Stiff Neck

[Guest guest]

Laurel,

As you may or may not remember, I go to the UCSF ALS Research Center every 6

months. I always have to fill out the same questionnaire and the first

question is " do you have pain in your neck or back? " So, I figured that is

part of ALS/PLS, otherwise, why would it be on the questionnaire. When I do

get neck pain I always think it's because I've slept wrong and usually a

massage will take care of it.

Just my opinion...nothing more than opinion.

[Guest guest]

Welcome to the group is nice to meet you sorry that we have to meet

here. I am the caregiver to my husband who has PLS. or ALS. Not sure anyone

knows with these illnesses. But feel free to ask or say anything to the group

they are all a bunch of great and very smart folks. I am sure you will be

welcomed with open arms. So here is my welcome. Shirley (Michigan)

[Guest guest]

Laurel,

I have a chronic stiff neck I attribute it to my poor sitting posture at

the computer and while writing at work. I have had some bad falls that

contributed to the problem, also. Have had to wear a collar for two

weeks following one of them. That did help. I usually get a sharp pain

just below the shoulder blade on my left after 8 hours of doing this

type of stuff. Hurts like being stabbed. A sharp, burning sensation. I

know it's a muscle cramping because I can massage it away. However, the

first few minutes of massage hurt. There is a noticeable lump that has

to be loosened. This is a daily occurrence with some days not as bad as

others. It's been with me for at least 4 months, maybe longer. My

glasses don't help much, either. They are a varilux lens, meaning no

lines, and I have to hold my head back to see the screen or what I am

writing. This does not help the problem.

Is this any help?

Mike Gray

[Guest guest]

My neck is ALWAYS stiff............it's like I can't find a comfortable

position for it. It has been this way for a long time and seems like a lot

of us has this problem. Wonder why? Jeanne Ann Neff

[Guest guest]

Laurel, I had one of those buck wheat pillows and it didn't make

my neck feel any better. Besides they make a crunchy noise when you move

which drove me crazy. My ache is at the base of my neck and when I turn it

side to side its sounds like there's sand in between the bones. Anyone else

have that feeling or noise?............Flora

[Guest guest]

Mike

the stiff neck problem is one I have experienced long before my diagnosis.

Yes, posture difficulties, especially, when spending lengthy times at the

computer, increase the likelihood that problems like this will be

experienced.

I have reduced the problem by getting glasses which are exclusively for use

with the Computer. These eliminate the need to tip the head back when

viewing the screen. Also I have the monitor as low as practicable,

preferably flat on the desk. I find that the focal length still allows for

quite comfortable reading of documents on the desk provided that the back is

kept fairly straight when working. Keeping the back reasonable straight also

helps to reduce back discomfort.

As this is the first time I have written to the Group, I will briefly

introduce myself.

I am aged 57, Australian, living in Adelaide South Australia. I was

diagnosed with ALS (MND) in February 1997. However, due to my (blessedly)

slow progression I have recently sought a review of the diagnosis, with the

result that it looks like the diagnosis may be (has been?) changed to PLS.

Further consultation is being undertaken. However, it is likely that the

diagnosis may still remain somewhat uncertain.

I am pleased to have the opportunity to share in your group. Thanks.

Cole

Re: Stiff Neck

> Laurel,

>

> I have a chronic stiff neck I attribute it to my poor sitting posture at

> the computer and while writing at work. I have had some bad falls that

> contributed to the problem, also. Have had to wear a collar for two

> weeks following one of them. That did help. I usually get a sharp pain

> just below the shoulder blade on my left after 8 hours of doing this

> type of stuff. Hurts like being stabbed. A sharp, burning sensation. I

> know it's a muscle cramping because I can massage it away. However, the

> first few minutes of massage hurt. There is a noticeable lump that has

> to be loosened. This is a daily occurrence with some days not as bad as

> others. It's been with me for at least 4 months, maybe longer. My

> glasses don't help much, either. They are a varilux lens, meaning no

> lines, and I have to hold my head back to see the screen or what I am

> writing. This does not help the problem.

>

> Is this any help?

> Mike Gray

>

>

>

>

>

>

[Guest guest]

Thanks Shirley,

Yes, you are right. It is already obvious to me that members of this group

are a great bunch of people.

Cheers

Cole

Re: Re: Stiff Neck

> Welcome to the group is nice to meet you sorry that we have to meet

> here. I am the caregiver to my husband who has PLS. or ALS. Not sure

anyone

> knows with these illnesses. But feel free to ask or say anything to the

group

> they are all a bunch of great and very smart folks. I am sure you will be

> welcomed with open arms. So here is my welcome. Shirley (Michigan)

>

>

>

[Guest guest]

Mike:

I thought after I got my new bed, at least some of my aches & pains would go

away. My neck is stiff when I turn my head to either side. It only goes so

far, plus there's a spot probably about where my cervical & thoracic spine meet.

I don't think they're getting along very well. It feels like they're trying to

stab each other in there.

It was quite funny after my tumble down my front steps last fall, my stiff neck

was much better for awhile. Do you suppose the fall was kind of like an

adjustment of sorts?

The hip I landed on didn't think so!

My no-line bifocals were terrible for computer work, so I got some glasses

specifically for working on the computer. If I remember right, they're called

" Access Lenses " . They are so worth the money. I keep them right beside the

monitor. You can even see fairly well in the distance. You may want to try

some of those, then you won't look like one of those " bobbing dogs in the rear

window " trying to find just the best spot to see the screen.

Take care, Mike!

Laurel

Re: Stiff Neck

Laurel,

I have a chronic stiff neck I attribute it to my poor sitting posture at

the computer and while writing at work. I have had some bad falls that

contributed to the problem, also. Have had to wear a collar for two

weeks following one of them. That did help. I usually get a sharp pain

just below the shoulder blade on my left after 8 hours of doing this

type of stuff. Hurts like being stabbed. A sharp, burning sensation. I

know it's a muscle cramping because I can massage it away. However, the

first few minutes of massage hurt. There is a noticeable lump that has

to be loosened. This is a daily occurrence with some days not as bad as

others. It's been with me for at least 4 months, maybe longer. My

glasses don't help much, either. They are a varilux lens, meaning no

lines, and I have to hold my head back to see the screen or what I am

writing. This does not help the problem.

Is this any help?

Mike Gray

[Guest guest]

Hi ,

Welcome to the group, and thanks for your input. I do have those computer

glasses, and they're marvelous!

I wish I could find just the right pillow to sleep on. I think that would

possibly help my eternally stiff neck. I have purchased 3 new pillows over the

last year, and none are just right. Has anyone heard of the " buckwheat " pillow?

I think that's what it is, and they're supposed to be great!

Welcome again, Cole, sorry you have PLS, but glad you found us. Take

care, and keep the faith,

Laurel

Re: Stiff Neck

> Laurel,

>

> I have a chronic stiff neck I attribute it to my poor sitting posture at

> the computer and while writing at work. I have had some bad falls that

> contributed to the problem, also. Have had to wear a collar for two

> weeks following one of them. That did help. I usually get a sharp pain

> just below the shoulder blade on my left after 8 hours of doing this

> type of stuff. Hurts like being stabbed. A sharp, burning sensation. I

> know it's a muscle cramping because I can massage it away. However, the

> first few minutes of massage hurt. There is a noticeable lump that has

> to be loosened. This is a daily occurrence with some days not as bad as

> others. It's been with me for at least 4 months, maybe longer. My

> glasses don't help much, either. They are a varilux lens, meaning no

> lines, and I have to hold my head back to see the screen or what I am

> writing. This does not help the problem.

>

> Is this any help?

> Mike Gray

>

>

>

>

>

>

[Guest guest]

G'day Laurel,

Thanks for your words of welcome.

Cole

Re: Stiff Neck

>

>

> > Laurel,

> >

> > I have a chronic stiff neck I attribute it to my poor sitting posture

at

> > the computer and while writing at work. I have had some bad falls that

> > contributed to the problem, also. Have had to wear a collar for two

> > weeks following one of them. That did help. I usually get a sharp pain

> > just below the shoulder blade on my left after 8 hours of doing this

> > type of stuff. Hurts like being stabbed. A sharp, burning sensation. I

> > know it's a muscle cramping because I can massage it away. However,

the

> > first few minutes of massage hurt. There is a noticeable lump that has

> > to be loosened. This is a daily occurrence with some days not as bad

as

> > others. It's been with me for at least 4 months, maybe longer. My

> > glasses don't help much, either. They are a varilux lens, meaning no

> > lines, and I have to hold my head back to see the screen or what I am

> > writing. This does not help the problem.

> >

> > Is this any help?

> > Mike Gray

> >

> >

> >

> >

> >

> >

[Guest guest]

Welcome to the group. I do have ALS. My diagnosis was always up in the

air until recently. I was mildly afflicted till late last year. Then since

Decembers I have really deteriorated quickly. Right down hill since I went on

sick leave from work in December. .

I have stiff necks since I can't recall how long.. I thought it was from

lifting patients wrong, or the change in weather, or from sitting at the

computer to long. I did the whole thing with sitting properly, putting the

monitor where it should be etc...I have sharp pains between my shoulder blades

and have burning, incapacitating pains that shoot up either side of my neck. I

do stretching exercises for my neck now. It also took over my right shoulder.

The clonus thing interests me. The bad twitches that drive you nuts. It knocks

my paper up in down in my lap from my inner thighs. These move. The

fasciculation's always feel like there is something crawling on me and I have to

look to make sure there isn't.

Welcome again

Sherry

Re: Re: Stiff Neck

[Guest guest]

As a rule my neck does not/has not bothered me but several doctors have

asked, upon looking at my MRIs if I have ever had a neck injury. No one has

ever answered me when I asked why they were asking me that.

Ronnie

Re: Re: Stiff Neck

> My neck is ALWAYS stiff............it's like I can't find a comfortable

> position for it. It has been this way for a long time and seems like a

lot

> of us has this problem. Wonder why? Jeanne Ann Neff

>

>

>

[Guest guest]

Sherry, I don't always read my e-mails from PLS Friends as carefully as I

should. That's why I'm e-mailing you direct! I need your help!! Since my

diognosis June 2000 I have progressed rapidly! I started with a cane prior to

that. Then a walker and about a year ago I went to a power chair. My speech is

really getting bad. I can only take a few steps with my walker. I choke often

because of to much salva (sp) in my mouth and on thin liquids. I do well with

food. I do drool some. Poor coordination and terrible balance. I take 30 mg of

baclifin daily which has controled the pain from muscle spasms rather good.

Startle reflexes and severe stiffness. Early in the day my arms and legs feel

very weak. I do not have fasiculation's but I do have twitches. I am going to

Duke Hospital in April. Have not been satisfied with my present Neuroligist. I

just wonder if I have ALS. What if anything sould I ask when I go. I am sorry

for the length of this note. I hate to take your time. You just seem to have it

together. I would appreciate your response when you have time!! Thanks, Pat in

NC

Re: Re: Stiff Neck

[Guest guest]

Welcome , what medcations are you on, if any, and what are your

symptoms?

Re: Stiff Neck

>

>

> > Laurel,

> >

> > I have a chronic stiff neck I attribute it to my poor sitting posture at

> > the computer and while writing at work. I have had some bad falls that

> > contributed to the problem, also. Have had to wear a collar for two

> > weeks following one of them. That did help. I usually get a sharp pain

> > just below the shoulder blade on my left after 8 hours of doing this

> > type of stuff. Hurts like being stabbed. A sharp, burning sensation. I

> > know it's a muscle cramping because I can massage it away. However, the

> > first few minutes of massage hurt. There is a noticeable lump that has

> > to be loosened. This is a daily occurrence with some days not as bad as

> > others. It's been with me for at least 4 months, maybe longer. My

> > glasses don't help much, either. They are a varilux lens, meaning no

> > lines, and I have to hold my head back to see the screen or what I am

> > writing. This does not help the problem.

> >

> > Is this any help?

> > Mike Gray

> >

> >

> >

> >

> >

> >

[Guest guest]

My neck was stiff a couple days last week... it was rainy... took Vioxx

and is OK now.. I have vioxx for arthritis and only take it when a joint

(usually shoulders) are hurting..

Jeanette

[Guest guest]

My neck was one of my biggest complaints until I started sleeping on the

TempurPedic pillow. You can buy them separately from the beds. They are

kind of expensive but so much better than suffering all the time. Now my

neck only bothers me when I sit up at the desk to work on the computer (I

usually put my laptop on my lap) or when I'm sitting with my neck turned for

a while. But I never wake up with a stiff neck anymore. Well worth the

money. Now I sound like an advertisement for TempuPedic! ;-)

Thomson

Solana Beach, Ca

Visit www.als-pls.org

and www.geocities.com/mdmfoo/pls.html

[Guest guest]

Hi Sherry

Sorry to hear that you have been diagnosed with ALS. I hope that your

progression slows soon.

Thanks for your welcome.

Regards

Cole

Re: Re: Stiff Neck

>

>

>

>

>

[Guest guest]

WELCOME JOHN,

MY NAME IS BONNIE I LIVE IN OHIO, USA

MY HUSBAND WAS DX WITH PLS IN OCT OF 1999 BUT CHANGED TO ALS IN SEPT OF 2002.

BUT I'M NOT GOING ANYWHERE. YOU WILL ENJOY THIS GROUP SO MUCH.

MY HUSBAND'S DR. ASKED ME THE OTHER WEEK WHO WAS TAKING CARE OF ME WHILE I WAS

TAKING CARE OF DON.

I TOLD HIM THE PLS GROUP. THESE PEOPLE ARE WONDERFUL TO SAY THE LEAST. THEY

HAVE BEEN MY BACK BONE MY SHOULDER TO CRY ON AND MY PRIDE AND TRUE FRIENDS. I

THINK YOU WILL FIND THIS THE SAME.

I SURLY HOPE YOU DIAGNOSIS WILL REMAIN PLS AND THAT YOU ARE NOT IN THE BEGINNING

STAGES OF ALS.

BEST TO YOU AND YOUR

BONNIE

[Guest guest]

I thought it was called " stiff upper lip " , not stiff neck, as a sign of

strength. But, it does sound like we all pretty much have the stiff neck for

sure. It's gotta be the way we walk, try to balance, fall frequently, and have

to do things for it to be so common. I never dreamt so many others were stiff

necked when I brought it up.

Take care all,

Laurel

Re: Re: Stiff Neck

Perhaps we are all just " stiff-necked " about this disease and will not

let it get us down. ;-)

Mike

jeanneannneff@... wrote:

>My neck is ALWAYS stiff............it's like I can't find a comfortable

>position for it. It has been this way for a long time and seems like a lot

>of us has this problem. Wonder why? Jeanne Ann Neff

>

>

>

[Guest guest]

Hi and thanks for your welcome. The only medication that I am taking is

Baclofen to reduce spasticity in the legs. Also the neurologist started me

on it as an aid to diagnosis (ALS v. PLS?).

My symptoms are not severe. I guess they are pretty common. I have wasting

in both shoulders, weakness and spasticity in my legs (the baclofen helps).

It takes a little while to get my legs going in the mornings. I am prone to

getting very tired and experience fasiculations from time to time. Other

symptoms which are transitory include, tweaking around my mouth, spasms in

my shoulders and legs and a tendency to muscle soreness if I exert them too

much.

Regards

Cole

Re: Re: Stiff Neck

>

>>

>

>

>

>

[Guest guest]

Amen!

Al of what Vaughan has said tallies exactly with my experience.

Cole

Stiff Neck

> Mike,

>

> I may be able to help your stiff neck, or at least your ophthalmologist

can.

> Get him/her to write you a prescription for computer glasses. They are

> single lens glasses that are ground to the prescription of the bottom of

> your bi-focals. But, they should have a much longer depth of field. I

told

> mine that I wanted everything from 12 " to 30 " to be in focus. Wally World

> made them for $30 and I simply could not do without them.

>

> For instance, my keyboard, monitor and everything on my desk are in focus

or

> close enough that I don't have any problem reading it. They're really

> great. In fact while I was still working, I had two pair made so I

wouldn't

> have to remember to carry them back and forth.

>

> Why are all bulletin boards placed above head high? Kink your neck trying

> to read them. And grocery items below knee level - forget it. Have to

get

> down on your knees and still tilt your head back.

>

> Vaughn

>

>

>

>

>

[Guest guest]

HI PAT,

HANG IN THERE GIRL. SHARE YOUR SUSPICIONS WITH YOUR FAMILY ALLOW THEM TO

SUPPORT YOU. YOU ARE PROGRESSING LIKE DON DID, IT WAS MUCH TO FAST FROM WHAT WE

HAD SEEN AND HEARD FROM THE OTHERS. THAT IS WHY WE ASKED TO SEE DR. FINK. AND

HE RAN ANOTHER EMG THAT SHOWED THAT DON DID HAVE ALS. YOU KNOW IT DOESN'T

CHANGE. WE SEE IT AS WE STILL HAVE THE SAME MONSTER TO DEAL WITH JUST BY

ANOTHER NAME. WE TAKE EACH DAY AS IT COMES. DON SHARES WITH ME AND I WITH HIM.

THERE ARE MANY PEOPLE THAT LIVE MANY MANY YEARS WITH ALS. FROM WHAT I AM

HEARING AND READING ON THE ALS SITE IT BECOMES YOUR CHOICE. DON HAS LIFE

CHOICES TO MAKE THAT HE WOULD NOT HAVE TO WITH PLS. HE HAS A FEEDING TUBE FOR

FLUIDS RIGHT NOW SINCE HE CAN'T SWALLOW THIN LIQUIDS. HE USES A BIPAK MACHINE

TO HELP HIS BREATHING AT NIGHT. HE HAS DECIDED THAT HE WANTS TO SEE HIS

GRANDKIDS GROW UP SO WHEN THE TIME COMES HE WILL GO ON A VENTILATOR. THAT IS

THE BIGGEST DECISION. THE ONES THAT DON'T LAST DECIDE THEY DON'T WANT A

VENTILATOR. HE ENJOYS THE KIDS, HIS TV. AND WE HAVE A SEPARATE ONE FOR HIS

SPORTS. HE IS LOOKING FORWARD TO SUMMER TO GET OUTSIDE IN HIS POWER CHAIR.

DON'T KEEP THIS TO YOURSELF INCLUDE YOUR FAMILY. I FEEL IT WILL BE BETTER FOR

YOU AND THEM. JUST IMAGINE HAVING TO TELL THEM IT ISN'T PLS AND THEY HAVE NOT

BEEN PREPARED. AND IF IT ISN'T ALS YOU CAN ALL CELEBRATE TOGETHER. REMEMBER

THIS ISN'T JUST YOUR DECEASE IT'S THE WHOLE FAMILY'S.

LOVE TO ALL

BONNIE

[Guest guest]

Hi Pat,

I eaves dropped on your message to Sherry. I'd like to offer a suggestion

about using a product called Thick-It. It is a powder that you can get at

your pharmacy and add it to thin liquids to make them easier for you to

tolerate. It is odorless and tasteless. I think it will help you.

Dolores (Registered Dietitian and PLSer in CT)

Re: Re: Stiff Neck

>

>

>

>

>

[Guest guest]

G'day Bonnie

Re: Re: Stiff Neck

> WELCOME JOHN,

Thanks for the welcome Bonnie!

>

> MY NAME IS BONNIE I LIVE IN OHIO, USA

> MY HUSBAND WAS DX WITH PLS IN OCT OF 1999 BUT CHANGED TO ALS IN SEPT OF

2002. BUT I'M NOT GOING ANYWHERE. YOU WILL ENJOY THIS GROUP SO MUCH.

>

> MY HUSBAND'S DR. ASKED ME THE OTHER WEEK WHO WAS TAKING CARE OF ME WHILE I

WAS TAKING CARE OF DON.

>

> I TOLD HIM THE PLS GROUP. THESE PEOPLE ARE WONDERFUL TO SAY THE LEAST.

THEY HAVE BEEN MY BACK BONE MY SHOULDER TO CRY ON AND MY PRIDE AND TRUE

FRIENDS. I THINK YOU WILL FIND THIS THE SAME.

>

It is already abundently clear that this is a very special group of people.

> I SURLY HOPE YOU DIAGNOSIS WILL REMAIN PLS AND THAT YOU ARE NOT IN THE

BEGINNING STAGES OF ALS.

>

Yes, I hope you are right and the diagnosis is confirmed as PLS. Still, as

long as the progression remains slow, it does not really matter what label

is attached. I am not really concerned, however, it does seem that the Drs,

are more willing to seek to treat the symptons with PLS. Perhaps, it is

because of the slower progression, allowing more opportunity to assess the

benefits of prescribed drugs.

>

> BEST TO YOU AND YOUR

> BONNIE

>

>

Cheers Bonnie and best wishes to your husband. Ave a g'day!

>

[Guest guest]

Hi . Do you have any pain or weakness in your arms or shoulders and if

so what do you take.

Sue

Re: Re: Stiff Neck

> >

> >>

> >

> >

> >

> >