Absolutely ages since I've posted but so hoping you might be able to help. I have Undifferentiated Connective Tissue Disease with an inflammatory arthritis element. I have been suffering from intermittent costochondritis for a couple of years but things have taken a rather awful turn and wondered if any of the following sounds familiar.
The day after my Covid booster in November my ribs went into overdrive -
- usual pain of Costo and some other areas of the rib cage but very much worse.
-dreadful upper abdominal pain when bending,
-pain across the shoulder blades - seems to randomly appear.
-diffuse upper chest and back pain when walking uphill - (no option I live on one).
-unable to sleep on my side unless I have a pillow between my chest to avoid compression.
-some intermittent stabbing pain (lower ribs)
-finally abdominal swelling, usually matches when pain quite intense, goes down overnight.
Hospital upped Hydroxychloroquine back up to 400mg from 300mg (tried to lower it to ensure weight to mg ratio within safe limits). Having to wait 3 weeks for Dr F2F meanwhile they put me on NSAID - helped but missed one and bang -back again, which indicates to me that it is an inflammatory process. Sorry long rant but at witts end but hoped that all this might resonate with someone, fingers crossed. Wishing everyone the best that 2024 may offer.
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RosieA
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It sounds awful and having had chest/lung issues for other reasons I know how debilitating it can be.
Do you have a nurse helpline? Could you explain to them how desperate you are feeling? Could you plead for the appointment to be brought forward? The Patient Liaison Service PALS might be a good call if you are fobbed off.
Once you do get to your appointment take a list of questions and don’t forget that you can request a second opinion if you are not satisfied. Good luck xx
Thank you. I now have a F2F next week but am exhausted after suffering this over the holiday period. It's the first time I have considered A&E. The specialist nurse did offer to chat again between Xmas and New Year but thought I needed to see the GP suggesting the abdominal pain was probably not connected to my disease. Well, a quick rootle through google scholar clarified that upper abdominal pain can be related to rib problems and intercostal nerves. I am determined not to be fobbed off any more. I honestly need to get this sorted as much as possible as it has been life changing. Thank you again. xx
We have been going through the same thing with my son (in his 20s). He described it as 'stomach pain' because it was hurting where the stomach is on the anatomy chart in the bathroom (we home educated, lots of these sorts of things on the walls!) so of course everyone thought it was to do with his stomach. Put on PPIs, told not to take NSAIDs.
But the endoscopy showed nothing much, and the operator said she thought it was positional pain related to his condition, Ehlers-Danlos syndrome. Which is what I thought.
GP refers to gastroenterologist who arranges CT and ultrasound. He gets all excited because Son is constipated. 🙄
Eventually I had to take time out of my PhD work to develop a huge causal diagram of all his symptoms, the severity, the drugs, the conditions and so on. Luckily as the PhD is in knowledge representations my supervisor said I can use it as an illustration!
We went back to the GP, and the gastro, and had some very difficult conversations. I was able to show that his abdominal pain was more likely to be related to the nerves that run between his ribs being irritated by inflammation.
Both finally accepted that maybe they utilised premature closure (where people jump onto the first likely cause without investigating further) and that it was less likely to be a normal GI problem and more likely to be a muscle, bone and nerve problem.
This was later confirmed by an advanced practice physio that managed to reproduce his pain (normally the pain is only felt when he is laying on his stomach or in certain positions that are similar).
So stick to your guns Rosie (ever heard of Rosie the riveter?), you are going down the right path!
Sorry, just to add, the advanced practice physio managed to reproduce one of the three different pains that my son had, but not the other two, especially the one where he gets the pain when laying on his front. But he was also able to discount that the pain was coming from the spine which was good. One of the problems with pain is referred pain where the brain thinks the pain is coming from one place but it actually originates somewhere else.
And also just to add, I have PsA and had costo which has cleared to a 'its still there but tolerable' level finally. So I understand what this pain can be like.
Oh thank you for this. You are correct in that we have to do our own research. I have trawled through Google Scholar and come up with the following thoughts.
Lots of research coming out discussing vaccine related adverse effects. In one study over 6 month period they found cases of musculoskeletal inflammatory manifestations including enthesitis etc. Discusses immune dysregulation and potential autoimmune disease flare of varying degree with a small percent a 'medical' flare
I certainly went into a full flare- malar rashes etc- those have abated with increase in drugs.
The ribs- very much resembles what happened after the flu jab but much worse.
I suspect, as you state, that the intercostal nerves are referring pain to the back and abdomen and am hoping that all this 'irritation' is causing the abdominal swelling.
I think if they can control the costo I might start to get some relief - I am going to stand my ground - honestly, steroids - oral or otherwise! Nerve ablation - anything to stop this as I can no longer function normally.
I was reading about slipped ribs - people often go through years of unnecessary investigations before the problem is found. It can happen with Ehlers-Danlos syndrome as well as other conditions. It is without doubt easy to be sent down a rabbit hole, so congratulations to you for fighting the fight! x
P.S. Hospital physio won't touch me - reckon it is more systemic and refers me back to Consultant! Round and round we go!
I’m having all sorts of scopey pokeys looking for rib, flank and abdominal pain ( other symptoms as well) while my GP looks blank when I say could it be caused by my chronic RA condition of Adult onset Stills Disease perhaps. My own research led me to Costco. as a cause and so far the gastroscopy found nothing much, the abdominal scan found mild diverticulitis the hysteroscopy was usual for my age 61 on HRT and the colonoscopy is on 16th. Orthostatic hypotension was declared but since re - diagnosed my GP as BPPV.
Once they’ve exhausted these tests I may consider just asking for a months course of steroids to see if that stops the pain and if not I’m wrong but after being unwell (not a flare) since Nov 23 I’m at my wits end
Sorry to hear that you are having a flare. It seems likely that you will be advised to continue with the NSAID for the time being if that seems to be working? But possibly a steroid injection/tablet course could be on the cards? You do need to be in contact with your helpline.
Thank you. I have decided that it is all a lottery. One consultant I saw, zoned in on the rib problem (before it got so bad) and decided I had Fibromyalgia - I diligently filled in the questionnaire launched at me and failed spectacularly to pass the threshold - well, she said I still think you have it and with that refused any steroid treatment. My regular consultant later confirmed that I didn't have Fibro. The GP, I am hanging on to see, is on the ball and I hope will liaise with the hospital. I just need answers and help - sounds so simple but in an overstretched service--- I don't know. If there was a DIY steroid injection kit, I would happily prod away. NSAIDs are great but not an option for much longer as they do my tummy in and my ferritin is already only 12. Oh the joys of it all. x
Hi Brychni, The UCTD was diagnosed after a year of being told I had inflammatory arthritis. I am ANA positive, low IgA & M, sometimes low complements. I started to have malar rashes, photosensitivity, mouth and nasal sores, so now diagnosed as Lupus Lite UCTD. My ribs hit me after my first flu jab but inflammation went after a couple of weeks by third vaccination it took months. I had been alright with covid vaccinations but this was the first on a lower dose of HYD and BANG - official flare + ribs. I've only had 3 hours sleep because of the pain. When you mention your ribs - what happened? Have you had them scanned etc? I keep being told that scanning / etc of rib area is notoriously difficult to interpret yet I read research papers where they discuss findings of such scans. Would love to hear your rib story if you feel able to share. Many thanks for your response, it does help to keep me sane. xx
Exactly the same as me. Also elbows and backs of heels. Thought I was coasting on hydroxychloroquine but started to feel really crap about 6 months ago. The rib thing though. Omg, almost as bad as the shoulder adhesive capsulitis.
I feel for you, I’m on a similar journey this last year, if I find out anything useful or of interest I’ll let you know, although all tests showing nothing much so far but GP is dismissing possible RA involvement from Stills Disease.
The pain is limiting everything I do, I’m using OTC pain killers but it’s not enough. Oddly gentle swimming is ok as long as the water is warm , heat pads are a comfort.
I will wait until the next test which is a colonoscopy on 16th and if no cause is found that explains the rib, flank, shoulder , abdominal stabs and neck pain I plan to ask for a short course of steroids to see if that works. I’ve been free of RA meds since my mid 20s except pain relief.
I should mention I had a blood test in February that flagged up cancer hence the scopes and this has clouded the water about the ribs.
Thank you. Heat pads are a Godsend. I am attached to mine day and night! I can walk on the level for ages but uphill causes a diffuse chest and upper back pain. Stretching and bending causes significant lower right stabbling pain in rib followed by upper stomach pain. Last night finally got to sleep with heat pad on my chest! Had to read up about Enthesitis - GP mentioned this for one sore spot a couple of months ago and recorded it as Intercostal Neuralgia but now it is pervasive.
I am so sorry about the cancer, I am hoping that since this was last Feb that you have undergone treatment. It is indeed really hard when problems overlap. Last year my shoulder became involved -GP thinks it was referred pain but I had 7 diagnosis before that - ageing (yep- what can you say) bursitis, tendonitis, pectoral muscle problem, Fibromyalgia etc. It is horrific that we are both on this journey for so long. I will let you know the outcome of my appointment -if any! x
Hi , I really feel it for you , my ftidnd opposite us had long term Covid and could breathe for pain in her chest , I advised her to get a small hot water bottle and keep it next to her all the time , she even went out with it when walking her dog , she was amazed how much this helps , have a go , good luck 👍
I’m so sorry you are dealing with this. It sounds almost identical to what happened to my dad. It took years of emergency hospital visits, scans, surgeries (he has degenerative disc issues as well), investigations for clots, embolisms, cancer, you name it! He couldn’t function without NSAID’s at all either. Eventually, he was diagnosed with AS, and treatment with Amgevita has given him his life back. He’s now back to playing tennis and golf, and only taking his NSAID about twice a week instead of daily. It seems the covid virus back in 2020 initiated the costo symptoms for him, and each vaccine appears to have made those symptoms worse and worse. He had his most recent booster two weeks ago and I’m hoping the Amgevita takes the edge off this response for him 🙏🏽
I really hope you get some answers, and relief, soon! Such a miserable thing to go through.
PS Meant to say that you are the first person to respond where the same costo response to vaccines has been observed. I am very grateful, it will certainly support my 'demand' for much greater investigation that the usual cursory prod. Did your father also get horrific upper stomach pain when his costo was in full swing. Thank you so much again. x
Gosh, what a journey! You know, I have never even been offered a scan! I am only taking 500mg of Naproxen as I have unexplained low ferritin and most nights I can get enough sleep and last time I took full dose I only lasted a week before I started getting malar rashes- part of my Lupus lite UCTD. Without doubt, I can just about function but taking the decorations off the Xmas tree has set me back again - no way to live after being so fit. The first time it happened, after flu jab, the Drs sent me to the hospital to investigate for gallstones. As they were scanning I tried to explain that my ribs hurt where they were pressing --- deaf ears! No gallstones needless to say. What you say resonates - each vaccine has made these rib symptoms significantly worse.
It is wonderful that your father has regained his life. May I ask if he had any other symptoms of AS? Thank you for responding to my post - it is without doubt, sadly good, to know you're not alone. x
Oh I hear you. It’s so depressing after being so fit to literally not be able to function 🥺 Dad did have stomach symptoms and bloating, but tbh he also had several stomach ulcers, so not sure if they were related. When his episodes would flare up latterly, sometimes we thought he was having heart attack. He was investigated for gallstones at A and E too! I’d forgotten about that. They had given him a diclofenac suppository so they could do an ultrasound, and he couldn’t believe how drastically it took his pain away. He said the pain would start in his mid back, and go round his ribcage, right through to the chest. We kind of just got used to hearing him yelp, then having to get him to lie on his front whilst we got the hot water bottles, and a tramadol. I think he had fluctuating AS symptoms for a while, they initially thought he had Sapho, but changed their mind in 2023 after MRIs and severity of symptoms. He is HLAB27 negative, however.
How long have you had your lupus and UCTD? I have RA (and I think tbh a bit of PSA too!) and EDS. Mine also went completely out of control after Covid and the vaccines. I was really ill (body wise) after each vaccine, and my 4th Covid vaccine in November 22 sent me into an 8 month flare. The disease was everywhere, feet, knees, wrists, fingers, spine and collarbone 🤢 had to have 7 rounds of steroids and am now on a biologic that’s helping - thank goodness. But like you, I lost all my fitness. Couldn’t even really stand up properly tbh. It was awful. I’m not anti vax at all, but I skipped them this year cause I just couldn’t bear the thought of going back to being that ill. I spoke to my rheumatologist about it, and she said whilst they still have to recommend that people take the vaccines, cause, of course, on the whole the benefit significantly outweighs the risk, they are aware that they have triggered AI issues in some, and that’s being investigated now.
I really hope you get some further investigation. Surely they can at least send you for an MRI? It’s such a minefield out there 😩 you’re right though, it is good to know you’re not alone, and it’s so important to remember that things WILL get better! X
Your father's symptoms are incredibly like mine. Thank you for sharing as it does empower me to know I am not imagining it all. I battled for years with endometriosis from late teens. Finally, ended up with major surgery, 11cm chocolate cyst and loosing part of my ovary and faced years of hormone therapy because of delays in diagnosis. I really don't want a repeat of this.
Like you I am not an anti vax but do have to weigh risks vs benefit. Like you I lost about 7 months to adverse effects from the flu jab. I haven't had one for 2 years now. Google scholar has an increasing amount of articles discussing adverse affects of vaccines on some people with AI diseases and it sounds as though you were, like me, very unfortunate.
I'm in my 2nd year of UCTD diagnosis so am aware that it is still within the period of evolving.
My OH often tries to comfort me by saying 'This too shall pass' and I try so hard to listen. The intensity of the pain does eventually abate but not its impact on daily life. My mission is to try and get any scans that might be useful - even if I have to pay for them. It's time to move forward. Thank you once more for your response. Everyone has given me some extra strength for which I am very grateful. x
Oh gosh I’m so sorry to hear that! I have endometriosis too! Have you had decapeptyl injections by any chance? I had them to get through uni before having surgery, and I often wonder if going through the false menopause at 20 could have been instrumental in all of this as well? Your surgery sounds really intense. You must have been in so much pain 🥺
I didn’t know that about the articles on Google scholar - I’m going to look it up now! Thanks for the info.
Your OH is right, but I do sympathise that it’s very hard to believe when you’re in the depths of hell, and it’s a new hell! Not so bad when it’s a familiar hell, and you have your go-to remedies 🙈.
Definitely put your foot down (in a nice way) and try to get to the bottom of it. (The fact that dad’s CRP was always raised helped get him his diagnosis too.) Good luck with your appointment! Please let me know how you get on. X
I am in my early 60s now but had the injections to induce menopause, but not the one you mentioned. I had quite a few of them over a few years along with periods of Danole (I think that's how it's spelt) as the pain was so great I could hardly function. Both ovaries affected and attached to bowel wall. My Aunt, her two daughters and myself had it! By late 30s all the drugs pushed me into an early menopause - sorted out the Endo but not without impact on my bones - I have low bone density now. Sadly, I learned about the potential consequence of these drugs on Women's Hour whilst driving. Burst into tears upon recognising - that was me! The days before side effects were really discussed - not the good old days.
There is some discussion about Endo, causes and impact but I am not aware of a cause and effect link - I might be wrong as it's a few years since I researched it and medical knowledge increases daily. Let me know if you find anything.
My first bout of the flu was my trigger - UCTD is an autoimmune disease and sadly when my immune system didn't stop after fighting the flu it developed into this disease. My grandmother had an AI disease and her sister had Lupus.
So sorry you are suffering from Endo as well but hopefully they caught it early and you are getting relief from it. xx
My goodness, you've described many things I have at this minute, which is why I came onto the forum. For many years I treated for RA, and I KNOW I had costco on and off, but no one was bothered about it. Mine is a long story, so I won't go into all of it. Moved to another part of the country, lost my RTX treatment as the new consultant said I had Fibro, not RA. Fought to see another consultant who said I have 'inflammatory arthritis' which I think is a catch all. No drugs. I appear to have facet joint problems. No drugs. GPs haven't a clue. This week, barely able to move with pain all round upper rib cage, round the sternum and round the back. Last year ended up in A&E being checked for my heart. All fine. I'm fed up with it all. I'm going to bookmark your post and replies, if you don't mind, in order to speak to the consultant about some of the points raised. Sometimes, I know, they don't know and can't fix you, but they could at least explore the options. If i press on my chest wall, it really hurts! Also, I went on the bus yesterday with a hot water bottle under my coat. Unfortunately, it fell out when I stood up. Mortified! x
Had to laugh at the hot water bottle. I should imagine you were the envy of all, who doesn't love one! I bought a small electric heat pad and my goodness it was one of my better buys, it's been on 24 /7 for the last couple of months.
Yes, if I press on my chest wall and other parts of my ribs I regret it, not only for the immediate pain but the resultant ache which sets in, sometimes for hours. I will post after seeing the GP to keep you informed. What are facet joint problems?
There is a lot more research coming out about the effects of vaccines for an unlucky few but it is really hard to find information about refractory costochondritis, however, I am on a mission to learn more.
P.S Well done you for fighting for a second opinion, it is easier said than done, I know. x
Hello Rosie, I am a fellow sufferer of costocondroitis too and have every sympathy for you! I haven’t noticed any correlation from having the Covid jabs but have noticed that my chest pains often trigger in the evening after sitting down and having our evening meal. I have IBS too so it’s hard to know which it’s going to be until the pain starts! I have inflammatory arthritis and fibromyalgia and was told, (after two trips to A&E ) that the pain is due to inflammation between the connective rib tissues. But it seems that this goes hand in glove with digestion where I’m concerned! (Lifting things can also trigger it too though so I’m never sure.) After failing many meds, I’ve finally been put onto the biologic drug Benepali which seems to give some relief, but it’s early days yet and I had to keep pushing to get there too! (15 years since I was diagnosed!)
I sorry I haven’t got much advice, just to keep going back and asking for help! (And tests if necessary !) The costocondroitis is so painful and frightening and I’ve found there isn’t much to read about it online either - it’s often glossed over when it’s actually a horrible thing to live with! I got very excited once when I read a blog by chance about someone who had my exact pain, which made me realise I’m not alone! Keep coming back to this site, even if it’s just to moan - it’s a good place for support! x
Ah, thank you for responding and I am so. sorry that you have experienced this pain too. As the GP said, the trouble with rib inflammation is that you can't rest it! I am glad that you have found some relief with the new medication. I think that biologics are rarely given to people with connective tissue disease except when there is a danger of organ damage. I was just about to post ( as requested) to let people know the outcomes of my GP appointment. A step forward at least. Yes, this site and Lupus UK have been of tremendous support. Between us all we have a vast amount of experience and knowledge. x
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Inflammation relief and IBS
Rheumatoid arthritis pain with no joint inflammation
Acute Pain with \"inflammation markers\" normal
Normal inflammation levels but still pain & fatigue.
