I often get flare ups which comes with unbearable pain in my sternum. Its worse when I bend forward or try to lay down/back. Its almost like a sharp pulsating pain. During a flare, it tends to move around. It starts in the sternum, then moves to ribs and collarbone.
The only thing which helps are Cuprofen tablets and a hot water bottle on the pain. Its affecting my sleep so I dont feel like im healing and my work. I've had this one for 2 weeks now and its starting to get me down.
After a quick google, ive read about costochondritis which sounds very similar to my symptoms.
Does anyone else with Lupus get this please? How do you deal with it?
Thank you
G
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StarShine4
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Hi, sorry to hear you're going through so much. I have also had costochondritis on numerous occasions. My first and worst episode was whilst on holiday in Florida, on my second day there I ended up having to get injections and morphine for the pain. Now I too have SLE but I don't know if the 2 are related as I hadn't received a diagnosis at that point. I still get the pain but again it's hard to tell if it's another episode or not as I now have lung fibrosis. I'm sorry I couldn't be more helpful 🌹
The first episode probably lasted for about a month but the pain was severe for about a fortnight. I initially thought I suffered from it from being on the rides but apparently that was a coincidence. With any other episode I can't relate it to anything, one minute fine then the pain struck. I've previously had gabapentin and naproxen but it never really took the pain away fully. I would advise you to make an appointment with your GP though , especially with having SLE 🌹
Yes mine just appears out of nowhere too. I can normally feel it coming on (like a dull ache) and then the pain intensifies and stays like that. I'm wondering if it is connected to SLE. Lupus is obviously high inflammation through the body and im thinking the chest pains might be inflammation round my sternum. Only due to the fact that NSAIDS do help. I wonder if stress can bring it on too. I dont really know what causes my lupus flares or these chest pains but the two seem to be linked!
It could be. As you know lupus affects everyone differently but I would mention it to your rheumatologist so they can arrange further tests if need be 🌹
I have EDS, not SLE, but many of my symptoms are very similar to Lupus
I have costochondritis, which comes and goes in severity. You have my sympathy because when it hurts it really hurts 😖😖😖. For me, it radiates from my sternum to the lower ribs on the left side which is typical, I believe. Nothing takes the pain away except rest, which might not be what you want to hear - sorry. We’re all different though.
I hope you feel better soon. Please keep us updated.
Hi thanks for replying. So is it common for costochondritis to move around? The worst pain for me is the sternum as it feels like what id imagine a heart attack feels like. Its such a sharp pulsating pain and it worsens when bending forward or lying down/leaning back even. It can go through to my back too which feels like trapped cold in my shoulder blade. It then tends to move up to my collarbone (same pulsating pain)
It does ease with Ibroprofen but I've been taking them for 2 weeks now.
yes, it does tend to move around, but I’ve never felt it as far up as my collarbone tbh. I do feel it in my back and its usually a sharp pain which mellows into a dull ache eventually. It’s worse when I bend and stretch so please rest as much as possible.
I think you should discuss it with your GP or rheumy asap particularly as you’ve been taking NSAIDS for two weeks. Mine has usually mellowed to a dull ache by this time.
Take care and please get back if I can answer any Qs. 😘😘😘
Yes, costochondritis is very common in lupus - it was actually my first symptom. Mine is usually in my sternum and then around my ribs to the left. If you press on a rib you get a rebound pain - they are extremely tender! I take ibuprofen and paracetamol when it’s bad.
Hi, I also have the same symptoms and have SLE. Mine went on for years being untreated and in absolute agony in the form of totally random flares. I would take Oramorph for the pain as it was so intense nothing would touch it, even this didn’t help and the Oramorph would end up putting me to sleep after a hefty dose, when I’d wake up it was gone.
I actually got diagnosed with GORD last year and prescribed omeprazole and gaviscon. It’s gonna sound crazy due to how extreme the pain was, but I actually drink milk! A few glasses of semi skimmed milk (not full fat) and the pain goes! I feel like such an idiot after taking all those medications and this is what helped! It may not be the same thing but worth a go if it could help. X
I got it for the first time about 2 years ago and plenty of times after. Mine mainly starts in the ribs like a machine is crushing them, then to my chest and back and I can't move for a couple of days. I take codeine from the GP for it and use hot water bottles on my ribs. The odd time I can get rid of it quick if I put the hot water bottle on my ribs at the first sign, sometimes even if I have felt the pain in the chest, putting the heat on the ribs helps more. Try and learn what triggers yours. For me it's moving heavy things, light yoga, even moving my upper body too sharply. The GP did give me breathing techniques to do to strengthen up that area again but just the deep breathing triggered it which he said might happen so I stopped doing them and just focused on avoiding the triggers as much as possible.
I would definitely see your GP about it and then at least when you have a flare of it you can ring and they will hopefully give you stronger pain relief but lots of rest is key also.
note my diagnosis is Adult Onset Stills Disease which for me manifests as Rheumatoid Disease. Symptoms have cross over with lupus and PMR hence HU is valuable to me. I rely on pain relief and gave up seeking help as Stills is rare even to rheumatologists. You describe exactly how my ribs neck and sternum feels and I suspect I have costochondtitis, heat is a great help and rest. Sorry but that’s all I can tell you. Wishing you better days.
A Rheumy diagnosed me with Costochondritis a few years ago. I am not diagnosed with Lupus but other, so far, non autoimmune , conditions but I have so many SLE symptoms..bloods for are ok.
My Costo is very frequent, painful, restricting and travels too. Left untreated.
I was told Costo shouldn’t occur every often but mine does, more time with than not.
I am so sorry that you are suffering like this. I have Lupus Lite UCTD and rib pain is one of my most debilitating and chronic symptoms. Mine was triggered by the flu jab but we didn't make the connection until the third jab. The inflammation in my ribs lasted 7 months and needed steroids for that period of time to make it bearable. Mine presents like many others here with pain in the sterum and in other rib areas on the sides. It can. be incredibly painful. It normally starts as pain high in the stomach or between my shoulder blades (hence the time it took to diagnose as everyone thought I had gallstones - even though I kept telling them that the scans hurt my ribs!)
I have been told by Rheumatology that it is a very difficult area to both image and treat. I have reconciled myself to it's chronic nature and that it has never really gone away. As others have said- learn your triggers and then it's heat and rest. I bought a small electric heat pad - fantastic. I find a relatively comfortable position and just rest until some of the most intense pain passes and then take it easy for a couple of days.
May seem odd to. bring up but I can no longer wear bras so opt for soft yoga type tops. Not the most supportive but if I try to wear my old ones it will trigger the costochondritis. The same goes for anything tight on the waist and it creates pressure. Ain't life grand!
Wishing you all the best with this really tricky symptoms. x
Welcome to the LUPUS UK Community Forum, I hope you are finding it useful so far. I am sorry to hear you are experiencing new symptoms, have you been seen by a doctor or contacted your Rheumatologist to let them know?
I have attached below some links that you might find useful -
You can also call our helpline for advice on 01708 731251, which is open Monday to Friday 9am until 5pm. I am also happy for you to contact me directly at michaella@lupusuk.org.uk.
Lupus can cause inflammation in the lungs and cause pericarditis, which is fluid buildup around the heart which can be dangerous. They can check for this with a chest x-ray.
The collar bone, ribs etc. can be the source of referred pain coming from the heart, lungs, gall bladder, stomach too. Lupus can attack any organ, and pain get referred elsewhere.
Also, gas pains can cause pain there. Try taking something that is specifically anti gas like simethicone to see if it helps.
But next time it happens have them check to see if you have fluid in your lungs or around your heart because that needs immediate treatment.
A bad muscle strain can cause pain too.
Always possible it is angina pain too, which they have meds to help your heart. So investigate next time with a doctor, don't assume.
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