My gp has suggested that I may have ankylosing spondylitis after many years of lower back pain.

Hi Jill,

?   Sorry to hear of your symptoms.  You will find that AS and its related family of spondyloarthropathies can have variable symptoms.  Personally I had years of lower back pain which were originally diagnosed as facet joint arthritis.  The lumbar pain is probably the most common but so is pain in the sacroiliac joints which are the joints where the lowest section of the spine connects to the hip bones.  These SI joint pains often feel similar to sciatic pain but the pain tends to stay in the buttocks area and down into the hips.  But if you look at some other responses on this forum you wil see that everyones pain profile is different to varying degrees.  Pain in the thoracic back is common as well as pain that wraps around the rib cage to the sternum that makes breathing difficult.  Another common "feature" is that pain tends to be worse in the morning when you wake up and tends to lessen as you take a warm shower and get moving in the new day.  As I said, the pain profie is variable but you have taken a good first step in seeing a rheumatologist.  I have said this numerous times on this forum but I would warn you that AS is a relatively new and growing field of study in rheumatology.  Make sure you see a rheumatologist that has some specialtiy in AS.  Not all rheumatologists are created equal.  A common falacy even among some rheumatologists is that if you dont have xray or MRI evidence of ankylosing (the fusing part of AS) then you don't have anything except maybe oseoarthritis.  I would advise you to do some research on axial spondyloarthropathy or simply spondyloarthritis to understand the family of maladies that AS belongs to.  Good luck and best wishes.

Hi Jill like alot of us mine took ages to get a diagnosis. Mine is neck pain lower back,sitting walking all painful painful ankle right shoulder,when driving have to stop and stretch after 30 mins.my af is all on my right side and due to wear and tear my left knee gives way when walking.I inject once a week with etanercept,also a daily tablet naproxen.I still have pain dread to think how bad it would be without my meds.p's also swelling on inner thigh .good luck .

Hi, some good information has been shared here.  My experience is a bit different.  I started having back and joint pain in childhood and was diagnosed with mild Juvenile  Arthritis.  (My dad's solution was to put a board under my mattress!)  At 19, my knees would swell and become painful- I took OTC ibuprofen 13 years until I became allergic.  I was diagnosed at 32.  Later, I was diagnosed with fibromyalgia.  20 years later I can see the areas of inflammation flare-ups move in my body.  I would say over 45+ years the worst was 2/12 years with eye inflammation (iritus), and for a few years my sacrum was affected and moving my legs was very painful.  I have had some chunks of remission as well.  Currently, the tops of my feet can become inflammed and my center back is painful to the touch, but movement does not increase pain.  I take a variety of medications.  NSAIDS have been my staple.  I take Norco and Tramadol + pain patches as needed.  I take a muscle relaxer at bedtime - it stops the little spasms around my spine and help me sleep through pain.  The organizations devoted to Ankylosing Spondylitis research and treatment can be very helpful.  The best advice I can agree with is to find a rheumatologist who has experience and real knowledge about AS.  Many do not.  I have encountered a couple doctors who say they do, but do not.

Not sure if this has been mentioned yet but make sure to ask the rheumy about being tested for HLA-B27 which is an enzyme in the blood that is usually associated with the family of AS maladies.  Not a definitive measure by itself but good supportive evidence.

Similiar circumstance. Had to change jobs. My major symptoms are double vision, chronic pain-all the time, 24-7,365. Fatigue, loss of strength, no endurance anymore. The rheumatologist will hopefully set you in the right direction with meds. But you have to remember that this disease is usually found through what I've learned is "diagnosis through exclusion". May take a bit to clarify things, so be open minded. Whatever you do, don't stop, physically or mentally. I shut down for awhile and it nearly cost me my sanity. Always look beyond the horizon, it will keep you in motion in more ways than you could count. Best wishes! I would like to hear how things go with you, talking helps. ALOT!