Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group No official diagnosis yet

Hi I found this group while doing some AS research online. I am 33 and have had mild back pain for years but it got really bad 3 years ago after having my youngest daughter and I had pain on one side of my sacroiliac joints. My grandad, Aunty and cousin all have AS so I saw my Dr about it and test positive for HLA B27. He said it was unlikely to be AS. I had an X-ray at the time and it was normal.
Since then the stiffness and pain has gotten worse. At times I can hardly get out of bed and when the pain is really bad I find a really hot shower helps a little. I am going back to see my Dr and hopefully get referred to a rheumatologist , last time he said I wasn't bad enough to get a referral.
I have 3 children and really struggle with daily life.
What I find the strangest is the pain sometimes disappears for a few days or even a week. Is that normal? I even had a few months where I felt really good.

Multiple relatives with AS and you with flaring back pain. You do not need permission from another doctor to see a rheumatologist. Some do require referrals, so just find one who doesn't.

And yes, flaring is common for many of us. I used to think you had to go into remission to call it flaring, but now know you can have a lower level of inflammation punctuated with intense flares of inflammatory pain.

It took me 12 years and 5 rheumatologists to get a diagnosis of undifferentiated spondyloarthropathy. If I had known that my aunt had it, I may have been diagnosed sooner, but she was diagnosed after me, at age 65, 50 years after her pain started, a lot longer than it took me.

Not here to complain about myself as much as to make sure no one else suffers the way I did for so long.

Find someone who will listen and help you.

PS Nothing too exciting ever came up on X-rays, CT scans, MRIs, or bone scans. Stuff yes, but stuff that "they" kept chalking up to "other things"….my rheumy now tells me that all these things are the inflammation eating away at my bones….

I started with GI issues when I was a kid, preschool. I started with the joint issues at age 35, 5 years after the GI stuff really took hold.

Thanks for replying Sue, when I first saw my Dr I didn't realise my pain was stiffness also, if that makes sense. So since he thought I didn't have stiffness he said it was very unlikely AS. But since then I have realised I am very stiff in the morning and after sitting for longer periods.
I live in NZ and over here to see a rheumatologist privately would cost a lot of money. Otherwise I have to try and get a referral from my GP and then go on a waiting lists that could take months.
I am very certain I have AS, now I just need to convince the right people. After reading some posts on here it seems many people put up with pain for years before anything is actually done about it.
Could someone please advise what happens once you see a rheumatologist? What sort of treatment do they provide?

Hi Mel81,

I'm a kiwi too, but live in the UK. Are your ESR and CRP blood results raised? Mine were normal, which made life even more difficult.

I saw a rheumatologist, but because I don't fit the normal picture of AS, they did precisely nothing. I'm in my late 30s, female, normal bloods, no GI issues, no relatives with AS, presenting with widespread enthesitis, neck and SI pain but could still touch my toes.

I discovered the low starch diet which has been a huge help, so I don't care anymore, but at the time I was desperate and thus devastated when they pronounced me 'perfectly healthy'. Any fool could see I was not perfectly healthy as I hobbled my way into the consulting room. Garr! Still makes me mad thinking about it.

Karen that's terrible that you were told there was nothing wrong. I might have to look into a low starch diet, it all seems like too much hard work to me.
I have an appointment with my GP today so I hope it all goes well.

First step is to get to see the rheumatologist, so do have another talk with your GP to try and get the referral in motion. Stress that with your family history, you want to know sooner rather than later whether it is AS, as you are in a really good position to get early treatment and avoid the kind of damage that your family members may have now. Also argue that an initial appointment now, even if the rheumatologist decides not to see you regularly, at least gets you on their books for if things do get worse later.

Saw my GP today and he has sent me for blood tests. And depending on the results will refer me to a rheumatologist. He has given me another anti inflammatory to try but I really do to like taking any medication. I will give it a try when I am in the most pain.
I am having lung function tests done next week as I get short of breath very easily. Which could just be asthma, but I have been reading the thread with everyone's symptoms and noticed a lot that have trouble breathing. Is that common with AS? I also have burning sort of pain in my lower back which I never thought important, but it found that also on the symptoms thread. I probably have a lot of other symptoms I didn't realise were related.

I am constantly out of breath ... in fact ... that was my first symptom. However, x-rays always show clear lungs. I personally believe that the back and rib pain and stiffness are affecting my diaphragm which is affecting my breathing. The tighter my back and rib cage, the harder it is for me to breathe.

Blood work (and radiography) are first steps. But if they come up negative, don't give up. Many of us have negative blood work, seronegative spondyloarthropathy…..

I have started taking Naproxen for the pain. I really hate taking any sort of medication but it seems to help a little. Since I saw my Dr this week I am finding each day I feel worse. The stiffness has become really bad. He thinks it's not typical AS since most of the pain is on one side. Does anyone else have only one Joint with bad pain?
I am still waiting to hear about my blood results. If they are good he was going to refer me to physio, but aren't I much better off seeing a Rheumatologist?
I guess if I don't get the result I want I will keep going back to him.
I have three young children and daily life is getting too difficult. No one seems to understand not even my husband. He thinks it's just back pain like he gets, but doesn't realise it's much different.
How did everyone explain to their family etc and get more help and support