Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Greetings

Hello all,

Thought I'd take a moment to introduce myself. My name is Rob. I'm 41 years old, married to my best friend and have two wonderful sons, ages 14 and 12 (seriously, where has the time gone?)

About 3 years ago, I started to notice a "catch" in my right hip, especially while sitting. When I'd rotate my hip outward, there would be a slight pop and some temporary relief. Honestly, I didn't think too much about it, even when my left hip joined the party a bit later on. I just attributed it to the natural aging process.

Last July, my family and I spent a week at Walt Disney World and had the time of our lives. Obviously, I spent a LOT of that time on my feet and riding rough rides, etc. I remember clearly: I was standing in line at the airport getting ready to check our bags to fly home when, suddenly, my right buttock and thigh went COMPLETELY numb, almost as if I'd been given some sort of injection. No pain at all - just numbness which lasted for several days. I began to think maybe something really was wrong. The pain in my hips and lower spine continued to worsen, it became very difficult impossible to get a good night's sleep and I would have occasional pain in my buttocks and thighs - sometimes pretty severe.

At my wife's behest, I finally made an appointment to see my doctor. Honestly, I felt really out of place. Aside from a bout with H1N1 a few years back, I hadn't been to see a doctor in years. He ran some blood tests and took some x-rays. I was initially diagnosed with arthritis but nothing more specific than that. The inflammation levels in my blood were quite high and I was prescribed 325/5 hydrocodone/acetaminophin (seems odd for AS) and 15mg Meloxicam, both of which I am currently taking.

Fast forward several months and several follow-up visits and doc finally concedes that my problems might be out of his wheelhouse so he refers me to a rheumy. Within 5 minutes of time with me, the rheumatologist began to suspect AS. More x-rays and more blood tests and - bada bing - I was officially diagnosed.

Since then, I've read quite a bit about AS and those who are living with it - and have been living with it for a very long time. Truthfully, I almost feel as if I have no right to complain - but I do. My pain isn't what I'd call excruciating - more like severely irritating. I'm constantly fatigued because the quality of my sleep is so poor - even with Temazepam and the occasional diphenhydramine kicker. Mornings suck until I can work the stiffness out. I have to get up from my desk at least once an hour or I start to hurt which causes me to lose focus on my job. Overall, though, I know it could be so much worse - and that's what worries me. I try so hard to focus on today and not look too far into the future, but I can't help but think, "what's it going to be like in 3 years, 5 years, ten years? Will I be able to continue working? Will I be able to do the things I love - fishing, golf, cycling, etc.?"

I'm sure many others struggle with this. How do you keep it from driving you crazy?

Follow-up question: Based on everything I've read, my treatment program is unusual given my diagnosis. Has anyone else been prescribed these medications for AS?

I have a visit with my primary care doctor tomorrow morning. This will be my first visit with him since my official diagnosis. We'll see what happens.

God bless you all and thanks for reading.

Hello RBarnes,

Glad you found us here at Kickas, this is a great site to learn and receive support.

Can you elaborate why they diagnosed you with AS? Did they find the HLA-b27 gene? Was there x-ray evidence of fusion? That is pretty quick diagnosis for AS.

The pain in the hips was the worst for me early on... I could not even roll out of bed pain was so bad. I did not have numb feeling... just huge cloud of pain/inflammation in the hip. First left hip... a couple years later the right hip.

Do not fret too much about future, there are many treatment options from different meds, diet, exercise etc.. I did well on azulfadine for 6-7 years and now diet for 12+ years, so take one day at a time. My father had AS for 40+ years with fused back/neck.. he continued his job as teacher and retired at 66 and continued fishing until his early/mid 50´s. He gave up fishing because I had moved away and he no longer had his fishing buddy living close by and decided to sell boat.

My dad continued growing roses and became a rose judge in his 40´s. I moved from States to ARgentina 7 years ago and now have a 6 year old son.. live your life and do what you can when you can. AS may get you down from time to time, but you do not need to let it rule your life.

In other words, keep on Kicking.

Best,

Tim

Trechorous. It sounds like you have been dealing with this for while to have gotten an immediate diagnosis if I read that correctly(well all they gotta do is look at ur back but some are better than others) Anyway~ first I found Meds and exercise then got lazy then got smacked in the face and discovered behavior modification. This goes really well with empirical help and one cannot be a substitute for the other, as it turns out. Hope you turn it around and have found a good Rheummy who can help (these guys are really smart and have invaluable resources.) they are Dr's after all.

Did he devise a treatment plan and did you figure out yet what got you the Dx?

Glad you found this place. I am newly diagnosed too. I am closer to your kids age though. I am 18. I have found the advise here very valuable. Remember some things as you read posts here.

Sounds like you got lucky to find a good doc right away and get a diagnosis. Many here went year without proper treatment so they suffered far more damage.

Also as my doctor explained it AS can be a raging lion to some and a yappy dog to others, so there is nothing to say that your AS will progress much farther than it is now. Hopefully your AS will remain a yappy dog, irritating but harmless overall.

My greatest enemy is sleep as well. Best of luck.

Greetings!

For now, let me just address your one concern: the future.

I developed the joint issues at the age of 35 in 1998. It hit me hard right away. The first few years were the hardest as I was undiagnosed and untreated until I finally found doctors and PTs to help me, partially.

It took me 12 years for a dx. For awhile I was able to manage things with PT, some other doctors (no rheumy as I couldn't find one who would dx me, work with me, treat me).

But my body got progressively worse as it is a progressive disease, at least for me without proper treatment.

So I was forced to find a rheumy who could and would dx and treat me.

Fast forward to today. I have a wonderful rheumy. I'm on Humira. I've been a prescription for methylpred if I need it; only needed it once since starting Humira a year ago. And have a wonderful chiro that I see twice a week who keeps me going; he's gentle with me, no stereotypical chiro treatment, rather just keeps things moving as he puts it with soft tissue work and helps my neck with manual traction.

So, 16 years later and I'm now doing better than I was when things first started. My body is worse in a lot of ways, but I'm doing better because I'm getting good treatment, with Humira being the most important part of that.



The other thing to address: I tried meloxicam as one of the many nsaids / cox2 inhibitors that I tried. Either they weren't very effective or if they were, then they gave me gastritis and / or edema. Meloxicam / monic made me kind of dopey and unable to think and didn't do much for me besides. But I guess it was worth trying.

I think the most important thing is having an outstanding rheumatologist and second having an outstanding GP and third having an outstanding team of other specialists as needed. For me that team includes a dermatologist for the psoriasis (mostly gone now due to Humira), a gastroenterologist for the gastritis and inflamed ileum (constipation usually, diarrhea / lack of digestion sometimes) (better on Humira), a podiatrist (i rarely go now, feet so much better on Humira), ophthalmologist for the dry eyes and to watch out for uveitis (dry eyes largely better now on Humira, but this last month, ocular rosacea has been an issue so an eye doc important) etc. Whatever you need, whatever your symptoms are.

To me, good doctors / good treatment is #1 to living well with spondy.

Thank you all so much for the encouraging words. I do feel fortunate that, as of right now, AS has not forced me to modify my lifestyle. The pain is always there - poke, poke, poke - and the quality of my sleep is very poor, but I'm still working full-time, still playing with my kids, still fishing and playing golf. Prayerfully, my AS will be of the "yappy dog" variety. I can live with that.

Regarding my Dx, x-rays showed "arthritis" in my lower vertebrae and my blood tests revealed high levels of inflammation. What cinched it for my rheumy, aside from my description of my symptoms and a physical examination, was the presence of the HLA-B27 gene. So far, there's no fusion in the SI joints or spinal column that he could detect on x-ray.

I've only seen my rheumy twice so far, but I am very impressed with him so far. My GP has been with me since I was a teen - though, as I mentioned, I went a great many years without needing to see him - and I trust him. Today, he switched my sleeping meds from Temazepam to Flurazepam, so we'll see how that works. I'm just so frustrated with feeling like I'm in a fog every day of my life.

I'm hoping my next visit to my rheumatologist in two weeks will help clear things up as far as the way forward because, obviously, hydrocodone isn't a long term solution.

Again, thanks to all of you who replied with kinds words of encouragement. It's nice to hear from folks who have been there and done that.

Someone on one of the AS forums I've read made a comment that has stuck in my mind and I'm going to respectfully steal it as my mantra:

I have AS. AS does NOT have me.

God bless and thanks again!

Yep... you are in the right spot it appears. My diagnosis was family history, fusion that showed in x-rays and HLA B27+... took me over a year to get diagnosed even with being "classic" AS case.

Best to you,

Tim

The best thing you can do then is make sure you stay that way.

Welcome to the site. A lot of good helpful people and information on here. Glad you got your dx. Sorry you've had a thorn in your hip though. Did they also look for bursitis?

You never know what your going to get with this disease. It can go into remission even and then come back out. Just listen to your Dr. and if things get bad, see a Pain Specialist before it gets too bad for you to handle. Sounds like you have some good Dr.s

You don't have to have the HBl-B27 gene to have the disease. I'm negative for it.