For me they would be as follows:
Muscle pain on walking, particularly uphill, with first calves, then thighs, then chest and arms all aching until there is no alternative but to stop. A short rest revives and enables you to carry on.
A steady pace can be maintained for often long periods but any attempt to up the pace is likely to lead to the same symptoms as above.
Stairs cause thigh pain and it is simply not possible to go on at a certain stage because muscles become frozen.
Over exertion leads to severe muscle stiffness which can last days.
Simple every day actions cause muscle spasm- opening a jar often causes my hand to spasm.
Not being able to keep going when doing tasks- sawing would always see me stop well before what would be considered normal.
Finally if your urine is coloured by what you think is blood after exercise this is a sign of muscle breakdown (rhabdo)- I have had this happen 4 or 5 time each time after exercise and I knew it was somehow muscle related. If it happens to you make sure to ask for a CK (Creatine Kinase) blood test as elevated levels are easily detected and are a sign that McArdle's might be the problem rather than a kidney complaint.
Saturday, January 27, 2007
How can getting your hair cut cause pain?
If you suffer from McArdle's it is all too easy. A week or so ago I was enjoying a relaxing head massage, while having my hair shampooed by a young lady, until it was time to rinse. Head back resting on the base of the sink was fine but when she lifted my head to rinse out the hair on the back of my head my neck muscles were unsupported and as I sat to type this note I felt the stiffness and aching that resulted.
Any sufferer knows lifting is not something they should do and even supprting the weight of one's own head can be too much in these circumstances..........
Any sufferer knows lifting is not something they should do and even supprting the weight of one's own head can be too much in these circumstances..........
Dr Slonim- a great help
Based in New York Dr Slonim is a world expert on the disease and takes the time to explain to patients what it is and what they should do to guard against deterioration. For me he recommended the following, (I would emphasise though that each programme is tailored to the individual after a session being closely monitored on his treadmill) :
- a daily (every day!!) 45 minute session on the treadmill. The first ten minutes at a snails pace of 1.6km per hour (that gets some looks in hotel gyms across Asia). Followed by 0.3km per hour increases in speed every 2 minutes. At 30 minutes to raise the incline to 2% and then 3% and finally 4% at five minute intervals.
- arm exercises with a large rubber band-which I admit I have lost
- a diet high in protein and low in carbohydrate to promote muscle regeneration
- a supplement of alanene - small dose regularly
The idea of the exercise is to gradually get going and reach the stage where your body is using the energy within the blood rather than seeking to take it from glycogen stored in muscles. I must confess I do not manage every day though I am trying hard in 2007!!
Since seeing Dr Slonim I understand my disease more fully and have certainly not deteriorated, while he has worked wonders with many other patients.
His clinic is in New York - details as follows:
Center for Metabolic Disorders
Telephone: 516 616 0074
Facsimile: 516 616 9388
The relief of diagnosis
My recent diagnosis, at the age of 44 by two doctors in Singapore brought with it an enormous sense of relief and an explanation which I have sought for so long. To finally know that my weakness is not just laziness, a pathological aversion to exercise or simply a negligent attitude to fitness is solace. Diagnosis also brings with it, since the disease is hereditary a fear that my three children may suffer similarly, although at least if they do we will now understand why.
They disease is supposed to be auto-recessive meaning that both parents need to be carriers for a child to be affected. It is clear that my eldest two children are not impacted- my son has the energy at any sport that I have always longed for - my youngest complains of aching legs, which makes me wary and is a symptom we will have to watch out for.
My final diagnosis came courtesy of the alertness of Dr Ng a Singapore cardiologist and his attention to both patient notes and a chance remark. I had first visited his clinic in March 2005 when early morning chest pains caused me sufficient concern to seek medical attention. Thankfully the blood test and ECG showed no heart problems( although the blood test provided Dr Ng his first clue). A treadmill test confirmed this but revealed me to be“surprisingly unfit” (not to me) as the increase in speed led me to have to give up half way through the test.
A routine cholesterol test revealed a sufficiently high count for Dr Ng to recommend statins, which he warned me may cause muscle aching. I jokingly said that was something I was used to and after further questions Dr Ng decided to check my CK (Creatine Kinese) level. I left his practice and returned to the office and was surprised to receive a call a little later requesting I return to the hospital immediately and check in for observation. My CK level, which indicates muscle breakdown was over 3,000 - 3 days on a drip and a muscle biopsy was scheduled, which gave the conclusive diagnosis.
They disease is supposed to be auto-recessive meaning that both parents need to be carriers for a child to be affected. It is clear that my eldest two children are not impacted- my son has the energy at any sport that I have always longed for - my youngest complains of aching legs, which makes me wary and is a symptom we will have to watch out for.
My final diagnosis came courtesy of the alertness of Dr Ng a Singapore cardiologist and his attention to both patient notes and a chance remark. I had first visited his clinic in March 2005 when early morning chest pains caused me sufficient concern to seek medical attention. Thankfully the blood test and ECG showed no heart problems( although the blood test provided Dr Ng his first clue). A treadmill test confirmed this but revealed me to be“surprisingly unfit” (not to me) as the increase in speed led me to have to give up half way through the test.
A routine cholesterol test revealed a sufficiently high count for Dr Ng to recommend statins, which he warned me may cause muscle aching. I jokingly said that was something I was used to and after further questions Dr Ng decided to check my CK (Creatine Kinese) level. I left his practice and returned to the office and was surprised to receive a call a little later requesting I return to the hospital immediately and check in for observation. My CK level, which indicates muscle breakdown was over 3,000 - 3 days on a drip and a muscle biopsy was scheduled, which gave the conclusive diagnosis.
Undiagnosed -A recipe for humiliation and feelings of inadequacy
For as long as I can remember, and even before, I have lived with muscle pain that has sporadically led to a feeling of humiliation and inadequacy,with that humiliation sometimes painfully public. While with the disease more widely recognised several hospital visits and numerous tests, some invasive and potentially dangerous could have been avoided. But more of that later......
My research on the internet, and membership of a great on-line community, has quickly revealed the condition to be rarely diagnosed, but whether it is in fact rare is unclear.
Accordingly my blog is designed to draw attention to the condition in the hope that other sufferers may be more speedily diagnosed in future and saved the humiliation I have often felt, while I will try and keep up to date with my progress on the regime I have been given by it Dr Alf Slonim, a great and devoted doctor who has helped many with this and other diseases.
My parents have often told me how even at an early age I hated walking and after a short distance would complain my legs ached. As an adult I used to find any excuse to avoid walking with colleagues even a short distance, while I have an aversion to hills bordering on pathological.
I could not begin to count the number of times I have stopped to needlessly retie a shoe lace or in recent times to get cash I didn't need from the ATM at the top of the Bank tube station walkway.
All because my body lacks an enzyme to enable the breakdown of glycogen stored in my muscles. A short rest and I can walk on as the energy supply from my blood kicks in and allows the muscles to function without cramping up, but by then friends and colleagues are yards away looking back thinking who knows quite what.
At school I remember swimming to have been a particular challenge, while I could swim quite well underwater on top I would quickly have to give up as muscles cramped up and I ground to a halt. A junior school house lengths is my first recollection of humiliation in public. I managed to complete my length but not before those on life guard duty came to the side of the pool to pay particular attention to the poor weakling who seemed in peril and who was delaying proceedings with what must have been one of the slowest lengths in school history.
My parents tried, as good parents would, to build my strength, cod liver oil and malt, the smell of which to this day makes me nauseous was the first and most oft used remedy. Their worst attempt though was the present of a Charles Atlas Bullworker one Christmas, which simply served to emphasise my inadequacy. A few attempts to use it resulted in rapid failure, while friends were all too adept. It very quickly was consigned to the very back of the toy cupboard. I don't recall what I really wanted that year but I do know Charles Atlas was not it!!
At school my attempts at most sports were not good, despite my love of most ball games and a degree of aptitude. Running has quite simply always been a problem and hence though I love football the first five minutes would always be agony, and anyone watching would quickly deduce I was hopeless.Rugby and hockey presented similar problems. The days that followed games over many years, and to this day, would also see me wander around with a degree of stiffness most people would associate with far more demanding excercise. Athletics was simply a search for the least worst option, the400 metres was to be avoided by any means, and so the shot putt or the javelin became my pursuit of choice, very short, and in my case very minimal exertion followed by plenty of sitting and waiting for the next pitiful attempt.
My house master at Bristol Grammar school noted in one report that the onset of the cricket season had brought with it a huge increase in self confidence and an increased respect from peers. Cricket has always been my sport and I was able to represent Bristol Grammar school and The City University and played to a reasonable standard. A reflex catch at short leg takes little exertion, and I took a number. Running between the wickets can with skill be controlled by appropriate calling, except of course in very tight situations. In one such, as a junior player at Flax Bourton CC I recall attempting a third run and coming to a grinding, inexplicable halt mid pitch. Dismissed run out I walked back to the pavilion close to tears unable to explain what had happened or why. Now 30 years on I finally have the answer. I have continued to love the game passionately and have achieved some success, though disaster has it seems been only several consecutive two's or god forbid an all run four away.
In the last two seasons I have taken to eating a banana before each innings and my general play seems to have improved, but I know I have got out on many occasions over the years through worrying about how I would be able to run the next single, rather than focussing totally on the ball.
Sufferers of the disease get a second wind after the energy supplied by the blood kicks in and personal examples of this are many. Some 20 years ago close friends who love mountain biking had organised a weekend away for a group of university friends, on the South Downs, while anxious prior to the weekend I did not want to miss a close friends birthday celebration and so made the drive down and stood early one Saturday morning bike at the ready to face the day ahead. As fate would have it we quickly faced a long uphill stretch and within minutes the familiar cramping of leg, arm and chest muscles began. Mercifully just as I was about to stop and head home the chain came off another participants bike and we all stopped, much to my relief. The short rest enabled me to carry on barely troubled for the rest of the day.
Hills in truth have always been an issue even a relatively modest incline. The walk to my father's car after our regular visits to Ashton Gate (home of Bristol City F C), became something I dreaded as a child. We used to park a short walk from the ground but critically for me this was at the end of a long incline. Each visit I left the ground hoping this time I would make it back to the car without stopping, but each time I failed as leg and then arm and chest muscles would cramp up at roughly the same spot . My father never lost patience although he encouraged me to try and walk on. In truth this is something a McArdle's sufferers should never do as it can cause muscle damage. But how were we to know. Mum had taken me to see doctors but in the 70's the disease was unheard of .
I recall a visit to the football club with my father for circuit training. By chance the then manager was in the changing room and dad asked for his analysis, which was broadly work harder and weakness brought on by laziness will be overcome. So I embarked on an effort to strengthen my body convinced I was simply too lazy, but as with many attempts since success did not follow.
At the age of 23 I moved courtesy of Midland Bank to Hong Kong and enjoyed a fantastic 18 month spell there, where I experienced my first McArdle's enduced hospital stay. A friend suggested I join a local gym and so I headed for Tom Turk's convinced maybe this time I could get fit. The trainer put me through a series of exercises, including some sit ups and a number of some back exercises. A pre-arranged game of squash followed and by the time I got home I was already in some pain. I was shocked on visiting the bathroom to see my urine stained red by what I presumed to be blood and when I could not move the next morning I was taken to hospital, where I spent several days. In 1986 there were only very few cases of McArdle's worldwide and hence it is no surprise my doctor looked elsewhere for a diagnosis. A cystoscopy and a renal biopsy( a procedure I only learnt later in life to be dangerous) were ordered and undertaken but revealed nothing. Needless to say I did not return to Tom Turk's and until my diagnosis always thought that they had simply pushed me too hard and that I was too weak.
On several occasions since I have experienced a particular muscle tightness, which I have learnt can precede dark red/brown urine, and twice I have been hospitalised, both after cricket and an injudicious (for me) attempt at an extra run. On each occasion my blood has been tested and my kidneys examined but on neither was the possibility of McArdle's considered. Though I remember being convinced this was somehow a muscular problem - but how could it have been?
Over the years I have often wondered whether my weakness could have a cause other than laziness, while bouts of fatigue have been explained by post viral syndrome.
My research on the internet, and membership of a great on-line community, has quickly revealed the condition to be rarely diagnosed, but whether it is in fact rare is unclear.
Accordingly my blog is designed to draw attention to the condition in the hope that other sufferers may be more speedily diagnosed in future and saved the humiliation I have often felt, while I will try and keep up to date with my progress on the regime I have been given by it Dr Alf Slonim, a great and devoted doctor who has helped many with this and other diseases.
My parents have often told me how even at an early age I hated walking and after a short distance would complain my legs ached. As an adult I used to find any excuse to avoid walking with colleagues even a short distance, while I have an aversion to hills bordering on pathological.
I could not begin to count the number of times I have stopped to needlessly retie a shoe lace or in recent times to get cash I didn't need from the ATM at the top of the Bank tube station walkway.
All because my body lacks an enzyme to enable the breakdown of glycogen stored in my muscles. A short rest and I can walk on as the energy supply from my blood kicks in and allows the muscles to function without cramping up, but by then friends and colleagues are yards away looking back thinking who knows quite what.
At school I remember swimming to have been a particular challenge, while I could swim quite well underwater on top I would quickly have to give up as muscles cramped up and I ground to a halt. A junior school house lengths is my first recollection of humiliation in public. I managed to complete my length but not before those on life guard duty came to the side of the pool to pay particular attention to the poor weakling who seemed in peril and who was delaying proceedings with what must have been one of the slowest lengths in school history.
My parents tried, as good parents would, to build my strength, cod liver oil and malt, the smell of which to this day makes me nauseous was the first and most oft used remedy. Their worst attempt though was the present of a Charles Atlas Bullworker one Christmas, which simply served to emphasise my inadequacy. A few attempts to use it resulted in rapid failure, while friends were all too adept. It very quickly was consigned to the very back of the toy cupboard. I don't recall what I really wanted that year but I do know Charles Atlas was not it!!
At school my attempts at most sports were not good, despite my love of most ball games and a degree of aptitude. Running has quite simply always been a problem and hence though I love football the first five minutes would always be agony, and anyone watching would quickly deduce I was hopeless.Rugby and hockey presented similar problems. The days that followed games over many years, and to this day, would also see me wander around with a degree of stiffness most people would associate with far more demanding excercise. Athletics was simply a search for the least worst option, the400 metres was to be avoided by any means, and so the shot putt or the javelin became my pursuit of choice, very short, and in my case very minimal exertion followed by plenty of sitting and waiting for the next pitiful attempt.
My house master at Bristol Grammar school noted in one report that the onset of the cricket season had brought with it a huge increase in self confidence and an increased respect from peers. Cricket has always been my sport and I was able to represent Bristol Grammar school and The City University and played to a reasonable standard. A reflex catch at short leg takes little exertion, and I took a number. Running between the wickets can with skill be controlled by appropriate calling, except of course in very tight situations. In one such, as a junior player at Flax Bourton CC I recall attempting a third run and coming to a grinding, inexplicable halt mid pitch. Dismissed run out I walked back to the pavilion close to tears unable to explain what had happened or why. Now 30 years on I finally have the answer. I have continued to love the game passionately and have achieved some success, though disaster has it seems been only several consecutive two's or god forbid an all run four away.
In the last two seasons I have taken to eating a banana before each innings and my general play seems to have improved, but I know I have got out on many occasions over the years through worrying about how I would be able to run the next single, rather than focussing totally on the ball.
Sufferers of the disease get a second wind after the energy supplied by the blood kicks in and personal examples of this are many. Some 20 years ago close friends who love mountain biking had organised a weekend away for a group of university friends, on the South Downs, while anxious prior to the weekend I did not want to miss a close friends birthday celebration and so made the drive down and stood early one Saturday morning bike at the ready to face the day ahead. As fate would have it we quickly faced a long uphill stretch and within minutes the familiar cramping of leg, arm and chest muscles began. Mercifully just as I was about to stop and head home the chain came off another participants bike and we all stopped, much to my relief. The short rest enabled me to carry on barely troubled for the rest of the day.
Hills in truth have always been an issue even a relatively modest incline. The walk to my father's car after our regular visits to Ashton Gate (home of Bristol City F C), became something I dreaded as a child. We used to park a short walk from the ground but critically for me this was at the end of a long incline. Each visit I left the ground hoping this time I would make it back to the car without stopping, but each time I failed as leg and then arm and chest muscles would cramp up at roughly the same spot . My father never lost patience although he encouraged me to try and walk on. In truth this is something a McArdle's sufferers should never do as it can cause muscle damage. But how were we to know. Mum had taken me to see doctors but in the 70's the disease was unheard of .
I recall a visit to the football club with my father for circuit training. By chance the then manager was in the changing room and dad asked for his analysis, which was broadly work harder and weakness brought on by laziness will be overcome. So I embarked on an effort to strengthen my body convinced I was simply too lazy, but as with many attempts since success did not follow.
At the age of 23 I moved courtesy of Midland Bank to Hong Kong and enjoyed a fantastic 18 month spell there, where I experienced my first McArdle's enduced hospital stay. A friend suggested I join a local gym and so I headed for Tom Turk's convinced maybe this time I could get fit. The trainer put me through a series of exercises, including some sit ups and a number of some back exercises. A pre-arranged game of squash followed and by the time I got home I was already in some pain. I was shocked on visiting the bathroom to see my urine stained red by what I presumed to be blood and when I could not move the next morning I was taken to hospital, where I spent several days. In 1986 there were only very few cases of McArdle's worldwide and hence it is no surprise my doctor looked elsewhere for a diagnosis. A cystoscopy and a renal biopsy( a procedure I only learnt later in life to be dangerous) were ordered and undertaken but revealed nothing. Needless to say I did not return to Tom Turk's and until my diagnosis always thought that they had simply pushed me too hard and that I was too weak.
On several occasions since I have experienced a particular muscle tightness, which I have learnt can precede dark red/brown urine, and twice I have been hospitalised, both after cricket and an injudicious (for me) attempt at an extra run. On each occasion my blood has been tested and my kidneys examined but on neither was the possibility of McArdle's considered. Though I remember being convinced this was somehow a muscular problem - but how could it have been?
Over the years I have often wondered whether my weakness could have a cause other than laziness, while bouts of fatigue have been explained by post viral syndrome.
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