• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Crohns and pain, is this normal? kinda confused

Hi

I have recently been diagnosed with crohns, I am on Imuran and vitamin D.

My pain is in the lower back, upper back and arms + stabbing and aching pain in my ties, chest and head, which leads to headaches. I have severe fatigue and a generell feeling of being unwell, almost like the flue. I never feel rested after sleep and am not able to work because of this, I am acctually having big problems with doing everyday things when the pain is so overwhelming. I therefore find myself mostly on the sofa, resting and hoping that tomorrow will be a better day. sometimes i can have a few good hours, but I am too sick with pain most of the time :confused2:

I this normal? Is this typical for crohns or can it be something else wrong aswell?

Thanks
 
Last edited:
Some people have pains when they are flaring. It may be a bad reaction from one of your meds. Tell your Doctor about it.
 
Unfortunately I think this is fairly "normal" for Crohn's as I think a lot of us experience pain and fatigue often and some of us most of the time BUT THAT DOESN'T MEAN IT'S OKAY and that it's something you just accept. The pain means something - that your disease isn't under control and that you need medical treatment.

It's really difficult when you're first diagnosed because you think that the doctors have found the cause of your problems and that they are treating it. So that means you should feel better.

Sadly I think for a lot of us it doesn't work like that and it certainly wasn't the case for me.

Crohn's is a complicated disease to get under control and there can be a number of things going on. For example, I often have pain from active disease but also from strictures.

The fairly generalized all over pains and flu like symptoms are also something I experience, although I don't know what proportion of Crohn's patients do, and for me is an indicator of how well or not the disease is under control and the extent to which Crohn's is affecting my health.

Although one can't rule out an additional health problem, the Crohn's alone can account for all your symptoms, I believe.

How long is it since you started treatment? Imuran takes a while to work so you may need something to control the disease in the meantime. I think you need to go back to your doctor and explain just how much your symptoms are affecting your life.

When I was first diagnosed I didn't know what to expect in terms of life with Crohn's, but we shouldn't expect to be in pain and just accept it - and neither should our doctors accept that poor level of quality of life for us. We have to keep trying to find a treatment that works and your doctor should help you with that.
 
For me what you described is my daily life also. Sometimes but rarely I can have a great half of the day. Keep your chin up :ghug:
 
I started Imuran in september after I got dz, but had been ill since 2008.
the all over body pain camouflaged the crohns and I got the dz cfs/me...

when I first got dz my hopes were high to get a more normalized life, but the doc took me off painkillers, which has really made my everyday harder, when it gave me some relief. I was on vicodin

do you take painkillers? which is the most effective and doesnt mess up the stumach? (I get constipated) My pain doctor wants to put me on pain patches, but my gastro doc is shocked about this and doesnt aprove at all.
 
I also have been feeling very fatigued and my joints ache, muscles hurt, headaches. I recently went for blood work and everything came out ok. I really dont know where to pin point all my issues. Probably Crohns,Humira,age,depression :(.
 
Well I think I've been told about three months for your body to build up levels of meds like Imuran. So either you need another treatment in addition to that or it might be time to try a different med. Did your doctor ever talk about adding Infliximab to your treatments? Because it sounds like you need something that will work on a short timescale and also that your symptoms suggest a severity of disease that would make it a good choice.

I completely relate to your feelings of hope that a diagnosis would lead to a more normal life. It is really really hard when you realize it is not that easy to treat the Crohn's and that the diagnosis doesn't bring with it all the benefits you hoped.

Pain has been my major symptom of Crohn's and so I have at time taken pain killers just to cope. My experiences have led me to feel that other than occasional use, we need to reserve painkillers for a last resort. Here's why: 1) the most effective painkillers do seem to be all the opiates (tramadol, codeine, percocet, vicodin etc.) but the side effects (like you mention I suffered severe constipation) are not insignificant and inparticular cause problems for the gut and 2) when we take painkillers we mask the symptoms that we should be paying attention to in order to monitor the severity of disease.

If you are having severe pain then your doctors need to look for the cause of that whatever it may be - active disease, strictures, etc. - and attempt to treat that.

So on the one hand I understand why your GI doctor doesn't like the sound of a Crohn's patient on pain meds longterm but on the other hand he really needs to be working hard to find a better treatment for you and quickly too!

Have you tried a non-prescription painkiller like paracetamol for now? It can help a little - and sometimes more than you'd think. I know the pain is awful to cope with but I really would recommend that you try to get the cause of the pain dealt with before going on pain patches. If the cause of the pain isn't idenitfied and treated properly, you may end up in a worse situation in the future. That's what I went through and so that's why I really am wary of an approach that treats the pain alone.
 
I am in near constant pain at the moment, still waiting for some kind of diagnosis. I am always exhausted as well, and I think it's due to being in pain all the time. :( Hope you feel better soon and your docs can get to the bottom of your pain.
 
Hi I've recently been diagnosed also, trust me I feel your pain.
Sometimes my lower back swells so much it's hard to walk and I also suffer when I lie down almost feels like I'm lying on something.
My disease is also very active and have just been prescribed meds which I guess will find out in time if they work.
My understanding Krika is it will be a case of trial and error, maybe you should follow up with your doc I'm on pentasa, omeprazole, and iron supplements. Hope you feel better soon
 
Top