Spondylitis Association of America Forums General Discussion Men Only Message Board Feeling Scared

I just got diagnosed and feel scared - which makes me feel ashamed and depressed too. I guess it's the uncertainty of knowing if I'll be able to work to support my family. I seem to be already at a state where I'm having breathing issues and difficulty to walk. Any advise for me? Can the progress be somewhat slowed?

Yes, things can be slowed. You need an aggressive rheumatologist. Shop around. The very best thing you need is a rheumatologist who will listen to you. It's worth a million bucks.

First I want to welcome you to the site. Know that you are not alone and understand that AS is not a death sentence. We all progress at diferent rates, we all have good days and bad days, and staying positive and taking an active role in your treatment are very important. As mentioned above, a good rheumy is very important. Find one that will work with you. Look through this site and the forums and you will find many of us have gone through the same things. Find a physical therapist that will teach you things you can do at home or at a gym on your own to maintain range of motion and help you fuse upright instead of hunched over (you may not fuse completely) also, the exercise is good for treating depression and stress as well as fight osteoporosis. Again, I say get active in your own treatment. Whatever you, do NOT give up and just lay or sit there and wait to fuse.

Feel free to ask whatever questions you may have. I suggest using the general message board (except for personal male only topics) as you will get more responses that way. We are here to help, we will give answers when we have them and we will laugh and cry right along with you.

As we say "I have AS, AS does not have me." You may need to make adjustments but that is not the end of the world.

Hang in there! I was diagnosed 13 years ago and am still charging ahead. Things are tough sometimes, but a positive attitude can change everything. I'm still working and providing for my family. Talk to dr's and others with similar problems. Don't let anyone bring you down!

Johnny, I am newly diagnosed but my rheumetoligist says that based on my medical history, I have probably had this for a lot of years. I have been physically active all of my life and ironically enough have allways loved weight lifting, one of the activities that appears to affect this disease positively.

I have had a lot of joint pain for a long time but always attributed it to injuries incurred in years of power lifting and Judo but finally got to the point that I was having a hard time dealing with the pain so finally was diagnosed to make a long story short. Unfortunatly I had already incurred a lot of damage to my spine and hips so being diagnosed and treated early is a "good thing".

I have just started treatment this year, a combination of IV/IG infusions for my immune system and recently EMBREL so I am actually feeling pretty optimistic as I think anything has got to be an improvement. The point here is that I am 58 years old, and intend to work until normal retirement and probably beyond. I have talked to several people at thsi point who have made an amazing accomidation through a combination of exercise, diet and medication such as EMBREL. One man in his mid fourties, diagnosed for over 10 years told me that he is planning on doing the Canadian Iron Man this year (see Atheletes Against AS).

Even though I am "new" to this, my sense is that if you "pay attention" to the treatment and management of this disease and are diligent, you should not have to worry about being able to continue to live and support your family.
mike

I want to thank everyone for replying. I'm going to look for an new Rheum. Getting answers from the guy I see is like pulling teeth. I will say he at least finally diagnosed me, which several other physicians did not. I'm going to have the right attitude on this, work out and try new and alternative meds. I thank you for posting replys and will update this site down the road when I start to feel better. I'm glad to hear about guys out their functioning and continuing to work. It gives me a lot more hope.

you have to realize, no one is new to AS. you have had it your whole life. we are born with it and it grows with us as we grow. you just now know why you feel the way you do. taking care of yourself needs to be higher on your list now, especially if you are to keep working. the number one thing you can do for yourself is to stay active and keep going. you will have rough days but you will also have great days. believe in yourself because you are still the same person you have always been.

I know what you mean to be scared. I am currently getting diagnosed. I have had pain in some form for 5 years now and I'm 28 years old. My doc thinks it's AS but I don't have the B27 gene so it makes it harder to tell. On top of that I have been battling prostatitis which exacerbates my symptoms. I'm like you. Scared. It's nice to have this little forum to vent. Definitely helps. Thanks

Paul

The previous posters were good and I don't have a lot to add except reinforce their emphasis on getting a good rhumatlogist and PT. Try to get a Rhum who has as many AS patients as possible. Also, I have had worthless PT and very good PT.
I have been pretty active for a long time.
I didn't have or didn't avail myself of this board for many years but encourage you to check it out for suggestions. Good luck. No, good fact getting.