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.

32 thoughts on “Coping with McArdle’s Injuries

  1. Ray

    Hi Everyone, like everyone else I couldn’t compete in any athletics events at school. I tried my best, but it’s very hard when you’re a kid and you already know you will finish dead last every time you start. I used to love the beach being an Aussie guy and I have had a few near drowning episodes over my life time which results from muscle fatigue and severe cramping. It’s no big deal on land, but a very big deal when you still have 50 Metres to get to shore . I am currently 63 and find moderate walking and stretching helps a lot, but choose an area that is flat and level. I walk the first minutes at a slow speed and then move to a medium level. You tend to get a ”’second wind” after about 5minutes or so. Try and stay positive, and Good Luck, Ray.

    Reply
  2. crystal

    i have a ten year old daughter that has mcardles do any of you have good ways to ease the pain ,she has showed signs of it since shes been about 2

    Reply
    1. Max

      A rheumatologist made an offhand comment yo me that if I was having an episode i should drink tonic water with quinine. That was the best advice I have ever received. It almost immediate relieves the cramps. My neurologist has worked with some pro level athletes and part of my routine now includes drinking amino acid (AminoX) recovery drinks before and during my athletic activity. I compete on a national level and my episodes are very limited. Usually i have some “triggers” like not eating, not eating enough protein, soreness from a previous workout that hasn’t gone away…

      Reply
  3. Farzad

    Hi guys the doctors think I have mcardles disease or rhabdomyolsis which breaks down the muslces. I have recently had a muscle biopsy and I am waiting for results.

    I have been admitted to hostpital 3 times and I am not allowed to do any running

    if have more info I would be greatful

    Reply
  4. rhonda

    I everyone I am 42 and have glycogen storage disorder. I narrowed it down toMcartiles. Anyway before my biospy ten plus years ago, the doctors said fibermyalgia.I went to emory and he said we need to a muscle biopsy. He told my husband and i that it came back glycogese storage disorder. I have never ever heard of that. He just gave me the low down. I started thinking back when I was a little girl and I wasn't physical or I couldn't run like everyone. I also stayed extremly tired. I think now it's because of this disorder. I just have to monitor what i do and of course with help pain meds. I'm thank ful I have seen the same doctor for thirteen years and he know whats going with me. I had a neurlogist tell one day that one year you might be going down the interstate 80 and the next year60, I try to stay happy and positive but, I not going to lie when my muscle are on fire its the worst feeeling ever.The doctor said they are slowly my muscle are dying at a very slow rate. I also get dark urine. My brother had ms but died in1994. To be honest I think he had what we have. I want to know it's hardly heard of anywhere????

    Reply
  5. Glenn Foot

    Glenn Foot
    I was diagnosed at 18 I am now 39. I live in Australia. My story is much the same as the rest from childhood I knew something was not right and just found ways to avoid excercise. I keep logging on every six months or so to search for any new information there really isn't much . in reference to your post Brenda I find I function better when it is warmer, may be just an Australian thing.

    Reply
  6. Lorraine Unbehagen

    Lorraine,

    I found out that I have McArdles at the age of 38 and I was wondering how often should my CPK level be checked because my Dr. doesn't check it. I think the last time it was checked was well over a year ago,the Dr. says that it isn't nessesary to check the level. Is that true ?

    Reply
    1. Frederick Gassmann

      Generally CK levels are checked when there has been an “incident” where a patient presents with symptoms typically associated with McArdles syndrome. CK levels tend to range from 3000 to 5000 with normal activity with someone who does not suffer from rhabdomyolysis or McArdles syndrome. Even with the diagnosis when a patient does not show symptoms of muscle cramping, dark urine, fatigue the CK levels might still be in a safe range. Staying hydrated is a good rule of thumb regardless of the activity level in order to maintain healthy renal function and to flush out the waste products from the disease. I have had CK levels checked when I was experiencing serious symptoms requiring intervention and the CK levels did not elevate until 4-6 hours after the symptoms started. After which the CK levels continued to elevate and or stay elevated for days after treatment began. Your question is a good one and I recommend you talk to your primary healthcare provider and pose the question to them and ask them to explain their choice of treatment further. It is important for a patient to be a “good self advocate” and insist of being informed of all details and decisions of their care.

      I hope this helps.

      Reply
  7. Sue Burns

    I was diagnosed with McArdle’s Disease in 2006 after years of absolutely know forever that something was wrong with me and that I wasn’t “normal”. My doctor just did not believe me, even having surgery on my leg for a compartment sysdrome. The muscle swelled beyond the capacity of the facia and compressed the nerve that was responsible for lifting my foot, so I had foot drop until (fortunately) the nerve regenerated and I could lift my foot again!

    I find that it tends to isolate me in that I cannot participate in most physical activities, which is a big part of life for lots of people. But at least now knowing, you can explain to people why you are such a “slow poke”. I found lots of people impatient about it as they think you are just lazy.

    Anyway, it is great to know what is wrong with you!

    I take the recommended creatine and vitB6 and find that water exercises are a great workout for me and very effective.

    Best of luck to everyone.

    Sue

    Reply
    1. Tim

      Hi Sue. My name is Tim Schultz. I just recently had the same thing happen. I now have foot drop on my left foot. THey have detected nerve damage. Did you have surgery to relieve the pressure in the leg? I made the mistake of just toughing it out as I have never heard of compartment syndrome until I did some research. I am so used to having muscle episodes that I never went in until after several days after the initial swelling. My fear is that the muscle has died as a result. I was diognosed in 2002 with McArdles in 2002 after years of coping with muscle problems and knowing something was wrong.

      Reply
    2. Tim

      Hi Sue,____My name is Tim Schultz. I just recently had a similar episode. The only thing is I never went in until 2 days after the fact. I had compartment syndrome, which I have never heard of and now I am afraid the muscle might be dead. I have drop foot as a result. They did do an EMG test a week later and it showed nerve damage, but they also said that the muscle was responding. I am scared that the foot drop won't get better. I am trying to hold onto hope. Did you have the pressure relieved soon after the muscle swelled?

      Reply
    3. Tim

      Hi Sue,

      I have recently experienced a similar injury, but I never went in to have the compartment relieved. I did not know to do so so I just toughed it out thinking I would be ok in a couple days like the many times before when I experienced McArdles injuries. I now have drop foot. Can you tell me how long it took for your nerve to come back around? It has been a month for me now.

      Reply
    4. Tim Schultz

      Hi Sue,

      Can you tell me how long it took for your nerve to regnerate? I have a similar experience in my left leg with foot drop.

      Thanks,

      Tim

      Reply
    5. Dave

      i spent my entire youth with people laughing and joking about how lazy I was. It wasn't until I was 25 that I finally had a muscle biopsy and found out I had #5 (mcardles). The psychological impacts were and still are devestating. My family still thinks I'm just lazy. If they only knew the pain and hardship I put myself thru to simply keep up running around a soccer field or simply walking up a hill to not put myslef in the position of mockery. I'll bet my efforts were similar to what a marathon runner endors. Now I'm pissed at myslelf, cause my ego has probably caused alot of muscle damage that can't be corrected. I was always aware of the 'second wind' and also sugar loading. Parents! Don't ever push yur kids beyond there 'own' level of fatigue and comfort. DANG.

      Reply
    6. vanessa

      Hi when i was reading your story it blows my mind how much the people who have McArdles, have suffered from the verbal abuse an being called lazy an being overweight. I am 52 and I feel like I have been watching everybody do life.(i am not having a pity party just truth) My sister has McArdles too. She is 38 she does much better than i do she learned how to take care of her self. I havnt been doing what the drs told me an i am getting weaker an in pain an suffer from fatigue, crampimg etc. I was diagnoised 10 yrs ago but I agree it helps a lot to know there is a name an a reason why i cant keep up. God bless you hang in there

      Reply
  8. Manuel Rodrigues

    I live all my life eith mcardle’s desease, but I just find out last week after so many teste, ben treten almost all my life for depression and I kep tell my douctor this not my problem, I have miserebel life special at work

    Reply
  9. Andrew Wakelin

    To EB McCall. Actually it is the other way around. In McArdle’s we have glycogen in our muscles, what we lack is the enzyme (myophosphorylase) to convert that stored glycogen into glucose to use for energy. Our problem is not that we run out of muscle glycogen, but that we can’t utilise what we have got.

    Reply
  10. Lee Clendennen

    I am 70 years old and was diagnosed with McArdles at age 65. I have been diagnosed withso many different diseases during my life it is unreal. I have suffered with extreme exhaustion all my life. My father said i was just pain lazy because i could not keep up with him walking. My P.E. coach in high school would make me try to race the other guys. When I would have to stop he would laugh at me and tell the others to take a good look at a lazy bum.
    My family doctor sent mr to neurologist five years ago. The neurologist had a mussle biopsy, two weeks later he called and told me what I have. The biopsy was sent to Baylor Medical Center in Houston. iwas sent to a specialist there that was supposed to know all about McArdles. To sy the least he did not impress me, told the sad story no cure and no releif.
    I am happy to have found the site, if anyone knows of something helps please post it here. I have found that a coke a cola kelps, but I beleive I will try sugar in a hot drink.

    Reply
    1. Dave

      Lee,

      Ibuprofen helps with mild cramps when coupled with an ice pack on the affected area. When I've been hospitalized with bad cramps and myoglobinuria I've been treated with steroids and very heavy pain meds.

      My history is similar to yours. My father wanted his sons to be athletes. My brother was, but I couldn't keep up. It leaves some pretty deep psychological scars so I know how you feel.

      Fortunately, I'm naturally blessed with decent muscle mass so the muscle wasting hasn't really affected me much yet. My left shoulder isn't what it used to be, but I'm pushing 60 so I can't complain. Try walking for exercise. Stop when you begin to feel pain and rest until it goes away then keep going. That'll help.

      Good luck.

      Dave

      Reply
  11. Jim Ottesen

    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

    Reply
    1. Craig Marsh

      I am a 46 yr old Navy Diver that has recently experienced a series of health problems/issues. I have been an avid swimmer, runner, and calisthenics type of person for 25+ years. For many of those years I can remember experiencing a lot of post workout pain and discomfort lasting anywhere from a few days to a week or more. I have always worked through pain and discomfort with the mindset that it was normal. Cramping, swelling, and serious weekness. A month ago I noticed dark brown urine (rootbeer) after a workout, and was hospitalized due to a 40,000 CK count and sore swollen muscles. A few weeks ago I was re-hospitalized for a week with 71,000 CK count and sore swollen muscles. I have since been referred to UAB medical center for Genetic testing and muscle biopsy, since the medical staff here seem to think I may have McArdle's or something along those lines. Does this sound feasable??

      Reply
      1. Frederick Gassmann

        Yes it does sound feasible. The normal disease process for atypical rhabdomyolysis is that the onset can be clearly tied to a specific traumatic event or injury or activity. The rule of thumb is that for the majority of people without McArdles syndrome if they receive immediate medical care and recover they will most likely NOT have a repeat of the symptoms again.

        Your case indicates a repeat of atypical symptoms (CK levels extremely elevated) from an activity that should not produce such high levels. I too was very active in my youth and just worked through the fatigue and pain thinking that this was normal.

        hope this helps.

        Reply
    2. vanessa

      Wow reading your blog was very encouraging I have my cpk tested every month my normal is 3000- 5000 I was wondering what you thought about those numers My liver enzemes stay pretty high too. plus I have a hard time with weight management have you ever heard of any one else having a problem with weight plus i am in chronic pain. Thanks for the suggestions about the sticks I have wanted a way to monitor this disease I have almost had kidny failure an have cramping and weakness. I have been to see the dr in New York an the MD ass. sent me an my sister to texas to see dr. haller but nothing seems to help all that much thanks so much God bless

      Reply
  12. E.B.McCall

    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.

    Reply
  13. E.B.McCall

    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.

    Reply
    1. vanessa

      I just found this site, I am 52 and my sister is 38 we both suffer from McArdles.I have been to both Drs. in new yok an texas. and I was never instructed to take sugar before therepy. We are missing myophosphlate enzyme and when my urine is dark it just about shuts my kidneys down.I get tired walking in my on home washing my hair brushing teeth even chewing. I can only hope I am doing as well as you are when I am83 its very encouraging to read your blog . I hope you continue to do well God bless

      Reply
  14. Brenda Krushnisky

    It is nice to see how far McArdles information have progressed since I was diagnosed 9 years ago at age 36. I had issues all my life with energy and strength and like the others was called lazy. After several episodes of positive myoglobin in my urine which produces the dark colour, and several very painful muscle cramps and breakdown, I was finally diagnosed after a positive muscle biopsy. 3 years later, I was diagnosed with Type 1 Diabetes, what a surprise, it has made the McArdles so much harder to manage, as we all know the main source of fuel for diabetes is carbs??? I guess I am a bit of freak in the medical field. Managing two extremely difficult diseases has frustrated me to no end, but each day is a new day and I am for the most part up to the challenge. I have found it so much harder in the summer months for McArdles, I can hardly walk down the stairs when it is really hot, I much prefer the winter. Coincidently, I also found out that in Canada the majority of McArdles cases are found in Newfoundland, Quebec, and New Brunswick. If anyone has anything else to add to this, please do so. Thank you so much for this website and FB, it is really exciting!

    Reply
    1. Tim

      Hi Brenda. I have type 2 diabetes and McArdles. I wondered if I was the only one. Every day is a challenge. Best of luck to you.

      Tim

      Reply
      1. Frederick Gassmann

        Tim: I have type 1 diabetes and find the dual diagnosis to be challenging. To put it simply Diabetes requires the reduction of calories and McArdles syndrome requires you to feed the muscles. The best solution at this time appears to contact your endocrinologist and talk to him/her about an insulin pump if you require insulin. Making sure you feed your muscle cells while engaged in activity can be done with sipping juice in small amounts during the duration of the activity so your muscles do not starve and start to show symptoms, and so your blood sugar does not spike from solid foods. It is a strategy that can be fine tuned by the individual. I am with you that it is difficult.

        Hope this helps

        Reply
      2. Jackie

        I am 58 and I also have type 2 diabetes and McArdles. I was just told that I had sugar about 3 months ago and I’m finding it very hard to control. I have to eat to have any energy at all. Seems like eating what I need to, to control my sugar,
        don’t give me energy. Very tough situation.

        Reply
    2. Frederick Gassmann

      I too find the cool months more comfortable than the summer months. I have much difficulty regulating my body temperature when it is hot out. If I take a walk my body will heat up excessively and continue to do so even after I stop and sit down. Body temperature regulation appears to be one component of many that need further research. Please see my previous posting regarding strategies to manage heat intolerance.

      I hope this helps.

      Reply
  15. Sherri Brewer

    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.

    Reply

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