Re: neck pain and muscle problems

[Guest guest]

I just wanted to say that this is a terrible problem for me as well... there

was nothing the PT could do... I now go for botox injection into the neck &

shoulders.... it hurts like h*ll when it's done, but it's been wonderfully

effective... Unfortunately I still have one group of muscles in my chest that

still spasm & there is nothing that they can do for those botox wise, so I am

still stuck with the klonopin or pain meds for that one I don't know if

this is terribly common for mito, but in my case it absolutely is...

Chris

In a message dated 12/27/2004 6:03:41 PM Eastern Standard Time,

writes:

Subject: neck pain and muscle problems

Happy Holidays Friends,

I hope everyone has had a healthy and safe Holiday Season. I have a

question to ask about muscle and neck pain. My Physical Therapist,

who I have been seeing for several months now, asked me to post a

question to all of you. He wants to know if many of you have had on

going problems with muscle spasms and neck trouble. I have been

getting muscle massage, ultrasound and manipulations done 3 times a

week for months and he can't believe that my muscles can be so tight&

in spasm, and my neck joints can be so locked up if I miss just one

session he is unable to manipulate my neck joint to turn my head to

the side or over my shoulder. He was wondering if this is a common

Mito Problem and what you might have done to rectify the problems. I

am in the process of getting a traction machine for home to help

loosen up the neck joints that are causing me awful heahaches and

neck pain. I don't want to live on pain meds, but sometimes I am

unable to get out of bed when the pain is so bad. I know you all can

relate to that one-------kids and spouses still need us, so no matter

how sick or in pain we are we do what we have to do-----right??? If

any of you have any suggestions I can pass on to my PT I would

appreciate it greatly. I am taking Skelaxin a muscle relaxer and

Ultram a non-narcotic pain medicine and there are some days that they

don't help at all.

Stay Well,

Hugs,

[Guest guest]

Hi , sorry about your neck pain. I too have neck pain and

strongly agree with the massage regularly. It's great that you have

a PT working with you as well. I'm not a big fan of traction. I've

had it in the past (both manual and with a machine) and it made

things worse. I've heard that with some neuromuscular diseases

stretching of any kind can actually lead to more contraction of the

muscle. That would mean a contracted muscle could be stretched to

the point of damage. Do you get your massages from a licensed

massage therapist that is trained to deal with neuromuscular

disease ? It makes a difference ! Mine is not relaxing, but she

works the knots out so I have more flexibility. I'm personally not

convinced that ultrasound works. I think it's a scam, but that's

just my opinion. Are you getting your manipulation from a

chiropractor ? Is he / she familiar with neuromuscular disease ?

Again, I'd be concerned that although you have short-term relief,

they may ultimately be doing more harm than good. I see an MD in

Physical Medicine that deals specifically with spines. I would

recommend a second opinion at least before I'd continue with

treatment that isn't working. Do you have an MDA doc that you

see ? You might want to get one if you don't. I would think that

they would have much better insight as to what techniques might

help. I would also recommend that you drink plenty of extra water

on the day of the massage or PT (makes a huge difference) and also

that you avoid alcohol and caffeine since it causes dehydration.

That can be a big factor in the treatment not being effective !

Best of luck,

Bug

[Guest guest]

Hi ,

Like you, I have ongoing problems with muscle spasms in my neck that

don't seem to respond to any treatment. They don't ever let up, and

have caused disc compression and nerve damage. I've tried massage,

physical therapy, chiropractic adjustments, ultrasound, traction,

narcotic pain killers, muscle relaxers (flexeril, skelaxin and

valium), and accupuncture. One of my neurologists has suggested

steroid injections, but I'm not sure I want to go that route again.

I've just added them to the list of mito problems that don't get

better, and go on about my business. I hope you find something that

works for you soon!

Cheers,

Theresa

>

> Happy Holidays Friends,

> I hope everyone has had a healthy and safe Holiday Season. I have a

> question to ask about muscle and neck pain. My Physical Therapist,

> who I have been seeing for several months now, asked me to post a

> question to all of you. He wants to know if many of you have had on

> going problems with muscle spasms and neck trouble. I have been

> getting muscle massage, ultrasound and manipulations done 3 times a

> week for months and he can't believe that my muscles can be so

tight&

> in spasm, and my neck joints can be so locked up if I miss just one

> session he is unable to manipulate my neck joint to turn my head to

> the side or over my shoulder. He was wondering if this is a common

> Mito Problem and what you might have done to rectify the problems.

I

> am in the process of getting a traction machine for home to help

> loosen up the neck joints that are causing me awful heahaches and

> neck pain. I don't want to live on pain meds, but sometimes I am

> unable to get out of bed when the pain is so bad. I know you all

can

> relate to that one-------kids and spouses still need us, so no

matter

> how sick or in pain we are we do what we have to do-----right??? If

> any of you have any suggestions I can pass on to my PT I would

> appreciate it greatly. I am taking Skelaxin a muscle relaxer and

> Ultram a non-narcotic pain medicine and there are some days that

they

> don't help at all.

>

> Stay Well,

> Hugs,

>

[Guest guest]

I too have similar problems. I just went through a session of PT and

the PT thought I was nuts when I said the stretching exercises were

causing more spasms. We didn't come up with a solutions other than mild

strength training of the back in general to try to give added support to

the neck area. At least that didn't make things worse like the

stretching did. I would make sure with an MRI that you don't have any

bone spurs in the neck area before you try the traction. I also have

bone spurs in the neck and was told NEVER to allow anyone to do traction

on my neck, that I would most likely end up a quadriplegic if I allowed

it. Please be careful.

mitomomtoo wrote:

>Happy Holidays Friends,

>I hope everyone has had a healthy and safe Holiday Season. I have a

>question to ask about muscle and neck pain. My Physical Therapist,

>who I have been seeing for several months now, asked me to post a

>question to all of you. He wants to know if many of you have had on

>going problems with muscle spasms and neck trouble. I have been

>getting muscle massage, ultrasound and manipulations done 3 times a

>week for months and he can't believe that my muscles can be so tight&

>in spasm, and my neck joints can be so locked up if I miss just one

>session he is unable to manipulate my neck joint to turn my head to

>the side or over my shoulder. He was wondering if this is a common

>Mito Problem and what you might have done to rectify the problems. I

>am in the process of getting a traction machine for home to help

>loosen up the neck joints that are causing me awful heahaches and

>neck pain. I don't want to live on pain meds, but sometimes I am

>unable to get out of bed when the pain is so bad. I know you all can

>relate to that one-------kids and spouses still need us, so no matter

>how sick or in pain we are we do what we have to do-----right??? If

>any of you have any suggestions I can pass on to my PT I would

>appreciate it greatly. I am taking Skelaxin a muscle relaxer and

>Ultram a non-narcotic pain medicine and there are some days that they

>don't help at all.

>

>Stay Well,

>Hugs,

>

>

>

>

>

>

>

>Medical advice, information, opinions, data and statements contained herein are

not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

>Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

I have neck and upper back issues. I can turn my head to look over my

shoulder to back up the car or put my arm on the back of a chair and the

spasms will be severe. It is like having a stiff neck. I was taught how to

stretch my neck muscles and start immediately. That way it only takes a few

days to have it feel better. For me, it was the holding and then pushing

futher that does the trick. I also get spasms of pain in my upper back,

neck, jaw for no reasons.

I don't know how common this is in mito, but it is similar to that which I

get in my other muscles throughout the body. I take a muscle relaxant all

the time and then will take Quinine if the stretching doesn't improve it by

the next day. The Quinine works well for me, but gives me loose bowels, so I

use it only when it is really needed.

I hope this helps, as I know what kind of pain you are in.

laurie

>

> Reply-To:

> Date: Mon, 27 Dec 2004 19:06:47 -0000

> To:

> Subject: neck pain and muscle problems

>

>

> Happy Holidays Friends,

> I hope everyone has had a healthy and safe Holiday Season. I have a

> question to ask about muscle and neck pain. My Physical Therapist,

> who I have been seeing for several months now, asked me to post a

> question to all of you. He wants to know if many of you have had on

> going problems with muscle spasms and neck trouble. I have been

> getting muscle massage, ultrasound and manipulations done 3 times a

> week for months and he can't believe that my muscles can be so tight&

> in spasm, and my neck joints can be so locked up if I miss just one

> session he is unable to manipulate my neck joint to turn my head to

> the side or over my shoulder. He was wondering if this is a common

> Mito Problem and what you might have done to rectify the problems. I

> am in the process of getting a traction machine for home to help

> loosen up the neck joints that are causing me awful heahaches and

> neck pain. I don't want to live on pain meds, but sometimes I am

> unable to get out of bed when the pain is so bad. I know you all can

> relate to that one-------kids and spouses still need us, so no matter

> how sick or in pain we are we do what we have to do-----right??? If

> any of you have any suggestions I can pass on to my PT I would

> appreciate it greatly. I am taking Skelaxin a muscle relaxer and

> Ultram a non-narcotic pain medicine and there are some days that they

> don't help at all.

>

> Stay Well,

> Hugs,

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

Neck pain has been a big issue for me for years. It is partly due to

scoliosis and kyphosis combined with muscle weakness and resulting muscle

spasms, but is more complicated in origin. I have to spend at least half the

day lying down to rest the muscles in order to have some tolerable upright

time. If I spend several days mostly lying down, then I can have more up

time for several days before the neck gets really bad again. I don't get PT

on my neck, as it has not helped in the past, but I just wanted to second

Bug's advice on fluids. If I push fluids constantly it definitely helps neck

pain. Fluids are my first " treatment " when it gets really bad.

B

_____

From: venomvw

Sent: Monday, December 27, 2004 1:36 PM

To:

Subject: Re: neck pain and muscle problems

Hi , sorry about your neck pain. I too have neck pain and

strongly agree with the massage regularly. It's great that you have

a PT working with you as well. I'm not a big fan of traction. I've

had it in the past (both manual and with a machine) and it made

things worse. I've heard that with some neuromuscular diseases

stretching of any kind can actually lead to more contraction of the

muscle. That would mean a contracted muscle could be stretched to

the point of damage. Do you get your massages from a licensed

massage therapist that is trained to deal with neuromuscular

disease ? It makes a difference ! Mine is not relaxing, but she

works the knots out so I have more flexibility. I'm personally not

convinced that ultrasound works. I think it's a scam, but that's

just my opinion. Are you getting your manipulation from a

chiropractor ? Is he / she familiar with neuromuscular disease ?

Again, I'd be concerned that although you have short-term relief,

they may ultimately be doing more harm than good. I see an MD in

Physical Medicine that deals specifically with spines. I would

recommend a second opinion at least before I'd continue with

treatment that isn't working. Do you have an MDA doc that you

see ? You might want to get one if you don't. I would think that

they would have much better insight as to what techniques might

help. I would also recommend that you drink plenty of extra water

on the day of the massage or PT (makes a huge difference) and also

that you avoid alcohol and caffeine since it causes dehydration.

That can be a big factor in the treatment not being effective !

Best of luck,

Bug

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail

is entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with

their physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

[Guest guest]

, Barbara, etc.

I forgot to mention that when I am sitting, I try to have a high enough back

to support my head. Since it is not in good alignment in some chairs, I use

one of the " U " shaped pillows are sold for using in the car. You can also

get pillows shaped the same that have gel packs that can be warmed or

cooled.

laurie

>

> Reply-To:

> Date: Mon, 27 Dec 2004 14:59:42 -0600

> To: >

> Subject: RE: Re: neck pain and muscle problems

>

> Neck pain has been a big issue for me for years. It is partly due to

> scoliosis and kyphosis combined with muscle weakness and resulting muscle

> spasms, but is more complicated in origin. I have to spend at least half the

> day lying down to rest the muscles in order to have some tolerable upright

> time. If I spend several days mostly lying down, then I can have more up

> time for several days before the neck gets really bad again. I don't get PT

> on my neck, as it has not helped in the past, but I just wanted to second

> Bug's advice on fluids. If I push fluids constantly it definitely helps neck

> pain. Fluids are my first " treatment " when it gets really bad.

>

>

>

> B

>

>

>

> _____

>

> From: venomvw

> Sent: Monday, December 27, 2004 1:36 PM

> To:

> Subject: Re: neck pain and muscle problems

>

>

>

>

> Hi , sorry about your neck pain. I too have neck pain and

> strongly agree with the massage regularly. It's great that you have

> a PT working with you as well. I'm not a big fan of traction. I've

> had it in the past (both manual and with a machine) and it made

> things worse. I've heard that with some neuromuscular diseases

> stretching of any kind can actually lead to more contraction of the

> muscle. That would mean a contracted muscle could be stretched to

> the point of damage. Do you get your massages from a licensed

> massage therapist that is trained to deal with neuromuscular

> disease ? It makes a difference ! Mine is not relaxing, but she

> works the knots out so I have more flexibility. I'm personally not

> convinced that ultrasound works. I think it's a scam, but that's

> just my opinion. Are you getting your manipulation from a

> chiropractor ? Is he / she familiar with neuromuscular disease ?

> Again, I'd be concerned that although you have short-term relief,

> they may ultimately be doing more harm than good. I see an MD in

> Physical Medicine that deals specifically with spines. I would

> recommend a second opinion at least before I'd continue with

> treatment that isn't working. Do you have an MDA doc that you

> see ? You might want to get one if you don't. I would think that

> they would have much better insight as to what techniques might

> help. I would also recommend that you drink plenty of extra water

> on the day of the massage or PT (makes a huge difference) and also

> that you avoid alcohol and caffeine since it causes dehydration.

> That can be a big factor in the treatment not being effective !

> Best of luck,

>

> Bug

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail

> is entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

>

>

>

>

[Guest guest]

We have tried so many different high back chairs, U pillows, gel packs and

other devices that I can't even count. I'm glad you get some help that way,

but for various reasons none of them work for me.

B

_____

From: Laureta Fitzgerald

Sent: Monday, December 27, 2004 3:49 PM

To:

Subject: Re: Re: neck pain and muscle problems

, Barbara, etc.

I forgot to mention that when I am sitting, I try to have a high enough back

to support my head. Since it is not in good alignment in some chairs, I use

one of the " U " shaped pillows are sold for using in the car. You can also

get pillows shaped the same that have gel packs that can be warmed or

cooled.

laurie

>

> Reply-To:

> Date: Mon, 27 Dec 2004 14:59:42 -0600

> To: >

> Subject: RE: Re: neck pain and muscle problems

>

> Neck pain has been a big issue for me for years. It is partly due to

> scoliosis and kyphosis combined with muscle weakness and resulting muscle

> spasms, but is more complicated in origin. I have to spend at least half

the

> day lying down to rest the muscles in order to have some tolerable upright

> time. If I spend several days mostly lying down, then I can have more up

> time for several days before the neck gets really bad again. I don't get

PT

> on my neck, as it has not helped in the past, but I just wanted to second

> Bug's advice on fluids. If I push fluids constantly it definitely helps

neck

> pain. Fluids are my first " treatment " when it gets really bad.

>

>

>

> B

>

>

>

> _____

>

> From: venomvw

> Sent: Monday, December 27, 2004 1:36 PM

> To:

> Subject: Re: neck pain and muscle problems

>

>

>

>

> Hi , sorry about your neck pain. I too have neck pain and

> strongly agree with the massage regularly. It's great that you have

> a PT working with you as well. I'm not a big fan of traction. I've

> had it in the past (both manual and with a machine) and it made

> things worse. I've heard that with some neuromuscular diseases

> stretching of any kind can actually lead to more contraction of the

> muscle. That would mean a contracted muscle could be stretched to

> the point of damage. Do you get your massages from a licensed

> massage therapist that is trained to deal with neuromuscular

> disease ? It makes a difference ! Mine is not relaxing, but she

> works the knots out so I have more flexibility. I'm personally not

> convinced that ultrasound works. I think it's a scam, but that's

> just my opinion. Are you getting your manipulation from a

> chiropractor ? Is he / she familiar with neuromuscular disease ?

> Again, I'd be concerned that although you have short-term relief,

> they may ultimately be doing more harm than good. I see an MD in

> Physical Medicine that deals specifically with spines. I would

> recommend a second opinion at least before I'd continue with

> treatment that isn't working. Do you have an MDA doc that you

> see ? You might want to get one if you don't. I would think that

> they would have much better insight as to what techniques might

> help. I would also recommend that you drink plenty of extra water

> on the day of the massage or PT (makes a huge difference) and also

> that you avoid alcohol and caffeine since it causes dehydration.

> That can be a big factor in the treatment not being effective !

> Best of luck,

>

> Bug

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained

herein

> are not necessarily those of the list moderators. The author of this e

mail

> is entirely responsible for its content. List members are reminded of

their

> responsibility to evaluate the content of the postings and consult with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the

attack.

>

>

>

>

>

>

>

>

[Guest guest]

Hi,

Well, add me to the long list of people who are trying to deal with muscle pain

and spasms in the neck and shoulder areas.

It is horrible.!! I have tried many different things as well, and nothing works.

The trigger point injections did help a bit, but not long enough to continue

that route. And this way about 10 yrs. ago.

I have no advice to give to anyone. I wish I did. I have tried things like PT,

ultrasound, muscle massage, etc..nothing worked for me.

For those of you who do get relief from using a U pillow, gel packs, bengay,

etc.. I am so happy for you, b/c it is pure agony.

Has anyone who is experiencing neck and shoulder pain and muscle spasms been in

any kind of accident years before? I am just wondering if some of the people

have pre-condition that is maybe causing the muscles to flare up.

Hugs,

Ann-Marie

neck pain and muscle problems

Happy Holidays Friends,

I hope everyone has had a healthy and safe Holiday Season. I have a

question to ask about muscle and neck pain. My Physical Therapist,

who I have been seeing for several months now, asked me to post a

question to all of you. He wants to know if many of you have had on

going problems with muscle spasms and neck trouble. I have been

getting muscle massage, ultrasound and manipulations done 3 times a

week for months and he can't believe that my muscles can be so tight&

in spasm, and my neck joints can be so locked up if I miss just one

session he is unable to manipulate my neck joint to turn my head to

the side or over my shoulder. He was wondering if this is a common

Mito Problem and what you might have done to rectify the problems. I

am in the process of getting a traction machine for home to help

loosen up the neck joints that are causing me awful heahaches and

neck pain. I don't want to live on pain meds, but sometimes I am

unable to get out of bed when the pain is so bad. I know you all can

relate to that one-------kids and spouses still need us, so no matter

how sick or in pain we are we do what we have to do-----right??? If

any of you have any suggestions I can pass on to my PT I would

appreciate it greatly. I am taking Skelaxin a muscle relaxer and

Ultram a non-narcotic pain medicine and there are some days that they

don't help at all.

Stay Well,

Hugs,

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

[Guest guest]

I too have had severe neck problems. They were the first mito symptoms

to appear, but being rear-ended caused them to really flair. Always,

though, if I could lie down for a while they would diminish. After 10

years of getting a great variety of treatment, I concluded that not

much would help. 10 years after that I started to do some strength

training for general purposes, and was very surprised that my neck

benefited also. I NEVER did any for the neck, but I think that the

better posture and better arm/back strength helped put less strain on

my neck. I totally agree with - traction and stretching never

helped me, and I felt might have made things worse. I never was helped

by acupuncture or manipulation either. I bought a hydrocolator to do

at home (same as the PT's use - not expensive), and the heat was ok for

some temporary relief, but a heating pad seemed just as good. I found

the ultrasound, and generally going to PT a drag on my time and not

worth the effort. In restrospect, I believe that watching my posture

and keeping my head in the proper neutral position, along with

strengthening my entire back muscles are helping me the most. I still

have some pain 24/7, but it is do-able now.

And, btw, I probably did not see any real improvement that I could

connect to the strength work for a couple of months.

Good luck.

Regards,

Sunny

> I too have similar problems.  I just went through a session of PT and

> the PT thought I was nuts when I said the stretching exercises were

> causing more spasms.  We didn't come up with a solutions other than

> mild

> strength training of the back in general to try to give added support

> to

> the neck area.  At least that didn't make things worse like the

> stretching did.  I would make sure with an MRI that you don't have any

> bone spurs in the neck area before you try the traction. I also have

> bone spurs in the neck and was told NEVER to allow anyone to do

> traction

> on my neck, that I would most likely end up a quadriplegic if I

> allowed

> it.  Please be careful.

>

>

>

> mitomomtoo wrote:

>

> >Happy Holidays Friends,

> >I hope everyone has had a healthy and safe Holiday Season. I have a

> >question to ask about muscle and neck pain. My Physical Therapist,

> >who I have been seeing for several months now, asked me to post a

> >question to all of you. He wants to know if many of you have had on

> >going problems with muscle spasms and neck trouble.  I have been

> >getting muscle massage, ultrasound and manipulations done 3 times a

> >week for months and he can't believe that my muscles can be so tight&

> >in spasm, and my neck joints can be so locked up if I miss just one

> >session he is unable to manipulate my neck joint to turn my head to

> >the side or over my shoulder. He was wondering if this is a common

> >Mito Problem and what you might have done to rectify the problems.  I

> >am in the process of getting a traction machine for home to help

> >loosen up the neck joints that are causing me awful heahaches and

> >neck pain.  I don't want to live on pain meds, but sometimes I am

> >unable to get out of bed when the pain is so bad. I know you all can

> >relate to that one-------kids and spouses still need us, so no matter

> >how sick or in pain we are we do what we have to do-----right??? If

> >any of you have any suggestions I can pass on to my PT I would

> >appreciate it greatly. I am taking Skelaxin a muscle relaxer and

> >Ultram a non-narcotic pain medicine and there are some days that they

> >don't help at all.

> >

> >Stay Well,

> >Hugs,

> >

> >

> >

> >

> >

> >

> >

> >Medical advice, information, opinions, data and statements contained

> herein are not necessarily those of the list moderators. The author of

> this e mail is entirely responsible for its content. List members are

> reminded of their responsibility to evaluate the content of the

> postings and consult with their physicians regarding changes in their

> own treatment.

> >

> >Personal attacks are not permitted on the list and anyone who sends

> one is automatically moderated or removed depending on the severity of

> the attack.

> >

> >

[Guest guest]

Ann-Marie

I was in an accident about a year ago thanks to a deer, but my problems and

diagnosis came well before that.

I mentioned stretching helps me. It has to be gentle and immediately. If I

wait for a PT appointment, it is too late to do much good.

laurie

>

> Reply-To:

> Date: Mon, 27 Dec 2004 20:04:09 -0500

> To: >

> Subject: Re: neck pain and muscle problems

>

> Hi,

>

> Well, add me to the long list of people who are trying to deal with muscle

> pain and spasms in the neck and shoulder areas.

>

> It is horrible.!! I have tried many different things as well, and nothing

> works. The trigger point injections did help a bit, but not long enough to

> continue that route. And this way about 10 yrs. ago.

>

> I have no advice to give to anyone. I wish I did. I have tried things like PT,

> ultrasound, muscle massage, etc..nothing worked for me.

> For those of you who do get relief from using a U pillow, gel packs, bengay,

> etc.. I am so happy for you, b/c it is pure agony.

>

> Has anyone who is experiencing neck and shoulder pain and muscle spasms been

> in any kind of accident years before? I am just wondering if some of the

> people have pre-condition that is maybe causing the muscles to flare up.

>

> Hugs,

> Ann-Marie

>

> neck pain and muscle problems

>

>

>

> Happy Holidays Friends,

> I hope everyone has had a healthy and safe Holiday Season. I have a

> question to ask about muscle and neck pain. My Physical Therapist,

> who I have been seeing for several months now, asked me to post a

> question to all of you. He wants to know if many of you have had on

> going problems with muscle spasms and neck trouble. I have been

> getting muscle massage, ultrasound and manipulations done 3 times a

> week for months and he can't believe that my muscles can be so tight&

> in spasm, and my neck joints can be so locked up if I miss just one

> session he is unable to manipulate my neck joint to turn my head to

> the side or over my shoulder. He was wondering if this is a common

> Mito Problem and what you might have done to rectify the problems. I

> am in the process of getting a traction machine for home to help

> loosen up the neck joints that are causing me awful heahaches and

> neck pain. I don't want to live on pain meds, but sometimes I am

> unable to get out of bed when the pain is so bad. I know you all can

> relate to that one-------kids and spouses still need us, so no matter

> how sick or in pain we are we do what we have to do-----right??? If

> any of you have any suggestions I can pass on to my PT I would

> appreciate it greatly. I am taking Skelaxin a muscle relaxer and

> Ultram a non-narcotic pain medicine and there are some days that they

> don't help at all.

>

> Stay Well,

> Hugs,

>

>

>

>

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

[Guest guest]

Well add me to the long list. I began having horrible headaches when I was 7

years old (I'm now 55). In college I finally found the only med that works

for me, namely Fiorinal, which is a compound of aspirin, caffeine, and

butalbitol (a barbiturate). I start every day with just one tab, and usually

manage to get through the day on just one more. But for some years I was

taking several, sometimes ten, a day. This was not good, as the barbiturate

is of course addictive and leads to rebound headache cycling. Hence my

continual struggle to keep the amount low. Unfortunately whenever I try to

go without, I wind up having to take more, later. I HAVE tried to tough it

out without any at all, for a few weeks, on several occasions, to be sure it

wasn't ENTIRELY just rebound effects.

On the rare occasions when I have run out of it, I have had a headache that

is just entirely beyond description. I will kill anyone who threatens my

supply of this stuff (HALF kidding).

Besides Fiorinal what works for me when the headache is bad, is total quiet,

complete darkness, and lying motionless in bed. It's been called tension

headache, and I have no evidence to call it migraine, but I could be wrong.

It generally feels better when my neck is arched so my head is as far back

as I can get it, but I worry whether that is harmful long-term. Believe it

or not, I've fallen asleep (doped by Fiorinal during an attack) on my back

with my head hanging completely over the side, backwards, which is actually

comfortable in a strange way.

I've also found that heat helps, on my neck, but it takes a long while to

get some improvement. I've never had a neck injury. There's a lot of

clicking etc. whenever I tilt my head back or to the side. Although this

helps a bit with the pain, I've also learned that doing too much of this

makes it much worse eventually, so I try to not do it.

My mito appears to come from a spontaneous mutation. Too bad, for many years

(mid-70s through 1990, I think) Fiorinal also contained phenacetin, which

was eventually removed when it was found to cause cancer, and LIVER

problems, among other things.

Classic symptoms of exercise intolerance etc. have been present most of my

adult life, but really severe only in the last five years or so. No idea

whether the headache is mito-related, but I do have large lipomas

(apparently a side effect of my mito) all over my neck and back of head (as

well as shoulders and upper back), and I also have medium deafness. But the

lipomas weren't there when the headaches began, so who knows?

Steve D.

[Guest guest]

Well add me to the long list. I began having horrible headaches when I was 7

years old (I'm now 55). In college I finally found the only med that works

for me, namely Fiorinal, which is a compound of aspirin, caffeine, and

butalbitol (a barbiturate). I start every day with just one tab, and usually

manage to get through the day on just one more. But for some years I was

taking several, sometimes ten, a day. This was not good, as the barbiturate

is of course addictive and leads to rebound headache cycling. Hence my

continual struggle to keep the amount low. Unfortunately whenever I try to

go without, I wind up having to take more, later. I HAVE tried to tough it

out without any at all, for a few weeks, on several occasions, to be sure it

wasn't ENTIRELY just rebound effects.

On the rare occasions when I have run out of it, I have had a headache that

is just entirely beyond description. I will kill anyone who threatens my

supply of this stuff (HALF kidding).

Besides Fiorinal what works for me when the headache is bad, is total quiet,

complete darkness, and lying motionless in bed. It's been called tension

headache, and I have no evidence to call it migraine, but I could be wrong.

It generally feels better when my neck is arched so my head is as far back

as I can get it, but I worry whether that is harmful long-term. Believe it

or not, I've fallen asleep (doped by Fiorinal during an attack) on my back

with my head hanging completely over the side, backwards, which is actually

comfortable in a strange way.

I've also found that heat helps, on my neck, but it takes a long while to

get some improvement. I've never had a neck injury. There's a lot of

clicking etc. whenever I tilt my head back or to the side. Although this

helps a bit with the pain, I've also learned that doing too much of this

makes it much worse eventually, so I try to not do it.

My mito appears to come from a spontaneous mutation. Too bad, for many years

(mid-70s through 1990, I think) Fiorinal also contained phenacetin, which

was eventually removed when it was found to cause cancer, and LIVER

problems, among other things.

Classic symptoms of exercise intolerance etc. have been present most of my

adult life, but really severe only in the last five years or so. No idea

whether the headache is mito-related, but I do have large lipomas

(apparently a side effect of my mito) all over my neck and back of head (as

well as shoulders and upper back), and I also have medium deafness. But the

lipomas weren't there when the headaches began, so who knows?

Steve D.

[Guest guest]

Steve

You might want to see a headache specialist. Some of the classic signs of a

migraine are the need to have quiet, darkness, and a motionless environment.

My son (now 30, with mito) has been dealing with severe migraines since he

was very little and has been hospitalized in a head pain unit of a hospital

on several occasions. His migraine is not a classic type, as he has no aura

and they are related to body stressors (change of weather, lack of sleep,

anxiety, etc.) in many cases. It has made his life very different as he has

spend years unable to function in society. He also has the tension headache,

but it is the result, not the cause of the headaches. The magic for him has

been the hospitalizations and coming home with a migraine " cocktail " that is

prevenative. His migraines also come in groups, similar to cluster

headaches, but actually felt to be cluster type atypical migraines. He has

always had meds in case he gets a break through migraine. He had been very

fortunate to have had the expertise the leading migraine specialist in the

world so close to us. The proventative meds are meds used for other things

and given in groups of lower doses, rather than hugh doses of one thing. He

also has to eliminate certain foods and live a healthy lifestyle, but he

functions well as a result of his treatment.

laurie

>

> Reply-To:

> Date: Wed, 29 Dec 2004 00:51:23 -0500

> To: >

> Subject: Re: neck pain and muscle problems

>

> Well add me to the long list. I began having horrible headaches when I was 7

> years old (I'm now 55). In college I finally found the only med that works

> for me, namely Fiorinal, which is a compound of aspirin, caffeine, and

> butalbitol (a barbiturate). I start every day with just one tab, and usually

> manage to get through the day on just one more. But for some years I was

> taking several, sometimes ten, a day. This was not good, as the barbiturate

> is of course addictive and leads to rebound headache cycling. Hence my

> continual struggle to keep the amount low. Unfortunately whenever I try to

> go without, I wind up having to take more, later. I HAVE tried to tough it

> out without any at all, for a few weeks, on several occasions, to be sure it

> wasn't ENTIRELY just rebound effects.

>

> On the rare occasions when I have run out of it, I have had a headache that

> is just entirely beyond description. I will kill anyone who threatens my

> supply of this stuff (HALF kidding).

>

> Besides Fiorinal what works for me when the headache is bad, is total quiet,

> complete darkness, and lying motionless in bed. It's been called tension

> headache, and I have no evidence to call it migraine, but I could be wrong.

> It generally feels better when my neck is arched so my head is as far back

> as I can get it, but I worry whether that is harmful long-term. Believe it

> or not, I've fallen asleep (doped by Fiorinal during an attack) on my back

> with my head hanging completely over the side, backwards, which is actually

> comfortable in a strange way.

>

> I've also found that heat helps, on my neck, but it takes a long while to

> get some improvement. I've never had a neck injury. There's a lot of

> clicking etc. whenever I tilt my head back or to the side. Although this

> helps a bit with the pain, I've also learned that doing too much of this

> makes it much worse eventually, so I try to not do it.

>

> My mito appears to come from a spontaneous mutation. Too bad, for many years

> (mid-70s through 1990, I think) Fiorinal also contained phenacetin, which

> was eventually removed when it was found to cause cancer, and LIVER

> problems, among other things.

>

> Classic symptoms of exercise intolerance etc. have been present most of my

> adult life, but really severe only in the last five years or so. No idea

> whether the headache is mito-related, but I do have large lipomas

> (apparently a side effect of my mito) all over my neck and back of head (as

> well as shoulders and upper back), and I also have medium deafness. But the

> lipomas weren't there when the headaches began, so who knows?

>

> Steve D.

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail is

> entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with their

> physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>