Symptoms

[Guest guest]

Matt,

I sometimes notice the muscle twitching as I'm falling asleep. My wife says

I do it a lot. I read an explanation for it one time, but of course can't

find it now. Most everything on your list sure looks familiar!

http://home.dejazzd.com/hower

[Guest guest]

My symptoms are about the same as Matt and Dave's except I have no

headaches...only when my neck flares up badly. Then the head pain is really

bad. It also radiates down back/scapula and arm. However, it is not the

typical type of headache pain you have with tension headache. My sciatica

spasms aren't as bad as they used to be (running down back of leg), but I

have spasms in my upper back sometimes. Usually, lying flat on an exam table,

MRI, Xray can bring those on. Not fun at all. I have the fibromyalgia type of

pain in my muscles most all the time, it feels like a bad case of Asian Flu.

I have rib pain (front and back), but have no difficulty in breathing. For

the last 10 years it has been increasingly difficult to sit, walk, or stand

for any length of time. I can barely stand to make meals...but, I do. My

husband does the dishes after meals. This was particularly difficult for me

to accept. I was not one to have people wait on me to help with household

chores. I've always been very proud of keeping a " perfect " house. God has

delivered me from this prideful attribute. I have never had the fatigue that

some have talked about. The SI pain that once (for 5 years) kept me from

sleeping is no longer a problem, in fact, I'm more comfortable lying down. My

knees are involved (operation on left a few years ago.) The pain is better,

but still have pain on the inside area of knees. They are stiff and some days

are harder than others. During my waking hours, I'm in various levels of pain

depending on what activities I do or the weather. I have IBD so I am never

constipated...just the opposite. I have to take lomotil before I leave home

for an outing at mall, dining, etc. The IBD is so bad that I cannot make it

to the bathroom...just a few feet away. (I know this is disgusting, but it is

something that comes with IBD.) Also, I take benytl for bowel spasms. This is

why my husband does all the food shopping. (another thing I had to get used

to.) My uveitis is so bad that I have been on constant pred (3 X day) and

glaucoma meds for years now ever since my cataract implant. I cannot cut back

at all or I go into full iritis flare. My doctor says I will most likely be

on this dosage for life. I've had bilateral flares, but for the last 10 years

it has only been in my left eye. My AS is not as bad as most men at the same

age as I am...with AS. I'm 67, but I believe I suffer more from the uveitis

than most men. I'm not as fused as men seem to be, but the inflammation and

pain is about the same. I think female hormones have something to do with

this.

Matt, I'm glad you like your new Rheumy and she agrees with your treatment

plan, etc. I guess I've been very lucky with all my Rheumys. (about 6

different ones over the years.) They all have agreed with each other and I

never had trouble along the way like so many of you have. Just luck.

Connie (granny)

[Guest guest]

Hi Matt

FWIW you and I share many of the symptoms, we could almost be twins.

Where we differ:

a bit of a hump. Posture is typical S shape

no headaches

Pain in major muscle groups, not severe, also pain in all major joints

Not too many painful muscle contractions in back, but definately in lower

extremities and they do not go away quickly some days.

Pain in both shoulders, limited range of movement

Pain in both big toes, ankles, wrists, and fingers

We share the " shakes "

I have Atrial Fibrillation along with ventricular tachycardia

Good luck with the new doc.

+Dave

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[Guest guest]

I feel like I could knock myself out in my sleep. I pity the person I come

next to in my sleep. My jumping leggs and jerking body is NORMAL for me.

Brie

[Guest guest]

I got a few of those symptoms + Dave.......

Brie

[Guest guest]

Dear Granny (Connie)

I have tried the perfection thing until my children were in their teens

and my mother was dying of ALS.....Lou Gherig's disease. I was active and I

just had to bite the bullet. Then I had to let go of all things and GOD

showed me how the cow ate the cabbage. Put me down in a field crying with a

bag of pills. So, I put the pills away and let him be my guide. He has led

me by many paths of near death and some into the tropical warmth. My illness

is not how strong I am its how easily do I let him take care of me. Also he

gave me this site and all of you'll......... I am southern. He taught me to

laugh at myself. Praise God I can laugh. He also taught me when its

important to work at this disease and when to let it go.

Many times you all don't know how much I enjoy reading these letters.

I feel your pain, your suffering, and I pray over each and every one of you.

Each of YOU are a precious site, and a child of GOD.

Love to all,

Brie

[Guest guest]

Matt,

I have many of the symptoms on your list.

Pat

[Guest guest]

I have seen my doctor and she indicates that the ReA seems to be

> remitting. She based this on the fact that my knee and ankle at

this

> point show virtually no swelling. As soon as I go off the

> Indocin for 14-18 hours, the swelling in my ankle, knee and hips

> increases. At the same time, I feel stiffness in a finger and

**

It never ceases to amaze me when i have my regular 2 month

appointment, the doctor checks me just about everywhere starting with

eyes,then mouth-tongue, then a look for rashes, chest pain, arm

movement; then checks big joints for heat and/or swelling, and

finally finishes off with big toe and toenail..she (mostly she's)then

hits computer to list findings..which according to exam not much

evidence of swelling or inflamation.She calls Attending and they both

concur that there is hardly any evidence of ReA .And i just stand

there like a dunce and say nothing.....And 15minutes later when i'm

in bus on way home it dawns on me to have said, " of course not, the

inflamation is being held in check by 10 different medications

including metho, .asulfadine, naproxen ,tylenol, large amounts of

neurontin for peripheral pain, elavil ,pyridium and several others

and of course my symptoms are minimal " . Just let me go off a few and

i'll light up like a roman candle within 2 weeks....you might think

the doctor is aware of all this . in x number of cases that doesn't

necessarily follow.. so thanks for reminding me about this..i have an

appointment coming soon with hew doctor. jeff lanneau

**

[Guest guest]

Re: Symptoms

Cheers, Jeff, thank god for some common sense. I add to the

hilarity...Doctor: " you're doing well, keep up the good work " .

Me: " uh (perplexed),OK, bye. " On the way home...What on earth does

she think I am doing, levitating to the 25th century? T

[Guest guest]

And Ray thank you for the humor!!

We need that so badly. It's hard to laugh sometimes but if we can't..

we're dead where we stand/or sit as the case may bed.

Drs. say the weirdest things at times...and DO the weirdest things.. And

they wonder why we tend not to be trustful at times.....

Liz

~~~

" Mistakes are the portals of discovery. " -- Joyce

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

EMAIL: juliette@... **ICQ 49746198** MSN & AIM LizKP1952**

PERSONAL HOMEPAGE PAGE http://members.tripod.com/~LizK

ADDult HOME PAGE: http://members.tripod.com/~LizK/addult.htm

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[Guest guest]

In a message dated 3/26/2003 7:34:24 AM Eastern Standard Time, cholesteatoma writes:

The diagnoses on the script was a CPA lesion, which I

have looked up on the web and have found out a little bit about

this CPA lesion.

, I know very little about & have no experience with Sam's problems. But I do have 2 sons & it sounds like you & your family have been going through some scary stuff. My thoughts and prayers are with you, you are doing the right thing - learn all you can & get the best medical care you can find. April 2, and a clearer explanation, isn't that far off but it must feel like it now. Take care -

[Guest guest]

At 07:31 PM 7/21/2003 -0700, Robin Doyle wrote:

>I have a few strange symptoms which seem a little

>different from all of the information I have read.

Are these symptoms pre- or post-surgery?

I ask because I'm due for surgery in ten days, but have never had symptoms.

Needless to say, I'm not looking forward to acquiring them as one of the

'benefits' of surgery.

Mike

mrichter@...

http://www.mrichter.com/

[Guest guest]

Lexapro is supposed to have less side effects so it is possible.

Hi Again:

I tried Celexa a while back and it gave me very bad diarrhea. Where

Lexapro and Celexa are related is there a chance that this won't

happen with Lexapro?

D.

[Guest guest]

Esther,

Yes, I had symptoms for years. Aches, headaches, migraines, tingling

toes and fingers, pain in the ankles, protruding knots on my shins, Shortness of

breath, targeted back pain - shoulder and neck, flushing of the face, shaky

hands, and gastro problems. Not all at the same time of course, but it had been

going on almost four years before I received a formal diagnosis of Undif

Spondy, Fibro, and Chronic Fatigue Syndrome.

I look back at my parents, both had arthritis, but, both had other

" seasonal " symptoms and stress symptoms that I now recognize as part of the

Spondy

family. My parent were taken very young, Dad at 63 and Mom at 62.

I pray more research and support for the Spondy Diseases will avail.

Treating the symptom is one thing. We have all done that and have been under

a black cloud, some for many years, until we finally find the Doc that has

some education and realizes the our history...etc.

Can you share RISG with your Dad? We are all " first-hand " testimonials!

Janet - Ohio

[Guest guest]

Have any of you had general symptoms for years, but just figured you'd live

with it cause it wasn't that bad? I think m dad may have reactive arthritis as

well, but he hates admiting he's sick.

Adrienne was young (12 years old) and had symptoms...that didn't fall neatly

into a 'catagory' and so was ignored/brushed off when we first started asking

questions and seeking answers.

I hope your dad's case, continues to be mild. However, if he gets 'sick'...

encourage him to see one of your doctors. That way he will be seen by a

doctor who is already familiar with the symptoms and the illness.

Good luck!

K

Adrienne's Mom

[Guest guest]

Hello K,

You wrote>

Have any of you had general symptoms for years, but just figured you'd live

with it cause it wasn't that bad? I think m dad may have reactive arthritis as

well, but he hates admiting he's sick.

Well, I'd have to say that the more I think about it, the more that I think I

may have had some symptoms for a few years now.

Back in 1996 I was on UK leave from the Middle-East and went to stay with a mate

of mine, whose wife just happens to be a nurse.

I had a chat with her and told her that I seemed to be getting a

tingling/twitching sensation in arm and leg muscles along with twinges of pain

in some joints.

Occasionally some of my fingers felt numb with pins and needles, but that I only

usually felt this way when I got back to a cooler climate. (UK)

The Nurse (qualified sister) told me that I was probably stressed out after the

flight or that it could be a little of the aftermath of an accident I had with

my spine, some years before.....I was advised to go to see a doctor, if I was

worried about it, but she felt that it probably wasn't something I should worry

about.

I did go to see a doctor when I got home and he shrugged and more or less said,

" I can't find anything wrong with you, so I don't know what you're worried

about! "

But I didn't feel right and I knew that something was wrong somewhere.......But

I couldn't explain how I really felt!

At that time I'd never heard of anything like RS and I did wonder if it was some

kind of tropical disease that I'd caught, or perhaps the start of MS, or even

ciguaterra from a slightly " bloody " encounter with an angry Moray eel, during a

scuba diving trip.

Either way, the doctor wasn't impressed and sent me away without even taking any

blood or a urine specimen.

I still had these symptoms but kept quiet about them.

It wasn't until I had quite a severe iritis type attack back in April 1999

that somebody mentioned something called Reiter's and I asked what that was, but

nobody answered me.

The local doctor sent an " eye swab " away to the US for testing and it came back

negative............No bugs to speak of.

Shortly afterwards I had another bad attack of iritis and got to see a male

nurse while it was happening...........By the time he'd tried to get me to open

my eyes 3 or 4 times and seen the problems that, that caused me, he was

convinced that something was definitely wrong.

(They'd had to hold me down because it was stinging like hell, running like a

fawcett and I couldn't stand any kind of light in it.)

I had a few episodes like this, without anyone being able to tell me what was

wrong, let alone start any treatment. So I decided to " throw " my job rather than

risk losing my eyesight.

So, I returned to the UK about 6 weeks later and went to see my G.P. who was

still sitting at his desk and smirking, just as he had been, some months

earlier. (I think he hadn't even been home during that time!)

Of course, when I told him about the attacks and produced letters from both the

medical centre's head nurse and the local doctor, I expected him to sit up and

take me seriously.......But he didn't!

He took a quick look into my eyes and said, " No, I can't see anything, if it

bothers you again, just try some eyedrops " , and that was it!

Of course it never gave me a problem when I went to see the doc' but it did

bother me again and again.

And I visited the doc' again and again, until he finally told me, " There are

sick people sitting out there and you are wasting my time! "

It was then that I changed my doctor......But it still took me another 8 months

to get to see an opthalmologist at the hospital.

He checked my eyes and finally said, " Yes, I think that I can see part of the

problem....Tiny cuts or lesions on the eyeball, which have become

septic " .........He gave me some antibiotics and the problem went within 3 weeks.

(But I had waited the best part of a year for this, when it was all that was

required at that time......So I'd given up my job for nothing!)

While at hospital they gave me a 'routine' chlamydia test and found that I'd

never contracted chlamydia (which I think I already knew)

I was a bit surprised about that test and asked them what chlamydia would have

to do with my eyes?

(At that time I still thought that " Chlamydia " was an exotic woman's name!)

But I guess that they were starting to suspect that something was wrong. (And,

that they were even starting to believe me.)

I was ok for about a year after that and quite suddenly I got the Fybromyalgia

type pains and woke up the following morning feeling as though somebody had

taken a baseball bat to me, while I was asleep, yet there wasn't a mark to be

seen..

I went to my doc' and he called this thing " Poly-Arthritis " and said it would

probably just go away soon.

After a number of visits to him I could see that he was also starting to tire of

my inconsistent " phantom " type pains.

Sometime later he arranged an appointment for me to see a Rheumatologist and I

turned up, to meet a bad tempered Indian lady who all but called me a liar, bent

me into every known position, and again told me that there was nothing to be

seen.

I returned to my doc' the following day to tell him that I'd seen an Indian

woman (his third in command) and that she said it was nothing.

Luckily the doc' immediately made another appointment for me to see the

Rheumatologist and about 3 months later I finally met him.

(His bad tempered Indian lady sitting on the sidelines, looking fit to explode.)

After another twisting and turning session and checking knee, ankle and elbow

joints he seemed to think that it was fybromyalgia and that it would go away in

3 or 4 moths time..........So it was diagnosed!

Two years onward I still had those pains and some more!

I had got so used to hearing them say things like, " it's probably just a water

infection " or " it's the soft tissue next to the bone " or, " are you sure that you

haven't knocked the joint against something while you were sleeping? "

That I was rather put off my guard, so when I started getting a pain near my

right kidney I didn't bother going to see my doc'......I just ate or drank some

milk and yoghurt and decided not to miss a day off College.

About 4 months onward the pain became quite acute at times and I decided to just

'pop' in and let the doc' know.

And when I told him, he nearly fell out of his chair, and almost shouted, " Why

did you not come sooner? "

My response was, " Why what's wrong?.....You people keep telling me that I only

have a water infection, or that I've knocked it on somewhere!..........I know

that I'm just the patient but nobody tells me anything...................So how

was I to know? "

Then he told me, " That this could be Reiter's and that this was very serious! "

My response was, " But I've been diagnosed with fybromyalgia, so what's that got

to do with Reiter's and what is Reiter's Syndrome? " .

He told me, " For sometime now I've been thinking that the Rheumatologist has

made a mistake and this may prove it! "

Anyway K......That was my first 'dawning' of Reiter's and that was in July of

this year.

And still nobody told me anything about HLA-B27 and my possible genetic links

with it............Then I had the food poisoning in August (either from an ice

cream or a supposedly 'fresh' crab sandwich), and the main severity of that

lasted about 9 weeks.

(Some quite severe iritis attacks (by my standards) and disturbed vision,

headaches, nausea and low fever and diarrhoea, tight chest and some chest pain

and palpitations.)

And I've had occasional but milder (intermittent) symptoms more or less ever

since.

So that's my story, but I still don't know what's really wrong with me and I'm

no nearer to seeing that Rheumatologist again!

Anyhow, here's hoping that you get a good, long remission for Christmas and the

New Year, 'K'.....................I think that we all deserve that much at

least.

Best regards!

Mal.

P.S. Do these 'medical people' sound foolish or just negligent to you?

[Guest guest]

In a message dated 12/10/2003 8:00:40 PM Pacific Standard Time,

malsam.skysurfer@... writes:

he shrugged and more or less said, " I can't find anything wrong with you,

Sounds familiar! Adrienne was having many symptoms..and at one time I was

told that she was just a complainer and I should stop paying so much attention

to her. That didn't set well with me.

I researched who the Best doctors were in Seattle for her to be seen by and

made appointments backwards. We were in an HMO which meant we could not get

care outside the HMO without going through the gate keepers. So... I called the

doctors I wanted Adrienne to be seen by and asked...How do I get permission

to be seen here? It all took lots of time and phone calls and talking to

everyone in the clinic, and HMO...but we got where we wanted/needed to be.

At one Rheumys office... (I Still admire this man!) He took one look at her

and said...I am not exactly sure what is going on, but I want her seen by Dr

Carol Teitz, she is the best Orthopedic who specializes in Dance and would be

able to sort out what you are suffering. At this time, we had no diagnosis, and

Adrienne was dancing many hours a week. This doctor believed that perhaps

Adrienne's ailments were in some way related to dance. This doctor Even went on

to call our HMO and obtain a referal and permission for Adrienne to be seen

by Dr Teitz.

Dr Teitz proved to be our link to a diagnosis. After seeing her several

times for about a year she ordered up a second MRI and a CT scan. Our HMO read

these as 'normal' and dismissed them as nothing more. We hand carried the

films to Dr Teitz who took one look and said... " These are NOT normal! " She

promptly lined us up with a referal to see a pediatric Rheumatologist. About

three

or four months later when we got in, Adrienne was diagnosed.

Adrienne still sees Dr Teitz.

With the eye involvment, we were fortunate. Adrienne had had a couple of

incidents when this unusual sudden onset swelling, watering, funky feeling would

happen. Thankfully, we had an opthamologist living next door. I told him

about what was going on and he said that next time it happened, bring her over,

or bring her in. He wanted to see her right when the event was happening.

Luck would have it that the next time her eye acted up, he was at home. We

walked over and...he took one look, said, he believed it was arthritis related

and gave a script for some eye drops and wanted to see her in his office the

next week. Of course by appointment time the symptoms were gone, but since he

saw her during an incident, he already knew what he was looking for.

In our experience, there were certainly doctors that when presented with the

symptoms Adrienne was suffering from, had no idea what could be going on and

did the blame the patient, blame the patients mom routine. But with a lot of

work, energy, and research, we found the doctors Adrienne needed to see and got

the diagnosis and treatments Adrienne needs.

I remember hauling Adrienne in to be 'seen' in the midst of some of her bad

headaches... because I wanted it charted what she looked like, how she was,

what her temp was, how glassy her eyes were.

Thankfully now she has doctors who know what she is suffering and seem to be

able to treat it.

Although now we are waiting for an appointment with a rheumatologist that we

have not yet seen, because her other one, has decided he won't accept any

insurance anymore. He only does self pay... he also doesn't do any off hours

calls. He is good...and if I had an extra $100+ laying around I would send

Adrienne to see him. But for now... we will wait to get in to see another well

respected Rheumy... the appointment is the end of March...

And about families and understanding. I think some people have the ability

to be understanding, supportive and patient. I think others just lack it. I

agree with those who say it would be hard to be in a marriage and then have a

partner get ill. Yet some marriages/relationships are able to work through it.

I wish there were a pill we could hand out that would insure a dose of

compassion.

K (who doesn't have arthritis)

Adrienne's Mom

Adrienne age 20, UnDiff Spondy, Fibromyalgia, Chornic Fatigue, Hypo thyroid,

University Student (who is re evaluating her major! Yippee!! Maybe she WILL

get a degree that works for her!!! )

[Guest guest]

In a message dated 12/11/2003 9:37:39 PM Pacific Standard Time,

malsam.skysurfer@... writes:

It makes me angry, when I feel that I'm not being taken seriously by them,

but there are times when I just feel too tired and unwell to really argue

the point with them........So I just sigh and shake my head at them!

It isn't always like this but sometimes I feel as though I'm " flogging a

dead horse " , so to speak.

So very well said! As a patient, we get tired...and when we are not well, or

hurting, it is all th harder to 'fight' our battles in the medical community.

It is so helpful to have an advocate to be there and support us and 'fight'

for us, and ask more questions.

My first experience with having an advocate and the difference in treatment

was years ago. I had suffered from migraines from the time I was a kid. But,

always being told I couldn't have that much pain, go take a couple asprin. By

teen years those asprin were not even touching the pain and I would be in

bed. Finally when I was about 24 my mom took me in to the 'prompt care' and,

because she was there to explain the onset, the duration, the history... I

Actually got diagnosed and Treated for a migraine and then the even better part,

I

was given meds to use when I had another.

Now, granted migraines and arthritis are not the same. But both do cause

Lots of pain and both can be fairly well ignored by doctors who are not familiar

with how to treat pain.

I think it is really very important to have an advocate at appointments with

you to help sort out the information and just be there for support.

Especially if changes are needing to be made. For general check ups if you are

working well with your doctor I don't know that you must have an advocate, but

for

those appointments when there is need to discuss increased pain levels,

decreased sleep ability, changes in symptoms... an advocate is a good person to

have

with.

Oh, and just for contrast of being sick and not having an advocate. A few

years ago I went in to see a doctor, I had bronchitis. But he would not treat

it

because he wanted me to 'get better on your own'...except I never do, I go

into pneumonia. I came home and a week later I was so ill I coughed so hard I

broke two ribs. My midwife sent me to a doctor she knew, telling my symptoms

and I was immediately being treated. But by that time I was so ill it took me

8 weeks to get better. I believe if I had not gone alone to that first

appointment, I would have had a better outcome. I think for some doctors it is

pretty easy to argue with a sick person and tell them 'this is how it is'. But

it

is harder to do that when a healthy person is sitting beside them... asking

more questions or expecting more answers.

And, I smile at your statement about having more luck getting in to see the

queen. You have such a sense of humor! At the same time, I nearly cry for

you, because I can feel the frustration. We dealt with that sort of frustration

when we were in the HMO. Thankfully we had the choice to get out... and while

being outside the HMO costs a bundle, the care is certainly a whole lot

better and the frustration level is way down.

Hey, if you felt up to it...maybe you should petition to see the

Queen...while waiting to see the Rheumy and see who you DO get in to see first!

Take care!!!

K

[Guest guest]

Hello 'K',

Thanks for your e-mail..........For some reason I thought that you also had

" the lurgy " and I do apologise to you for that......I guess that I've

confused you with one of the other 'K' s that we have in the

group...........However, I'm pleased for you!

Reading your stuff here I must say that it's good that you have a choice of

Rheumatologists to go and see and that they are readily available. (I mean

within 3 months or so.)

I could probably by-pass my own doc' and telephone or write directly to the

Rheumatologist's secretary. But short of gatecrashing the " Rheumy's " office

I doubt that I could get to see him........It might even be easier to get to

meet the Queen!

I think that it's very good that you are able to fight Adrienne's corner for

her and force the issue if necessary.

Sometimes it takes just that to see things through.

It makes me angry, when I feel that I'm not being taken seriously by them,

but there are times when I just feel too tired and unwell to really argue

the point with them........So I just sigh and shake my head at them!

It isn't always like this but sometimes I feel as though I'm " flogging a

dead horse " , so to speak.

Anyhow, it's a good job that you have a few doctors who know what they're

doing and are interested.

And, " all power " to Adrienne and her " fight to repossess her life " ........It

can't be easy and you have to admire her gumption and her drive!

(I wish that I could instill some of that drive into my son too....He's a

bit casual about his life at the moment.)

Anyway 'K', thanks very much for your e-mail and I hope that you'll all

enjoy a problem free Christmas and an healthy, happy and prosperous New

Year.

Take care and best regards!

Mal.

[Guest guest]

, have you read Suzy's web page about flatback, and her links, especially

the article by Mina?

I think the most important sign/symptom of flatback is an inability to stand

erect with the knees completely straightened. The head is not balanced over the

hips as it should be, but sticks out in front, throwing the whole body and all

body mechanics off balance.

The most important risk factor for flatback is a Harrington rod fusion which

extends into the lumbar region.

We scoliosis surgery vets are all screwy in different ways, though, so we all

have different sets of symptoms.

Only a spine specialist MD (preferably a surgeon familiar with adult scoliosis

issues) can give you an official diagnosis, but if you have it, it can be pretty

easy to spot in the mirror while standing with knees straightened. (We tend to

stand with knees and hips bent all the time to compensate.)

Which reminds me of one more useful sign. Hip flexion contractures. If you

can't swing your straightened leg behind you much beyond 180 degrees (a roughly

straight line between head and foot), they call this " hip flexion contractures " ,

and this is typically seen in patients with flatback. When I was diagnosed with

this I said, " You mean I'm supposed to be able to do that?! " , and the doctor

showed me how he could. My mouth was hanging open.

I hope you don't have it, but given your surgical history, there's a good chance

you have at least a mild case.

Sharon

Symptoms

Evening All

I have read this site a lot and contributed virtually nothing for

which my apologies.

I have used it as a source of symptom gathering information.

Being unsure if i have early signs of HARMs flay back what ever i

have tried to review others issues to decide. And you know, I am

still not sure.

Something is going on, but what, is unclear

Could anyone spend a couple of minutes just advising on what the

general symptoms I should be looking for are?

General history is idiopathic scoliosis from 13 then Harringtons from

16 and fusion down to L3. Gen Long Fusion to middle of shoulder

blades.

Been static and good for many years, then 2 years ago thought perhaps

shape changing. Rib hump increasing perhaps rotation, and curvature

perhaps below fusion.

Some slight unsteadyness on feet and easily tired with walking and

long periods of standing.

No excessive pain, but some shall we say pressure on and in chest

especially on concave side.

Any thoughts

Thanks

(York UK)

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

------------------------------------------------------------------------------

[Guest guest]

Aw, shoot, I forgot to post the link to Suzy's site.

http://www.microconn.com/scoliosis/flatback_syndrome.htm

Symptoms

Evening All

I have read this site a lot and contributed virtually nothing for

which my apologies.

I have used it as a source of symptom gathering information.

Being unsure if i have early signs of HARMs flay back what ever i

have tried to review others issues to decide. And you know, I am

still not sure.

Something is going on, but what, is unclear

Could anyone spend a couple of minutes just advising on what the

general symptoms I should be looking for are?

General history is idiopathic scoliosis from 13 then Harringtons from

16 and fusion down to L3. Gen Long Fusion to middle of shoulder

blades.

Been static and good for many years, then 2 years ago thought perhaps

shape changing. Rib hump increasing perhaps rotation, and curvature

perhaps below fusion.

Some slight unsteadyness on feet and easily tired with walking and

long periods of standing.

No excessive pain, but some shall we say pressure on and in chest

especially on concave side.

Any thoughts

Thanks

(York UK)

Support for scoliosis-surgery veterans with Harrington Rod Malalignment

Syndrome. Not medical advice. Group does not control ads or endorse any

advertised products.

------------------------------------------------------------------------------

[Guest guest]

I have only one minor quibble with the description of flatback

below. In early stages of flatback, I don't think one necessarily

has visible symptoms. Before my revision surgery, I looked normal to

everyone but a trained orthopedist, and my knees weren't bent to

compensate -- my symptoms were only that I had horrible back pain

from the fact that I was bending backwards on my unfused disks to

accommodate for the missing lordosis, which is what caused my

terrible pain (facets grinding together from bending backwards on

each other, as well as disk deterioration). I certainly had

flatback -- any number of orthos diagnosed my problems as resulting

from the long fusion without lordosis correction in the lumbar

spine -- but I still had my head balanced for the most part, I only

leaned over when I was terribly exhausted, and my knees have always

been fine.

As noted in 's introduction to this site, the biggest

obvious thing for me was a total inability to lay on my back (which

flexed my spine even more)or on my stomach (same problem).

Also, the biggest factor for me in having the revision surgery

before I started leaning over was simply so that I could avoid

leaning over, and eventually wearing out my hips, knees, and

remaining disks. I certainly understand why people put this surgery

off as long as they can, but I was too depressed to live with

increasing pain and THEN have a really difficult operation; for me,

it was a better idea to just get the operation over with since I was

clearly going to have it eventually and if it was going to save me

some suffering to do it sooner, sooner was fine with me.

Hope everyone has a great weekend.

Elissa

> , have you read Suzy's web page about flatback, and her

links, especially the article by Mina?

>

> I think the most important sign/symptom of flatback is an

inability to stand erect with the knees completely straightened.

The head is not balanced over the hips as it should be, but sticks

out in front, throwing the whole body and all body mechanics off

balance.

>

> The most important risk factor for flatback is a Harrington rod

fusion which extends into the lumbar region.

>

> We scoliosis surgery vets are all screwy in different ways,

though, so we all have different sets of symptoms.

>

> Only a spine specialist MD (preferably a surgeon familiar with

adult scoliosis issues) can give you an official diagnosis, but if

you have it, it can be pretty easy to spot in the mirror while

standing with knees straightened. (We tend to stand with knees and

hips bent all the time to compensate.)

>

> Which reminds me of one more useful sign. Hip flexion

contractures. If you can't swing your straightened leg behind you

much beyond 180 degrees (a roughly straight line between head and

foot), they call this " hip flexion contractures " , and this is

typically seen in patients with flatback. When I was diagnosed with

this I said, " You mean I'm supposed to be able to do that?! " , and

the doctor showed me how he could. My mouth was hanging open.

>

> I hope you don't have it, but given your surgical history, there's

a good chance you have at least a mild case.

>

> Sharon

> Symptoms

>

>

> Evening All

> I have read this site a lot and contributed virtually nothing

for

> which my apologies.

>

> I have used it as a source of symptom gathering information.

>

> Being unsure if i have early signs of HARMs flay back what ever

i

> have tried to review others issues to decide. And you know, I am

> still not sure.

>

> Something is going on, but what, is unclear

>

> Could anyone spend a couple of minutes just advising on what the

> general symptoms I should be looking for are?

>

> General history is idiopathic scoliosis from 13 then Harringtons

from

> 16 and fusion down to L3. Gen Long Fusion to middle of shoulder

> blades.

>

> Been static and good for many years, then 2 years ago thought

perhaps

> shape changing. Rib hump increasing perhaps rotation, and

curvature

> perhaps below fusion.

>

> Some slight unsteadyness on feet and easily tired with walking

and

> long periods of standing.

>

> No excessive pain, but some shall we say pressure on and in

chest

> especially on concave side.

>

> Any thoughts

>

> Thanks

>

> (York UK)

>

>

>

>

>

>

>

>

>

>

>

>

> Support for scoliosis-surgery veterans with Harrington Rod

Malalignment Syndrome. Not medical advice. Group does not control

ads or endorse any advertised products.

>

>

>

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

-----------

>

[Guest guest]

Hello of York,

Please see a doctor about the pressure you're feeling in your chest.

You may indeed have flatback, and it may well be that the symptom is

caused by your spinal deformity, but, as you probably know, chest

pressure and becoming easily tired when you walk can also indicate

other sorts of serious problems. It likely won't hurt you to wait to

learn more about flatback before you see an orthopaedic doctor, but I

really don't think you should put off consulting a general doctor or

internist while you do your research into HARMS. Okay?

Regards,

Sondra of New York

> Evening All

> I have read this site a lot and contributed virtually nothing for

> which my apologies.

>

> I have used it as a source of symptom gathering information.

>

> Being unsure if i have early signs of HARMs flay back what ever i

> have tried to review others issues to decide. And you know, I am

> still not sure.

>

> Something is going on, but what, is unclear

>

> Could anyone spend a couple of minutes just advising on what the

> general symptoms I should be looking for are?

>

> General history is idiopathic scoliosis from 13 then Harringtons

from

> 16 and fusion down to L3. Gen Long Fusion to middle of shoulder

> blades.

>

> Been static and good for many years, then 2 years ago thought

perhaps

> shape changing. Rib hump increasing perhaps rotation, and curvature

> perhaps below fusion.

>

> Some slight unsteadyness on feet and easily tired with walking and

> long periods of standing.

>

> No excessive pain, but some shall we say pressure on and in chest

> especially on concave side.

>

> Any thoughts

>

> Thanks

>

> (York UK)

[Guest guest]

That's very interesting, Elissa. As I said, , we all have different

symptoms. I've had trouble lying on my back with knees unbent ever since my

surgery, and sleeping on stomach was out too, as soon as I got out of my cast

and couldn't do the Risser/bedroll thing (sorry if you don't relate; it's hard

to explain without a picture!) By the time I learned about flatback syndrome

and made the connection with my mysterious, fibromyalgia-like symptoms, I was

already quite noticeably pitched forward. So which came first, the symptoms or

the visible signs? I can't say for sure.

Elissa's experience makes even more emphatic my comment that only a spine

specialist familiar with flatback can diagnose you.

I'm curious, Elissa, were you told you had hip flexion contractures?

Sharon

Symptoms

>

>

> Evening All

> I have read this site a lot and contributed virtually nothing

for

> which my apologies.

>

> I have used it as a source of symptom gathering information.

>

> Being unsure if i have early signs of HARMs flay back what ever

i

> have tried to review others issues to decide. And you know, I am

> still not sure.

>

> Something is going on, but what, is unclear

>

> Could anyone spend a couple of minutes just advising on what the

> general symptoms I should be looking for are?

>

> General history is idiopathic scoliosis from 13 then Harringtons

from

> 16 and fusion down to L3. Gen Long Fusion to middle of shoulder

> blades.

>

> Been static and good for many years, then 2 years ago thought

perhaps

> shape changing. Rib hump increasing perhaps rotation, and

curvature

> perhaps below fusion.

>

> Some slight unsteadyness on feet and easily tired with walking

and

> long periods of standing.

>

> No excessive pain, but some shall we say pressure on and in

chest

> especially on concave side.

>

> Any thoughts

>

> Thanks

>

> (York UK)

>

>

>

>

>

>

>

>

>

>

>

>

> Support for scoliosis-surgery veterans with Harrington Rod

Malalignment Syndrome. Not medical advice. Group does not control

ads or endorse any advertised products.

>

>

>

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

-----------

>

[Guest guest]

Hello , (my son's name)

I had lots of doctors tell me my pain was due to having given birth. I had

absolutely no flatback symptoms. Also, I'm very flexible (former gymnast) so I

passed all tests given me. Bending, flexing, etc...

Anyhow, it wasn't until I saw this one particular doctor who understood my

particular range of motion. It was then he performed every test on me to

properly diagnose.

Having said all that, remember...everybody has different symptoms, pain levels,

range of motion, as well as daily activities. Therefore, when visiting a spine

specialist, make sure the doc understands all factors about your physical

activity as well as physical limitations. Write things down.

I walked around visiting numerous doctors before I was diagnosed. After I was

diagnosed, I then went on to get second, third and fourth opinions. I ended up

going back to the doc whom diagnosed me first.

Flatback is not easy to diagnose. That's what I was told a few years ago.

What I'm getting at here is this...don't let any doctor minimize your pain.

Make sure he/she understands your situation entirely.

Good Luck and fear not, because if you do have flatback, there's an awesome

support group here for you.

xoxo's