Shoulder Problems

[Guest guest]

,

Just holding my arms up to drive, knitting, doing my hair, etc. can give

me fits. Heavy shoulder purses are a problem, too. I wear larger, full

cut pullover shirts because pulling them off is difficult. Gardening, a

lot of sweeping, vacuum cleaning overhead are troublesome and can send

my neck and the parts between it and the shoulders get very sore. When

it's really bad, like right now, the muscles go into spasms. Fun, ain't

it?

The therapist gave me some exercises to do to loosen and strengthen

those muslces but I still have to be careful. Have you tried going

without your coat while driving and put it on when you get out? I find

that things like that restrict movement.

Patty B in the Pineywoods of East Texas

> <snip> I have had 'involvement' in my shoulder for years and so lots

> of pain there. Now I find that my coat hurts my shoulders if I wear it

> too long! (especially driving). Apparently it is too heavy, and I

> really wanted to get a leather car coat, but that would probably be

> waaay too heavy. Any advice?

[Guest guest]

,

The PA snuck up on me over a few years. I thought I was going crazy

having trouble climbing stairs and then just getting up out of a

chair etc... I really wanted the Doc to do surgery on the shoulder. I

wanted her to give me exercises for the shoulder. I was on a rotating

shift and helped shovel up product off the cement and from the ends

of large rotating Coolers to keep them from plugging when we had

problems and it helped out the Utility workers since I had to be in

that location anyway as Quality Control. What finally helped was

taking the DMARDs. They worked from the inside out to help the

shoulder problem. Yes, the shoulder can get so bad that you can't

pull the wet clothes out of the washing machine. You bend over to

wash your hair because your shoulder won't cooperate. It's easy to

put a brace on a wrist but how in the World do you brace a shoulder??

The same thing with mattresses. Many people buy many different

mattresses thinking it is the mattress giving them problems when it

is the PA. I cursed my mattress for 2 years and then the DMARDs

worked and the mattress is heavenly now:)

I wish you could just turn the heater up in the car but then it is

uncomfortable to put a jacket on while in a car prior to getting out.

No solution there.

Take care,

PatB

finally got some rain in Alabama..now give us some cool weather..

[Guest guest]

--- deGuzman <jkaj@...> wrote:

> Does anyone have this problem?? I have had 'involvement' in my

> shoulder for years and so lots of pain there. Now I find that my coat

> hurts my shoulders if I wear it too long! (especially driving).

> Apparently it is too heavy, and I really wanted to get a leather car

> coat, but that would probably be waaay too heavy. Any advice?

>

Boy, does this bring back some memories. Strap in or move on 'cause

this is a long one.

The winters on either end of 1994 were absolute hell for me. I was

living in the KC, MO (i.e. Mid-West) area at that time and I have since

moved from there, at great personal expense, explicitly because of the

weather. (Since March 1st '99 I now live back " home " in SE Louisiana.

I'm just lucky that I could even attempt such a move.) I started

getting treatment in August 1995 and the following winter was not too

bad. By the winter of 96-97 things appeared to be under enough control

from the drug therapy and my own personal physical recovery program

(like the HMO was going to get me PT, Ha!) that I was able to endure

three more winters there (two of which were near records for mildness

IIRC).

The real test was '94 however. Though I'm pleased to say I'm much

better now, and I have sort of forgotten the horror of that year (I

prefer to say I choose not to think about it), that time is still

plagued with horrific memories for me. I'm writing this partly to

answer your question and hopefully help others, and partly because I

don't really EVER want to " forget " or become remiss about the

nightmares my illness has caused me in the past. Since I am enjoying

better health now I have detected a pattern of complacency creeping in

and it concerns me. I do not EVER want to go " back there " again.

The hidden costs that resulted from the original onset of my illness

were a total surprise. I spent well over $400 for just two pair of off

the shelf shoes so that I could walk (this kind of expense was unheard

of for me!). I had to clear out over half my trouser wardrobe, because

I could not get my hands in my pockets, despite the fact that most were

loose fitting anyway. (The pocket had to be cut at an angle across the

front. If it was a slit at the side I could not rotate my arm back in

my shoulder enough to get my hand in it.) But the winter coat – now

that was a MAJOR issue!

That year (in the winters) it seemed there was virtually NOTHING I

could do to get warm and comfortable, ever! The only relief I could

get at that time was the 30min or so per day that I spent in the shower

room at the club where I swam. It was a very well designed facility

and the room was enclosed to house a hot tub, steam room and showers.

It also had a dry sauna, but I found the dry heat very uncomfortable

(ironic when you consider the desert is supposed to be a preferred

climate for arthritics). Needless to say it was a BIG motivator for me

to go into the club at least every M-F in the AM to start my day off

right and that is pretty much exactly what I did. I would do just

about ANYTHING in those days to get ANY amount of relief. When I came

out of that facility to drive to work I did not even feel the cold.

WOO-HOO!

But I HAD to have some kind of coat - it was a given necessity.

Covering my hands was a problem too because I could not get a glove on

my right hand (mittens worked though). I grew up in SE Louisiana and

was a carpenter there, and in middle Tennessee, in my 20's. I learned

early on that layering up was the way to go to bundle up against the

cold. Unfortunately this strategy/wardrobe did not work with my

arthritic condition.

The main problem was movement. First of all I could not always get the

layers ON! My hands were too weak to hold on to a sweater sleeve going

through a coat sleeve (especially if both were fabric), leaving my

sweater sleeve in a very uncomfortable position. I would then fidget

with it till the pain got too great and then either quit or rest and

fidget some more in an attempt to straighten it. I was a basket case!

Another movement problem was that I could not lift my elbows anywhere

near above my shoulders (try putting a coat on without doing that).

I'll never forget one evening that I was " suiting up " by my desk in the

office cubicle array to go home and I was worming around trying to get

my (last) coat on. It must have been a " bad time " and I must have

looked pretty pathetic. I suddenly felt a tug and the coat went over

my shoulder and I looked over it in time to see a nearby co-worker slip

by and disappear down the corridor. (My cubicle was a sort of

passthrough/shortcut for some of my " neighbors " .) No words were spoken

(about it ever) and no eye contact was made (then) between us. I stood

there with a feeling that I can only describe as numb, and I almost

cried (which I was only a breath away from anyway because of the pain

and frustration). It was like the coup de grace to an otherwise crummy

day. Here I was at 36yrs-6'2 " -180#, someone who used to be able to

hoist a 16' aluminum canoe from flat off the ground to over his head in

one motion, being helped with his coat by a man nearly half his size

and over a decade his senior. If anything, this illness has defiantly

been an exercise in humility for me. I got to admit though that he did

a pretty clean job of helping me. I didn't experience any jolts of

pain as a result of his assistance and in those days I was extremely

paranoid about people bumping into me or touching me, even my (now ex)

wife. (Oh my God, what did I DO to that woman?)

The final movement problem was that sometimes " enough " layers were too

much and I could not move! I may as well have been in a straight

jacket! (I'll bet something Freudian is in there somewhere. <ROTFL>)

The shear mass (not to mention weight [Whoops, 'dere it is FINALLY]) of

all that stuff sometimes made movement difficult if not impossible. I

felt as if the guys who walked on the moon must have had better

mobility than I did. Also, every layer going on/off meant another turn

of the rack handle so-to-speak so multiple layers quickly lost their

appeal.

So what's the solution? A high quality down parka! Forget the

leather. Sorry, but unless you have a massive clothing budget you just

will not make any fashion statements while you suffer from this

condition. Comfort and functionality are the rules. High-tech

insulators like Thinsulate don't do jack, especially for the main

(outer) barrier. (They are OK for sub-layers though.)

You can't get just any coat though. This will be a big investment so

you need to be a savvy buyer. I was pretty clueless the first time

around but I got lucky, and I learned a lot. Here's what you need to

look for:

It needs to be an upper-end quality coat (bear in mind that quality is

different from cost but they generally run pretty close together).

Remember that down does not last forever (it looses its loft) so be

prepared to have to replace it sooner than you'd like, and take good

care of it. Don't store it in a compressed position like at the bottom

of a blanket chest or hanging in a tightly packed closet (I hung mine

all by itself on the back of a door). This is gonna be your best

friend in winter so be nice to it and give it lots of space. <g>

The fit and form of your coat is important. It should have a nylon

lining so it is easy to slide on and off. If it is not easy to put on

you are not going to want to wear it, especially if your state of

attire changes 6x/day or more (home = on, gym = off/on, work = off/on,

home = off). Zippers and Velcro beat snaps and buttons EVERY TIME! It

should fit well or just a bit loose over what you typically wear around

the house or job. It should be your main and outermost layer. It

should allow you free and easy movement.

A well designed down coat is ideal for all of these things. On days

when it was my only clothing article changed between the home and

office I hardly even knew I had it on and it kept me toasty warm. If

you do decide to put on an extra layer the down will quickly compensate

for it without any loss of efficiency or comfort. When buying light

jackets, etc., that may later become sub-layers for this coat, keep in

mind that you always want to have at least one inner/outer surface be

nylon so that there is a lower coefficient of friction as you layer up

(yep, I'm and engineering type). If you buy off the shelf then bring

along an extra sweater or light jacket to test it (pullovers are a real

bummer here). Do this test: While sitting or standing hold your hands

up to simulate holding a car steering wheel and then one at a time move

each hand across your body and past your other shoulder. The coat that

restricts your movement the least when you do this will be the least

fatiguing, especially when you drive.

A front zipper that goes the entire length of the coat is not

necessarily a good thing. If you have to reach down too far and gather

up too much fabric to start the zipper it can get to be a real chore.

This is especially true when it has been a long tiring day, you are

tired anyway, and you had to stop by the grocery that was so heated you

had to open up your coat. It is also next to impossible to sit in a

car with a parka completely zipped. My coat has a very cool two way

zipper that I can zip open from the BOTTOM, and just a few inches was

all it took to make getting in/out of the care more comfortable.

Miniature carabiners (available at sport shops) or a light key fob make

an ideal attachment to your zipper tab for easy operation. I bought

several key ring like carabiners (for ~$1 each) to put on my zipper

tabs because then, even with my mittens on, I could still operate my

coat zipper by putting my thumb in the loop. I didn't even have to

grasp anything. Pretty handy when you get into a cold car at the end

of the workday.

Down will settle and, to avoid it all collecting at the bottom of the

coat, it is sewn into pockets. How this is done is of great

importance. Crummy jackets will simply be sewn together between the

inner and outer lining leaving cold spots at the seams. Good coats

will sew one side of a strip of fabric to one lining and then attach

the other side to the other lining at a point higher or lower to form

the pockets for the filler. If you look at a cross-section of this,

the fabric makes a sort of zigzag pattern (this is often illustrated on

the " buy me " cards attached to the coat). Be sure you get this feature

as it more evenly distributes the filler and indicates better quality

overall.

A draft-free design is critical. You will truly understand the

importance of this when you have to hike a half-mile across a dark

parking lot in single digit temps with a 30mph wind ripping at you!

It has to cover your butt. This can cause problems driving if you

don't hike it up before you sit down, so learn. A drawstring

(preferably elastic) at both the waist and the very bottom hem are

really good to have. Especially if you can set 'em and forget 'em AND

they have those cool little quick slide clips which allow you find that

perfect position without much fuss. A coat that allows drafts up it,

especially past the waistline, is practically useless.

A well-tailored cuff is a joy to have. Mine are perfect. A generous

cut of light nylon fabric was sewn into the inside of the sleeve

starting ~3 " + from the cuff and finishing off at the cuff with a band

of light, stretchy, elastic. (This is SO important. There are many

coats and jackets I cannot wear because the elastic, and the subsequent

bunched up fabric, is so heavy that I cannot get my hand through the

opening without great discomfort and trouble [if at all]. Considering

you have to pass your hand through this opening at least 4-6x per day

it can become a very significant feature.) The beauty of this design

is that along with being able to seal out drafts alone: If you combine

this with a mitten or glove that has a generous gauntlet, then they

will fit together to form a near draft free seam because the inner cuff

fits inside the gauntlet while the (insulated) outer cuff fits over it.

(Where's that snowball quality precip?)

A waterproof fabric outer shell for your coat is a really good idea.

The last thing you want to have to do is tote another article around

like an umbrella or (God Forbid!) a rain coat to put over it. Those of

you who grew up in snow climates already know why this moisture

resistant shell is important. Transplanted southerners have to figure

it out.

It's a good idea to have pockets for your mittens and it is nice to

have hand warmer pockets too. Most good coats accomplish this easily

with a cargo pocket in the bottom front L & R side, with hand warmer

pockets in front or behind them. Crummy coats will have one pocket on

the side at the seam because it is a cheap way to do it and it is

useless. (Remember the trouser segment above?) The closer the hand

warmer pockets are to the front the better. Just above waist level

with an opening cut at a slight angle seems ideal to me.

A hood is a really nice feature and if you are worried about bad hair

days remember that fashion takes a back seat to form and function. My

hood is pretty decent but it was removable and they really dropped the

ball on how it was fastened. Just three snaps, and if I was not

careful one of them would come undone and it was half off in a flash.

A zipper would have been much more effective but no doubt they were

worried about how that would LOOK so they opted for three small snaps.

It did have a nice flap that allowed little draft up the back but

despite the coat collar up to my chin, the closure on the front of the

hood still allowed a sizeable draft there, the only real chink in the

armor (literally). I learned to do a little turtle maneuver and tuck

my head in and down. This got me across the parking lot OK.

Visibility is a good thing to test with a hood. The little visor

things that go across the top and sides of your face are pretty nice

for wind blockage but lousy for driving. On super cold days I had a

Thinsulate lumberjack's hat that I could wear under my hood so my bean

was protected once I got out of the wind.

I mail ordered my coat from Lands End and it has been an exceptional

value. They have " tall " sizes and for me the fit seemed tailor made.

Its only weak points are the snaps on the outer sleeve cuff cinches and

front closure flaps (coat & hood), and the Mickey Mouse method of

attachment for the hood. The snaps on the cuffs were almost moot point

though because of the handy inner elastic cuffs. I'm sure the down

will wear out before the jacket (and now that I live in a more

temperate climate it does not really matter that much to me). I used

that coat every day for three winters and I began to consider replacing

it when I left the arctic mid-west.

Yes, I was a lightweight about the cold even BEFORE I got the

arthritis! Throughout my stay in KC I got goofy looks from folks,

especially at work, as I bundled up to go home. But I did not care

because any ounce of comfort I could weasel into my life was generally

worth the effort. I remember the razzing too. Particularly by all the

old guys who would tell me how they moved to KC from places like

Minnesota to get WARM! And this was when the highs in KC did not get

above freezing for THREE WEEKS AT A TIME! No thanks! I took it all as

it was intended though (in good humor), because I would get my revenge

in the summer when they complained about the humidity! <ROTFLMAO>

As for shoulders I can tell you that in '94 I could not lift my arms

over my head and in Fall '95 I started swimming (again) and could not

lift my arms out of the water. Now, just 5 years later, I can swim all

three major strokes and do yoga postures that involve lifting my arms

straight up over my head and can do so at will at any time. I've

already made other posts on that subject that are more extensive (and

will no doubt make more) so you can search the archives for that one.

Breaux Conreaux (a.k.a. Conradical)

__________________________________________________

[Guest guest]

wow conradical , how long did it take you to write that post? that was

loooooong...

Message: 10

Date: Thu, 9 Nov 2000 20:23:44 -0800 (PST)

From: Conradical <zenswimmer@...>

Subject: Re: Shoulder problems

[Guest guest]

I have had some shoulder problems too. I do upright rows but sometimes

even they make it sore. I try to listen to my body and sometimes miss

shoulders altogether if they are playing up - but I make sure I'm hitting my 10s

on all the other upper body exercises. Initially I found this very frustrating

and

was worried this might set me back but I am almost finished my first challenge

and have lost 15lbs and plenty of inches.

Good luck with it.

[Guest guest]

Susie,

I'm a veteran of neck and shoulder wars from many years back (would you

believe--high school?) Anyway I don't pretend to be an expert at all, but

there a few things that I've learned that might apply to you.

I don't know your doctor situation, but you might want to mention to the doc

the problems you're having. Yes, it might be bursitis, tendonitis, but I've

also not used mine due to pain to the extent that I've developed 'frozen

shoulder' from time to time. The first time, this new name of pain came from

a situation which you describe pretty much exactly as I remember it. After I

mentioned it to the doc ( a neurologist this time for me) he sent me to PT

and directed them to treat me for frozen shoulder. After an evaluation from

them, and tons of questions, I was given exercises which included one of

those raggedy looking really wide rubber bands which are often used in PT

where I'm from. The exercises reminded me of several types of

baseball/softball throws, tosses, pitches. The exercises were very specific

as to where each body part was to be placed--e.g. feet, hands, shoudlers,

etc., so that the correct part was exercised and nothing endured any further

pain.(yep I had to try it the wrong way and messed up a little more before

it got better.) The rubber band was hooked over the door knob on one end and

I held the other end in my hand in various ways, depending on the exercise

being done at the time. There were many different exercises given.

Since the visit to PT, I frequently ( generally after a fit of illnesses of

the respiratory variety when the doc tells me not to exercise) I have to

start over again.

I have found on my own that gentle range of motion exercises also help with

the problem. I especially like to do those either in the shower after the

warmth of the water has loosened things up or if there isin't enough room,

after I'm out of the shower. It's amazing the difference in the range of

motion I get before and after the warm shower.

Now aren't you sorry I answered your question? But I truly hope I said at

lease one thing that might help you.

: )

[Guest guest]

Hi Susie, Its sounds as if you are having problems with your rotator cuff. It

may be tendonitis. I have had a lot of problems with my shoulders. I have had

microscopic surgery on both shoulders. I had a lot of scaring that had to be

removed. The left shoulder problems followed a fracture and my shoulder froze

up. I couldn't move it away from my body at all. It is very important to

exercise to maintain range of motion. Try walking your fingers up a wall. If

you do it in the shower the warmth helps. I had a pulley set up with a chord

and two handles. I would stretch my shoulders using that. There are a lot of

shoulder exercises. A few sessions with a physical therapist could help you.

Also steriod injections in the shoulder can be quite helpful. You may find the

problem progresses. I hope that isn't the case for you. People with autoimmune

disorders are especially prone to frozen shoulder. Take care.

Kay

[Guest guest]

Thanks Kay!

I can move my shoulders as long as I don't move them above my head. I

do have limited range of motion moving them behind my back but

thankfully I can do most other things as long as I keep them close to

my body.

I didn't know you could get scar tissue though.

Thanks,

Susie

> Hi Susie, Its sounds as if you are having problems with your

rotator cuff. It may be tendonitis. I have had a lot of problems

with my shoulders.

> Kay

[Guest guest]

Hi Faye,

Gosh, I couldn't imagine getting a headache everytime I used my arm.

That has to be awful. If I crack my neck, sometimes it will give me a

headache, but thankfully it doesn't do it everytime.

I get arm fatigue really easy just holding things in a certain

position which is really frustrating. I'm afraid to mention it to the

Rheumie because it sounds so silly. Actually I think I did mention it

once, and got " the look " .

I never would have thought that a tendon would cause clunking because

it feels like a bone, but the pain symptoms are more of a tendonitis.

For a while I had really bad upper arm pain if I laid on my side, but

that disappeared after a couple of months. I remember reading that it

was probably a tendon.

Thanks,

Susie

[Guest guest]

Hi ,

I think the original message that I typed vanished. I don't know why

I am having troubles with posting. ARgggggh.....

Anyway, thanks for responding.

It could be similar to yours, because I do tend to keep my arms close

to my body, especially when I'm cleaning. I try not to raise them

because of the pain and the clunking.

I have a Rheumie visit June 12th, and the shoulders and the fatigue

are on the top of my whiney list. I can't imagine exercising through

this pain to make it better though! Ouch!

Thanks,

Susie

Let me try this again....I've copied the message this time before I

try posting it!

[Guest guest]

Susie,

Yeah, I was teary eyed when the neuro wanted me to do PT and even more so

when the exercises were demonstrated to me. I have to say that I was

pleasantly surprised. Even so, I didn't do as many as recommended the first

day just to convince myself that it really was OK and these ppl knew what

they were doing.

Hope you find something that works on the 12th!

[Guest guest]

Hi Cheryl,

I had scoliosis surgery in 1997 and revision surgery in 2000. I am fused

from T1 to L5. I am 43 and ever since the first surgery my neck and shoulders

bother me. I was told by my physical therapist that our neck muscles are the

weakest and are responsible for holding our heads up. After the muscles are cut

they are further weakened. Sometimes the muscles in my neck and shoulders

are so tight I can't stand it. I am thin and the PT says that they feel like

guitar strings. He tries to stretch them out. It gives some relief but by the

end of the day I can't wait to lay down. But even when I sleep my neck

bothers me. To be honest with you I just learned to live with it and after

reading

so many posts on this web, I feel lucky that this is my biggest problem. I

just hate feeling always sore and because of this I feel like I fatigue easier.

I also have every since my last surgery whenever I bend down my head hurts.

It mimics a sinus infection but I don't have that. I just think it could be

the nerves in the neck compressing when I bend over. Who knows. Just

wondering if you have that problem.

Kathy

[Guest guest]

Hi Cheryl...

What you describe could be almost anything, but some scoliosis surgery

patients end up with junctional kyphosis, which is the problem of the spine

" falling " forward in the upper thoracic area (over the fusion area). I have

that problem, and find that physical therapy exercises help me feel like I'm

keeping my shoulders back.

Regards,

[Guest guest]

Kathy,

I do have the neck problems. I've been told that I have

spondylosis/arthritis there, which helps me not at all. My doctor did tell me

not to say

" spondylitis " because, he said, that is just a " pain in the neck " ! Very funny.

I did

have, through Pain Clinic, injections into the ?facets? there for a while,

but the area closed up and they are no longer able to find the space to inject

the relief. I'm getting along pretty well as far as that goes, though. My PCP

told me to wear a soft collar for about 3-4 hours a day, and I try to do that

early, while I'm still in the house. Therefore, no one really knows I have

this problem. I've also been told to talk more about these things,

particularly to my grown children, but I am just not able to do it. Here, I do

talk, and

this is a blessed site, since I imagine that most of us say more here than

anywhere else. Anyway, I am not being much help for you re the neck and for

that I am sorry. I think that others have said that the area above the fusion

really takes a beating. Well, now that I have rambled on, I will sign off.

Hope this makes some sense!

Carole

[Guest guest]

Hi Kathy,

I don't have your same problem of pain when you bend down-I bet you

are right that it is a nerve problem. I totally agree that lots of

people have much worse problems than you or I may have, but we still

have to deal with our own. I can't feel " good " that I am luckier than

others.

I think we have to stay as fit as possible and keep moving! It may

never be perfect, but, in my case, it gets worse when I can't find the

time to exercise.

Interesting that you mention the fatigue problem-I have long thought

that I have so much less energy than most people, but have had Dr's

dismiss that concern as impossible. I would be interested in hearing

what others think about that. It makes sense to me that, since our

bodies are trying to work with or are working against gravity to stay

balanced,it takes a lot of energy.

Thanks for responding,

Cheryl

> Hi Cheryl,

>

> I had scoliosis surgery in 1997 and revision surgery in 2000. I am

fused

> from T1 to L5. I am 43 and ever since the first surgery my neck and

shoulders

> bother me. I was told by my physical therapist that our neck

muscles are the

> weakest and are responsible for holding our heads up. After the

muscles are cut

> they are further weakened. Sometimes the muscles in my neck and

shoulders

> are so tight I can't stand it. I am thin and the PT says that they

feel like

> guitar strings. He tries to stretch them out. It gives some relief

but by the

> end of the day I can't wait to lay down. But even when I sleep my neck

> bothers me. To be honest with you I just learned to live with it

and after reading

> so many posts on this web, I feel lucky that this is my biggest

problem. I

> just hate feeling always sore and because of this I feel like I

fatigue easier.

> I also have every since my last surgery whenever I bend down my head

hurts.

> It mimics a sinus infection but I don't have that. I just think it

could be

> the nerves in the neck compressing when I bend over. Who knows. Just

> wondering if you have that problem.

>

> Kathy

[Guest guest]

Hi ,

You are right-my shoulders tend to hunch forward and exercise helps

them stay back. Exercise sometimes seems to aggravate my problems,

too-especially the pain. I do think the pain is worse with no

exercise, though. Is your PT trained in treating scoliosis?

Cheryl

> Hi Cheryl...

>

> What you describe could be almost anything, but some scoliosis surgery

> patients end up with junctional kyphosis, which is the problem of

the spine

> " falling " forward in the upper thoracic area (over the fusion area).

I have

> that problem, and find that physical therapy exercises help me feel

like I'm

> keeping my shoulders back.

>

> Regards,

>

[Guest guest]

Hi Cheryl...

The PT I use was on the spine floor at UCSF prior to going out on her own.

So, she treated a lot of postop scoliosis patients under the guidance of

Drs. Bradford and Hu. She seems to understand that scoliosis patients often

need different exercises for the right and left side of their bodies. I

think she's helped me a lot.

Regards,

[Guest guest]

Hi, Kathy,

I am 50 yrs. old. Had scoliosis surgery in 1976 at age 22, fusion T4-L1 with

Harrington rods. Rods and fusion are intact, thank God! I had lots of

problems with my shoulder on the opposite side for a while. That seems to

have settled down somewhat over the years. I do have very " hard " neck and

top of shoulder muscles. Try to do some stretches to help that. Have chronic

low back ache that is better some days than others. Went to message

therapist for a while and that really helped the muscles stay loose.

I live in a small city in South Carolina, so physical therapy is rather

limited in helping scoliosis patients. I feel lucky that I had such a great

surgeon and that all the hardware is still intact.

Hope that you will find some relief soon.

Janet

----Original Message Follows----

From: scoliosis2@...

Reply-Scoliosis Treatment

Scoliosis Treatment

Subject: Re: Shoulder problems

Date: Fri, 14 Nov 2003 17:28:08 EST

Kathy,

I do have the neck problems. I've been told that I have

spondylosis/arthritis there, which helps me not at all. My doctor did tell

me not to say

" spondylitis " because, he said, that is just a " pain in the neck " ! Very

funny. I did

have, through Pain Clinic, injections into the ?facets? there for a while,

but the area closed up and they are no longer able to find the space to

inject

the relief. I'm getting along pretty well as far as that goes, though. My

PCP

told me to wear a soft collar for about 3-4 hours a day, and I try to do

that

early, while I'm still in the house. Therefore, no one really knows I have

this problem. I've also been told to talk more about these things,

particularly to my grown children, but I am just not able to do it. Here, I

do talk, and

this is a blessed site, since I imagine that most of us say more here than

anywhere else. Anyway, I am not being much help for you re the neck and for

that I am sorry. I think that others have said that the area above the

fusion

really takes a beating. Well, now that I have rambled on, I will sign off.

Hope this makes some sense!

Carole

[Guest guest]

Cheryl wrote.....

> I have so much less energy than most people, but have had Dr's

> dismiss that concern as impossible

Dear Cheryl,

I had a scoliosis doctor recently say the exact opposite. He may have been a

rare breed, but he said to my husband, " She spends a whole lot of energy

standing and holding herself upright all day. It is work to have severe

scoliosis. You may not think she has a right to be tired when you think she'd

done

nothing all day, but you are wrong. She has worked hard. " I'd never heard a

doctor validate my experience so well. And if you add pain to that effort it's

no

wonder you have less energy.

There is also the possiblity that you have fibromyalgia or chronic fatigue.

Either way your doctor is not doing you any favor to not believe your

accessment. Just my two cents worth.......

Jolene

[Guest guest]

Ooh, Jolene,

You always " hit the nail on the head " . You are right on target with your

comments about people knowing where the pain is! That was a beautiful posting

that you left.

Sincerely,

Carole

[Guest guest]

Hi ...

I'm not a physical therapist. Sorry.

Regards,

On 11/15/03 5:43 PM, " Bissell " <sue4272000@...> wrote:

> , What exercises do you recommend for a curve on

> the left side? bissell

>

>

[Guest guest]

Hi Jolene,

Thank you for your message. I have actually been diagnosed with both

fibromyalgia and chronic fatigue in the past. I was made to feel that

I was a perfectionist or " just " tired because of depression-obviously

there was no understanding of the impact of the scoliosis. We have a

" hidden " (in some ways) disability. I'm glad your Dr. is more evolved.

Best wishes,

Cheryl

> Cheryl wrote.....

> > I have so much less energy than most people, but have had Dr's

> > dismiss that concern as impossible

> Dear Cheryl,

> I had a scoliosis doctor recently say the exact opposite. He may

have been a

> rare breed, but he said to my husband, " She spends a whole lot of

energy

> standing and holding herself upright all day. It is work to have

severe

> scoliosis. You may not think she has a right to be tired when you

think she'd done

> nothing all day, but you are wrong. She has worked hard. " I'd never

heard a

> doctor validate my experience so well. And if you add pain to that

effort it's no

> wonder you have less energy.

> There is also the possiblity that you have fibromyalgia or chronic

fatigue.

> Either way your doctor is not doing you any favor to not believe your

> accessment. Just my two cents worth.......

> Jolene

>

>

>

[Guest guest]

Dear Cheryl,

I also have fibromyalgia. My energy level has been cut in half by it. You

said, " I was made to feel that I was a perfectionist or just 'tired' because of

depression. " It sounds to me the same underlying message that you received

from doctors dismissing that you have less energy than most people is working

here too.

Validating that what we feel is real is an important part of medicine. As

woman I can't help but feel we are not always taken serious by the medical

field. I think it is often because they can't offer us help so they dismiss our

perception rather than deal with us. It may not always be an option, but I'd

keep looking for a doctor that can. Or I'd voice that I object to that

attitude.

I had a scoliosis doctor recently say, " It's not important what your degreees

of curve are-you still need revision. " I responded, " It may not be important

to You what my degrees are, but it's Important to Me. " He got off his high

horse and figured out my 90/70 degree. Can you imagine the arrogance?

Hang in there and don't let them push you into depression any deeper.

P. S. A great set of archived articles on coping with fibromyalgia/chronic

exhaustion is at

www.cfidsselfhelp.org

Jolene

[Guest guest]

shoulder problems

Just got off the phone with my rheumatologist- he had done an X-ray of my

shoulder earlier today. I had a rotator cuff repair about 10 years ago, and had

been doing fairly well. The last couple of months, tho, my shoulder had begun

hurting a lot, mostly at night. Well, he said my shoulder looked bad. It's not

sitting in the proper place, but has kinda created another place for the joint.

There is almost no cartilage left, and he is surprised the pain isn't much

worse. The plan for now is to try some muscle relaxants and see if that helps by

relaxing the muscles (duh!) around the joint. He said if I was having a lot of

pain, he would recommend a shoulder replacement. Needless to say, I'm not too

happy. If anyone has any specific ideas for saving my shoulder, let me know. I

do swim some and he said to continue with that, but no strength training

machines. I forgot to ask about using a rowing machine, which I use some.

Anyway, any ideas would be appreciated!! Thank you- Ginny

[Guest guest]

Hi, Ginny!

Sally in Little Rock here.

So sorry to hear about your shoulder-that's scary, huh?

I would sure get a 2nd opinion from an orthopedic surgeon. Usually, the

advice is to build up the muscle around the area, hopefully avoiding

surgery. That's what I've always heard about knee surgery. Before you use

(and poss hurt your shoulder more) get a 2nd opinion and ask about phys

therapy.

My heart goes out to you, Ginny!

Good luck!

Sally

shoulder problems

>

>

> Just got off the phone with my rheumatologist- he had done an X-ray of my

shoulder earlier today. I had a rotator cuff repair about 10 years ago, and

had been doing fairly well. The last couple of months, tho, my shoulder had

begun hurting a lot, mostly at night. Well, he said my shoulder looked bad.

It's not sitting in the proper place, but has kinda created another place

for the joint. There is almost no cartilage left, and he is surprised the

pain isn't much worse. The plan for now is to try some muscle relaxants and

see if that helps by relaxing the muscles (duh!) around the joint. He said

if I was having a lot of pain, he would recommend a shoulder replacement.

Needless to say, I'm not too happy. If anyone has any specific ideas for

saving my shoulder, let me know. I do swim some and he said to continue with

that, but no strength training machines. I forgot to ask about using a

rowing machine, which I use some. Anyway, any ideas would be appreciated!!

Thank you- Ginny

>

>