Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Hip pain off the scale

Hi all,

I don't know what to do. My hip pain is off the scale when I walk and getting around isn't worth all the pain I have to go through. When I get to where I'm going and sit down, I literally feel like I've gone through a traumatic experience and I need to rest up for when I have to move again.

Thankfully, I've been taking a course for the last couple weeks, so I'm just going to the education center on base, but next week I'm back at my building and I don't think I can do it.

My parents say I should use my cane, but a cane isn't designed for two limbs and it just doesn't work. I have a doctors appointment tomorrow with my rheumy. I want to discuss the surgery option that my orthopedic gave me, and I'm hoping that he okays it and that it works, because I'm afraid the next step will be a wheel chair.

On top of all this, when I finally do sit down, my back is killing me. I haven't talked to my boss yet about the fact that I don't think I can travel (I'm supposed to be heading out to Texas in a month), but my Mom still thinks I should go. She gave me a look when I said I'd need a wheel chair in the airport. But to be honest, unless I have the surgery, I need a wheel chair in general.

I guess I know better than anyone else whats in my future and I don't have a choice about the surgery, though I want to get a second opinion to make sure I get the right procedure because there are a few of them apparently. I need to get some sleep since my appt. is 7:15 tomorrow.

Sometimes I think the cruelest part of this disease is that it just keeps going with no end in sight.

so sorry to hear how bad your hips are.

hope you find the right doc to help you with hip surgery,

please do keep us posted

I know the feeling of hip pain!!I havent been able to walk for over 5 months now and i can relate to what your saying.It all started with sharp pains running up the leg into the right bum cheek with every step,this was before my diagnososis of AS and i just thought i had straind a muscle.After 4 weeks of not getting better i went to the doctors and they said i have a trocanectic bursit and was given a jab of anti flamitry this did nothing buy this time i couldnt move i sat in a chair most of the day as the thought of moving was enough to shoot me down with the worst pain iv ever incounterd i couldnt do anything for my self i was in such a state.i went back to the docs and they referred me to have an mri scan on my back thinking i had a slipped disc and it could be trapping a nerve in my leg or there could be a disc infectoin,this took another 6 weeks to find out this wasnt the case and then another wait of about 4 weeks to see a hip surgeon.on this visit i had a hip and pelvis mri scan and this was when as was discoverd my hip pain was due to the fact the bone had been ground down and was left in a jagged state and the talk of surgury was on the cards,im on a waiting list to have whats called a birmingham hip replacement and im told this will make the hip stronger than it ever was ,its taken time and im still waiting to have it done but just glad there are ways of sorting this out.I hope you too can find the right way to releave the pain in your hips

Sorry but I don't know all the issues of your hip pain. As someone who had that pain decades ago I tell you that there is good news.

I was exhausted and felt immobilt from the pain the way you are now. Iwas only in my late teens and hitting early twenties. My hips were fusing but not yet fused. Every step hurt. Getting in or out of a car was nearly unbearable. Standing up from most chairs could take my breath away and then once I was on my feet it took a few mintutes to get the leg stretched out so the pain would ebb away.

Some day s I used a cane. Some days I don't know how I got around but I just did only to collapse at the end of the day. I never used a wheel chair but completely appreciate that anxiety and the desire to avoid the pain but sitting cuased just as much pain.

I was told I was too yung for hip replaceement surgery and the technology of it was worse back then. Then my left hip fused completely so the pain was different but still bad and the right hip became more painful as it carried the brunt of my wieght and it was inflameed and fusing.

I got a Doc to believe I was in need of a hip replacement. The difference one month after that surgery was so incredible I could not believe it. The notion of being trapped in my body was gone. I knew AS might affect my spine and it has in the nearly thirty years since that time but not nearly to the painful degree as before the work on my hips.

Keep going. Get the help you need but you will be improved with the right help. I'm just not that tough and I got through where you were and life is good. My back is only bent because my AS started so early and lots of medical choices available today were not back then.

PM me any time if you have questions.

Oh Jeffrey.

Please do let us know how the appointment goes, OK?

Warm hugs,

I went to the rheumy today. He said to stay on the Simponi for at least another few months, but that none of those medicines would help my hips so he didn't object to the surgery.

Seeing as I was at a hospital, I borrowed a wheel chair and found out that wheeling is actually a whole lot less painful than using crutches. Hopefully I won't need any of that after the surgery though.

I got the name of the surgeon and made an appointment with him. The first opening he had was the 17th. The receptionist seemed to indicate I would need an MRI after I met with him, so I'm not sure when the surgery would be.

In case I didn't mention it before, what they want to do is clear a path out from the bursa sack so it can drain. I'm not sure if they're cutting cartilage or bone. The doctor said the blockage is caused by osteoarthritis, so it might be bone.

I can completely relate to Neil's situation of not wanting to do anything but sit in a comfortable chair and stay home, but I also need to keep my job so I think I'm going to have to keep biting the bullet. They do have little motorized carts at the office, so I'll make sure I get one of those though. Hopefully my boss will let me work from home some, too. But I should probably see what his reaction to the whole situation is before I count my chickens.

I'm a little nervous that the bursitis is from the AS and after the surgery it'll still be there. But doing nothing really isn't an option.

That's where I was at last summer with trochanteric bursitis. Mine is definitely caused by my RA and, thanks to prednisone, has improved to the point that I'm walking without my cane now. But I can relate to Steve's description of the pain taking my breath away whenever I tried to stand up and the almost impossibility of getting in and out of a vehicle. Oddly, at that time, the rheumy seemed to pooh pooh it because it wasn't "inside" the hip joint but my own opinion is that trochanteric bursitis is probably worse pain that the joint.

Now, I still have the bursitis but much milder because of prednisone, but the pain has also migrated inside the joint and I feel it in my groin area.

JeffreyS,

You are right on questioning about the bursa sack. I had exactly the same thing 20 years ago. It turned out to be a bad case of bursitis. I got on Indocine, and the bursitis cleared up in days. It was like a miracle. I woke up one morning and found that I had no pain in my hips.

I had been talking to an orthopedic surgeon about a hip replacement too. He said that I was too young, but if that was the only way to get back to living, he would do it, but suggested I go to a rheumatologist that happened to be his friend. The rheumatologist, who was familiar with AS, pushed, and probed a couple of time and knew right away that it was bursitis. Thank God I didn't have the hip replacement.

I can't say that this is what will happen to you, but I'd check out bursitis before you have the hip replacement. Good Luck, and I'll have you in my prayers.

Dean

I have found that ice packs help bursitis a lot. I use it on both my hip and shoulder. At least the price is right and it doesn't react with any of your meds.
Donna

i'm having great success with flector patches over my SI,

maybe one cut in half, placing each half over each hip bursa?

i'm a lover of ice as well, and until i started using these flector patches regularly ( the way one would take their daily meds), i would often have an ice pack strapped to my SI. with the flector patches i don't need to.

just a thought.