Just diagnosed with AS - waking up at least 4 times during the night any advice would be great!

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I'm a 34 year old female and was just diagnosed a couple weeks ago with AS. I'd gone into a chiropract. or because my back was killing me at night. He diagnose me by doing x-rays. The more research I've been doing makes me think I should go to a different doctor and have them do more X-rays and an MRI. Any advice on what doctor to call? Rheumatologist? Also nights have been horrible for me. I wake up at least 4 times a night feeling paralyzed with lower back pain. When I try to roll over to my side the pain is excruciating. When I finally make it to a different position I can fall asleep easily but within an hour or so the same thing happens again. Mornings I'm a little stiff but after about 15 minutes I feel like nothing's ever happened. Any advice would be helpful. Thank you

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  • Posted

    Hi Lori,

    I’m sorry to hear of your troubles with a good night sleep. Life is definitely better with a good night’s sleep!


    Rheumatologists are the specialists for AS and other autoimmune diseases.  See if you can get a referral to a Dr with AS experience.   (Some rheumys are much better than others.  Depending on your country, medical insurance, etc., you may need to start with your general practitioner (GP). Ideally, your GP and rheumatologist together will address your inflammation and various symptoms over the years ahead. 

    There are many options for treatment. Untreated inflammation with AS can damage the body. Often patients are started on physical therapy and/or NSAIDS. Other medications and treatments are available if necessary.  

    I hope you’re back to a full nights rest soon!


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  • Posted

    I haven’t been diagnosed with AS but I have quite a few of the symptoms so I took it upon myself and ordered an HLA B27 test and it’s pisitive so with my many symptoms and I’m going to get a referral to a rheumatologist. That’s what I would recommend you do too. As for your horrible back pain and not being able to sleep at night. I used to have the same problem. For years I would wake up in excruciating pain all night and would maybe get 5 hours of sleep total if I was lucky. I finally broke down and bought an adjustable bed. I keep it set at zero gravity. In that position all weight is taken away from your lower back. The difference has been amazing. I can now sleep 8 or 9 hours with no pain at all while sleeping. Most Insurance will pay for adjustable beds with a doctors prescription and if not I recommend buying the least expensive one as long as it can be set to zero gravity. It’s not a hospital bed and doesn’t look like one if that’s a concern. It’s actually much nicer looking than a hospital bed. I fell asleep on my sons regular bed the other day just for a nap and woke up in horrible pain once again. The adjustable bed is the best thing I can recommend for your lower back pain. You can try one out at a bedstore to feel the difference before you buy it. That’s what I did. I’m also a big believer in chiropractors so I’d keep going to the chiropractor too if I were you. I also suggest being cautious of MRIs. They normally inject you with contrast dye when they do an MRI and the contrast dye has gadolinium which is a heavy metal in it and some people like me do not detox very well and it can make you pretty sick like it did me. I had an MRI with contrast dye about two years ago and I’ve never recovered from the damage it did. The doctor had me checked for heavy metals and my level of gadolinium is 11x higher than the safe level. An MRI can be done without the dye but it seems like symptoms, X-ray, and blood tests should be enough to diagnose you. Good luck with everything and I’m really sorry about the pain you are suffering from. 
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  • Posted

    Hi Lori 

    I suffered with night time lower back pain many years ago before I was diagnosed with AS, the pain was excruciating but disappeared completely as soon as I got out of bed, fortunately this episode eventually burnt itself out, my experience with AS over the years is that I have trouble spots that come and go over a period of time and burn out, I do have fusion at the bottom of my back and damage to my neck. I was only ever prescribed Ibuprofen and only use it if I have to as myGP told me that Ibuprofen can irritate the stomach, I am thinking that my pains can’t be too bad if I can manage without pain relief because it seems that most other people take medication. AS can be such a confusing condition. 

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