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my aching hips!

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I have been waking up lately, feeling like a mack truck hit me. It hurts worst

in my hips,

specifically in the muscles that extend through my hips and thighs, mostly on

the sides,

where I guess there's pressure from sleeping on my side, in an " s " position.

What do you

think is happening? My pain doctor couldn't tell me, just offered me some

longer-acting

meds. I cannot sleep on my back, as you all know, and the stomach position is

chancy, as I

can wake up with little feeling in my legs if I don't get that pillow tucked in

just right! Any

advice, oh wise Feisty Flatbackers?

Jill

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Hi, Jill --

I'm so sorry you are having this pain.

You need to get a second opinion -- and, if that doctor can not help

you, a third . . . .

Unfortunately we are all, in some sense, " guinea pigs " -- no one

knows for sure what our scoliosis surgery in childhood or

adolescence (or in some cases, adulthood, if a first or later fusion

was peformed that late) is going to do to us long range. The doctors

are learning from us. Too many members of this group have been

turned away with no help by too many doctors who simply did not know

enough to diagnose what was wrong.

Do you need a hip specialist? A rheumatologist? An SRS/spinal

deformity/scoliosis specialist? Within the latter category, do you

need a flatback specialist, i.e., someone who has dealt with many

cases of iatrogenic fixed sagittal imbalance? Would a qualified

neurosurgeon have a different opinion from that of an orthopedist?

Would a physiatrist (specialist in physical medicine and

rehabilitation) be able to help you? All of these are possibilities.

Within any constraints imposed by your insurance plan -- or outside

these constraints, assuming you need to appeal - I think you may

need to fight for the care you need.

I would think you would need to undergo careful testing (possibly x-

rays, scans, range-of-motion assessments in the case of a phyiatrist)

to establish the cause of your pain.

Once you do have a diagnosis, you may need to find a pain management

specialist to help you cope with the pain and work out a livable

life in spite of it. There are new and better treatments every day

for the 50 million Americans who suffer from chronic pain, yet too

many of us are still undertreated and are coping with everything

from severe daily discomfort to relentless agony.

Please don't give up because one doctor did not have a clue. You

need and deserve an informed diagnosis and appropriate care to

alleviate your suffering. Unfortunately no one in this group can

tell you whether the answer is a specific arthritis drug or a

program of anti-inflammatory meds and aquatics/modified Pilates, or

a total hip replacement, or some kind of spinal revision with

paticular attention to previously implanted hardware (to name just a

few of the myriad possibilities). You absolutely owe it to yourself

(and to anyone who may be depending on you these days) to pursue the

most authoritative and knowledgeable professional help you can find.

I know from experience, and from the experiences others here have

recounted, that this is often the hardest thing to do when you are

feeling rotten to begin with -- doggedly pursue the medical help you

need in a complex system full of closed doors and inadequatedly

informed personnel -- and I feel bad for you that you are faced with

this additional challenge on top of the daily challenge you must

meet from the pain itself. Just try to hang in there, and don't take

no for an answer!

Best,

>

> I have been waking up lately, feeling like a mack truck hit me.

It hurts worst in my hips,

> specifically in the muscles that extend through my hips and

thighs, mostly on the sides,

> where I guess there's pressure from sleeping on my side, in an " s "

position. What do you

> think is happening? My pain doctor couldn't tell me, just offered

me some longer-acting

> meds. I cannot sleep on my back, as you all know, and the stomach

position is chancy, as I

> can wake up with little feeling in my legs if I don't get that

pillow tucked in just right! Any

> advice, oh wise Feisty Flatbackers?

> Jill

>

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