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

Hi everyone! You probably don't know much about me. I have mild AS and the pain is very consistent. I have been in chronic pain since 18, over 20 years ago. Back then I had bad sternum, left sciatica, low back, and neck pain. Also left facial pain. I limped till I was 35 when I started physio and anti-inflam., that's when I was diagnosed. Up until then, I had no clue what I had and thought I was going crazy. AS pretty much ruined my career before, I was very smart, went to university, but couldn't hold a job due to the pain. I'm back on my feet now. Thank God for the doctor who found out what I had cause I was ready to do something drastic. Right now, the pain I feel is still some leg pain, left shoulder pain, left neck, and left face--don't know why it's always on the left, does anyone know why? But the major thing I suffer from is chronic tension headaches. This may be due to TMJ or jaw clenching. I wear a mouth guard. It saves my teeth but the head pain is always there. I've learned to live with it and accept it.
Best wishes to you all!

Don't let the neurologist get you down. Just continue forward. You need to hook up with someone who will take the time to sit with you and really want to help. I've been lucky this way, although I still have some unanswered questions. I went to a neuro. once and he said I was fine too, reflexes all fine, etc. So, guess it must be muscular, joint, or arthritis related, not the nerves. Guess we got good nerves!

Wow! Reviewing everyone's symptoms, tells me that AS has a wide range of complications and problems. Although we all have some similiar complaints, we all have an added issue that may or may not be caused by AS. Are any of you on disability? I am getting close to that point due to complications of chest pains that mimics a heart attack and a desk job (to which I never had any other job) but am afraid of financial issues. I have a job that pays for long-term disability until the age of 65, which kicks in after the 12th week of short-term disability. But I would have to go to the insurance company "doctor" to determine if I am unable to work. I am afraid that he might not agree with my doctor and then what? Any suggestions would be helpful.

Hi,

I have had AS for 10 years now.
It started as stiffnes in neck and lower back.

In last few years it ha spread to ribs, elbows, hips,shoulders,
Iam loosing my hair more rapidly than before but have no idea is it AS related.

hope you feel better
sanela

hi: I had intermittant left hip joint misery starting at 19 and was helped by running on the beach at low tide.At 36 I had open heart surgery for Wolf-parkinson-white syndrome shortly after which My neck ,wrists and left toes fuesed.I kept working for the next 14 years at increasingly sedentary jobs and had 2 neck surgeries for pain in the right trapezias that was useless. I had Eye surgery then for a growth called a ptrygium but it did not help a dry eye condition.i then ,at 52 had surgery for a frozen right shoulder which went great and now need it for the other shoulder but they want to milk me for PT and more worthless steroid shots.I got SSDI at 50 in 2003.It is a job keeping pensions coming in.I can do stuff like fixing the car or house but can only do an hour or two and have to go back to bed.don't even tell them this stuff as they act like if you are not a quadripelliagic you are trying to ripp them off!
Pay attention to what I just said and you will thank me.
Kev

I've had AS for 14 years now and I'm 33.
New issues for me:
A knee popped out of it's 'tracking'.
My thyroid issues are out of whack suddenly
lower thoracic pain which is more painful then the S.I joints which used to be the main focus.
The shoulders are starting to crackle and stiffen faster then they usually do.
The rib pain is a new thing but thankfully that is under great pain control and I do deep breathing exercises thrice daily.
I'm not sure if this is A.S. related but I recently started having a rash on my knees.
I've been having a lot of throbbing ankle, foot and heel pain but not a lot of swelling in the ankles like I used to.
I haven't had any recent xrays so I'm not sure if I'm fused anywhere. I'm actually going to ask the doc for some xrays tomorrow so I can find out if/where I'm fused at.
Iritis : I'm not sure how that works, I'm not aware of ever experiencing iritis.

I have a desk job too but I make sure to get up and move around every 20 minutes even if it's to go walk around and do a few flights of stairs. If I feel the creep start to grow around my neck and other joints I just do some stretching with that Kickas dinosaur in my head.

I would highly suggest looking into the right kinds of upper body stretches n order to help you become more comfortable at your job.

*hugs*

Marn

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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.

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hi there well its never ending theres always a pain somewheres. its been 4 years with as for me. leg pain, back pain, sharp pains in the heart by times, shoulder & neck pain, pins & needles, nearves jumping everywhere, uvites in both eyes,mineareis disise, new thing lately is face & hands swell right up alot when wakeing up in the morning. go back to see the doc in june so i will find out about the swelling. thanks it was nice to read all the posts.

I also have foot, shoulder, right rib, and upper back pain now.

Here's a real zinger for you...I am on a number of meds and excrete through the skin an odor that I am told by my family that smells like sweat....anyone else have this problem? I shower everyday but it is still a problem...use deodorant but it still is there...I am immune to the smell.

Had AS for about 30 years. Started as buttock pain and low back. Then shoulder. Then on and off the low back and buttocks. Had problems with my feet (plantar fascitis) about 4 times. Then suddenly it hit my thoracic area, and almost immediately afterwards my neck, ribs, elbow, knee and both hips. Uveitis and then ulcerative colitis followed.