to ask do you recognise this? Severe pain, swollen hot joints & Chron’s disease.

[Elleherd]

Can’t go on like this but seem to be written off as not mattering.

Normally I'm active disabled, also have Chron’s, take pain and things not working and getting on with it in my stride, but have suddenly hit a new low and getting nowhere getting help beyond a one-off packet of Zapain that didn’t touch the sides.

There’s been a suggestion that previous less severe joint pain and swelling might be connected to Chron’s and I’m wondering if this could be related and could anything be done? (am definitely midst gut ‘attack’ and losing weight while lying still.)

I’m suddenly in pain constantly, severe if I move, lots of swelling and heat coming off joints - mainly lower spine, neck, shoulders, elbows, wrists, hands, fingers, thumb joints, but also outer sides of knees.
Some areas are also red for a few hours. Everything’s very stiff though doing what I can to gently move.
Heat seems to very temporally alleviate some of it (20/30 mins) especially the stiffness.

All started suddenly two weeks ago and got worse fast, bed ridden from a week ago. Been really good and done nothing as every little thing seems to aggravate things. Now using a nail file between thumb and finger joint just to type. Both balling and straightening my hands is difficult, very painful and aggravates the thumb joints and swollen fingers.
Situation’s bad enough that I’ve been being carried into a hot bath daily, am unable to make a drink or prepare food and am struggling to hold cup or cutlery and feed myself let alone look after others.

I know your not Dr’s but any ideas or clues to get GP on board? Do you recognize what's happening to me? Life is collapsing and we can't go on like this.

Sounds auto immune which would go with the Crohns but you need to see a specialist.

If you have 1 autoimmune disease you are more at risk of getting another which is what this sounds like. You need to got your gp and push for a referral.

I have crohns. One flare presented exactly the same, I literally had to crawl up the stairs as my ankle was immobile.
Also shoulder, wrist and fingers were agony.
Contact your IBD nurse asap

I have Crohns too, and yes it can cause inflammation in joints. Particularly lower spine is common. However what you’re describing sounds very severe. I’ve never had heat coming off joints. Keep taking the zapain. If your crohns is flaring how is this being treated?
Do you have an IBD clinic you can call? We have a hotline and IBD specialist nurse who will return calls or emails. Where is your consultant based?

That could absolutely be connected, there are many of us people with chrons who also have joint issues. Do you have an IBD nurse, can you contact them?

Hi OP, no personal experience, but didn't want to read and not say I hope you feel better soon. I understand Joint problems are strongly linked to Chron's - hopefully your joints will settle down when your Chron's does. Your Consultant or GP need to know how debilitating this episode is. 💐

Thank you. Yes it's really severe, I toughed out Chron's for a decade following misdiagnosis, then three years ago got a colonoscopy report that said indicative of Chron's but was told by GP it wasn't a diagnosis.
Was hospitalized suddenly last year and told I was diagnosed three years back.
.
Only allowed one packet of pain killers, surgery very anti painkillers or sleeping tablets in case of addiction.

Only ever contacted IBD nurses once to ask about Covid vaccine vs Chron's, but didn't get a reply (tbf it was at pandemic onset) Consultant is at hospital. I'd not realized I could call about things beyond gut issues, and diet.

Definitely give them a call, they might arrange bloods or stool sample. They may want to change your meds if you’re flaring. They may give you a short course of steroids which will help the flare. Good luck and if they don’t reply, call again 👍🏻

Are you on crohns and colitis U.K. I think they can put you in touch with a ibd nurse too.

Crohns sufferer here too, I have sore achy lower back and my right knee is terrible at the moment so absolutely belive it’s all linked just finished steroids for flare which I don’t think did the job but who knows it’s all quite new for me and I’m struggling. Also a nurse and need to go back to work as on half pay and I can’t afford it. I can hardly walk or stand so I don’t know how that’ll go.
Not allowed nsaid either so in pain 24/7

Speak to your consultant as you can’t go on like that. Sounds awful I don’t have any suggestions sadly but do speak to them and get a plan to ease your pain/discomfort. I know the discomfort I’m in how and that’s bad enough so I can’t imagine how you’re feeling.
Take care op, I hope things improve for you and you get the support and care you need from the ibd team

Could be something like lupus or Addison’s. Both autoimmune conditions. Ideally you’d do well to see a rheumatologist and an endocrinologist. Do you take steroids for the crohns? If you do you are at risk of secondary adrenal insufficiency- and possibly primary Addison’s as it goes with crohns as in autoimmune so the double whammy of steroids and autoimmune would make you more prone to it and needs investigating. A Gp can do an early morning cortisol blood test.

I have Addison’s, lupus, asthma, sjorgens, pituitary issues and hypothyroidism. My mum had crohns and adrenal insufficiency.

I have ulcerative colitis rather than crohns so feel free to ignore me, but my IBD consultant always asks about my joints at all appointments, so could definitely be connected. I would bypass the GP completely and contact your IBD team directly.

I have arthritis and it/similar joint issues can be associated with gut issues as it's all inflammation related. I'd get a GP appointment asap if you can't contact consultant

I have UC and tend to get one very painful knee when I flare. They do always ask me how my joints are so there is definitely a correlation.

Keep nagging and if you still aren't getting anywhere contact PALS.

Hope you feel better soon.

I have had reactive arthritis with those symptoms, which was a reaction to diarrhoea caused by colitis. I also had red patches of skin near the joints. You need to see a GP and get help for it.

Crohns related arthritis is really common

Thank you all, I suspect I need to start saying and thinking about 'Auto Immune disease' rather than 'Chron's' and being a lot more pushy. Just googling using different vocabulary has brought up a few things.

It is ridiculous to be at this point of inability to self care and getting nowhere with GP, but perhaps it's because I'm not supposed to be contacting them about it and should be contacting an IBD team.

I am bad at making a fuss, but I got The Zapain after I pointed out how much pain I normally take and that I didn't ask for painkillers for broken bones or childbirth so please believe I couldn't take any more constant pain and if addiction was what was worrying them I was going to end up with alcoholism by choice.

Really sorry for everyone suffering pain and discomfort and really appreciate people opening up about it all, but I have to say Crappyfridays7 I'm so sorry that of all people you are in that position.

You can have a Crohn's flare and your bowels aren't affected but your joints are. You need a blood test to measure your ESR and CRP levels.

I have had auto immune inflammatory arthritis for 5 years. I have had 2 bad flares in those 5 years and my symptoms were exactly like you are describing. Multiple hot, swollen, very painful joints. Was bed bound and hospitalised on both occasions. I received IV steroids to get it under control and now have various meds to keep me functioning. It sounds very much like some kind of inflammatory flare OP. You need to see a professional. Hope you get some answers and feel better soon.

Joint pain goes hand in hand with Crohn's disease and ulcerative colitis. It's a co-morbidity. About half of us with these conditions will suffer with our joints too. The worse the flare up, the worse the joint pain for me.

www.crohnsandcolitis.org.uk/about-crohns-and-colitis/publications/joints

www.actonaxialspa.com/ Have a look and good luck with getting answers x

I have to come off here for a bit as I'm making things worse, but so much I need to learn about, thank you!

Random but how recently (if you’ve had it) was your COVid vaccine?

I’m similiar, chrohns and arthritis - from 48 hours past my second COVid vaccine I’ve had similar symptoms, gut flare up, joints inflamed, painkillers not touching it.

I’ve finally got the drs to take me seriously enough to actually give me a face to face appointment so nothing to help but just wanted to add your not alone (and also maybe gather more data if it happened post COVid vaccine, not that I wouldn’t get my vaccine again, I think it’s brilliant but at the moment no one knows if it can cause reactive arthritis so the more data the better)