In remission??? but still sore back, joints etc...

so things have been pretty good lately. To update everyone, I was diagnosed in May 2012. I never had loose BMs but was prone to constipation. I gave up wheat and improved my diet. Things slowly improved digestion-wise but I developed lots of back, ligament, hip plus general aches and pains which is still with me.

Currently my appetite is good. I still try to eat well but I find I get hungry and have regular BMs. I still am not sure if I have CD... I never really bought it. My GI wasn't too thorough (IMO) and all that was seen was an ulcer on my TI.

What i still currently do have is lower back pains that flare up... there is a lot of inflammation. it's a bit of muscle but mostly it just hurts... more like my spine.. maybe disks?. when i try to work it and move around.. it just burns and flares. i am stiff in the AM and i spend most of my time with my daughter who is 2.5 yrs old, pushing 30 lbs and with a refusal to walk.

i am worried because if I have CD and am in remission why does my back still hurt? anyone in remission but still have aches and pains?? what else could be going on? i really do need some support.. sometime i lie awake in bed and fear bone cancer or lymphoma. i shouldn't worry but i didn't have much faith with my primary dr. or my GI.

I see a Rhumey Thrusday.. if anyone has any advice on what they can check and test for I'd appreciate it.

the main symptom that has been going on has been lower back pain.. however i did have some digestive issues but they seem to be resolved.

i see a PT and she's also an osteopath.. she's awesome. she has been the only one to help.

I got blood tests in the beginning (may and again in sept) and i was 'slightly' elevated for inflammation. they also did an xray of my SI joints and saw no inflammation.

when i go to the rhumey this week i will demand they re-test again. it's not unreasonable although my GP refused and said i had tests within the last 6 months!!

it seems my back pains come and go... my back 'flares' up but my stomach and guts don't and are fine. i still have an appetite, eat and have regular BMs. there is no question things feel inflamed but it feels like it's coming from my back and not my intestines.

yes- in regards to my daughter.. she walks but is 2.. you know how that can be. endless battles and arguments over walking and over-dramatizations on how tired she is. i end up having to lift her here and there to get places. we're out several times a day because i have my other 2 kids in school. so i'm busy and rarely get time to rest my body. i do stretches when i have time.. so not often. i do find sitting makes it worse and possibly my poor posture on the computer aggravates things.

as for the back pain... it's stiff. but it's sore just when i put the slightest pressure on it. it feels like the nerves are inflamed and involved.. it feels like it's wearing away.. loosing srenght and the muscles around it are tense.. other muscles feel week. it's not like back pain i've had before where i'm stiff or pulled something.. it's more long-term.. but i don't know how most people pains feel.. it just doesn't feel right to me.

i have never had a fecal calprotectin test- no fecal test in fact. i always wondered why they didn't test any further.. what is it? i am scheduled to see my GI Dr. in decmeber.. i could ask for it then.

ok- i will ask for that.. thanks. maybe even my rhumey can request it.

but can i have CD with no symptoms except for back pain? if my guts were inflamed wouldn't they bother me occasionally??

The arthritis affecting the spine will flare on "its own", unrelated to the disease activity, unlike arthritis in the peripheral joints, that will follow the disease activity.

I'm in remission and I have awful lower back pain. Turning in my bed at night, getting up in the morning, bending... it just hurts so much. And I'm really stiff. Waiting for a rheumy appointment... I can't wait cuz I'm 26 and I feel like 80.

thanks kazbern- i am gong to ask for a MRI too. at least just to rule stuff out. at this point i am wondering... i am still open to Crohn's and honestly at this point it would be nice to be sure about one diagnosis.

I do wonder about prolapse.. lately it feels like something is protruding into my lady parts area. i have read this can happen with prolapse but nothing has been looked at either. i am waiting to see a gyno and apparently won't be able to get in until jan 2013 and this was from a referral made in sept!!

anywho- after a nite's rest i feel better but just very stiff.. that is promising.

i know i do need to improve my core muslces and keep in mind my posture... maybe getting lazy with that after carrying and pushing out 3 kids is taking it's own toll.

Hey @crohn's in NC - this is a pretty old thread. You might get more response if you click on "Post New Topic" and start a new thread where you introduce yourself and share your situation. :)