Hip Pain?

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Hello! My name is Cristina and I'm 19 years old. I've been diagnosed with ACM

1, TCS, EDS, PTC, arachnoiditis, degenerative disk disease, osteopenia, adrenal

gland insufficency/failure and postural orthostatic hypotension. I have been

decompressed (3 times) detethered and have had numerous shunt surgeries. My

last surgery was in September '07 and since then I have been on steriods, first

to reduce swelling and treat chemical meningitis and now for adrenal gland

insufficency/low cortisol levels. I have always had a lot of joint pain,

particulary in my knees and hips. I've been tested for arthritis and related

disorders in the past but not for over a year. Some doctors have thought I

might have fibromyalgia but I don't quite fit the symptoms correctly. Mostly

the joint pain has been put down to the chiari and other problems.

Lately (the last two months or so) my left hip has been causing many problems

and is in a lot of pain. I first noticed it would pop out of place some when I

was walking and that if I walked much (five minutes maybe, walking in a store is

too much) it would be hurting very badly. It has gotten worse and worse and is

now to the point that it hurts pretty much constantly at a dull ache and any

time I walk it gets worse. About two weeks ago my Mom and I went to Joann

Fabrics for less than an hour, twenty minutes of which I spent sitting in a

chair at the front of the store. Afterwards my left hip was hurting so badly I

was almost in tears. When we got home I could hardly put weight on my leg.

This lasted for over a week and even when I was not walking the pain was worse.

This is not the first time that I have had a hard time putting weight on my leg

after walking. I have decreased range of motion, whether due to pain or because

it physically won't go I am not sure as

it hurts too badly to force it. I recently went to my PCP about it because it

is takng away the little mobility I have left and preventing me from increasing

my indurance. She was concerned because I was on steriods and said they can

cause problems with your hips (I can't remember exactly what she called it).

She had me get X-rays taken of my hip but I do not have the results yet.

Has anyone else had any problems like this? What was the reason? Was there

anything that made the pain better? I've tried heat and ice but neither seem to

help. I've also taken motrin and my stronger pain meds when the pain is really

bad which helps some but not with the intense pain when walking. The only thing

I've found that helps is staying off of it but that has its own set of problems

and causes pain in other places. I am getting very frustrated as my physical

therapist thought exercise would help it but so far I have not noticed any

difference and I am becoming more and more limited in how much/how long I can do

things. I was going to return to college in February but as of right now am

unable to largely due to the fact that I can't walk enough because of the hip

pain (even though I am getting a Scooter). I am afraid I am going to be told

that this pain is just from the EDS or chiari and that there will be no

treatment. I've thought about going to the

rheumatologist I was seeing for a while but wasn't sure he'd be much help. Any

help/advice/stories would really help, even if it just makes me feel like I'm

not the only person out there dealing with this! Sorry for the long post, I

guess I got a bit carried away with my frustration. I hope you all have a great

long weekend and that it is as pain free as possible!

Cristina

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