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What's the worst joint pain you've had?

A couple of summers ago there were a few days in which I couldn't go up and down steps. For almost a year my hips were acting up so badly that I couldn't walk more than a few hundred feet.

Thought that would be over when they diagnosed me and got me started on drugs. (Don't you just love it when they say things like "To best way treat the joint painis to treat the bowel"), and for about five months I haven't been bothered too much except for twinges and was able to enjoy grocery shopping again. (I don't think I can be trusted doing grocery shopping in one of those motorized "little rascals" it just would be too tempting to run down some people down)

Last night from nowhere my right ankle started hurting. I've been hobbling around with a cane this morning...until my right shoulder started hurting too. Now I'm laying up in bed with my morning handful of pills and a Mountain Dew to wash them all down with.
 
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I had knee joint pain so pain once I was crying laying there, and I couldn't move it. Scared my mom so bad because I usually have a fairly high pain tolerance. It was off to the rheumy the next day.
 
For some reason whenever I get inflamed joints its always in my groin/hips.

I think the worst pain for me was last summer when it was so bad it woke me up at 3am. It was so bad at first I thought I had dislocated my hip. I couldn't sit up, roll over, anything... Eventually I got so frustrated I had to just yell for one of my parents to come and help me sit up so I could take some pain meds :(

I hate how it's so random when it comes...
 
katiesue1506 said:
I had knee joint pain so pain once I was crying laying there, and I couldn't move it. Scared my mom so bad because I usually have a fairly high pain tolerance. It was off to the rheumy the next day.
What do rheumatologists check for? How do they manage their Crohn's patients?
 
CD68 said:
What do rheumatologists check for? How do they manage their Crohn's patients?
When I was sent to one I had had all these major x-rays. Some had me injected with dye and scanned. Others had me going into coffin like machines to be scanned :/

I was told he was checking for arthritis, but they never found anything wrong that they could fix. So now I just have to bear the pain with pain killers... and i've found heat helps a LOT. I keep a heat pad next to my bed 24/7 now.
 
I went to a rheumatologist for the joint pain an he basically checked all my joints and my level of feelable (lol) inflammation. he then offered a cortisone shot that would be injected directly inton my kneecap, I told him id deal with the pain. lol
 
Well I went to a rheumatologist, he told me that joint pain I've had for 10+ years that goes away while I'm on prednisone was prednisone withdraws (remember I've had the pain for 10+ years, long before taking prednisone) and that the probability of a male my age having rheumatological problems was very low.

He then noticed I was flat footed and decided that my joint pains were due to that. Yes, apprently my flat feet make my fingers hurt. He said my joints didn't appear to be inflammed (I have bright red circles around all my joints), that I don't have a rash (Nearly my whole face and scalp are covered in an inflamatory rash and my skin is flaking off), and that the x-rays of my ankles (looking for a birth defect that would cause flat-footedness) didn't show any problems (The X-Ray report says my ankles are inflammed). He refused to run any tests for inflammation or rheumatoid arthritis.

He then perscribed me a year's unlimited supply of a pain killer, for pain I supposedly won't have once I'm finished tapering this weekend, that has a potentially fatal drug interaction with another medication that I'm on and he absolutely knew I was on.

Needless to say, it was a waste of time and did a ton of damage not only by potentially killing me with a drug interaction but by filling my medical record with complete BS that is probably going to make every doctor I ever see from now on think I'm a complete liar, a hypochrondriac, or a munchosen's patient.

Anyway, apparently the way I'm going to have to manage my joint pain is just taking buttloads of pain killers from now on. Maybe if my fingers have warped into zig-zags 15 years down the road he'll consider joint inflammation. Either that or he'll assume it's due to being flat-footed.

A little more on topic, the worst joint pain I've ever had is pretty much right now. 2 darvocet and I still can't even go down the stairs to get to the next floor during my hourly runs. My knees buckle in reaction to the pain of every step, and I feel like crying every time. I've been trying to go down slidding on my butt but I have to be careful because that is insanely embarrassing if someone sees me.
 
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I get pretty bad arthritis with my Crohn's. The worst pain I've ever had was in my left sacroiliac joint (it's where the spine meets the pelvis... i didn't even know there were joints back there!). I couldn't move in any direction. i held onto the towel rod in the bathroom until my mom came home. i had my first remicade a few days later!

i also had arthritis in both sides of my jaw, so they gave me steroid injections. the pain is gone, but the bones erodes so now my jaw is shorter and my bite is all messed up!

arthritis seems to be an overlooked part of Crohn's, yet so many of us suffer from it!

heating pad and pain meds: the magic combo.
 
The worst joint pain for me were my hands. It actually started in my ankles, with swelling, redness and welts. Then for the next few days it went from each ankle to the knees and finally the hands. Once it got to my hands it was the worst ever. My hands were so swollen, they looked like latex gloves blown up and red as all get out. I could not even bare to have anything brush against my hands. The next day I was at the doctors who sent me to a rheumy. All my blood work for RA, ESR, etc. were through the roof. He put me prednisone for a while, which helped tremendously.

Now, its a constant ache in my hands, knees and feet.
 
RHOV said:
i also had arthritis in both sides of my jaw, so they gave me steroid injections. the pain is gone, but the bones erodes so now my jaw is shorter and my bite is all messed up!
This is new to me. I guess I wasn't taking this joint pain thing seriously enough. It sounds like Crohn's can result in real osteoarthritis then.
 
CD68 said:
This is new to me. I guess I wasn't taking this joint pain thing seriously enough. It sounds like Crohn's can result in real osteoarthritis then.
i don't think it's osteoarthritis. osteo is the wear-and-tear arthritis that comes from abusing a joint or with age. there is a type of arthritis associated with IBD (called IBD-associated arthritis, oddly enough :) ) or it could be rheumatoid arthritis, which is in the same "family" of autoimmune diseases as Crohn's. but yeah, joint issues always seem to be on the back burner when people think of Crohn's.
 
RHOV said:
i don't think it's osteoarthritis. osteo is the wear-and-tear arthritis that comes from abusing a joint or with age. there is a type of arthritis associated with IBD (called IBD-associated arthritis, oddly enough :) ) or it could be rheumatoid arthritis, which is in the same "family" of autoimmune diseases as Crohn's. but yeah, joint issues always seem to be on the back burner when people think of Crohn's.
Ugh.

Ankle and shoulder are okay today. I don't need the cane this morning but now it's my lower back, just above my tail bone.

I don't know about the rheumatoid arthritis,at least with me. Before I was diagnosed with Crohn's a rheumatologist did a billion dollars with of bloodwork on me and found nothing but an elevated SED rate. Later when I was diagnosed I complained about joint pain, the gastro had me lay on the examining table and raise both legs up perpendicular to the table and lower them. I was able to do so and on that basis he said I didn't need a rheumatologist. (I've had bone density scan and MRI of my spine that revealed only age appropriate degeneration) I guess he's sticking with "the best way to treat the joints it to treat the bowel"

What I really really hate is that my symptoms, especially my neurological symptoms, are intermittent. By the time the apointment rolls around the flare is over and they can't find anything.
 
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