Anklylosing Spondylitis??

[Mellymell]

I am a 35 year old women with chronic low back pain since I was 20 yrs old.  I have been going to the doctor for this back pain now for 6 months because it has been getting worse and affecting my life to a greater degree.  Here are my symptoms:

Back pain and stiffness after inactivity
Morning stiffness
Cant stand up straight after getting up from a chair
Back below my waistband is always tender to the touch and warm
Painful feet, ankles and knees
Entire body is painful to the touch
I have lost range of motion in my hip, shoulder and back
Frequent tendinitis in achilles tendon

My testing has shown the following:

Bone scan showed increased uptake in the lower left SI joint as well as the upper and lower parts of the right SI joint.  Increased uptake in the heel and a bone spur is present.  Knees have a small amount of uptake.  Significant uptake in talus bone and in the mid-foot.

Lumbar xray showed loss of normal lordotic curve and minimal degenerative changes.  SI joints showed no problems.

Blood work all comes out normal.  I am however HLA-B27 positive.

My doctor says there is nothing wrong with me, except that I fibromyalgia.  Do you think I should get a 2nd opinion?

[bigkev414]

Hi I have just read your story and have a very similar dilemma. I am 65 year old male and was diagnosed with ankylosing spondilitis 20 years ago and have had every test known to man. I get all sorts of strange symptoms including joint pains, chest pains, back and neck pains and stiffness , knees, ankles, feet aches,stomach / digestive problems, heart palpitations, a kind of instant asthma lasting for short periods, balance problems.
And so it goes on. Every day for as long as I can remember something hurts and is stiff. (not everything - I'm too old for that bit unfortunately) I have had a number of opinions - degenerative arthritis all over including even small bones in my ears would you believe! It all waxes and wains by the way, but never stops completely
Ankylosing spondilitis will apparently affect everything, but eventually the soft tissue / cartlidge turns to cement and things just lock up and stop hurting, so they say.How much longer I wonder.
Anyway, I have seen several useless,disinterested 'specialists' who write reports which are completely inaccurate (they don't listen - they just assume and write what they habitually write on their reports). I have 5 written opinions stating that I have this disease and two saying 'possibly, but not certain'
I can't offer anything other than I'm still here after 20 yrs and have a few more to go I think so 'chin up', and try to manage it yourself. It won't kill us! The doctors try but there isn't a cure for this, only pain management. best wishes

[flutter7]

Hi, I am a 24yr old female with HLA B27 Postive, Seronegative Spondyloarthropathy. your symptoms sounds very similar to mine.

You definitely sound as if you have one of the spondyloarthropathies. Your bone scan shows uptake in your SI joints, I am assumming sacroiliitis? Do you get alot of pain in your lower back and buttocks area. Is it painful to sit for long periods? Do you get painful clicking in your spine, tailbone or SI joint areas? Does your range of movement feel restricted?

If so I suggest you get a referral to see a rheumatologist. You are HLA B27 positive and have all the classic symptoms of spondyloarthropathy, perhaps not AS though as you don't mention any skin or eye problems.

If you do turn out to have this auto-immune arthritis, they will probably trial you on different anti-inflammatory drugs and suggest you keep up your exercise. Pilates and physiotherapy should benefit you, even water-aerobic exercises.

It would probably be of benefit seeing a sports medicine doctor for your on going care, in between any rheumatologist appointments.

Goodluck.

[flutter7]

How can all those doctors and specialists say you do not have an inflammatory arthritis when you have all the symptoms: the evidence of re-uptake in your SI joints and are HLA B27 positive? Have they done any bloods test to check your ESR, CRP and Iron levels? If you have inflammation those first two should be quite up.

I can understand your frustration, my GP is clueless and just writes out scripts for strong pain relievers. My sports med doctor got me to try several NSAIDs which did nothing. They are usually a first line of treatment anyway. My Rhuematologist put me on Salazopyrin (Sulfasalazine) a disease-modifying antirheumatic drug (DMARD). I've been on this for two months now with no noticeable change. If this medication fails there are no other options which is quite depressing. There are these fancy new biological treatments but the qualification criteria is absurd and it appears you have to be beyond help anyway by the time they allow you it. This of course could be different in every country. They only relief I have been getting is from steroid injections into my SI Joints and soon into my coccyx. I've had four injections of those over the past four years.

I must stress that it would be of benefit seeing a sports medicine doctor. They are the same as a GP but specialise in sports medicine. Even though you would assume the rheumatologist would be more qualified to take care of this condition, I have found my rhuemy to just write scripts and doesn't even do 1/4 of the physical checks my sports med doc does. He is brilliant, if you lived in Australia I would give you his details.

You really need to go see someone new about this asap. It would be horrible for you to start having joints fuse, which is what tends to happen when this condition is not treated. You may have fibro as well, but demand the arthritis to be sorted out and diagnosed! You could always contact one of the doctors on this website and type out what your bone scan results say and see what they reckon.

Goodluck!

[Mellymell]

Well, I have seen my pcp, 2 rheumatologists, and a spine doctor.  All say fibromyalgia.

My first rheumy did not even do a real exam.  He tested tender points for fibromyalgia and said, Fibro and sent me on my way.  No treatment plan, nothing.  SO then I went to another rheumy who did the above testing.

She told me that I had no sign of inflammatory arthritis and I just have fibro.  But when I got a copy of my records, that is when I found out what the reports said.

Not one doctor has addressed my loss of range of motion.  They seem to act like I never have even mentioned it.  I keep asking, nothing.

I just get so mad.  It's like no one listens....