Re: muscle seizing and pain

[Guest guest]

--- Vcgpg@... wrote:

> Do others periodically suffer from muscles seizing

> and pain? It has been a

> symptom of mine since early on.

Do you mean muscle cramps? They wake me up at night

and make it difficiult for me to sleep at times due to

the pain.

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[Guest guest]

Vivian

Aspirin is a no-no for those with mito. Taking one a day for heart

health is suppose to be okay.

I don't know what to tell you to do for this kind of muscle pain. I

have had this from the beginning. I do take a muscle relaxant twice a

day and when the cramping is bad, I take quinine. This was prescribed

by my neuro. My son took it when he was real little and took it for

years. I use mine only when the cramping is severe. I try to prevent

as much as possible.

If your doctor has not ordered labs to check on levels of magnesium,

potassium, phosphorus and calcium. These are the ones that need to be

in balance and are also the ones that mito kidneys like to spill. I

have also found that I do better with a small amount of sodium to get

it closer to a normal value. I don't cook with salt and rarely use it,

so mine has always been low.

Good luck finding something that works for you. I can usually deal

with the cramps and pain during the day, but hate the ones at night

that make me get up.

laurie

> Do others periodically suffer from muscles seizing and pain? It has been a

> symptom of mine since early on. Started care under a new endocronoligist a

> year ago due to a move.

> Recently, I had terrible muscle seizing and pain that lasted 4-5 days. My

> previous endo's had prescribed muscle relaxers and ketoralac for me. I needed

> these rx renewed and the dr suggested I try aspirin! What do others do for

> muscle seizing and pain....? Thanks Vivian

>

>

>

[Guest guest]

Vivian,

good to hear from you.

I was told by the doc in Mequon who diagnosed by sister, me, and my son that we

should not take aspirin but take Advil or its generic or Tylenol. He said it has

something to do with the MELAS.

Then again I know some others who have said that they cannot take Advil or

Tylenol and get bad reactions to it. I actually have never had aspirin as a kid

or adult but Tylenol and more recently Advil or their generics so do not know if

I react to aspirin or not.

If possible I would try to get hold of the docs you had before who know you and

your particular disorder and how you react to certain drugs to see what they

say.

Janet Sample

muscle seizing and pain

Do others periodically suffer from muscles seizing and pain? It has been a

symptom of mine since early on. Started care under a new endocronoligist a

year ago due to a move.

Recently, I had terrible muscle seizing and pain that lasted 4-5 days. My

previous endo's had prescribed muscle relaxers and ketoralac for me. I needed

these rx renewed and the dr suggested I try aspirin! What do others do for

muscle seizing and pain....? Thanks Vivian

[Guest guest]

I have no trouble with aspirin (take it for my heart) but it is certainly not

sufficient to deal with the pain and won't eliminate the seizing. It makes

perfect sense to me that the muscles be engaged after all the diagnosis for

Melas is in part given after examination of the muscle and the prescence of

ragged red fibers. Unfortunately, I don't think this gentleman read any of the

literature I gave him nor did any research on his own. Vivian

[Guest guest]

which do you feel is more helpful Laurie...the quinine or the muscle relaxer?

The periodic cramping which doesn't last very long I can grit my teeth and

bear it is the seizing that lasts several days at a time (this last one was 5

days) and not only leaves me in pain but my muscles weaker. Thanks. Vivian

[Guest guest]

thanks for that information...it is funny the cramps I can almost deal with

the seizing is very difficult especially as the muscles seem weaker after an

episode like that. I am not sure if I will stay with this endo (probably not) I

was assertive with him and descriptive with him and he didn't seem to

empathize with me at all....seemed to have that " regular diabetic attitude " that

you

hear about. I may well take this to my internal medicine dr and ask for

quinine and muscle relaxers from him....is there a specific dosage or brand?

Thanks Vivian

[Guest guest]

Vivian

I would probably say quinine, but the muscle relaxant probably

prevents some of them from occuring. I had an episode of cramping in

every muscle in my body (maybe not actually cramps, but as you said,

seizing of the muscles. It was extremely painful and very difficult to

get across the hall to my disk to take some quinine. It did work in

about an hour. My muscles were sore for days, but not painful.

laurie

> which do you feel is more helpful Laurie...the quinine or the muscle relaxer?

> The periodic cramping which doesn't last very long I can grit my teeth and

> bear it is the seizing that lasts several days at a time (this last one was 5

> days) and not only leaves me in pain but my muscles weaker. Thanks. Vivian

>

>

>

[Guest guest]

up until this move I had 2 fabulous endo's who really worked with me and

other drs treating mito disorders....I have to admit they were younger than this

current endo and maybe that is a part of it....they were on the internet and

more aware of mito diabetes etc. I am just having a bad time with this...most

days I can cope (after 13 yrs) with this " syndrome " but to have a dr behave

with indifference it just brings up all sorts of things....Vivian

[Guest guest]

Vivian

There are various muscle relaxants, I take Flexeril, but this makes

some sleepy. The quinine, I think, is just a standard dose up to twice

a day. The quinine is used for those with Parkinson's for the same

kind of thing.

Good luck with finding a good endo. - they do tend to think only in

terms of normal diabetes. I work with my neuro for most things.

laurie

> thanks for that information...it is funny the cramps I can almost deal with

> the seizing is very difficult especially as the muscles seem weaker after an

> episode like that. I am not sure if I will stay with this endo (probably not)

I

> was assertive with him and descriptive with him and he didn't seem to

> empathize with me at all....seemed to have that " regular diabetic attitude "

that you

> hear about. I may well take this to my internal medicine dr and ask for

> quinine and muscle relaxers from him....is there a specific dosage or brand?

> Thanks Vivian

>

>

>

[Guest guest]

Vivian

I understand what you are saying. Just knowing a doctor is aware of

you and caring is a wonderful security blanket, even when they may not

be able to help very much.

laurie

> up until this move I had 2 fabulous endo's who really worked with me and

> other drs treating mito disorders....I have to admit they were younger than

this

> current endo and maybe that is a part of it....they were on the internet and

> more aware of mito diabetes etc. I am just having a bad time with this...most

> days I can cope (after 13 yrs) with this " syndrome " but to have a dr behave

> with indifference it just brings up all sorts of things....Vivian

>

>

>

[Guest guest]

thanks for all your help Laurie Vivian