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

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I go to see a rheumatologist on Monday to see what they say, I was just wondering what everyone's symptoms are. I've had problems with my shoulders since I was 13 and 10 year of lower back pain which keeps flaring up into muscle spasms which are excruciating. I work as a carer and have had to change jobs as I can no longer do heavy lifting. Can anyone help?

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  • Posted

    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.

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  • Posted

    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 .

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    • Posted

      Sounds nasty. Mine is left shoulder and grinding bones, lower back painful hips and pelvis and muscle spasms which I need diazapan for to relax them. I'm only 38 and feel like I'm ready for the knackers yard, haha

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    • Posted

      It knows no age barriers i was in my mid 40,s when I had my mri to show as,it's getting the medical people to listen and get results.my meds have a list of side effects that would scare rambo.but it makes my pain less so I will take less pain any day.

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    • Posted

      Hiya everyone....some really sensible and knowledgeable replies..I think an MRI is one of the best ways to get the "medical world " to listen as it is "proof"....I have only been able to walk about ten meters until last night when I had to walk about 200 meters to my clinic as there was a difficult birth and the midwife asked for my help.....So. a bit too cocky for my own good...." I can do it"....but now the pain is severe...and after two Tramadols...it is still achy.  Rest and more rest is what I need now....time out again. If I can sleep, I know I will feel better.....hugs to you all for this great forum with so many "friends" with common interests. Thank you all.

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  • Posted

    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.

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    • Posted

      That sounds awful, I've been back to the gp today and have been given codeine 60mg as the diazapan was not working. Hopefully the spasms are easing as I can move a bit better tonight. I'm not sure if the rheumatologist I am seeing is specialised in AS but I will wait and see what they say. I really appreciate all the advice given on here as up until a month ago I had never even heard of the condition.

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    • Posted

      Same here Jill ,I'm in the abreaviation club now as, af ,ha, ca.are you due a mri try and keep note of the level of pain ,and how it affects you from years gone bye.always here kid with a friendly ear good luck.

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  • Posted

    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.
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  • Posted

    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!

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