note my diagnosis is Adult Onset Stills Disease which for me manifests as RD. Diagnosed aged 17 now 61, med free since mid 20s except pain relief. Symptoms are sore throat, afternoon fever and rash , swollen , stiff , sore joint’s especially wrists, knees and feet, progressing to hips, shoulders elbows with age, I’m post menopause using combi transdermal patches. This year has been emotionally traumatic and I’ve been unwell with RD symptoms flaring and new symptoms. Gastroscopy found nothing, initial bloods showed cancer flag but subsequent bloods did not. Abdominal scan showed nothing. A trip to ER revealed Orthostatic hypotension. I have other AI conditions, none too debilitating and migraines which are. I’m otherwise ok 5 foot 1 weighing 8 stone 10 pounds. MY QUESTION IS CAN RA CONDITIONS AFFECT THE STOMACH. I have no know allergies and celiac test was negative . Thanks for any responses.
Abdominal discomfort, bloating, indigestion? - NRAS
Abdominal discomfort, bloating, indigestion?
I can only give you my experience. I have had RA for over 40 years and for the past 20 I have had bowel problems, trapped gas, pain, bloating. I either have weeks of d or c. Had several polyps removed in the large . I aso suffer from gum inflammation and bouts of gastritis. I think gut problems starting in the mouth go hand in hand with RA. In fact the older I get the more problematic my guts become, My RA was much more active before the menopause and my gut problems less .For me there is a correlation and a pattern .
Thank you, I’m sure there’s a link. I’m thinking about excluding some tigger foods one by one to judge the effect. I don’t eat meat but am big on dairy, nuts and seeds eating handfuls of pumpkin seeds for example. I may start by eating gluten free bread and see what happens. It’s very daunting as is the thyroid issue and I’m scared if I’m honest .
Meant to ask if you feel unwell from gluten, I get fever, rash, sore throat and bloating every afternoon after cereal breakfast snd bread lunch so I think those foods responsible perhaps. However the same symptoms are part of Stills so hard to differentiate .
So hard coping with bowel issues. I cannot find a link for me with food. However, taking tablet probiotics, kimchi and kefir seems to help my bowel despite not being recommended for those with RA on biologicals. My consultant is aware. I wish I could help us both and find a solution. I think it is trial and error and not eating foods which can increase infection. I am aware that fermentables are on this list but they help me and gastroeterologists suggest them. A dilemma.
Isn’t it, I would like to just find a liquid to served all my needs and be done with blooming food
It sounds like you could be talking about IBS. I suffered from IBS -C for many years from my mid-twenties with bloating and cramps being the worst symptoms but also shivers, lightheadedness, nausea and even vomiting during bad attacks. It became much worse during peri-menopause but thankfully HRT helped a lot. At that time I also read Irritable Bowel Solutions by Professor John Hunter which I found enlightening; I didn't try the food elimination he explained but did use the relaxation techniques as, although I don't believe (as was suggested when IBS was first recognised) that anxiety causes it, I do think that, for me at least, it can be a trigger. Just the fact that he, as a scientist and gastroenterologist, saw it as a "real" condition helped me personally as, at that time, there was a lot of talk about it being "all in the mind" which didn't help my anxiety about it at all!
The other source of information I looked into was Professor Peter Whorwell at The South Manchester Functional Bowel Service and he kindly replied to my email about starting HRT.
When I was diagnosed with RA many years later, I noticed that my consultant noted my comments about having IBS and I've since come to realise that it can be seen as inflammation which is, of course, what RA (and it's sister conditions) is.
My IBS didn't seem to change with RA but interestingly, it has improved since being on Sulphasalzine and again, my consultant noted that with interest.
I realise that you may not have IBS but it might be worth investigating further; I find that being informed helps me not to get into the vicious circle of symptoms and anxiety feeding off each other.
Good luck and let us know how it goes.
Thank you for your useful reply. I admit to being in a bit of a spiral about it and all the other new symptoms as tests proofing negative. I’m beginning to imagine I’m imagining it all and GPs supercilious smirk has not helped. I’m not with a rheumatologist or on RA meds, just a PPI and anti sickness when BP drop (dubious about this tbh) and OTC pain relief, none continuously but regularly I admit. You’re right, as other reply’s are, that knowledge is power and I need to read up, gen up and woman up to get myself sorted. I’m not usually timid or reticent, the opposite in fact but with Stills playing up, GP saying cancer early in the year which has come to nothing and now saying I have subclinical hypothyroidism my mind has turned to mush. I also feel my very low mood after the shock of Dad and step Dad passing on the same day and then my ex husband soon afterwards is hindering me. I really need to get a grip but seem stagnant. Thank you again.
So sorry to hear what you've been through - that would knock anyone for six 😢Yes, smirking GP's are the worst; I came across that a lot in the early days with my IBS which was why reading up on the work by the two consultants/professors I've mentioned really helped me feel that it was definitely not all in my head. Later on, a GP suggested porridge for breakfast and although I was a bit cynical, I tried it and have found that, for me, it helps. I'm fine with wholemeal bread, in fact I'm much worse without it but spicy food or garlic is a definite no-no. It's exhausting to contemplate, I know but gradually trying different things (or cutting them out) is probably going to be helpful and knowledge is power so a bit of reading when you feel up to it will hopefully make you feel that you can gradually take control. 🍀💐😘
I was told I had IBS for years and now it's not so as I have Diviculosis Disease and possible microscopic colitis. I'm waiting for that result. RA is linked MC . Until full diagnosis I take prescribed Immoduim daily.
Sorry to hear that; hope that you get a clear diagnosis , treatment and some relief soon. 💐
I have had pain at the back of my navel to the left. Been diagnosed with interstitial cystitis. Bladder inflammation- again no cure!😟
That is interesting as I also have IC and Lichen sclerosus. Do they cause bloating ?
Yes and dull ache
I find IC much worse at night actually.
So do I. I think it is pressure on my left side.
Yes left side too, very painful and not relieved by relieving one’s self 😜
💦
Yes have IBS and when I was high inflammation it was quite bad look for triggers tomotoes for me but I like them and dairy
hi I have rheumatoid arthritis, although my presenting main stuff is interstitial lung disease.
I’m on Lanzanzaprole originally morning now twice daily I’m still getting break through indigestion symptoms. When I get out of hospital I will have to look at it
Are you in hospital now?
yes , for once it is not chest related .
I broke my hip , then had a heart attack during surgery.
So my recovery has been long- 7 weeks in here ,
I’m going to rehab on Monday so hopefully things are looking up
Oh my gosh Oshgosh! I’m wishing you a speedy recovery from both conditions then. I hope rehab delivers for you 💐
You poor soul. I hope things get better for you as soon as possible 💐
How are things ?
Apologies for delayed reply. I’ve been in hospital for 8 weeks today. I fell broke my hip during surgery I had a heart attack, which has made my stay much longer. I’m in rehab now, so hopefully I’ll get home soon.
My chest has been ok when I’m laying in bed . Now they’ve got me walking it’s rubbish.
So I’m doing my best to stay positive , thanks for asking
This might well be GI dysmotility caused by vagus nerve problems or damage relating to dysautonomia (inc orthostatic hypotension and hypertension/ POTS and MCAS) rather than anything specific to RA.
From my own experience I was diagnosed with inflammatory arthritis in my late 40s but already a confirmed autoimmuner. I was having IBS-c and silent reflux symptoms, like you describe, from 2014 when my Sjögren’s developed to include small fibre neuropathy so this got the blame from gastro’s.
Since then I’ve developed severe GI dysmotility quite rapidly over the past 3 years - finally sent for gastric emptying tests by my rheumatologist in 2021 after I reported rapid and unintended weightloss, vomiting and nausea. I suspect she knew that the only antibody I carry is for scleroderma and this dysmotility is very much associated. I was diagnosed with severe gastroparesis and slow colon transit and LPR.
More recently I’m diagnosed with SIBO, systemic sclerosis and EDS and treated with prophylactic antibiotics and a liquid/ soft low fodmap diet fortified with Ensure Plus and prokenetic, Domperidone. Gastroparesis can be caused by many underlying conditions and procedures including diabetes, bariatric surgery, refractory eating disorders, hypothyroidism and IBD - also by connective tissue disorders eg Ehlers Danlos Syndrome, Sjögren’s and systemic sclerosis/ Scleroderma.
Thank you for your detailed reply I appreciate it. I’ve recently been diagnosed with Orthostatic hypertension and am sub clinical hypothyroidism which is all a bit shocking as in February when all these new symptoms started locum said ovarian cancer suspected. Anyway your reply has given me s new direction to look into, thank you. I don’t think I’m going to get much help from GP who has dismissed involvement from Stills without even knowing what it is. You have many conditions to deal with I’m sorry to see, may I ask how you feel most if the time?
You are most welcome and I hope my reply is of some help to you. I have orthostatic hypertension too although occasionally it goes the other way.
Most of the time I feel resigned to be honest. I’m relieved to be correctly diagnosed at last rather than depressed about how much I have wrong. There are always others much worse off and I’m a natural pragmatist so I choose to not allow anger at how long it’s taken to get correctly diagnosed to overwhelm me. Living with diagnostic uncertainty for all these years has been really horrible so at least now I am believed and I know what to be alert for and am taken seriously by all of my doctors at last. Many of them have learned the hard way with me when I’ve ended up in hospital under their watch. But I do accept that I’m a horribly complex patient and my diseases are rare so I have to allow for human error and avoid hospital admissions as much as possible.
Managing it all takes a lot of time so being very well informed is key! Sorry - long reply - but you did ask! 😊x
That is fascinating. I am now going to find out about some of those medical issues! However I feel very sorry that you have such multiple issues to deal with.
The thing about having systemic sclerosis and Myositis and other rare rheumatic autoimmunes including Stills is that we have to lower our expectations of finding Pharma treatments and get used to managing them by ourselves for the most part. Scleroderma carries a higher mortality burden than all the others and this is because there is so little research compared to RA and even to Lupus. So we grow used to shouting less about our pain and expect much less of healthcare services than those with more common autoimmune conditions. I recall being told by two eminent rheumies some years ago that I’d just have to hope it stayed at RA and nothing worse evolved as lots of targeted treatments for RA. I didn’t know what they meant at the time but I sure do now! Xx
Yes exactly, all I really want is GP to prescribe low dose of steroid for a few months to see if all Stills symptoms settle down. If they do but other new symptoms remain then follow up the sub clinical hypothyroidism conjecture. If all symptoms settle then eureka it’s just Stills and sorted. As I can’t see or speak to GP though this seems unlikely and too mundane for 111 call. Staying well shouldn’t be this hard when we’re aware. 🙃
You poor love. I think in this respect I’ve been luckier than you. My rheumy and neurologist have so far listened to my suggestions and I’ve had steroid injections (I hate oral Pred - it makes me so unwell) and even two full rounds of IVIG last year as first ever trial in my hospital for autoimmune GI dysmotility. Ironically the IM steroid have worked best for my stomach problems in past but the IVIG worked more globally on rashes caused by my raised immunologlobulins which are now always just in normal range - same with inflammatory markers. I had a desperately awful allergic reaction to the IVIG so not allowed more but it seems to have rebooted my immune system in a way that steroids and Mycophenolate and other dmards never did for long. It’s also seemingly given me extra immunity to Covid so far along with many vaccinations.
But I’m flaring again with pain in peripheries just now but nothing’s showing in my blood-work. So my GP was a bit shruggy and sent a note to my neurologist about like post herpatic shingles and possible cervical stenosis. I see her for review in a few weeks time just after my monthly infusions for Raynaud’s. I am a bit phobic about neurology though and always half expect to be sent packing. But I want to ask her about Myositis because my scleroderma antibody points to this and maybe Rituximab would help if so. It’s been suggested several times but I’m so cautious having had such dire reactions to many meds. Her clinic is in same hospital corridor on same day as my rheumy’s so they can put heads together on me later I guess. My rheumy phones or sees me alternately every 3 months. This is the only way in which being her only scleroderma patient makes me lucky I guess.
Best of luck with GP and hopefully a course of steroids to help decide. The IM kind definitely has helped my gastritis pain a lot in the past but not the oral Pred xx
I always feel a fraud on here when I read other people’s trials. I have no business moaning really when I’m virtually med free. Thanks for your generous sharing and I wish pain free days ahead for you x
Thanks so much but please don’t use the meds others here are on as validation of their suffering over your own. For me personally it’s when I’ve been told that there are no meds or I’ve gone without for a while that I’ve been sickest. And gut stuff is the worst in my book - up there with severe itching. You have my big sympathy XX
Ps watch the “sub clinical” hypothyroidism thing please. In my experience there’s no such thing - we are either hypothyroid or not and GPs are notoriously conservative about treating it unless it’s pretty severe. So if you get offered Levothyroxine I’d suggest you take it and make sure they run your full thyroid panel whenever they test. I had to be really pushy on this front for a few years having initially had a great GP who offered me thyroxine 20 years ago when I was still only in the “sub clinical” category. Now I’ve learnt a great deal about when I need checks and how to interpret the results myself. My GPs know I am good at tweaking my dosage accordingly and happy to trust me as long as I let them know. X
Yes I acknowledge that’s it’s their opt out for beginning treatment and tests and said so at the hospital , they just shrugged.
Just reread this and understood that you meant I should watch out for symptoms and illness thyroid related rather than watch my use of the term subclinical thank you, I will. It’s easy to misinterpret things when feeling so grotty. I’m tired of feeling unwell everyday, it’s worse than RA pain in a strange way as sometimes mind over pain can allow me to cope with that but this pervading malaise is more draining. Thanks for all your reply’s.
Not at all. I misunderstood a reply on a different health platform late last night after taking codeine and fell asleep half way through my attempt at explaining what o thought they were asking lol! Now woken up to a mystified (but affectionate) reply asking if I was okay?! 🤦🏼♀️😁
Yes that’s what I meant. Subclinical just means you’re hypothyroid but not enough for dithery GPs to want to treat. Their margin of what they consider under active is known to be an underestimate rather than erring on treating to see if you feel better. I had been symptomatic for much of my young adult life but was only tested and diagnosed age 40 and then only “subclinical “ but my GP was concerned about me so gave me the option and I took it. Within a year of starting and raised in doses of Levothyroxine my hair had grown back, my eczema of decades had completely gone and my thick neck and energy levels improved. I later found out that I needed D3 to really feel better as my levels were very low, even by a GP’s reckoning. With hindsight I should have also pushed for HRT but in those days 15 years ago they were anti it. I now have osteopenia and I suspect this is heading for osteoporosis. Get the results off your GP to make sure they are running full thyroid panel and don’t take their word as gospel for anything! X
Yes it can. I had various tests over 14 months concluding with Pancreatitis cause unknown and Diviculosis disease I'm waiting to see my Gastroenterologist following a colonoscopy to see if I have microscopic colitis which is linked to RA (RD)
Axial Spondyloarthritis?
Cramp what’s best to do & is it linked to RD?
To contact Rheumatologist or not
Swollen joints but normal CRP
