Physiotherapy

[Guest guest]

Hi

Therapy was a big part of my life from the age of 8 to 17. I have had it

one other time after I had knee surgery january of 1998. I can remember

complanining all the time to my mom and the doctors and even the P.T. But

it made a big difference in my life. I don't even want to think what I

would be like today if I didn't have it. Sometimes I wonder why I am not in

it now, but then I have not been in real bad shape now for awhile. I try to

do exercise now when ever I can but I don't always do them. I can remember

all the times I was put in the hospital for therapy it was very intense

twice a day 6 days a week when I was in the hospital. Normal I was in the

hospital anywhere from 1month to 6 months at a time. To me it don't seem

like the use therapy as much as they did when I was growing up. But I do

know it is important to do. Well I am going to go. Just thought I would

put in my two cents. take care all

JRA World

http://www.jraworld.com

Physiotherapy

> Hi,

>

> My daughter went into a flare, not that she was exactly arthritis free,

> last fall when she outgrew her methotrexate dose. Both her elbows were

> affected this time and they seemed frozen at 45 degree angles. They

> increased her meth dose from 10 mg to 12.5 mg. weighs 40 lbs and

> her meth is injected.

>

> That had some affect, about 15 degrees in the arms. So at least she

> wasn't craddling the arms, but physiotherapy seemed to be hurting.

> Actually, it was pretty close to impossible to do. Most sessions with

> me and her wound up with her crying and me eventually forcing a few, too

> short, excercises.

>

> About 6 weeks ago we agreed to increasing the meth dose to 15 mg, which

> seems very high. Now physiotherapy is progressing better than it ever

> has. I can actually see noticable improvement. complains but she

> doesn't seem as upset and she isn't fighting me. I think we can get her

> arms straighted out before her next appointment May 9.

>

> There is so much difference, I'm going to hesitate about doing physio

> when her joints are swollen, next time. I don't think it is worth it

> for the little bit of gain or prevention that is acheived. Poor kid,

> she was probably feeling bad enough already.

>

> Do others have some thoughts on physiotherapy. I notice it is hardly

> ever mentioned, but it must be a large element of everyones life.

>

> Joanna

>

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>

[Guest guest]

Both her elbows were

> affected this time and they seemed frozen at 45 degree angles.>>

Joanna,

I'm sure you have already read this article but I am sending the abstract

again. I know they were going to test my son for leaukemia before giving him

a diagnosis of Still's but because of the manifestations they decided not to.

Since then, because the symptoms of leaukemia are similiar to my son's

disease, I have been reading much on both. When I read this article, I

asked my son immediately if his elbows were ever sore and he told me no.

Since then, I am always asking.

I am sure your doctor has already ruled out leaukemia but I can't help but

forget the little boy who we lost a few months back due to a misdiagnosis. I

trust my doctors but I am also cautious. That's why I love this group so

much... I can learn from the experiences of those who have already fought

the battles I am now just starting.

I hope everyone has a gentle next week.

kathy

Rev Rhum Engl Ed 1999 Oct;66(10):520-2

Elbow arthritis: a rare inaugural manifestation of acute leukemia.

Cimaz R, Lippi A, Falcini F

Pediatric Department, ICP, Milan, University of Florence, Italy.

We report four cases of swelling of the elbow in children in whom the final

diagnosis was acute leukemia. We believe that elbow arthritis in children,

especially when isolated, is an unusual finding that is unlikely to indicate

juvenile idiopathic arthritis and should suggest alternative diagnoses

including neoplastic disease.

PMID: 10567984, UI: 20033979

[Guest guest]

Dear Kathy,

Oh my God! Thanks for the article, I hadn't seen it. Something else to

worry about, but it's better to know these things than not.

Joanna

> kathy

>

> Rev Rhum Engl Ed 1999 Oct;66(10):520-2

>

> Elbow arthritis: a rare inaugural manifestation of acute leukemia.

>

> Cimaz R, Lippi A, Falcini F

>

> Pediatric Department, ICP, Milan, University of Florence, Italy.

>

> We report four cases of swelling of the elbow in children in whom the final

> diagnosis was acute leukemia. We believe that elbow arthritis in children,

> especially when isolated, is an unusual finding that is unlikely to indicate

> juvenile idiopathic arthritis and should suggest alternative diagnoses

> including neoplastic disease.

>

> PMID: 10567984, UI: 20033979

>

> ------------------------------------------------------------------------

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> ------------------------------------------------------------------------

>

> For links to websites with JRA info visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Hello,

I would like to ask if anyone know a centre for physiotherapy for people with

scoliosis and harrington rod instrumentation.

This is very important because different exercises should done by people with

scoliosis and people with fusion.

Is there a way for people with harrington rod to avoid the progression of

osteoarthritis and disc degeneration and muscle stiffeness and further surgeries

if following a physiotherapy program, swimming, pilates, reduce working hours

etc?

Thank you,

[Guest guest]

Hello!

I am glad you asked , because I have the same questions for the group!! I

have suffered from lumbar back pain for the past 10 years since my Harrington

rod was put in 17 years ago. The pain has gotten much worse over the past 3

years since purchasing my tempurpedic bed.

I have seen 4 doctors in Dallas, Texas and none of them agree with what to do

with me. My rod is detached at the lower end, but has been this way for about 15

years. Two docs don't want to touch the rod, one wants to take out and do

revision surgery and one just wants to clip the detached portion of rod off!

Three out of four doctors agree that I should do PT and Pilates. One doctor says

my pain ALL stems from arthritis in my remaining lumbar vertebra that were not

fused. He said there is nothing to do about the arthritis. He feels strongly

that the detached rod is NOT the source of my pain now.

In January, I began wearing a back brace for work and physical activity and I

feel better than I've felt in 10 years!!! Given this revelation, I am going to

try PT and Pilates before agreeing to any other surgery.

Surely, there is some progress in the holistic realm regarding arthritis! Anyone

know???

Thanks,

ka

Sent from ka's iPhone

[Guest guest]

>

> Hello!

>

> I am glad you asked , because I have the same questions for the group!! I

have suffered from lumbar back pain for the past 10 years since my Harrington

rod was put in 17 years ago. The pain has gotten much worse over the past 3

years since purchasing my tempurpedic bed.

>

> I have seen 4 doctors in Dallas, Texas and none of them agree with what to do

with me. My rod is detached at the lower end, but has been this way for about 15

years. Two docs don't want to touch the rod, one wants to take out and do

revision surgery and one just wants to clip the detached portion of rod off!

>

> Three out of four doctors agree that I should do PT and Pilates. One doctor

says my pain ALL stems from arthritis in my remaining lumbar vertebra that were

not fused. He said there is nothing to do about the arthritis. He feels strongly

that the detached rod is NOT the source of my pain now.

>

> In January, I began wearing a back brace for work and physical activity and I

feel better than I've felt in 10 years!!! Given this revelation, I am going to

try PT and Pilates before agreeing to any other surgery.

>

> Surely, there is some progress in the holistic realm regarding arthritis!

Anyone know???

>

> Thanks,

> ka

>

> Sent from ka's iPhone

>

ka I encourage you to see Dr. LaGrone in Amarillo, Tx. You may go to his

web..

Alvera White

[Guest guest]

I am a patient of dr Lagrone and I also live in Dallas. Let me know if u have any questions. Melinda Malone Sent from my iPhoneOn Mar 30, 2011, at 8:42 PM, ka <erickasample@...> wrote:

Hello!

I am glad you asked , because I have the same questions for the group!! I have suffered from lumbar back pain for the past 10 years since my Harrington rod was put in 17 years ago. The pain has gotten much worse over the past 3 years since purchasing my tempurpedic bed.

I have seen 4 doctors in Dallas, Texas and none of them agree with what to do with me. My rod is detached at the lower end, but has been this way for about 15 years. Two docs don't want to touch the rod, one wants to take out and do revision surgery and one just wants to clip the detached portion of rod off!

Three out of four doctors agree that I should do PT and Pilates. One doctor says my pain ALL stems from arthritis in my remaining lumbar vertebra that were not fused. He said there is nothing to do about the arthritis. He feels strongly that the detached rod is NOT the source of my pain now.

In January, I began wearing a back brace for work and physical activity and I feel better than I've felt in 10 years!!! Given this revelation, I am going to try PT and Pilates before agreeing to any other surgery.

Surely, there is some progress in the holistic realm regarding arthritis! Anyone know???

Thanks,

ka

Sent from ka's iPhone

[Guest guest]

Thank you very much for the information. I have started pilates and I have decided to reduce my working hours in order to find time for swimming, walking and exercises at home.

Although is a difficulti decision to leave your job that you love and your committed, I think it may be important for the future to try and minimize progression. As I know even if you sit for a lot of hours in work due to muscle relaxant the problem of arthritis and disc degeneration is progressing.

What do you think? Did you modify your duties? I may have to apply for disability to work less hours and this does not make me very happy.

From: cammaltby <cammaltby@...> Sent: Fri, April 1, 2011 9:51:34 PMSubject: [ ] Re: Physiotherapy

Hi ,You asked if there is a way to use non invasive techniques to avoid the progression/cascade of problems that can often befall those with fused spines. It is very much the million dollar question...and one that all kinds of charletans and unqualified folks will offer hope for in exchange for the right amount of money....so be vary wary of anyone that offers you a "cure" or even a guarantee of arresting your condition at its current state.That said, I certainly remember wishing that was true for my case. Part of the process of coming to terms with what my exact problems and pain generators were were understanding what was really a structural problems, what were nerve related, arthritis related and how they would progress over time.Some of your problems may stem from the original fusion...or the un- attached rod...either of which could mean you still have an underlying area on non-union in your original fusion. One member

s doctor discovered a cycst was the source of her pain. Everyone really is unique...you need a good diagnosis before you plan to mitigate its effects....there is just not a "one size fits all"...and as important as it is to pursue all palliative measures, please also do your best to find a very qualified surgeons who is an expert in our populations so that you can begin to form a clear picture of what your structural issues are.I will say that my local ortho diagnosed me with arthritis in the hip and spine.....no doubt some was/is present in both locations...however following revision my hips seems to be just fine....so I wonder how accurate his diagnosis was.No matter what comes in your future...I think generally the wisest course of action is to follow a good regime for maintaining your weight and what flexibility is there. Also...core strengthening is very useful for supporting that lumbar area that is very much over used right now

where you are experiencing accelerated disc degeneration. Could you avoid further degeneration....who knows...but if you have tried all the alternatives and nothing is helping then you will be clearer about what is in your future...and if you choose to try surgery you will be in the best possible shape for a good outcome. I do know some folks seem to have at least bought a little time for themselves with alternative methods...a bit more comfortable and capable...but they did not stop their progression.Nothing ventured...nothing gained though...right? Just be sure to run it all by your doctor to stay safe...for instance you might want to stay away from anything that would physically manipulate your spine. My guess is you will be permitted to try just about anything unless it causes your more pain.Let us know what you decide to do.Take Care, Cam

[Guest guest]

Stavroula,

I am sorry I cant recall if you introduced yourself, or told us where you live,

but I am guessing that you are not in the US? I ask because every country has

different disability laws and what goes for one certainly would not go for

another.

If you reduce your hours without a concurrent doctors diagnosis that you must do

so, does that not limit your entitlement in the future to disability?

Also...making the reduction will lower the threshold upon which future payments

will be based....so I advise you to seek council on this from someone who

specializes in disability before you undertake this course of action.

I get the feeling that you have already made up your mind to undertake a fitness

regimen, and I am guessing that you already have a fair amount of pain...which

is prompting you to do so. Please forgive me if I am incorrect...I just cant

imagine why you would do so unless these statements are correct. I wonder if you

have make attempts to modify your work environment in ways that might make you

more comfortable. Have you the ability and relationship with a supervisor that

will permit you to experiment with such modifications?

I dont recall if you said what you do for work, how old you are or how long your

fusion is. Also...what levels are you fused to, if you know?

I can only related from my own experiences and whats available in my own

community so I may be off base...but you can not exercise full time...it might

well make things worse for you. Why not take a slower approach? Continue with

your pilates 2 or 3x a week and swim or walk the other days. They say the

aquatic environment effectively doubles the workout so just :30 mins of well

planned time in the water can be quite effective without giving up your whole

day. Likewise...walking :20 minutes, finding a way to walk to or at work during

breaks can have the same effect as a walking program at home. And of course if

you are looking to shed weight then that can be done while working simply by

watching your calorie intake and planning carefully for nutritious meals. Taking

weight off slowly is said to be the best method...so just eliminating 200

calories a day (or burning them) will yield about 20 lbs in one years time. So

think slow and steady.

If you havent already found it in our links...there is a book call " Pilates for

Fragile Backs " written by member Andy Stanton and here is a link to it:

http://www.pilatesforfragilebacks.com/index.htm

I am not endorsing this book or promising anything from it. I never did Pilates

myself, we are just sharing whats out there. I believe Andy will correspond with

you if you have questions. My recollection is that she undertook her pilates in

an effort such as you are making, and still did go on to have more surgery, but

she certainly would be a wealth of knowledge for you.

Take Care, Cam