I am in the midst of a flare, Apart from malar rash, nasal sores returning the main symptoms is a really painful flare of my costochondritis and other rib tendon inflammation. I find that by the end of the day the whole of my abdomen is swollen. I am wondering is this is part of the inflammation / water retention etc. It is rather worrying. Does it happen to anyone else.
I had upon Consultant's advice reduced Hydroxy to 300mg (weight related) but now she has asked me to go back to 400mg for 6 weeks to see if flare goes. By the end of the day however both the ribs and abdomen are really painful and I end up feet up for hours on end. I'm only one week into higher does but am rapidly struggling more and more. Thoughts anyone please.
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RosieA
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I have Sjögren’s and my son has lupus and we both suffer from rib pain, at the moment my son is particularly sore . Sometimes volteral 12 hr gel helps or heat .
I don’t know about your abdominal swelling, could it be related to a food intolerance , you should get it checked out though as soon as you can . Best wishes 🤗
Heat is my greatest friend. I am completely attached to my heat pad. I have multiple very sore points on my ribs. It has got so bad recently that I now have to pause going up hill ( no choice, I live on one). It's not because I am breathless but because just having to breath more deeply causes pain. I am sorry you are suffering too. A great GP said it was the hardest to cope with because unlike a knee you can never really rest your ribs. I have decided to contact the GP this week if abdominal swelling doesn't resolve. Many thanks for your thoughtful response. x
Hi, I get the most awful bloating, stomach pains, wind, inflammation in back, pelvis. I have no idea why it is so bad at the moment. I have coeliacs, ibs, lactose intolerance, lupus, and fibromyalgia. I have all my meds lactose free and the hydroxychloroquine will have lactose in unless ask for without. Most tablets have lactose in and that will cause bloating and rib pain. I am at the point I don’t know what to do about it as I have had so many CT’s on bowels and tubes up and down that I am not going through it again.
I know I got hiatus hernia, and a inguile hernia (I can’t spell ). I also know that my pelvis is out of alignment and I got inflammation in any activity I do, any joint used repetitively .
So I am left like you, I am in so much pain after eating, I wake in pain, I sleep in pain, all day is pain. And when I am on so much medication there isn’t a lot I can do. I have always suffered with my stomach but on top of my back pelvis pain I just can’t cope with this on top. I give up with my dr’s and physio as no-one does anything. They just look at me and shrug and seem to not understand how uncomfortable, and miserable I feel!!!
The hospital notes are never on the system so the GP looks at me like I am making shit up!!! I get so annoyed as they incompetence of the NHS systems do not work yet they GPs would rather assume the patient is wrong rather than the broken system! Sorry but I am saying this from first hand experience as I have just given my NHS OT job up as I am so bad now!
So what I am trying to say is try taking the lactose and dairy out of your diet and eat food same time as you take tablets, not after. Xx
I am so sorry you are going through so much. Unrelenting pain is without doubt exhausting, sapping as it does the enjoyment of most things. I have done FODMAP in the past and identified my culprits as garlic, onion and more recently gluten. I am keeping my eye out for other culprits but I somehow suspect as the connections between ribs and back have become painful that the abdominal swelling is part of the general inflammation. Take care and I do so hope that your get some small relief soon. xx
As well as being lactose, gluten, egg, bread, biscuits, cake, sugar free, I now know these foods cause bloating: white onions & garlic, peas, potatoes & tomatoes in excess. Tell yourself your a celeb in the jungle eating only rice to begin with if it helps..?
Thank you for your response. I had been on 400mg for 2 years, only reducing about 7 weeks ago. I got my husband to press the rib joints to the spine this morning and bingo, those towards base of ribs were bilaterally sore so I suspect that abdominal swelling is part of the inflammation. Gosh! I am so fed up. I had 10 + years of endometriosis pain and now this. Every time I breath I am aware of my ribs. Thanks again for your response, sharing somehow helps even if it does increase the burden of others and make us feel guilty for it! x
Hi RosieA,Check all labels on the tins and packet foods for milk/ dairy and sulphates as well. During inflammation I only eat fish cook them with a squeeze of lemon juice and pepper with veggies ( boiled ). Drink loads of fluid also I tend to sleep quite a bit as well as I get very tired have a flare my flare these days only last about one an half to 2 days .I get as though I cannot walk my whole body is weighted down all I want To do is sleep when I just woke up. Once I have had a good sleep in the day I feel okish good enough to do a bit of work in the hse. I do get pain mine is just under my ribs only my right side. Btw I already had my gallbladder out many years ago.
My flare's up are much shorter now compared to before which would last about 2weeks . Then it when down to 3- 5 days . And now this, which is great in someway a good progress for me hopefully.
Gosh, I am so glad that your diet has made such a significant difference for you. I have been careful with my diet for years. Organic, fresh etc and certainly avoid highly processed food. Thank you for your kind wishes. x
Hi Rosie. You might get some good information on a new thread on the PMRGAUK forum. I also now get rib pain; costochondritis. My steroid intake was upped to 6 mg. by my GP. I thought my swimming routine was responsible first. I’m also on an aspirin regimen along with prednisone. I am bloated but tbh I think it is because of all the meds I take. And fiber. We are told to eat so much fiber for our health but it bloats me. Best Regards
Thank you, have just read through it. Interesting and in a bizarre way, reassuring. I have just got off phone with hospital specialist nurse. Agreed to see if higher dose of Hydro does the job (I suspect not somehow as this is a long established problem). However, I can call anytime to discuss going back on steroids. I have asked about imaging (privately if need be). It is getting significantly worse , relentless, debilitating. Friends are saying I don't look too good, pale etc. After loosing my mother last Christmas we were hoping for a peaceful one this year! The pain has also spread bilaterally to two spots where my ribs join my spine, does that sound familiar to you? Yep! Fiber is a mixed blessing in the bloat department. X
I don’t have rib pain in the back, but I suppose you could. Did you ever get a chest Xray?? I don’t like it when others comment on my appearance unless it’s a compliment. Health is a tricky conversation with the“well” We can be pale when we are stressed. Not breathing properly. Deep breathing helps.
Yes, comments can sometimes tip me over on the tears front too, especially on the days I am just keeping it together. I had a chest Xray earlier in the year. Both my grandmother and her daughter died of Pulmonary Fibrosis, so they took a base line Xray - all clear. Deep breathing sadly hurts and has been getting worse for a few months - I live on a hill - no option but to breath deeply on a walk but sadly for the last couple of weeks I have not been on a walk as I can feel every step on my ribs! x
Ah, thank you for still thinking of me. I called GP and am on a waiting list!!!! Still, I insisted on seeing a particular GP as at this point I want continuity of care. Saying all that, I suspect I started to turn a corner yesterday. NO malar rashes for 4 days now and ribs, although, I have to be extremely careful are 'quieter' than they have been for weeks. I know they were made much worse by the Covid vaccine and maybe time and the increase in HYD is starting to work. Interesting, (after 2 years) consultant wondering if ribs are related to CTD. Go figure, they flared up after the flu jab and get worse during a flare so to me it seems obvious but I am a layman. I have also read that costochondritis is more common in people with RA and Lupus (I have lupus lite UCTD). Exhausted more by the fight to find out the cause at times. In my mind, if we know the cause - inflammatory vs X then treatment might be more obvious. I have read about ablation technique where they destroy the nerve ending. If they had a Do it yourself kit I would have made a valiant effort at that last week. xx
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