program," will be published in 2004. E-mail him at PostPolioInfo@aol.com.
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