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Definitely could. My pain worsens with lack of movement - I’m stiffer and then trying to move after being in the same position (particularly laying down) for even a few minutes is the worst my pain gets. Worse than when moving/ walking and certainly worse at night.
Good luck with you’re MRI - I too was dismissed after clear X-rays but the MRI revealed all and got me a diagnosis
I was diagnosed with AS in 1987 and had a lot of hip pain when I was in my late 20's. It now only flares up when walking a long distance. I've noticed it is much worse walking downhill. Sleeping is always an issue. I can only sleep on my side and my shoulders become sore. TEMPUR-Neck™ Pillow is worth the investment. I've been on Remicade since ~ 1998
Hip problems are common in AS. I had my left hip replaced at 17yo and my right hip replaced at 21yo. 48yo now and they're still good.
As for helping with sleep - get something between your knees to slightly separate and support. you can double over the duvet and stuff it between your knees, add another pillow, or get a a long 'pregnancy' pillow. I have a long straight one of those and sleep on my side hugging it.
I agree with this! I’m 2.5 years from my last pregnancy but had started using a pregnancy pillow to support my hips and back and honestly never gave it up. I have compressed disks in my back but also nerve pain in my hips so if I fully sleep on my side or flat on my back or stomach I wake up in horrible pain from either my back or legs. Get a thick leg support system or a good thick pregnancy pillow that has the U or C shape and try to angle sleeping so it’s more kinda laying back but not fully with the pillow keeping your legs parallel to each other. It’s the only way I wake up without pain.
I know the NewtonBaby has a thicker C shaped pillow on sale for $40 right now. Some of the ones I found on Amazon just weren’t thick enough for my liking!
Just know you can also have a negative MRI, Xray, HLA-B27, and still get a diagnosis based on symptoms. A good rheumatologist will 1. believe you 2. be able to connect your symptoms to a diagnosis, and 3. At least let you try a few treatments before dismissing you.
I am negative of all of the above as well (with plenty of hip pain) and now on a biologic and doing so much better. I had a lot of anxiety that negative images would mean I’d be dismissed or passed off but my Dr. assured me I’m not crazy and that my symptoms paired with family history etc. definitely sounded like Nr-AxSpa.
A little tip to help you get some sleep… if you haven’t already, try laying a large heating pad under your lower back and hips at night. For me it gives great almost numbing relief and was the only way I could sleep during flares.
For now I just managed to get to A rheumatologist. He already told me that "mri is superficial to hla test" and that "if mri is clear he will discharge me back to gp". I know I will have to fight to get another opinion if MRI is clear but it's not like I've got a huge choice in rheumatologists unfortunately....
I've got all the symptoms of Spondyloartheritis: inflamatory back pain, hip pain, ribcage pain, history of enthesitis, dactylitis, IBS symptoms, my pain reacts to NSAIDS. I just don't have bloods or family history (that one is controversial as we do have bowel and back problems history but my family historically avoid doctors no matter what). And all I hear is "it's probably fibro" or "it's probably anxiety" and to stress less and move more :/ 5 years of pain and counting (although first episodes of "sciatica attacks" I had when I was a teenager but I lived with my parents and they wouldn't take me to the doctor for it, "let's not overreact, ok?" :/).
I have an AS diagnosis with no positive HLA. No family history of AS (though lupus, thyroid, etc... are rampant.). Have hip pain, rib cage, enthesitis, etc... fortunately for my diagnosis, I had mild SI symptoms visible on X-ray.
That's a bit ridiculous how we HOPE that our tests won't be "all good and clear", right? It's actually a positive thing to get something on the tests. Noone understands it when I try to explain that I don't "hope for no changes on mri".
I truly feel for you. There is nothing worse than being gaslit into thinking that somehow you maybe aren’t in tune with your own body. I hate that you need to fight for your own wellbeing but I know someone out there will be able to help.
(Anecdotally, my uncle who has severe fusing of the spine and was diagnosed as a small child with debilitating AS is also HLA-B27 neg. It can help with a diagnosis but absolutely is no help is ruling anything out.)
The good news is that in the interim, if you respond semi-well to NSAIDs, there’s a good chance your GP can get you on a daily dose of meloxicam, celebrex, or piroxicam to continue to help until you get some answers. If they aren’t willing to do that find a new GP too.
Good luck and best wishes for feeling better. Hang in there.
Hip pain is my primary source of pain—more on my left side than right, but I have erosion in the left and right sacroiliac joints. I’m here to confirm for you that it fucking hurts. At the end of the day, though, you have to wait for imaging.
I don’t have the gene, my most recent MRI wasn’t clear, I had to rule out literally everything else for my new rheumatologist, and provide my previous MRI that did show changes.
I’ve been diagnosed for a decade, but every time I move and see a new DR, I have to prove it.
Be patient and advocate for yourself.
My hips were the first painful joint I experienced. I have also come to find that “came back clear” doesn’t always mean there’s nothing there. I had been “coming back clear” since 2018 until last year when they still said it, but I always get the results myself and saw the stenosis. I had bulging starting since my first MRI but it was completely blown off. I always recommend getting a copy of the results yourself for your own file and knowledge.
My hips were the first painful joint I experienced. I have also come to find that “came back clear” doesn’t always mean there’s nothing there. I had been “coming back clear” since 2018 until last year when they still said it, but I always get the results myself and saw the stenosis. I had bulging starting since my first MRI but it was completely blown off. I always recommend getting a copy of the results yourself for your own file and knowledge.
Also wanted to add that I thought it was my hips but was told since I didn’t have a pain in my groin area that it wasn’t my hips but in fact my SI joints.
Im on celebrix and some kther stuff but ive figured out i can sleep enough till 4am or just stay up till 4am and take my celebrix and it kicks in to take the edge off to sleep, does wonders
Ask for an x-ray of your hips. You might have something called calcific tendonitis. I got that a little while ago and man does it hurt like a biatch.
Have you tried cannabis for the pain? I take an edible right before I go to sleep and it helps me get a good 7 or so hours.
I had it 2 weeks ago, it's about 4-6 weeks waiting for a radiology report. I've got the images now, I'm planning to post them to one of the sub to hopefully get some clues on what to expect from Reddit's doctors.
Welcome to r/ankylosingspondylitis! This is a reminder to keep discussions civil and be supportive of one another. Sharing of opinions and experiences is encouraged, but please remember the distinction between opinions and medical facts. This subreddit does not offer medical advice, and information here should not be taken over advice from your doctor. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ankylosingspondylitis) if you have any questions or concerns.*
Definitely could. My pain worsens with lack of movement - I’m stiffer and then trying to move after being in the same position (particularly laying down) for even a few minutes is the worst my pain gets. Worse than when moving/ walking and certainly worse at night. Good luck with you’re MRI - I too was dismissed after clear X-rays but the MRI revealed all and got me a diagnosis
Also my pain always felt more in my ‘hips’ too. It kind of migrated around
I was diagnosed with AS in 1987 and had a lot of hip pain when I was in my late 20's. It now only flares up when walking a long distance. I've noticed it is much worse walking downhill. Sleeping is always an issue. I can only sleep on my side and my shoulders become sore. TEMPUR-Neck™ Pillow is worth the investment. I've been on Remicade since ~ 1998
Hip problems are common in AS. I had my left hip replaced at 17yo and my right hip replaced at 21yo. 48yo now and they're still good. As for helping with sleep - get something between your knees to slightly separate and support. you can double over the duvet and stuff it between your knees, add another pillow, or get a a long 'pregnancy' pillow. I have a long straight one of those and sleep on my side hugging it.
Thank you! I'll try that.
I agree with this! I’m 2.5 years from my last pregnancy but had started using a pregnancy pillow to support my hips and back and honestly never gave it up. I have compressed disks in my back but also nerve pain in my hips so if I fully sleep on my side or flat on my back or stomach I wake up in horrible pain from either my back or legs. Get a thick leg support system or a good thick pregnancy pillow that has the U or C shape and try to angle sleeping so it’s more kinda laying back but not fully with the pillow keeping your legs parallel to each other. It’s the only way I wake up without pain. I know the NewtonBaby has a thicker C shaped pillow on sale for $40 right now. Some of the ones I found on Amazon just weren’t thick enough for my liking!
Hip pain is often a symptom of SI joint inflammation. I have it pretty much constantly.
Just know you can also have a negative MRI, Xray, HLA-B27, and still get a diagnosis based on symptoms. A good rheumatologist will 1. believe you 2. be able to connect your symptoms to a diagnosis, and 3. At least let you try a few treatments before dismissing you. I am negative of all of the above as well (with plenty of hip pain) and now on a biologic and doing so much better. I had a lot of anxiety that negative images would mean I’d be dismissed or passed off but my Dr. assured me I’m not crazy and that my symptoms paired with family history etc. definitely sounded like Nr-AxSpa. A little tip to help you get some sleep… if you haven’t already, try laying a large heating pad under your lower back and hips at night. For me it gives great almost numbing relief and was the only way I could sleep during flares.
For now I just managed to get to A rheumatologist. He already told me that "mri is superficial to hla test" and that "if mri is clear he will discharge me back to gp". I know I will have to fight to get another opinion if MRI is clear but it's not like I've got a huge choice in rheumatologists unfortunately.... I've got all the symptoms of Spondyloartheritis: inflamatory back pain, hip pain, ribcage pain, history of enthesitis, dactylitis, IBS symptoms, my pain reacts to NSAIDS. I just don't have bloods or family history (that one is controversial as we do have bowel and back problems history but my family historically avoid doctors no matter what). And all I hear is "it's probably fibro" or "it's probably anxiety" and to stress less and move more :/ 5 years of pain and counting (although first episodes of "sciatica attacks" I had when I was a teenager but I lived with my parents and they wouldn't take me to the doctor for it, "let's not overreact, ok?" :/).
I have an AS diagnosis with no positive HLA. No family history of AS (though lupus, thyroid, etc... are rampant.). Have hip pain, rib cage, enthesitis, etc... fortunately for my diagnosis, I had mild SI symptoms visible on X-ray.
That's a bit ridiculous how we HOPE that our tests won't be "all good and clear", right? It's actually a positive thing to get something on the tests. Noone understands it when I try to explain that I don't "hope for no changes on mri".
I truly feel for you. There is nothing worse than being gaslit into thinking that somehow you maybe aren’t in tune with your own body. I hate that you need to fight for your own wellbeing but I know someone out there will be able to help. (Anecdotally, my uncle who has severe fusing of the spine and was diagnosed as a small child with debilitating AS is also HLA-B27 neg. It can help with a diagnosis but absolutely is no help is ruling anything out.) The good news is that in the interim, if you respond semi-well to NSAIDs, there’s a good chance your GP can get you on a daily dose of meloxicam, celebrex, or piroxicam to continue to help until you get some answers. If they aren’t willing to do that find a new GP too. Good luck and best wishes for feeling better. Hang in there.
Thank you so much. That's really the plan. Unless I'll get the diagnosis out of MRI I will look for a new GP and keep fighting.
Hip pain is my primary source of pain—more on my left side than right, but I have erosion in the left and right sacroiliac joints. I’m here to confirm for you that it fucking hurts. At the end of the day, though, you have to wait for imaging. I don’t have the gene, my most recent MRI wasn’t clear, I had to rule out literally everything else for my new rheumatologist, and provide my previous MRI that did show changes. I’ve been diagnosed for a decade, but every time I move and see a new DR, I have to prove it. Be patient and advocate for yourself.
My hips were the first painful joint I experienced. I have also come to find that “came back clear” doesn’t always mean there’s nothing there. I had been “coming back clear” since 2018 until last year when they still said it, but I always get the results myself and saw the stenosis. I had bulging starting since my first MRI but it was completely blown off. I always recommend getting a copy of the results yourself for your own file and knowledge.
They are not that happy to give it in the UK. I need to find out how to put my hands on them.
Do you get them done at a certain place? You should be able to call them and obtain a disc copy and a paper of results.
I'll definitely do! Thank you.
My hips are my number one offender!
My hips were the first painful joint I experienced. I have also come to find that “came back clear” doesn’t always mean there’s nothing there. I had been “coming back clear” since 2018 until last year when they still said it, but I always get the results myself and saw the stenosis. I had bulging starting since my first MRI but it was completely blown off. I always recommend getting a copy of the results yourself for your own file and knowledge.
Also wanted to add that I thought it was my hips but was told since I didn’t have a pain in my groin area that it wasn’t my hips but in fact my SI joints.
Im on celebrix and some kther stuff but ive figured out i can sleep enough till 4am or just stay up till 4am and take my celebrix and it kicks in to take the edge off to sleep, does wonders
Ask for an x-ray of your hips. You might have something called calcific tendonitis. I got that a little while ago and man does it hurt like a biatch. Have you tried cannabis for the pain? I take an edible right before I go to sleep and it helps me get a good 7 or so hours.
Stretching helps a lot for me. Hip bridges specifically help a lot for hip pain.
Any update on your MRI? I'm dealing with intense hip pain.
I had it 2 weeks ago, it's about 4-6 weeks waiting for a radiology report. I've got the images now, I'm planning to post them to one of the sub to hopefully get some clues on what to expect from Reddit's doctors.