Re: mitoldies: elevated CK and pain advice please

May 19, 2005

I use 5 gm. creatine monohydrate as daily supplement along with K-Phos

Neutral (rx phosphorus) to help supply ATP to muscle and prevent breakdown.

Phosphocreatine can be a useful alternate source of ATP when other pathways

don't function, and it is very often abnormally low in people with

neuromuscular disorders. Boosting phosphocreatine can be very useful. My

muscle weakness has improved on this regimen. I maintain fluids to keep

kidneys clear. Activity level is the single biggest trigger for me, so if

I'm having more pain and weakness, it usually means I need to rest more and

pace myself better. Other triggers include diet, the wrong foods, not enough

of the right foods, or not enough calories; or infection or some additional

underlying problem. Infection always kicks off the muscle weakness for me,

sometimes dramatically. Best approach in that case is to identify and treat

the infection (or whatever the issue is) and then my muscle recovers with

time. For me sometimes the first sign that something else is wrong,

something new, is that my muscles deteriorate when there is no obvious

trigger like overdoing.

Hope this helps.

Barbara

_____

From: [mailto: ] On Behalf

Of MitomomX3@...

Sent: Thursday, May 19, 2005 11:12 AM

To:

Subject: : elevated CK and pain advice please

I have a quick question...my oldest daughter has been having alot of muscle

pain and weakness..her CK's came back high..700..

is there anything her doc can do or give for the pain and weakness and to

help with the elevated creatnine kinase?

Thanks

May 19, 2005

Hi ,

I have had elevated CK levels on and off for years. Mine has gone as high

as 81,000 but the lower highs like 700 can still be very uncomfortable. When

I'm hospitalized for it they give me a morphine drip but when I'm home I just

take Motrin and rest. Hot packs really help too. My mom made me some packs

with rice and lavender in them. I pop them into the microwave for 2 minutes

and put them wherever I hurt. It is very important to hydrate her when the

CK is high to avoid kidney damage. My left kidney is very bad from repeated

rhabdomyolosis from the high cks. Have her drink Propel, Gaterade or some

other kind of electrolytes and water. If her urine starts getting cola

colored,

she really needs hydration and IV hydration might be necessary. Other than

that I just rest and avoid exercise. My neuro has a standing order for iv

hydration if my levels go over 5 times the normal which is around 600 due to my

damaged kidneys. That might be something to look into for the future. The

hydration really makes me feel better. I hope this helps.

S

May 19, 2005

Along with what Barbara has said, her electrolytes, including

magnesium, might need to be checked. When I get lots of cramping

without excessive physical activity, it is usually my kidneys spilling

more magnesium.

Pacing myself, getting enough sleep and taking my supplements controls

the pain and cramping to a tolerable level unless my magnesium,

potassium, phorphorus or calcium are low.

laurie

> I use 5 gm. creatine monohydrate as daily supplement along with K-Phos

> Neutral (rx phosphorus) to help supply ATP to muscle and prevent breakdown.

> Phosphocreatine can be a useful alternate source of ATP when other pathways

> don't function, and it is very often abnormally low in people with

> neuromuscular disorders. Boosting phosphocreatine can be very useful. My

> muscle weakness has improved on this regimen. I maintain fluids to keep

> kidneys clear. Activity level is the single biggest trigger for me, so if

> I'm having more pain and weakness, it usually means I need to rest more and

> pace myself better. Other triggers include diet, the wrong foods, not

> enough

> of the right foods, or not enough calories; or infection or some additional

> underlying problem. Infection always kicks off the muscle weakness for me,

> sometimes dramatically. Best approach in that case is to identify and

> treat

> the infection (or whatever the issue is) and then my muscle recovers with

> time. For me sometimes the first sign that something else is wrong,

> something new, is that my muscles deteriorate when there is no obvious

> trigger like overdoing.

>

> Hope this helps.

>

> Barbara

>

> _____

>

> From: [mailto: ] On

> Behalf

> Of MitomomX3@...

> Sent: Thursday, May 19, 2005 11:12 AM

> To:

> Subject: : elevated CK and pain advice please

>

> I have a quick question...my oldest daughter has been having alot of

> muscle

>

> pain and weakness..her CK's came back high..700..

> is there anything her doc can do or give for the pain and weakness and to

> help with the elevated creatnine kinase?

> Thanks

>

May 19, 2005