Spondylitis Association of America Forums General Discussion Men Only Message Board Just Diagnosed Yesterday...

Hi All -

I'm a 27 yr. old guy, married with no kids and just trying to enjoy life. I was finally diagnosed with AS after years of problems, starting in my left shoulder, and later getting into my hips and neck. In a way, I'm relieved, because I know what is wrong, after 8 years of just assuming I have to be in pain and have people asking me why I'm limping or hunched over in pain all day. I work in an office all day, so I know I'll need to stay active when I can.

I'm also a little nervous, obviously. I have to decide how to handle this, how to fight it, and how to comfort my wife, who seems to be much more upset and scared than I am. If anyone has some words of wisdom, I'd love to hear it. Thanks.

You're right staying active is important. Call around to physical therapists and find one that knows about AS and that you feel comfortable with. Try a new bed and pillows too. I have a tempur-pedic and that helps quite a bit. I also take enbrel, 25mg twice a week and that helps alot.

I think our wives like to help and allowing them to get involved in our treatment can be a great boost for them. Maybe have her try changing your diets. There are many who have success going to a low or no starch diet. That will give her something she can actively research and then you can see if certain foods make you feel better or worse. Post in the general forum and do a search for diet info. There's quite a bit on that issue there.

Also, a physical therapist can show you exercises you can do at home. Then you and the wife can exercise together.

Remember this isn't a death sentence. We have AS, AS does not have us.

I am 33, still in pretty good physical shape, and I was diagnosed about a month and a half ago. I have had excruciating pain in my hips that has migrated up my lower back - started around my 20th birthday. About 5 years ago, around age 28, I was realizing that I was having a really hard time bending over to put my shoes on - I have had to sit on the bed and bring my foot up to put them on for about the last 5 years and just kinda got used to it or forgot about how this was not normal - I just thought this was somehow just all realted to the back pain I was having, and it was but not in the way I thought.

I could write a book on how many doctors I've seen, nerve blocks, physical therapy, etc. and no one could find out what was wrong until now. I've been on indomethecin 75 for the last month - this has helped tremendously. My pain has probably been cut back by a full 50% on good days, 30% on bad days.

I am married as well, 4yrs, no kids yet. Wife is very supportive, but of course concerned. But ultimately she told me that she is fine with it as long as I can be. Like you I was actually relieved that they finally found out what was wrong with me. Then after a week or so I realized how bad the potential for this to get worse can be and I got a little freaked out, but then I just decided that since there is nothing I can do to change the situation, I should just concentrate on staying healthy and flexable (just bought a yoga DVD - I am not the yoga type but I am doing it anyway, and I am going to make the best of it... cut down on the beer (since my doc told me that alcohol makes bones more fragile). Need to quit smoking (I knew this before the AS) but I am having a hard time with this one.

Bmack, Welcome to the boards.You are fortunant that you found out what was causing your problems.
Indomethecin is a strong Nsaid.If it starts to hurt your stomach,there are many meds out there.
Get proper excercise,eat well,and keep appointments with your Rheumatologist.There are many people with AS ,some athletes that live a productive life.If you have any questions,or would like to comment,feel free to join in.We usually have less people here on Saturday it seems,but most come back by Monday.
Best,Mike

G'day,
Mate i feel for you and your wife. I have been diagnosed with AS and have heaps of problems and never ending pain. But the best thing you can do is what you are doing here, talk about it vent your thoughts keep nothing bottled up, explain to family and friends what you are going through, i printed of some articles about AS and left them at work so people could understand what i was going through this saved a lot of embarrasing questions from them. Tell your wife how you feel let her massage you when you feel bad, take hot spa's s together don't let AS run your life. My lady is great she reads everything about AS and helps me all the way.
Take care my friend and as the famous songs say's Always look on the bright side of life.
Craig

Wow. I figured I'd log in and there wouldn't be any discussion in here, yet several people have all posted recent diagnosis to AS. I never even heard of it until a month ago.

I only confirmed on Friday (6/10/06) what I'd been told a month ago, but knew for a long time that something was seriously wrong with me.

The rheumatologist confirmed AS, and while I should be shocked, I knew it was more than my ex-primary care doctor who's story line for the past 5+ years was 'lose weight', his canned answer to basically everything.

Now, I know I have a disease that has a name, it's not my imagination and can be dealt with.

I already have fairly substantial fusing in my spine, and my neck especially is loads of fun, but I'm dealing with a PT now and am slowly working my way into some form of long term exercise.

I have a question for the group that may either be positive or save me a bunch of cash..

The annual Celebrate Fairfax was this past weekend here in No Virginia, and it's our version of a county fair. At the fair, at a booth on the main road, was a group called Roselle Alternative Care, which from my brief chat, is a chiropractic group.

At first, the lady had no idea what AS was, but she quickly thought of it, and she said I should talk to the 'doctor' about it (Are chiropractors really doctors? ?! )..

Anyway.. After talking to this very personalble fellow, he said they can help. He said the link to a bacteria I've read about is considered a prime culprit in AS. And most doctors do nothing to treat for it or even to look for it, which was exactly my experience to date.

He also said that acupuncture and diet can help a lot and in some cases can cause AS to go into remission and even some (he stressed not all) of the fusing can heal.

My question is this a bunch of hooey or is there some validity to it? I found the HLA B27 they swore I'd have was negative, so the fusing exists, the name stayed AS and the prime cause is missing.

So, my theory is the doctors were wrong, what harm can alternative medicine hurt?

Well, this was a lot to type for my very first visit, but I have a feeling this place may become a home away from home for me as my AS progresses.

Thanks for all your input..!

Marty

Welcome aboard! The general forum does get more traffic than this one.

I would stay clear of chiropractors. If they are not well up on AS and the fusion they could do more harm than good. I know some people swear by them but you should weigh the risks carefully.

PT is a good idea.

I take enbrel 2 times a week and add other meds as needed.

Marty, WELCOME TO THE BOARDS. Bacteria has been shown to cause Reactive Arthritis in which you can have fusing.It is a suspect in the causes of other types of arthritis also.
Chiropractic adjustments are not recommended after fusing has started .Some people have benefited from a low starch diet.
The best Doctor to see is a Rheumatologist.If you visit here often you will see what others are going through fighting AS and other forms of Spondyloarthropathies.
For instance I have been diagnosed with Psoriatic Arthritis and Spondylitis.I have finger,hand,shoulder,hip and spinal involvement.
There are a lot of good intelligent people here that are going through the same things as you.
Best,Mike

hi again all..

I tend to think the Chiropractic way is more of a scam.

I went ahead with the appt i had, and they started suggesting all sorts of stuff that would run me about $300-400 a week in bills, and of course it's not network and maybe not even insurable at all. So, i doubt i'll go back. It just felt a little like a car dealership with all sorts of upsells.

Now the other item is I've contacted NIH for their reasearch program and may join their study as i'm not far from NIH..

The doctor said he's been involved with AS since 1992! And he also said the bacterial connection for AS has been studied at length and totally ruled out as a cause. They have determined it's a combination of genes in a pool of about 5-7 different ones, and depending on the combination, it takes 3 or 4 to get AS. Oddly, I was told HLA B27 was the main marker, which I was tested negative. He said that's only one marker that over 10% don't have.

I did see a Rheumatolgist, and may end up having to do more aggessive pain management, as even in the past few weeks, i've noticed more spinal related pain issues cropping up. I don't know why i was dealt this crappy hand, but I guess ya deal with it as best you can.

I'll read more in the main forums and see what's going on there as the men only one is not as busy..

thanks to those who responded!

marty

If bacterial infection has been ruled out that's news to me. This site itself claims that the latest research points to bacterial infection due to intestines leaking it into the blood then into the lower spine. I encountered the disease over 18 years ago after a gall bladder surgery. I was told that my infected gall bladder was the probable cause of AS. But I think it was due to the heavy antibiotics I was on for over 5 days. Antibiotics can cause Candida to turn into a fungal infection that can lead to a symptom known as leaky gut syndrome, where bacteria can leak into the blood stream. Even today I can completely rid myself of AS symptoms, along with the chronic fatigue, and sinus infections I have by taking Diflucan, which gets rid of fungal infections.

BTW what part of Bama Bama?