They can't figure it out!!!

[tweek29]

I am in a bind.  I have had pain in both hips for the last 11 months.  I started when I was deployed last year.  The pain was bareable and I only had real problems is I sat for too long.  Now just the idea of getting up, walking to work or where ever I need to go makes me miserable.  I have been to the doctors, they have run tests for Arthritis to include:
Rhuematoid Factor , ANA , CBC and some other standard tests.  They just did a CCP blood tests but the results aren't back yet.  Hopefully next week.  Nothing came from those tests but the pain just keeps getting worse.  I have been taking Naproxyn, and now I am on Mobic 15mg a day.  The pain is gone from about 7:30 am until 5pm.  Then I take some tylenol to try and keep me relaxed so I can sleep.  I have gotten inserts for my shoes made, I have had 2 x-rays and the only thing they found there was T11 and T12 were "slighty fusing".  I'm not really sure what that means but no one mentioned it until recently and the x-ray was done in Feb so it can't be that bad right?  So they have me on a Traction machine for the next 2 weeks, 3 times a week (it's pretty cool but just hurts about an hour after it's done).  I had 2 ultrasounds done, one regular ultrasound and one "inside" ultrasound. I can't remember the technical term for it.  The only thing in those were small cysts that the docs say wouldn't be the cause of my pain either.
One doc says it might be Trochanteric Bursitis, and my Physical Therapist is trying to get me an MRI to make sure it's not cancer.  I am wondering if anyone else has any ideas on what it might be.  The act of working out does not affect the hips at all.  It's the inflammation after the fact that stiffens me up so bad that most of the time I walk as though I need a walker or something.  I exhausted all the time from trying to get around, and can't sleep because I roll over on my side or stomach and the pain wakes me up.  It's so frustrating.  I am going on leave in 26 days to see my husband that I haven't seen in 7 months and I would like to be able to keep up with him and enjoy our time together instead of feeling miserable.
If you have any ideas on any other tests they can run or ideas of what it might be could someone tell me?

[tweek29]

I was diagnosed with Spondyloarthropathy and now I need to know what is in store for me...does anyone have any ideas?

[nixh]

I also have that. Have psoriatic arthritis/Spondyloarthropathy. Have you started any treatment like methotrexate? Unfortunately this takes quite some time to start working but the doc will probably put you on a couple of meds. Starting off with a high dose of prednisone to help with the pain/inflamation until the dmards (methotrexate/biologics) kicks in.
I was on methotrexate for a year but didn't help my back at all. I am on arava now but isn't working either so I will be going on humira (biologics) later this year.
Good luck!

[countryrose]

I have had your exact symptoms for the past 6 years without a true lab test indicating any abnormalities yet there are days/months where I am disabled by it. My rheumy swears that I have anklyosing spondylarthropathy, but I disagree. I have been on naprosyn and now piroxicam. I use moist heat daily on my pain areas and when inflamed I use some ice. I have trouble sitting or standing, so I have to alternate almost every 15 minutes or keep moving. Yoga has helped some too...Hope you find something that helps....keep us posted

[txsilver]

I have AS and RA.  I have to agree with the docs, as I read your description I thought of AS.  I can tell you that the Methotrexate works great for joints where you have fluid (fingers, hands, elbows) but not as well where you don't (spine.)   They have greater success treating AS with Enbrel and Humira.  Have they tested you for HLAB27?  You can be negative and still have AS, but it is an indicator.  I suggest you check out the Spondylitis Association of America web site as they have a lot of good info from the basics to the latest and greatest research.
As for what to expect, it is different for everyone.  Some go into remission, some are disabled, some have infrequent flares and others live in flare.  I think it depends on the disease activity, it's progress at the time of diagnosis and how well it responds to the drug regime prescribed for you.  I can tell you it took me about 2 yrs to get diagnosed and then another 8 months before we got the right combo of drugs so that I started to respond positively to the therapy.  Even with a positive response, I have good days and bad days and, my new favorite, side effect days - days I suffer the side effects of methotrexate.
My suggestion for coping is to keep yourself informed, develop a great support system including friends on the web who suffer the same or similar disease and educate your family.  I pray you will be one of the lucky ones who responds quickly and well!