10-09-2009, 11:36 AM   #1
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Crohn's Related Arthritis

I'd like to ask people who have joint pains which you think are related to, or have started with or after your Crohn's, about your joints, and the pains you experience:

Have you been officially diagnosed with a form of arthritis, which? (or which do you suspect you have if not officially diagnosed?)

Which joints?

How do they feel? chronic non-specific ache, full of gravel/rust/chili pepper/glass/etc, electrical zap! pain shooting hither and zither, swollen, hot, acute nasty ache that makes you cry, hurts when you try to lift a le cruset pan of water, etc. No need for an essay just some key feelings.

Thanks muchly!
10-09-2009, 01:10 PM   #2
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Yes, arthritis can be one of the "offshoots" of Crohn's disease. I put that in parenthesis because it's not a symptom, but there is a word for it (maybe "side effect" would be better?) Everyone is probably different, but mine comes and goes with my flareups. I mainly get just achy in the hands a lot, but when it gets worse, it can go to several if not all my joints, sometimes in the left and right knees and elbow and wrist. It's hard to explain, but it travels around my body at random. Yesterday was weird because I woke up and it was really bad on the right side of my jaw. I had the hardest time trying to chew my food!
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10-09-2009, 03:10 PM   #3
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I saw a rheumatologist a few years back. I get the soreness in my wrists, knees and hip...As soon as the flare goes away I always feel better. I don't think its the type of auto-immune arthritis that affects so many people. Rheumatoid arthritis is very disabling and disfiguring.

Does any one have any disfigurement of their joints as a result??
Instead of hiding in the darkness of a grey cloud, why not look for the silver lining?
10-10-2009, 02:55 AM   #4
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I never had a problem with my joints til I went on Remicade and boy did I get a nightmare...One day my elbow would be swollen and red and hot to the touch - then two days later it would be gone - then my knee would blow up - then that would be gone - then my toes would blow up to the point where I couldn't walk - since being off the Remicade I have had NO arthritis...
10-10-2009, 03:42 AM   #5
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I have RA in my hands, neck, hips and shoulders. Remicade helps some but about 5 weeks after infusion pain and stiffness returns with full force. Cold weather also makes things worse. Pain is hands is a constant heavy, dull pain. Shoulder pain is sharp pain when I exercise. Hip pain comes and goes but when it comes is a sharp pain that makes all activities--sitting, standing, walking, everything painful.

RA and Crohns are related. They both are autoimmune diseases where the immune system attacks the body as if its a foreign substance.
10-10-2009, 06:44 AM   #6
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my mum has arthritis in her left knee

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10-10-2009, 08:29 AM   #7
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I have had joint and muscle pain on a constant basis(probably because i install cabinets every day) but also surely a result of having crohns and not being able to get essential nutrients. I have tried a new health drink that contains 13 servings of fruits and vegetables in one 3 ounce serving it has helped me temendously with my aches and pains as well as other ailments have
10-10-2009, 01:56 PM   #8
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boydman said:
I have had joint and muscle pain on a constant basis(probably because i install cabinets every day) but also surely a result of having crohns and not being able to get essential nutrients. I have tried a new health drink that contains 13 servings of fruits and vegetables in one 3 ounce serving it has helped me temendously with my aches and pains as well as other ailments have
Is it okay to mix me up a cocktail of Ocean Spray and Welch's (readily available from my local grocer's shelves), or do I need the Brazilian wonderberry?

So, do you take 3 ounces for your arthritis and 4 ounces for your Crohn's, or am I confused? Please clarify.
10-10-2009, 02:39 PM   #9
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i was diagnosed with palindromic rheumatism, before they diagnosed me with crohn's.

i don't know if i still technically have that... i think it was just the crohn's causing the joint inflammation.

the joints that bothered me the most were both of my ankles... they'd take turns acting up.... but i've also had inflammation in my knees, elbows, wrists and fingers... but overall the inflammation in my ankles were always the worst.

the pain would bring me to tears at times... it was just very sore and my skin would get red and swollen and a little burning... umm the pain is indescribable... i guess just kind of like a really bad cramping pain?? i don't know.

it was also worse in the mornings... or after i'd been sitting a while and had to get up. also, it would act up more in the summer time and winter... but worse in the summer.
10-10-2009, 02:39 PM   #10
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go for the welches i dont care. its not the point all im trying to say is i dont eat fruits and my vegetables have to be cooked down to a point where there is hardly any nutritional value. whats wrong with thinking a supplement giving me what im lacking would make me feel better. i never said a brand name and many companies sell th same thing. all that i am saying is its helping me maybe its worth looking into
10-10-2009, 03:14 PM   #11
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I have not been diagnosed with arthritis but the joint pain didnt start til after the remi and is continuing to get worse. I'm going to leave another message with doc on monday, not sure if i can continue this pain. My next infusion is in 2 weeks and am seriously reconsidering doing it.

Joint pain - ache in hips, sharp shooting pains in lower back, aching in shoulder bones (sometimes sharp), sharp pains in back of neck and sometimes all the other joints hurt but everything else just comes and goes. The hips and back are constant.
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10-11-2009, 09:38 AM   #12
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So some people have it after starting Remicade - guess I better not have that then! And others smell of Salt Pork And Ham. But I'm obviously far from alone with this.

I started the thread because I saw a Rheumatologist on Friday. Now, he said it wasn't rheumatoid arthritis as he could not find any evidence. How the flying bleep he thinks he might have found anything at all with the cursory examination and history he did I'm not sure. He seemed to reach a conclusion far too quickly for my liking. However, to be fair, when he moved my arms around/etc they did not exhibit the symptoms I generally see: like today it hurt to lift a mug of tea to my mouth. So I tried moving my arm in the same way as he did, and lo' it didn't hurt. Move my arm in the same manner as a mug, and it did. Go figure, as you say across that side of the pond.

He utterly dismissed my thinking it was an arthritis, with a had-wavy 'its soft tissue'. Which was really less than helpful.

There were two things that came out of the meeting: I have an MRI on thursday - should be exciting as I've never been in the clonky machine before. And he suggested I try some other painkiller, but we couldn't remember the name: began with met- something. Anyone recognise it? - google didn't come up with anything.

Paracetamol and codeine doesn't touch the aches and pains, and whilst tramadol does help a bit. It bungs me up something rotten. Kinda ironic isn't it.
10-11-2009, 10:02 AM   #13
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I've got pain in my wrists, shoulders, hips, knees, ankles and feet Beth. I've seen Rheums and I'm negative for RA factor but x-rays showed some degenerative stuff going on as well as a genetic thing with some of my fingers .. Might be related to Crohns or the immune problem but not sure yet.
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10-11-2009, 10:22 AM   #14
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It's a right ol game trying to get to the bottom of these things isn't it Drew! I dont know whether Crohn's Related Arthritis exists as a recognised separate problem, to the other auto-immune arthritis's. Looking at the RA wikipedia page I dont seem to tick many of the diagnostic criteria, but was interested in the paragraph that suggested treatment should be started early to avoid degeneration of joints rather than waiting until all the boxes had been ticked.

Certainly, I dont want to be like my neighbour with RA who has to ask us or random people in the street to help open jars or put the bin out for the dustmen for her - I'm far too young for those kinds of issues! And I guess you are too.
10-12-2009, 03:24 AM   #15
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I have RA, diagnosed about 5 years before I started with CD. It got markedly worse when the CD appeared. Mine was diagnosed quite quickly as I presented with classic symptoms - high ESR/CRP, positive Rheum. factor plus obvious symmetrical pain and swelling in my hands, wrists and knees. These days it affects far more of my body, and when I'm in a chrohns flare there are very few joints that don't cause me pain - I struggle to eat at times because my jaw is so painful I can't chew. I can tell the difference between Chrohns pain and RA - hard to describe, one is 'deeper' than the other although there's no real difference in the intensity of the pain.

Imuran has definitely helped (shame about losing my hair and eyelashes but hey!), but on a cold day, I am that woman who has to ask random strangers to open jars

I was lucky in that my doc was of the opinion that you treat as soon as symptoms show to try and minimise the amount of degeneration, and so far (after 11 years) Ihave very little in the way of visible damage. My hands are usually obviously swollen, but not twisted in any way which is down to the early treatment I believe. On Xray, the only joints that are severely damaged are my shoulders, right in particular. That's a bit knackered tbh, and replacement has been suggested once or twice as an option for the future.

It's particular movements that are most painful for me beth - I can't move my right arm without thinking about it, because I have a very limited pain free range of movement - your comment about lifting the mug of tea struck a chord.

Treatment - used to love my voltarol but obv. it's a no-no now. Codeine and paracetamol is about all I can take, but it only takes the edge off the joint pain. Hate tramadol, it made me feel most odd. I have steroid injections which are fab - bloody big needle but they work a treat and I usually get about 6-8 weeks of no pain in whichever joint I've had injected (usually shoulders/hips). I'm currently waiting to see my consultant for a follow up and ongoing discussion re: infliximab, and plan to raise the whole pain control thing with him. I cope reasonably well with the gut symptoms on a day to day basis, but I find the constant pain very wearing and it makes me grumpy/narky.
10-12-2009, 05:39 AM   #16
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Hi Sparky. I know what you mean about tramadol. I'm thinking of asking my doc for plain codeine instead. At least it doesn't bung me up so I need to take laxatives. And the grumpy thing, yup, I just can't think straight through it either. So even tho I know I'm being a grump I can't get out of it.

I've been for a short buzz round the block on my bike this morning and now I know what the chili pepper joints are like. My left wrist has a burning sensation. Didn't really think of it like that before.
06-13-2012, 12:42 PM   #17
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I have had Crohn's for about 45 years. The painful joints, primarily my hips, started almost 30 years ago but no one knew of the relationship to Crohn's and I was not treated until the arthritis had destroyed my hips, knees and lower back. Those of you who are having joint pain need to seek treatment so that you don't end up with joint replacements, which I'm dealing with now. Your gastroenterologist is not the one to treat it. You need to see a Rheumatologist ASAP.
07-06-2012, 04:21 PM   #18
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So I have had crohns for 15 + years and eventually needed an ileostomy. After 5 years with the ileostomy I am getting the joint pain again. It's been a long time since I experienced it. It's in my wrist and my hip. I am in pain and don't know what to do. To top it all off I had thyroid cancer a few years ago and moved to a new city 2 weeks ago so I have no dr's and I hate to complain to my husband, between the crohns and cancer I am always sick and in pain. I don't want to take more medicines any over the counter pain meds work?
07-07-2012, 07:22 AM   #19
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I have Osteoarthritis and Crohn's disease
07-07-2012, 01:37 PM   #20
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I have never experienced joint pain until recently. Hips, knees, tops of my feet, inside of elbows. The pain comes in waves, and random joints affected, but usually constant in hips.
I saw Rhematologist recently, who ruled out arthritis with an examination of lifting arms this way and that, but i laughed when i read Beths account of the mug of tea, the same arm the next day hurt like hell at the elbow when i lifted cup, or tryed to brush hair!

Whatever the pains are they are really good at hiding, as blood tests show nothing. And i'm definitely not making them up. Maybe its referred pain??
Well whatever it is i wish it would stay in my gut so i know whats going on at least.
07-07-2012, 02:13 PM   #21
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I have enteropathic arthritis which is an extra intestinal manifestation of crohns. It usually occurs in the large joints so hips, knees, shoulders and ankles. The joints are usualy warm to touch and very swollen. At the moment my arthritis has flared up again in my knee at times I can't walk at all when flares get very bad as I can't bare any weight at all. The treatment I have for this is usually the same as for my crohns, so I find when my crohns is under control my joints are usually pretty good.
Hope this helps and you find some relief for your joint pain x
07-21-2012, 05:55 AM   #22
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I was diagnosed with arthritis of Crohn's disease in January of this year. I have been on Remicade. I started off with every 8 week treatments, then every 6 weeks, 4 weeks, and now I am down to every 3 weeks.

My knuckles, wrists, and feet swell and are hot to the touch..sometimes on both sides and my knees ache immensely. I cannot drink any antinflammatory medication due to my Crohn's disease so I am left with waiting around for my Remicade infusion shot.

The pain I would get from my flare ups does not compare to the arthritic pain I get...at least I was able to manage my flare ups better. I am also taking calcium and Vitamin D3 5000 mg supplements. My blood work showed I was deficient.

I also discovered that humidity really swells my joints terribly to the point I cannot walk or even have trouble opening things with my hands.

Anybody know if instaflex supplements with tumeric root really help with joint pain? Best wishes for those of us going through this ordeal. Not many people understand what we go through.

Last edited by jxarias1; 07-21-2012 at 06:01 AM. Reason: forgot to add comment
07-22-2012, 08:45 PM   #23
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If I somehow strain a muscle,many times my immune sys will attack, it might be sore for weeks,with intense pain. Short dose of pred will fix it.
Have UC.
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08-24-2012, 09:55 AM   #24
Paul Cronk
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I have a number of issues with my back, all of which were manageable before Crohn's, all of which are much worse while Crohn's is active.

There is a compacted disc pressing on the nerve in my neck. I also have sacro-iliac pain. these are real, existing problems, but in a flare of Crohn's, somebody twists a screwdriver into these areas.

All this is supposed to respond to the Humira I am now taking. There seems to be some improvement all round but the jury is still out.

There is no proof, but the rheumatologist is convinced everything is related. It goes something like this: the Crohn's sets off an generalised inflammatory response which, apart from specifically screwing your guts, will also seek out vulnerable spots elsewhere. Arthritis is another auto-immune disease and a few people who are diagnosed with Crohn's actually have more extra-intestinal symptoms than gut problems.

For me, one is as bad as the other, but let us hope that Humira will help both. Fingers crossed.
09-06-2012, 12:27 PM   #25
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I am also experiencing intense joint pain. Mostly in the areas of my neck, shoulders, hips, knees and sometimes ankles. It also seems to be aggravating my carpal tunnel (which I've had on/off for many years). At night my arms and hands burn like fire and it hurts like crazy. The other joints (especially the ankles and hips) mostly hurt when I get up from a chair, out of the car, or to a standing position when I'm down on the floor or squatting/kneeling. Once I'm in one spot, they don't hurt, it's when I move that they hurt. Even getting out of bed after resting, I hurt like crazy when I first stand up and start to walk. Once I'm moving, it's okay again. I even notice that when I go to grab my purse and get out of the car, I barely have the strength in my shoulder/arm to pull it out with me.

The strange part for me is that I am not currently in a flare at all. I had a small bowel resection in June, and have been feeling better than ever with regard to my gut/bowels. This problem with my joints started about a month or so ago (several weeks after surgery). And other than an iron supplement and various vitamins, I am on zero meds. The only meds I've really ever taken for Crohn's is Pred, and I've been completely off that since May. Seems weird that this is happening now, when I'm otherwise feeling great, and I have NEVER experienced it before in my life. Annoying!
07-29-2013, 04:19 PM   #26
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I have the same systems. When I sit for a little while and get up, I can hardly walk. It takes a few steps to get going. Everyone keeps asking what is wrong. I had internal bleeding back in April because of Meloxicam that a foot doctor gave me for arthritis in my feet. My crohns dose not seem to be acting up, but my joints in my legs, feet and ankles just seem to be getting worse. Also, I am getting to where I can't open the simplest of things. It is really hard at 48 to ask people to open stuff for you when you have always been a strong person. Most of my joint pain is in the lower part of my body.
07-29-2013, 08:31 PM   #27
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Hi, Sash! As I had posted previously, I have been on Cimzia for 9 months now. I have never felt better. I have had no joint pain since the first time I switched to Cimzia. I have not had any flare ups with my intestines in about four to five years now.

I recently got my eyes checked, because Crohn's disease can eventually damage your eye sight as well. Doctor said my vision was perfect. He did say that Cimzia may be causing some slight side effects (blurred vision), but not a big concern.

I also got my blood results last week and all is great...no more low levels of Vitamin D. It really helps that I've been drinking this veggie shake: cucumbers, ginger roots, celery, lemon juice, spinach, rasberries or strawberries, apples. Feel pretty energized.

Oh, and recently I saw in a Dr. Oz show that eating red cherries is a good source of anti-inflammatory remedies. It also boosts your energy too.

You should look into Cimzia. Hopefully it will work for you.

I was diagnosed with arthritis of Crohn's disease about a year and a half ago at 40 years old. So age does not matter...our disease is not prejudice.
07-30-2013, 09:49 PM   #28
Join Date: Jul 2013
Location: Waterloo, Ontario
I have been seeing a rheumatologist for about 18 months. She has always suspected I had 'Crohn's related' arthritis. I was diagnosed with Crohn's in 1985 however I had never heard of an arthritis relation before this. I have eight siblings.... all of which have one form of arthritis or another. A few have IBS,but nothing more serious. Two weeks ago, I was set up for a complete new set of X-rays as my rheumatologist now suspects I may have Seronegative Arthritis. Regardless, my pain comes and goes and doesn't target any one area. I do often have sore hands and elbows, but I would have to say my hips are the worst. One more than the other.

-small bowel resection / January 2003
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remission ever since
08-14-2013, 09:38 AM   #29
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If I'm in aflare I get terrible pain in my right knee and hip, and left elbow and shoulder. But now that things are "under control", those pains are gone. In their place are terribly stiff fingers and sometimes toes. The doc just said its a "extraintestinal manifestation" and that I get to live with it. I'm 2.5 months post surgery, their hope is that my body is still just adjusting to things.
08-14-2013, 09:51 AM   #30
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Location: Salt lake city, Utah
I have arthritis in my fingers, hands, wrists and knees. My finger joints are swollen and painful and the fingers have rotated so that they are no longer straight. It is worse in the winter, and it does seems to flare and subside. I have had arthritis long before a Crohns diagnosis, but have probably suffered from Crohn's for much of my life with incorrect diagnosis of Irritable Bowl and Celiac disease.

I have used a lot of ibuprofen for the arthritis and for degenerative disc disease and this has probably contributed to the stomach ulcers and bleeding ulcers.

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