Weird feeling in spine

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Hi all, I was diagnosed with AS in July. My bloods were negative for the HLA but AS showed up in my MRI. I also have disk herniation C5/6.   My symptoms are as with AS.. back pain early hours in the morning, through to morning so affects my sleep etc.

In the last few weeks I have been getting a weird pain/feeling in my spine mid way up and it’s diffent to my usual pain. The pain makes me feel a bit anxious as it’s a weird kind of pain, hard to explain. It happens at anytime of the day and night, unlike my my morning pains which wear off about 30min to an hour getting up. 

Has anyone one else experienced this?

My doctor has applied for Benepali weekly injection so awaiting for the decision if it has been agreed. In the meantime I take arcoxia as and when. 

Many thanks 

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13 Replies

  • Posted

    My thoracic spine gives me a lot of pain. It does not disturb my sleep unlike the rib cage and pelvis. The thoracic area can ache more as the day goes on, if I’m active. Sometimes I cannot lean back against a chair, as it is so tender. I do have fusion occurring in my costovertebral joints., and put the pain down to that. Heat helps, I am on Benepali since Feb, it has been wonderful for the stiffness. I scored 5.8 in the BASMI scale and it reduced to 1.8 with Benepali. It does not however stop the pain where damage has already occurred. I still take Arcoxia daily, and occasionally use voltarol gel on the thoracic spine. I also take Methotrexate to help with the peripheral symptoms, especially hands and feet. I am going nfortunate at being diagnosed late, and SI joints are fused, ribs showing fusing occurring, and loss of natural curves. Stretches will help with the thoracic spine as well
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    • Posted

      Hi Maureen, thanks for your reply. I think we messaged last time as was debating on going full time. Sorry to hear of your suffering too. Yes now you mention about the rib cage I get pain here quite a lot.  I am hoping the Benepali will get agreed and I can start taking. I did question nurse if they would carry out another MRI after so many months of taking Benepali to see if there has been any changes, however she says no due to the radiation. Do you have regular Scans?  I hate having MRI but even now feel my pains worsening, so would be ingriged to see if there changes since June.. but I imagine too soon.  
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    • Posted

      Your nurse has her facts wrong, there is no radiation in MRIs it’s operated by magnets. CT Scans have radiation. However specialists will only usually undertake MRIs if the result could change treatment plan. It costs approx £1000 per scan, so they will not do it purely for curiosity. I’ve only had an mri to diagnose of whole spine and pelvis. I’ve been on Benepali for 8 month, responded quickly, with huge improvements in stiffness. It’s helped with pain, except for where damage has already occurred. Hopefully you will see huge improvement too, especially if your in early stages. Fingers crossed for you 😁

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  • Posted

    Hi Jojo...I too have weird pain in my thoracic area....which travels around to my lower rib cage...and feels like toothache type of pain...not acute or sharp...but it's there all the time. Hot packs do relieve it. Other bits are often acute and very painful...e.g. the neck if I happen to glance sideways. It clicks too. I have the same type of damage as you have but also thoracic and lumber area with degenerated discs...10 in all. But I recognise that sort of pain....The constant ache when sitting down...or standing for a while...is a problem too. I've had two MRIs and numerous X Rays all showing severe damage to my spine in general. On a good day I can do a little bit in the house...but bad days I hibernate in my bed with a hot pack and pain meds..including Tramadol injections. Unfortunately you are experiencing the strangeness of this disease...it goes on forever..with different pains and muscle spasms...it's a roller coaster. I do wish you well and hope that this gets sorted for you....Hugs..Gloria

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    • Posted

      Hi Gloria, thank you for replying.. sorry to hear of your suffering too and mines only early stages I think..so I really do feel for you.  When I read up on the condition I didn’t quite realise how bad it could get, and now having all these weird pains is quite worrying and makes me anxious... And it’s only the beginning. I’ve recently had twitching in my side near bra strap.. nurse said it’s just nerves but didn’t think it was associated to AS.. but I can’t see what else has triggered this as never had twitching in body before, only the eyes.

       I’ve only just started full time work from years of part time work, but hoping if and when I start Benepali this will help.  I’m trying to keep diary of the aches and pains.. had pain on ball of left foot for about a month now. Wishing you all the best too, it’s a shame not many know about this condition.. only those suffering. X

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  • Posted

    I too have this tingling/stinging feeling (like a small circle area) on right side of spine near bra. It doesn't "hurt", more of a nuisance.  I think it's from poor posture (which is from the AS) so as the day goes on I notice it more.  

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    • Posted

      Hi there, I can only describe the spine pain/discomfort as like knocking your funny bone on elbow.. but that feeling in my spine.   I’m due to start bioltics soon so hope this will help with this feeling, but yes my posture is not great. I’ve had the feeling day or night unlike the usual back pain. 
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  • Posted

    Hi Jojo80, I googled, weird feeling in thoracic area and thats when I read your story. Ive had pain in this area for many years but now getting a weird ache almost a nervous, anxious, annoying feeling i cant describe to doctors. They look at me weird and go..huh. This keeps me up at night and continues all day. I have an overwhelming feeling to stretch the area but it doesnt help. I haven't been dx with As but I have degeneration, protrusions, bone spurs, and what they call marrow edema which is basically water in the vertebrates. (And scattered hemangiomas throughout)Im saying all this in hopes that you have similar things on mri and we can figure out whats causing it. ..? I forgot to mention foraminal stenosis @ C5-6 also. Do you have pain in your arms? Thanks Janet

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    • Posted

      Hi Janet, thanks for you reply. Sorry to hear of your problems. I’ve been on Benepali weekly injections since December and it seems to be helping with my back, I am able to sleep thoughout the night and not waking up with terrible back pain as before. I’ve still got pain in my neck and head and believe this is due to the disc herniation c5-6.  I get pain in my right arm and down to my hand and fingers. I started working full time in Oct where I am sitting day most of the time using computer so that doesn’t help. Awaiting for new chair and adaptions. I haven’t had that weird pain in spine as much since I’ve been taking Benepali, although I get other weird pains. Shooting stabbing pains in legs, stomach, very random. And one thing which seems to be getting worse titinitus, the MRI last year was so loud, not sure if that’s caused it or the meds, horrible at night as all I hear is the noise. I’m due to go for check up in April so will be going with my long list of things. Wishing you well x
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  • Posted

    This might sound crazy but I'd like to suggest you look at this from a different angle. Your body is like a car...it might be an older used car which still looks good on the outside but on the inside it seems like one thing after another is happening. Like one day it doesn't want to start and the next it starts first time. A mechanic ( e.g. doctor ) may try to find out what is causing this annoyance and lift the bonnet of the car and um and ah every few minutes until he/she finds a small oil leak or a wire that needs correcting..he may fiddle around for a few days on your car and then come up with, " I dunno but it could be due to the weather or to the way you drive ".lol

    He may decide that the car needs an additive to the oil thingy..a new product that will be sure to give it a new lease on life. So, you say OK and use the new product. But after a couple of days..the problem gets worse and another mechanic has a look. He/she says oh " it's the cogs" so off you go and have the cogs replaced...still the same only maybe getting worse you think.

    Your body with AS is similar..one thing after another because nobody really knows what causes it or how to stop it. One thing will work for a while and then some new symptom appears.I'm sorry to joke about it as it is no joking matter but it's the only analogy that I can think of to relate what's going on with AS. In the end, you learn to live with all the quirks and discomfort and do what you can when you can...and leave the car to rest and revitalize itself for a while. The body is a tangle of damaged bones and nerves and far too complicated for most people to fathom..let alone us sufferers. But listen to it..if it complains with pain here and there, non specific stuff happening, do what makes you feel better, rest, hot/cold packs, various medications which work one month and not the next. A little excersize one day and not the next, and so on till you find some kind of relief.

    I really hope that you do find some relief and don't give up on trying. I wish you luck and love...Gloria

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    • Posted

      Hi Gloria, thank you for reply, yes you’re so right, ive noticed different pains all tr time, sometimes worse than others. I’ve been on Benepali weekly injections since December and it seems to be helping with my back, I am able to sleep thoughout the night and not waking up with terrible back pain as before. I’ve still got pain in my neck and head and believe this is due to the disc herniation c5-6.  I get pain in my right arm and down to my hand and fingers. I haven’t had that weird pain in spine as much since I’ve been taking Benepali, although I get other weird pains. Shooting stabbing pains in legs, stomach, very random. And one thing which seems to be getting worse titinitus, the MRI last year was so loud, not sure if that’s caused it or the meds, horrible at night as all I hear is the noise. I’m due to go for check up in April so will be going with my long list of things.  And two wks ago I tripped and had terrible lower back pain and now my neck not right... I think somethings slipped, it’s never ending. All the best x
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