I was diagnosed with this disease about 16 years ago. There's not a lot of info out there on it as you may have found already. I suppose we are all different. What kind of pain is he experiencing? What are the symptoms of his pain? It seems to me if I rest my body when needed and do no do exessive exercise I do not experience a lot of pain - either that or my body has become accustomed to it.
I have used muscle relaxants and over the counter pain meds. in the past. Before any time of physical activity it is advised that the patient drink a soft drink for the benefit the sugar gives.....hope some of this helps!
JMH2007

Stay away from caffeinated drinks as this is not good for people with Mcardle's Disease. I have a family member who has been diagnosed with Mcardles Disease about 8 years ago. She has had the disease since she was a child. Does anyone know of any studies in the US?

McArdle's disease is a genetic disorder involving a glycogen storage defect. You would probably have pain in your muscles clinically. This is diagnosed by testing muscular glycogen, which is high.

ARTICLE: http://emedicine.medscape.com/article/1197 77-overview

How old is your brother?

I too have recently been diagnosed with mcardles. It is extremely difficult to find out anything - no treatments have been shown to work and there are layers to it that keep unfolding eg. ?10% can react very badly to the preoperative muscle relaxants. I was told to avoid muscle relaxants orally, I am going to ask the neurologist about the suitability of anti inflammatories. Personally when I have muscle spasm and then nausea if the pain is very bad I use ativan ( lorazepam ) which is an antispasmodic as well as its other properties. It is an addictive medication so I am not suggesting regular use but my neurolog. said 1-2 a week could never be a problem. I find one tablet taken soon enough works on the spasm and can save me 3 days of pain. I have used them 1-2 times a month without addiction issues.
Exercise induced inflammation may not respond as well. I have been to the E.R. and treated with iv anti inflammatory and dextrose saline. The iv fluids really help and the dextrose I think fuels the muscles.
I was told to take vitamin b6 daily and that creatine daily might be beneficial. I was looking online tonight and read something suggesting a ketogenic diet was effective. I havent looked to see what that is yet.
As someone else suggested, the best thing to avoid pain is to avoid exercise that uses the muscles strenuously, ie any weights/bowling/rowing etc, your brothers capabilities may vary from day to day.
It was sort of a relief to read this here tonight as I havent seen anyone else or a support group or anything. I had a year of looking for a diagnosis and it has been a year since I was diagnosed. Good luck to your brother and be certain that he has a good neurologist looking out for him.
PS. Another useful idea is to carry an info card in his wallet about the disese and treatment his neurologist wants if he has to go to the e.r. the disease is so rare they have to look it up and the data is limited and then they have to get hold of a neurologist which is awful if you are ill in the night.

Hi! My father had McArdles Disease and was diagnosed in his mid-twenties(in the early 80's). My father participated in numerous studies that went on at UCLA and USC, Hoag Hospital, etc. By the time my father was diagnosed, his doctors advised him to stay in a wheelchair to stop the damage he was doing/ had already done. He was always active, playing multiple sports all in High School and Coaching football and baseball and basketball. He was on many medicines and muscle relaxers. If he was very busy or active one day, he could sleep for a week. He would only up to use the bathroom, get something to drink and right back to bed. His doctors said at the rate he was going, he wouldnt see 36. He did. He lived until he was almost 45. Unfortunately, He did not die from McArdles, but of taking methadone and prozac together for 6 years. We say he was lucky because he did live almost 10 years longer then he was given and about 95% who take that drug combo do not live after a week of the interaction. My Dad was a great guy and lived a full life. Besides the studies he did for UCLA and USC there were also studies in New York which he did not attend, but the studies had some great results. A lot of other diseases can spring from McArdles if people arent careful. some of the are, heart disease, liver disease kidney failure, diabetes, etc. My dad had all of them. But they are very easy to avoid. Hope this helps!!!

I have McArdle's disease, as does my younger sister. There are quite a few studies and reviews around, but with small numbers, it is hard to say if Vit B6, creatine or other supplements help. Recommended diets are high protein (to help build up the muscle you lose), but different Drs may say different things about diet. The best thing to do really is to do gentle aerobic exercise, some people use high sugar drinks to get them started, but everyone should use the second wind phenomenon... warm up slowly, and do not exercise with pain. Complications such as muscle breakdown (rhabdomylosis) and following this (once broken muscle go into the blood), myoglobinuria (dark urine) can result. In which case you should drink as much water as you can, and possibly go to hospital for IV hydration to prevent renal failure. In worse cases of rhabdo you may need a fasciotomy (I've had one but its very rare). The worst thing is dealing with medical staff who donâ??t understand the disease I think, especially as we look normal and healthy. The take home message is to be healthy (seeing as we are at extra risk of diabetes). Eat well, exercise regularly.

My brother has Mcardle's disease and we suspect that I do as well. I'm finding that most general practitioners don't know anything about the disease. Where does somebody go to get tested ? Can somebody please write me and tell me what kind of Doc. I go see to be tested ?

I have McArdle's. I haven't found anything that helps with the pain but waiting for it to go away. Asprin sometimes helps with the aches I get after the spasms.