Since July I have had severe joint pain. After a number of tests it looks likely that I have inflammatory arthritis linked to my UC even though my large bowel has been removed.
Here's the kicker... I'm not seeing the rheumatologist again until mid December which is when treatment will be sorted.
I have joint pain in nearly all joints and if I am immobile for a while at any point during the day the joints in my hands, feet and knees freeze and its very painful to move them. My shoulders have started to freeze at night time now too. At the moment I am on Tramadol (1 in the am, lunch & pm and the 2 at night to go to sleep) and wear compression gloves and socks. The Tramadol only takes the edge off of the constant ache but not the physical movement pain. I'm reluctant to up my dose (I can take 8 a day) as it leaves me nowhere to go.
Now finally to my questions
Is it worth speaking to my IBD specialist nurse and see if they can take over the treatment from rheumatology?
Does anyone have any advice on how I can reduce my pain? Exercises, diets, spells? I'll try anything as I'm so down.
I have inflammatory arthritis too. I have had a lot of relief from immune depressing medicines and from regular chiropractic visits. In between sessions I do the exercises my chiropractor has taught me. They really do help me.
OP I had a bout of immune system related athralgia. With terrible aching joints. Although not as bad as yours sounds it was unbearable.
Somewhere I heard about drinking kefir which is a fermented probiotic goats milk. I ordered a batch from Chuckling Goat in Wales and after six weeks or so ( I had finished the 30 days of kefir) I remember one day thinking ‘ I feel great’. At the very worst it did me no harm.
Diet wise, I find sugar, nightshade veg and some cheeses can make it worse so you might want to cut down on these if you eat them (food aggravators vary for different people though).
I don't know much about UC or IBD but if say you should definitely be treated by rheumatology, at least at first. They'll be the best people to get you on a good medication. The right drug really can work wonders. Good luck!
I was diagnosed with enteropathic arthritis linked to my crohns disease earlier this year. I had to wait about 3 months but paid to go privately initially because I was concerned about joint damage.
I absolutely would contact the IBD nurse. Hopefully they can expedite the appointment to the rheumatologist. IBD and arthritis are linked so you will not be the 1st patient in this position and maybe there is a pathway established.
If not maybe speak to PALS. It is recognised that early treatment for inflammatory arthritis is imperative.
I was in this position 14 yrs ago - inflammatory arthritis (now RA diagnosis) after UC surgery. If the joints are actively swelling you need resting splints for night time not compression bandages, it also helps to immerse in warm water and gently move the joint around. I was lucky that Rheumatology came to see me on the GI surgical ward, so not a long wait for an appointment but it did take 18 months to find drugs that worked/ I could tolerate.
You don't want to switch to IBD for treatment but I can't see any harm in contacting your support nurse from that department. Our hospital has a stoma/pouch nurse specialist and she has answered lots of questions from me over the years and will be able to advise you on which painkillers or anti-inflammatories you can take.
While your disease is active s not a good time to start an exercise regime but when you have periods of remission it does help - not now though, now your body needs to heal. Take care, sleep a lot and ask for help.
Go vegan. Try it for 6 weeks. It helped me massively. I’m now eating a bit of cheese, meat or chocolate very rarely. I can now walk up the stairs pain free (still a bit stiff), where’s I used to cry every night going up.
Hi everyone, thank you all for sharing your advice! I’m finally under treatment with a steroid injection yesterday and I started Sulfasalazine today, and whilst I know the results will not be instantaneous I am hopeful that I’ll be pain free before too long.