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Autoimmune disease

Back/chest pain every night -going slowly mad

5 replies

Albatross26 · 25/10/2018 17:17

Hope I'm posting in the right area here, I just feel like I need to talk about this pain as I'm going bonkers from lack of sleep!
For the last nearly five months I've had extreme pain in my back and ribs that is awful at night yet dulls away during the day -it generally starts to improve around an hour or so after getting up. It's like a deep, throbbing, clenching pain that literally takes my breath away. Sometimes it seems worse in my back or one side, sometimes it's worse in my ribs and lower chest. I'm currently spending an hour every morning about 4am shuffling around the house necking painkillers as it's too painful to lie down.

I've been to my gp and blood tests have showed raised levels of inflammation but obviously they can't tell you where it's coming from. Have also tested positive for HLA-b27.I'm wondering about things like ankylosing spondillitis or similar -I just want an idea of what's going on so I can work on making it better.

Apologies for the moan I'm just really struggling with this. Would be good to hear if anyone else has had similar symptoms

Thanks!

OP posts:
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cheesecadet · 25/10/2018 18:00

I've inboxed you :)

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Binglejellies · 26/10/2018 20:49

HLA-B27 is a strong indicator of AS & I have had this confirmed as well as what you’re describing as Costochronditis...it feels like you struggle to take air in because moving even a millimetre might break your bones. I have the intensely sharp pain that literally tstios me inhaling & feels how I imagine a heart attack to be - sounds like you have this Sad

The neck/spine stiffness/restriced movement is also a symptom which literally is a pain in the neck.

I have this with sacroiliitis, enthesitis, iritis & fasciitis all of which tie in with the delight of AS.

I am on 1,000 mg Naproxen a day and inject weekly a new Biologic (protein) called Benepali.

Are you under a Rheumatologist? You really do need to see one.

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Albatross26 · 27/10/2018 10:45

I did think about costochondritis as well due to the rib pain - it's like if I move an inch someone's grabbed my ribs and is clenching them with a huge force -I just have to lie still until it passes. Yes to the heart attack feeling - if it was higher in my chest that's exactly what I'd think was happening.
I saw my gp last week and have been referred to rheumatology but who knows how long that'll take -I've thought about going private in times of desperation but financially it's not really an option!
It's just so odd that by the time it's about 11am it's dulled right away yet every night it's agony

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frogsbreath · 27/10/2018 10:55

I have chronic costochondritis with acute flare ups. I spent 8hrs in pain last night and I mean pain, 2 lots of 60mg codeine and ibuprofen during that time and a tens machine on from and back. I was rocking in a chair, crawling on the floor, hunched in the foetal position crying. Now I just feel achy and tired (2 hours sleep).

It's been going on for two years and I do have other joint pain problems with nerve damage. It's now believed I have Fybromyalgia.

The pain is in a band from under my breast to above my hips, all the way around. The first time I had it I thought it was a heart attack and only my advanced first aider husband stopped me calling an ambulance.

Flare ups are 85% at night (waking up with it) or start 8-9pm ish. Does this all sound familiar?

Most costochondritis conditions resolve and never come back, some like me are chronic. I've had physio and pain management and the gp says she's no idea if it will ever go away

Sorry for essay-just have so much experience with this now SadGrin

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Singlenotsingle · 27/10/2018 11:02

I've got costo chondritis but I don't think it's as bad as yours OP. Yes it's mainly at night, just the occasional sharp pain in the sternum or across the back. I've learnt to find a comfortable position and try to stay still. My GP refeffed me for heart monitoring but all ok. It seems it's just something we have to live with and hope it goes away. Combined with polymialgia, it's not nice! Good luck, hope you feel better soon.

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