Left rib pain

[Kmp35]

Hello, I hope you are all keeping as well as can be. Its only my second time posting here, lupus is still very new to me. For the last 2 weeks I have had pain in my left rib that radiates and is worse on deep breaths, the doctor thought it was pleurisy so told me to rest and take ibroprofen and paracetamol and arranged a chest x-ray, the pain started to ease after a week of resting untill lastnight when it started to feel worse again so I rang the doctor today and she is now saying she thinks it's costochondritis and my chest x-ray was clear. Is this somthing that is common with lupus? I have never had anything like this before now, I have a video appointment with my rhuemotologist on Thursday to discuss it with her but I just thought I would ask on here for any advice please ♥️

[johare]

Hi, in my experience I am surprised the GP thought it was pleurisy as it hurts when breathing out generally. Costochondritis is more likely and common with Lupus. I have it quite often. An example is last Feb I got a cough, the coughing inflamed the costochondritis. Unfortunately I has been with me off an on since then.

I find it can be set off by sudden movement or repetitive movement. Ie using a scraper, lifting my granddaughter.

Rest it, anti inflammatories. It takes a while. Please dont always assume ghus is what it is though if it is first accompanied by a cough incase it is a chest infection.

[Kmp35 in reply to johare]

Thankyou so much for your reply and advice, it came on so suddenly and I really thought it had nearly gone after a week resting and now it's exactly the same as when it started. I will take it easy and keep up with the ibroprofen, I'm trying to listen to my body more. I'm sorry to hear you still have it on and off.

[johare in reply to Kmp35]

I find it eases a little and then I lay at night and it starts again it must be the inflammation and the pressure on the ribs again. Keep well, rest up.

[Kmp35 in reply to johare]

This is what I'm finding too, it will ease a little and then come back. Thankyou for your advice its much appreciated. Take care. x

[RosieA]

I have UCTD and have experienced terrible pain in ribs before. So bad that even sitting back against a pile of cushions was agony and finding a comfortable position virtually impossible. Drs thought I had gallstones and was sent to hospital to see if I needed surgery urgently, although I did suggest that it might be to do with my condition.

I agree with johare, some activities can certainly set it off, particularly when there is increased physical stress in the area. For me it was trying to prune a large apple tree (just to think I could still climb the tree and prune it in my 50s not so long ago!! Now I just look at it and think about employing some fit young people) I know my triggers now and have been able to keep it at bay. I found prevention and rest the only cure, hope this helps a little. x

[Kmp35 in reply to RosieA]

Hello, thankyou for taking the time to reply. I know what you meen, I'm finding it hard to get comfy without it hurting, I can be fine one minute and then it suddenly starts again, I'm avoiding anything that might make it worse and just trying to listen to my body and rest with ibroprofen.really Appreciate the advice.

[amc282]

I was just reading this article.

living-smarter-with-fibromy...

[Kmp35 in reply to amc282]

Thankyou very much this is an interesting read and very helpful. x

[bookish in reply to amc282]

Interesting, thanks for posting. I have what I believe to be costochondritis but also issues with histamine and mast cell dysfunction. I was recently reading that mast cells can also release tryptase which is cartilage degrading, so I wonder how much the two are related. Mast cell dysfunction certainly seems to be related to other conditions, such as Sjogren's (which also has connections to Fibro) and Dysautonomia. I notice that one of the suggested anti inflammatories (which the author calls Astazanthin, although it appears to actually be Astaxanthin) has some effects which seem to help with histamine, so maybe that is why. I am using Quercetin (can't tolerate antihistamines) which is a natural mast cell stabiliser. It does actually seem to make joint pain less, as well as calming histamine symptoms, so might be worth a trial of that (or antihistamines) to see if it makes any difference to you. ( Link to piece on mast cells, osteoarthritis and cartilage med.stanford.edu/news/all-n.... Cheers

[Kmp35 in reply to bookish]

Thankyou very much for your advice and for the link, very interesting to read, would never have known this can be related. Thankyou, I will definatly give antihistamine a try.

[chrisj]

I've never heard of costochondritis. I've just googled it and its inflammation of cartilage. I've been getting pain and soreness at the bottom of the front of my rib cage for some time, it comes and goes and because I had a duodenal ulcer I kept wondering if it was linked to that. Now I'm not sure as its not just one side though its right along the front.

I had severe pain years ago on breathing in and assumed it was pleurisy, it lasted a week or so. I didnt see my gp as it settled down but it was very painful.

Your post has been enlightening Kmp, I hadnt thought of cartilage inflammation being the problem, I've imagined all sorts. I think you're doing the right thing with rest and pain killers.

I was diagnosed with Lupus in 2005 although I'd been having problems for some time before diagnosis. In remission at the moment (for a year) so I dont think my rib pain is SLE related although a practise nurse at the hospital said my inflammation markers were always up. With Covid and a busy surgery I havent seen my gp about it, I keep hoping it'll just go away.

[Kmp35 in reply to chrisj]

Hello, thankyou for your reply. Yours sounds very much like mine, I had never heard of it before yesterday either, I find it radiates to under the breastbone to the middle and sometimes in the chest. Its very worrying when you have pain like this isn't it and you do end up thinking all sorts, I was relieved that my chest x-ray was clear but was worried because the pain had got worse again and then the doctor said she thinks it's this which I had never heard of. Good to hear you are in remission, I hope things stay quiet for you. Take care. x

[chrisj in reply to Kmp35]

Thank you. Yes symptoms sound very similar to mine. I hope things improve for you xxx

[Kmp35 in reply to chrisj]

Thankyou x

[bookish in reply to chrisj]

Hi, just might be a mast cell connection - have a look at my reply to amc282. Cheers

[chrisj in reply to bookish]

Thank you for that.

I do have Sjogrens and I googled mast cell connection as its something else I've never heard of. Some of the symptoms are familiar, forced rapid heartbeat is one and rare feelings of "swimming" as I call it, feeling like my head is swirling slightly. Some flushing/ warm face but nothing as bad as it was when Lupus was active.

I also have kidney disease, I have to be careful how much potassium I eat. If there's too much for kidneys to handle it goes back into your system and that has an effect on the heart and other muscles. I've woken many mornings with my heart pounding.

Will mention it to rheumatology next time although the last apps have been phone calls and the next one isn't due for a few months. I was assured bloods were normal. Is there a specific test for this mast cell connection do you know??

[bookish in reply to chrisj]

Hi, I'm afraid the links seem rather new research and I'm not aware of a test myself, but have only recently made these connections so haven't yet run it past my Neuro. You can be tested for MCAS or the more serious still Mastocytosis (histamine levels over a certain threshold and tryptase also raised during/after an episode) but I understand that our mast cell dysfunction is not necessarily MCAS (although it could be, of course.) I think conventionally it has been believed that you need an allergic, IgE reaction/stimulus, but it seems that mast cells can be triggered by non-IgE stimuli too (a long list, including inflammatory products) and won't necessarily be high in number, just out of balance, making it hard to diagnose unless you look at the whole picture.

You may already follow Smart Patients Sjogren's forum, in which case you will already know about the Sjogren's Advocate site

sjogrensadvocate.com/ and may have seen some of the recent Dysautonomia International conference. Dr Schafer (S. Advocate) commented

'I'm more and more convinced that fatigue, brain fog and widespread pain in Sjogren's are largely due to dysautonomia and mast cell activation, caused by the immune malfunction in Sjogren's.'

and said that speakers have advised that

1. 60 % of Sjogren’s patients develop small fiber neuropathy (Kamal Chemali, MD)

2. 50 % plus of Sjogren’s patients have abnormal autonomic function, (Chemali, Brent Goodman, MD ) and 66 % have abnormal autonomic testing (Chemali).

Dr Goodman seems to be at the forefront and his lecture is worth watching vimeo.com/267566774. He says that doctors do not yet understand what is happening in Dysautonomia with mast cells but it seems that in a subgroup of patients, treating mast cells can be helpful.

Pain, especially abnormal sensitivity to pain, can be caused by mast cell release of histamine adjacent to sensory nerves (and Quercetin seems to attenuate neuropathic pain via action on mast cells).

If you don't get anywhere with your Rheum, try a Neuro maybe. Best of luck.