Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What are your current symptoms?

I have AS for 20 years and I am 43 years old. The past 4 years I have been experiencing new symptoms and I was wondering if there are any others out there who experience new pains.

Old: Iritis in one eye; hip pain; fused pelvic

New: Iritis in both eyes; upper back pain; chest pain (like having a heart attack); neck pain; foot pain; elbow pain; sharp head pain on one side; shoulder pain; loosing my hair; pain in ribs.

I have a desk job, paralegal, and am struggling because the disease has shifted to the upper part of my body, which makes it very uncomfortable to sit for any length of time w/o experiencing pain.

Gotcha beat
Over 30 years of AS and 50 years old.
I endearingly call this whole process of new stuff, "Joint of the month club"
For the first 20 years it was my lower back and knees, and I would get flares here and there. Now it's just one big non stop flare. Every joint in my body is involved, and don't know where the AS stops and the Osteoarthritis begins. Keeping a sence of humor is the key. We know what we have been dealt with and it is up to us to make our lives the best we can or give up. I choose to make the best of it though it is not an easy task as you well know. Oh well, I hope this helps
Cindy

John,

Mid thoracic pain is very common in AS patients. I have a lot of pain from T-1 to T-8, with full ribcage involvement, sternum, and the shoulders and collar bones.

Ribcage pain makes taking a deep breath painful, coughing or sneezing is really toture. You should consider seeing a PT to get some exercises that help keep your ribcage active, it is the one area where you want to prevent fusion at all costs.

Gay

Right this minute I feel fantastic, no pains anywhere. But I take this disease one day at a time, my goal to remain pain free each day. I haven't eaten any starches at all this week, and I just got done swimming, so things are looking up this week.

The interesting thing about this is how it can all change in an instant. I always had pain free days and crippeling days, but I never knew why until I started this NSD.

Do remember ever having any pain free days? I was only chronic for about 2 years when I was diagnosed and then found out about NSD. I know according to my doctor AS is a chronic, progressive disease, with no cure, but I am hoping I can prevent the progression by following this very strick lifestyle. What have you done over the past 20 years to prevent progression, and do you think it helped? Have you taken biologicals? Because they say they can stop progression as well, but I don't know how well that has been proven, if they have been around that long.

I look forward to hearing about everyone's progression over the years, and what they have done over the long haul that may have helped or hurt. Thanks.

Currently, my lumbar and thoracic areas are hurting. However, that's from damage already done (fused left SI and 4 squared off thoracic vertebrae) and the stress I've put on them with a busy chaotic day at work. I'm on Remicade now and rarely get new pain anymore. I've noticed my hands a little and feet are acting up (I will insist on wearing heels ) and I've been walking around the office in stocking feet all afternoon as a result. Also, my occipital area's been bad today. That's been around since my mid-20s. Most of this has to some degree or other.

I also have fibro and Remicade doesn't touch that.

And Remicade doesn't help the weather effects much in the already damaged areas. It's cold and damp today. And I pushed it at the gym this week, as I haven't been able to go in as much since the holidays because I'm pretty sure I had pneumonia, so I'm paying for pushing it.

Actually, today I'm just one big complaint.

Hugs,

Well Hi there , Hmmm where to begin, first I’ve had AS for what i figure is 35 years , looking back at my life it first showed its head when i was 6 years old , I’m now 41 just learned what i had in 2002 . So needless to say i'm one of us as my Rheumy puts it An "advance" case. I totally fused in my lower back, sacroiliac joint are fuse ( thank the Lord) the years i suffered with lower back and SI joint pain was the worset. Now I’m all but fuse in my chest , chest expansion is down to 1 cm , x-rays show my spine as a spinney porcupine looking mess! Over the last eight months i have lost 40 % of my total range of motion in my neck. I just learned this summer that i'm boarded line osteoporosis and have to date broken two vertebra. ( i am today still suffering from the latest break) Which by the way if you've never had the pleasure of one, count yourself lucky cause there's no pain like it !! Hmmm let me see oh ya i'm going to see an occupational Therapist in the next week or so to get assessed and measured for a wheelchair! . i have come to terms with this and knew it would happen sooner or later i had just hoped it would be later.
Even though I’m trying Enbrel i know the truth, i see it in my doctors eyes when they check me out every 6 months. I went to long with no help the damage has been done and now I'm 41 and can no longer look after my family, they have to look after me now. its not an easy thing for a proud man to give in and admit defeat.
Anyway got to go… but remember


Keep On Kicking


Martin

Hi
I'm 36 years old now with 26 years of arthritis (JRA then AS) when I was 19 I got both hips replaced. Since then I have been I have fusing off and on until the point where I am now. Fused forward neck, fused straight back, half fused shoulders, hardening sternum and cartilage in my throat. My newest problems is my ribcage getting stiffer, Osteoporosis, pinched nerves, heart rythem problems, muscle deterioration, and my back is falling apart. I can't do much of anything anymore, I need help walking, getting dressed, showering, can barely cook longer than a few minutes at a time. I can't look forward so I'm always walking into cabinet doors that I forget to close. (that always leaves a nice mark on my head). My back fused straight, but each veratbra is fused twisted to the left or right all the way up my back, and it's very noticeable in the lumbar area. I can't move my neck but my back moves slightly. Also, my hands hurt pretty bad in the joints too.

Well I think that's everything AS related, unless you count Anxiety, kidney stones and some past hernias, lung infections etc. Most of the reason my AS progressed so fast is because I wasn't always under the best of care, and there was a short period of time where I didn't want to see doctors too, when I tried to fight it on my own.

Take care,
James.

I get the worst pain in my SI joint, but also get pains in my neck, under shoulder blades, between ribs, down the arm, ears, jaw......I'm not sure where it WON'T hurt someday. I used to have a desk job and changed careers so that I could move around more. I can't sit at a desk all day and be well. Some people here seem to do okay as long as they get up and stretch every hour or so. Massages do a lot of good for the upper body. You might try exercises such as pilates that have a lot of long stretches. I really feel for you and hope you find a way to get your symptoms to calm down.

Hi James. I've seen your website and you are truly a survivor! I can see what it's done to you and how you are managing too. Keep up the great work and best wishes.

Robert

Hi Robert,
Thanks for the compliments of me and my homepage. Though the neurologist I spoke of in my journaling ended up being useless to me. I will have to update that part again.
Anyways,
Thanks.
James.