Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group AS question

Has anyone had AS where in the earily stages it was just sacroiliac joint pain and zero back pain when the condition started. The Chiro said they treat people with AS but they usually have back problems as well. My back is fantastic just my sacroiliac joint is sore. I also have plantar fasciitis and some knee pain but this could be associated with me walking with a limp and compensating with other joints and muscles. When I go to the chiro and get things put back into place I am then pain free but it comes back when the joint comes out. I have noticed food with starch makes me stiff. No family history of AS so really am hoping I have been mis diagnosed. Having a job as a dairy farmer and getting up early, I am stiff in the morning until I go toilet and get dressed then I'm fine. I'd like others thoughts.

Hi and welcome to KA.

My AS started with lower back pain which I started attending at a chiro for when I was 16. My SI was the first joint to begin fusing - 22 years later. That's what finally got me diagnosed. I don't remember general back pain, but do recall my neck being adjusted as well as my mid back because I had a rib that kept "popping out". That area is the second area to fuse on me, just in the last couple of years.

Chiro is controversial as a treatment for AS. Please ensure your chiro does your adjustments with an activator/integrator. They are gizmos that allow the adjustment to be done without torque (which can damage our already fragile spines). Very non-invasive and works just as well, if not better. after my diagnosis, my chiro began working with one and doing a ton of soft tissue work to warm up the adjustment areas. Then she would mobilise my shoulders and hips for me.

I didn't have a family history either, but now know a distant cousin on my mother's side has it, as does his son.

Try pilates (mat work only). It was a life saver for me.

You were diagnosed by a rheumy, right? Just making sure.

Warm hugs,

Yes, in my mid 20's I was that way. hips, pelvis. On occation though I had rib pain. It wasn't until my 30's that it moved up my spine. In my teens I had symptoms in my heels.

At one point in my mid to late 20's I went through 3 different mattresses not knowing what was wrong. Back then the doctors just told me I had a sports injury.

I know it's no comfort,., My rhemy said my AS is particularly agressive; but, I will say in 23 years, its never been bad enough I couldn't overcome it with willpower and help. Excersise at your age is key. When I was 24-38, I could still run, roller blade, streach, garden, housework, etc., granted... I often had to take breaks, pain killers, ice and hot packs, and see docs....but it is doable especially if you have someone to back you up and can handle it.

I really didn't have cronic severe symptoms until I hit 38. Now in my 40's and on biologics, I am back to where I was in my 30's. Painful, but managable.

When I became symptomatic, I had both SI pain and lower back pain. That was when I was 28 and progressed from there.

Mine started for all intense purposes in my lower back, but at the time I thought it was due to a back injury playing volleyball. I was 29 at the time. I do remember being in my late teens and early 20's an having my mid back and ribs hurting a lot, but once again, I was playing college level volleyball and thought it was just muscle strain. However, I can tell you that when my left sacral joint started to bother me, it trumped any pain I had ever experienced. My back hurt some too, but nowhere nearly as bad. My sacral and pelvic pain are what put me in a wheelchair before my surgery. I am so sorry that you are experiencing all of this and that you are so young. Have you tried cortisone shots straight into the joint? They have to be done at a facility that has x ray or ultrasound as that is how the doctor knows he is hitting the exact point. It helps some people. Also, do be careful with chiros. Most mean well, but they often have no idea about the seriousness of AS. The best advice I can give you is that your journey through AS will be very different from everyone else. It doesn't make it any less painful or relevant. Search out what will work for you. Go to all kinds of doctors if you have to, but never give up on yourself. You are worth every bit of energy that you put into it. I will keep you in my prayers. Amazonwomanrm

Yes mine was simply sacroliliac pain when it started in 2001, although the term simply doesn't reflect the extent as the pain was extreme. It was most prominent in my tailbone and surrounding with awful muscular pain in my buttocks which I still get and nerve pinching in my buttocks down the sciatic nerve. All the back pain then came on after that. I fell and landed on my tailbone when I was 21 (14 years ago), about a week later the AS symptoms started and that was the start of me and AS.

My neck started first....not sure exactly when, but in a significant way in july 1998...the sacroiliitis flares started in oct 2000.

no other real "back" symptoms.....don't have spinal disc problems like is typical of people with "back" problems. instead for me, its bone spurs, which are common with spondy. the bone spurs in my neck press on nerves and cause pain and muscle spasms up there (head, neck, face, upper back / shoulder). the bone spurs (that show up on my annual bone density scans) in my lumbar spine are currently as asymptomatic.

so for me its neck and SI.....

and ribs "pop out" as kat explained...which causes pain in my back when the rib and the shoulder blade "collide" and trap nerves between, but that's not exactly a "back" problem...well, not in the traditional disc sense.

my discs are pretty OK....some are a bit desiccated....but asymptomatic.

and peripheral enthesitis...especially wrists and feet....but also other entheses....they come and go....unless i pull or tear a tendon or ligament, then it takes months or years to heal up.

and years and years before the joint inflammation started, I've had GI issues....bouts of constipation my whole life....then the intestines became so inflamed that i wasn't digesting my food and had the diarrhea with that when i hit 29...then the gastritis hit big time when i was 30....the GI stuff is largely under control now.

do you have GI issues....many think that spondy starts in the gut....my rheumy and I are pretty convinced mine did. Even if you don't have symptoms, if they do an colonoscopy into the ileum and it is inflamed, that's a sign that its spondy...unless you've taken a lot of nsaids...nsaids can cause that inflammation too.

do you have psoriasis? that's another spondy symptom. mine was mild enough, i thought all those years that it was just spontaneous patches of "dry skin" not realizing that it was psoriasis. my aunt was dx'ed with psoriatic arthritis, though we share so many of the symptoms...its just a matter of which symptoms are the worst...for hers, it was the psoriasis that got her dx'ed. do you get other skin rashes? when i've flared badly, i'd get erythema nodosum.

do you have dry eyes? or uveitis / iritis? do you get mouth sores?

not that everyone gets all these symptoms, but for me, it was putting all the symptoms together that got me the dx.

Started with PF in my 40s, though I could say that there was an unexplained bout of low back pain in my 20s that went away after 6-7 months. Don't remember any particular treatment other than some ultrasound by a PT.

Now, in my 50s, it's PF, SI, a compression fx at T9, some rib pain, knees, fingers.... Quite an assortment, though it's officially dx'ed as PsA, I firmly believe there is AS there.

Hey DairyFarmer24.

I was the same as yourself only had the SI pain and Sciatic nerve shoots. No Spine pain whatsoever.
I have also had other joint issues like yourself with the knees ankles and shoulders playing up from time to time.

However i have now started getting the pain in the lower back which would probably be about 10 years after i started having problems (4 years after being diagnosed).

May i ask who gave you the diagnosis? was it your GP or have you seen a rheumatologist?

Hello All and thank you for your replys. I am the Mother to DairyFarmer24 and registered for my son and he asked me to put the post on about himself,(I have done the typing to date) giving me the health details. He is reading your replys. I have been with him all the way on this and go to the Doc's appointments with him. He was diagnosed by a rheumatologist. They gave him the scans and guided injection of cortisone straight into the SI joint. Seem to only take the pain away for a weeks or so. He has been offered steroids into his body via the drip, takes a few hours a day for 3xdays in a row but we have delayed that for now and also offered sulfasalazine but have decided to stay off the drugs and do the non starch diet. No psoriasis or skin sores. He heals real fast with cuts.