Hope is dwindling away…
I have had LBP (now realising very much in keeping with AS symptoms) for the last 5 or 6 years, I’ve been to see countless physios that have given me exercise programs that don’t work, everyone keeps saying it’s mechanical back pain, which I had believed until a few weeks ago.
I started getting really awful groin pain the end of last year which really hurt when I walked more than 150m. I was sent to a women’s health physio to check if I had pelvic floor dysfunction, and when she asked me to describe my symptoms she asked me if I had heard of AS…..light bulb moment!
They sent me for a scan because it wasnt going away after months of rehab. It turns out I have severe osteitis pubis and mild unilateral sacroilitis.
I decided to book in quickly with a private rheumatologist and see what he thought. I was almost certain I had AS, which is why I paid the very high fee.
My bloods are all negative for inflammation and the gene.
The rheumatologist said that he would expect there to be more sacroiliac inflammation with AS so he thinks it’s mechanical.
My question is, does anyone get diagnosed with NR AS with no gene or inflammation markers. Just symptoms?
I’m so confused because if you can get NR AS then how can there be too little sacroilitis?
Thank you for your reply, yes I think I will start to make a symptom diary and then get a second opinion. I feel like I don’t say everything properly in appts because I’m so tired.
The GP has put me on 1000mg of Naproxen which is helping a lot for the 3am night pain. It’s taken it from a 7/10 to 3/10 so it’s less terrifying trying to roll over. So this I am eternally grateful for.But what it hasn’t helped with is the feeling that something is sucking the life out of me, all my bloods are clear. I’m still also stiff in my lower back/pelvis, but stiffness I can deal with.
I just don’t understand when I google mechanical pain it’s the opposite of what I feel. It says that movement hurts and you want to stay still etc.
The rheumatologist actually said to me that the small amount of damage on my scans doesn’t reflect the amount of pain that I ‘say that I’m in’ and then tells me it’s mechanical and then said just keep taking the Naproxen if it’s helping. I think he thinks I’m lying.
I’ve had coeliac disease all my life (confirmed with biopsy) but I still have gastro problems, I’d say in keeping with IBS. The annoying thing is that I don’t have the classic more common symptoms of AS. I have had plantar fasciitis a couple of years ago but it did resolve in the normal amount of time (with shockwave therapy) so not persistent.
I do have a hamstring tendon problem which will not go away and it’s been nearly a year. It’s pain where it inserts to the ischial tuberosity so yes Enthesitis but it’s not a classic AS site so nobody makes a link. No idea how I’ve got severe osteitis pubis.I think I’m going to take my big long list of symptoms in and demand they use them to connect dots.
,
I hear your frustration.
As Rebecca stated, diagnosing axSpA can be quite challenging.
I'm glad to hear you've found something that has provided a bit of relief.
I hope and pray you will find some answers soon. In the meantime, keep journaling your symptoms and compiling your list.
Sending you tons of positive thoughts, Doreen (Team Member)
- Its awful you are trying so hard to get a diagnosis and you keep hitting brick walls. My initial thought as I read your account of seeing your rheumy was, "I sure hope she is getting a second opinion". Many people have been diagnosed with nr-AxSpA without evidence on imaging - but other signs and symptoms were evident (a good symptom journal would be a great source to use and take with you to appts ). And, I feel extremely frustrated to hear "... he would expect there to be more sacroiliac inflammation with AS" I believe he is reading from the "old book" and not keeping up on advances with diagnosis and treatment of inflammatory arthritis AS.
To answer your question - patients definitely get diagnosed with nr-AxSpA when negative for the HLA-B27 gene and have negative inflammatory markers that's why it's called non-radiographic. I suffered and developed more severe spondy problems from my 20s until my diagnosis at 45yo because my first rheumatologist looked at labs and saw they were within normal range and gave the all clear - "Everything is in range, you're healthy." Inflammatory markers only showed up after a severe multi-year flare with horrible ongoing pain and enthesitis. I also had signs of uveitis and IBS. I hope you continue forward and research more about this chronic illness. And I hope these brick walls come down sooner than later. Get that second opinion from someone who specializes in inflammatory arthritis.
Here are some articles that can help you move forward along this journey of pain and discomfort. Please contact a team member should you have more questions or concerns.
https://axialspondyloarthritis.net/diagnosis
https://axialspondyloarthritis.net/understand-test-results
https://axialspondyloarthritis.net/living/self-advocating
https://axialspondyloarthritis.net/living/beginner-tips-rheumatologist-appointment
Sending strength and courage your way. Rebecca (team member)
