Coping with McArdle’s Injuries
One of the risks associated with McArdle’s disease is the painful cramping that can occur during moderate to intense physical activity. The exact nature of this cramping injury has not been investigated, but clinically it shares symptoms with crushing-type injuries such as those sustained during falls or auto accidents.
People who have McArdle’s disease may experience injury without even consciously over-exerting themselves, for example while carrying a heavy box for a few moments. Since muscles need chemical energy to relax as well as contract, an abrupt and precipitous drop in the cell’s immediately-available energy can subject cramped muscle fibers to forces that exceed their tensile strength. This is probably what causes the injury.
Anyone who has experienced McArdle’s “cramping” knows that the cramp itself is just an indicator that the muscle has actually been injured. In addition to immediate inflexibility, swelling, and pain, other symptoms such as myoglobinuria and fever may follow after one tries to extend the cramped limb and “walk off” the injury. To date, there is no treatment for McArdle’s disease, and the typical E.R. treatment for these cramping injuries usually involves intravenous saline and pain relievers. The more unlucky individuals wind up being treated for impaired renal function.
Another problem with these injuries is the difficulty regaining strength and flexibility in the injured areas. ?To date, the medical world cannot successfully regenerate muscle cells in a therapeutic application for humans, but there is promising research on the horizon. Until then, people who have sustained repeated muscle injuries have to make do with what they have.
What People with McArdle’s Disease Can Do About It
- Be Fit
Most clinical research on McArdle’s disease suggests that a regimen of disciplined, regular physical activity of an appropriate intensity and duration can not only improve symptoms but also make muscles less susceptible to injury. - Be Flexible
Flexibility decreases risk of additional injury in the affected area as well as other areas which may be secondarily weakened by that inflexibility. For some people with McArdle’s disease, stretching following walking offers immediate and dramatic pain relief. - Be Aware, Be Patient and WARM UP
It’s very easy to over-do it and get an injury quickly without even realizing it. ?Be conscious of your energy levels, your blood sugar, your heart rate, and your general feeling of wellness. Don’t avoid physical activity altogether, but when undertaking anything remotely strenuous understand that you do not have the luxury of being able to rush things. Take your time and get properly warmed up.Once you’re warmed up, stretch periodically.
McArdle’s disease doesn’t have to leave you sedentary and in pain.The more you know and do, the better off you are.
I am 38 yrs old and have McArdles. I found out when I was 16 yrs old. I have had dark urine 5 times now and my leg muscles are weak and still sore.My last episode was Nov.7 -09. It is still hard to walk and the tops of my thighs are still tight. The Dr. said now my liver function is abnormal.It is taking me alot longer to “heal” this time. Thank you for the new site.
Both my late sister and I suffered from McArdle’s syndrome from age 5,and at 83 I still do.Prolonged exercise on an empty stomach always precipitated my attacks,and still does,and if exercise is contiued my urine becomes a dark brown in colour.My understanding is that the medics.call this myoglobinuria,and is indicativeof the muscles having run out of glycogen,their energy fuel.Apparently we sufferers lack an enzyme that enables us to store glycogen in the muscles.The only treatment recommended is sugar in a hot drink,or better,chewing glucose.
Obviously it is better to take the sugar or glucose before undertaking exercise,and we can conclude that it is not a killer disease since I am still around at 83!However my condition physically is exacerbated by lumbar stenosis[narrowing of the spinal column]probably caused by disk protusions brought on by 62 years of golf.That cannot be treated since one attempt at surgery was a total failure.My mobility is now severely restricted,but not because of McArdle.Incidentally I measure my blood sugar myself to ensure I don’t overdo the sugar/glucose intake.
Sherri,
Is your doctor a neurologist? It is not unusual to have abnormal
liver enzymes with McArdle’s Disease, but each reading needs to be
carefully reviewed as to how high and why. Often, you need the advice
of a good internist and a neurologist. First, I suggest you find out
how high is your CK and start a chart to investigate your readings
over a period of time and your activity before the readings to find
out what you are doing to aggravate the reading. Second, I would suggest
you ask your doctor for a prescription for “Hemasticks” so you can test
your urine for blood when you have a lot of pain or contractures. If
a “too high” reading, you need to have a blood test (for CK, etc.)and
a urine test (for blood and protein). If things look bad, you need a
consult with a nephrologist to protect against kidney failure. What
is your highest CK reading and what was suggested by your doctor. Too
often, you must push your doctor for information, but you deserve the
facts. Please let us know what happens. Best wishes to you. Jim