20 Yr Old Sailor Diagnosed With As

Hello
I am a 20 yr old female that was Diagnosed about 9 months ago with AS. Took almost 3 years and 4 different doctors to be diagnoses. At a point I really thought I was crazy....kinda like a mind over matter situation I was just imagining the pain.... I am also a sailor in the Navy. I was shocked when I found out. My 4th doctor came into the room and the first words that came out of her mouth were "I hope you dont plan on making the Navy a lifetime career." OUCH. I didnt know what to expect. I burst into tears.Saw my life kinda flash before my eyes. I like to think I am a pretty positive person, but when I found out about this it became pretty hard to be positive about my future. I am a extremely active person. I love running, climbing, playing soccer, and other sports. So it becomes really difficult when I can barely walk all I think to myself is that I am 20 and at times I am in so much pain I can barely walk. Pathetic.

I like to think I am lucky bc I do have really good days where I have no pain whatsoever. But then at of no where I will wake up in the middle of the night trying to roll over and not be able to without grabbing on to the side of the bed and using upped body strength and being in excruciating pain. Family and friends are supportive. But I dont like to be pitied so I try and hide the pain bc I dont want special treatment. I want to be able to everything the average 20 yr old can do. I dont want people to sacrifice things for me....nor does it feel good to be left. out. I would love to talk to someone else that has this condition. I do have questions. For example does anyone that has been diagnosed with this become pregnant and how does that work with this condition does it effect it at all?

I am on a anti-inflammatory called indomethacin. priolecect OTC for my stomach and hydrocodone for the pain. I am afraid to start using humira because of the side effects.....I dont really think this treatment is working very well though. The hydrocodone usually will take the pain away but makes me so drowsy all I want to do is sleep. My heating pd is my best friend. Pretty much dont go anywhere without it.
Jadders4 Jadders4
18-21
6 Responses Jan 21, 2013

I was just diagnosed yesterday with AS and I need a hip replacement from it and I'll be 21 next month. I'm just curious if anybody has had a hip replacement as well as this. I have to get both hips done. Just would like more information on how I should expect to feel after surgery? Can I walk again?

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Thanks

If you have questions ask;) I was pregnant with AS and plan on again soon...

Twenty is young to be being bent out of shape by AS. I’m sorry. And it’s not necessarily good or bad, what matters is what we do with it. What’s possible from this point on? I’ve been dealing with AS for over 20 years, but at least it didn’t all begin until I was in my late 30s. I’ve lost range of motion in my spine, but I don’t think anything has fused.

Rheumatologists can see the mechanism of the disease, but cannot see the cause, and so they have no cure. They can prescribe drugs to manage the inflammation, but you are too young to be beginning a lifetime of Humira. Yes, with no “cure” it is a lifetime.

So it’s up to us to figure this out, to find the ways out of here. Check out this study done recently by neuroscientists at University of Wisconsin. http://scienceblog.com/59167/mindfulness-meditation-may-relieve-chronic-inflammation/ They found that mindfulness meditation helped people with chronic inflammation to reduce their inflammation. Not just manage pain, but reduce inflammation. Same thing that Humira aims to do. Change your mind, change your illness, and best of all, change your whole life! The journey is long, not necessarily easy, but you have the rest of your life, and it’s well worth it. Mindfulness meditation is just one option, I quote it here because this is a scientific study demonstrating that there are options.

If you’ll read “When the body says No” by Gabor Mate MD, http:www.amazon.com/When-Body-Says-Stress-Disease-Connection/dp/0470923350 start at the beginning, read to the end, you’ll understand where you are. It’ll put you on the map and you’ll understand what you need to do.

And please understand one of the reasons it takes so long to get an AS diagnosis: We’re nice people. We don’t stamp our feet, bang the desk and demand to be fixed yesterday. We’re nice. We don’t want sympathy, we hide our pain, we don’t want to be a burden, we hide it all behind a smile. Get over it. It’s not the genuine you. When we are “nice” we do it at our own expense. Your body has had enough of it. Some people act out, we act in. We have to change that. (The above paragraph is a generalization, it won’t apply to all people with autoimmune conditions, but if you will sit with it for a while, observe yourself, watch what’s going on inside, I think you’ll come to recognize the theme.)

I could write lots and lots more, but first you have some reading to do, and decide if it’s a direction you want to explore. Good luck!

Hi Jadders4, I have AS and yes it took several years and doctors to get the diagnosis right. I can also relate to waking up in the middle of the night in pain. I have also had a lot of relatively good days. If you want to chat with folks with AS you have options. I work at the non-profit Spondylitis Association of America. SAA has tons of information, support groups, chat forums, facebook page, and a 800 hotline. I'd recommend starting with the Forums on www.spondylitis.org.

Hi there. I can hear your struggle, your pain and your fear. I've had AS since I was 21, I'm now 43. Some days the pain is so intense and other days its manageable but never pain free. One thing I am pleased to pass on it that when I was pregnant at the age of 34 it was the best pain free time of my life. I met many people pregnant at the same time as me who weren't back suffers before they were pregnant who really suffered with being pregnant but with the help of chiro and acupuncture I was not one of them!! With the of adjustments from chrio and the new hormones kicking around my body, was the best I've ever been!