hey ive got the same thing going on. exactly. when you said forarms. wow....i dont know if its my chrones or something else. I just live with it. it comes and goes. It seems that fall time it hits my colon throughout the winter and now in the summer spring and summer my joints and not so bad on the colon. weird.... i live in indiana...we get all four seasons..tell me more about your stuff.
May 03, 2011
jj by: jackie
jj............I forgot to tell you, I've been off meds since October, because my hair was falling out from the pentasa, and I was feeling TERRIBLE. So since seeing Dr Chen, I've been on NO meds at all, not even vitamins. EVEN lab work has improved.
Now, if you're ON meds, I sure wouldn't advise u going off, but find an herbalist, sometimes both Eastern and/or Western meds are what we need.
Good luck
May 03, 2011
aches and pains by: jackie
JJ....so sorry you're feeling all the aches and pains
Are you on any meds at this point? I
I do suffer from sacralileitis (pain in hip areas) due to inflammation, from Crohns. So some mornings is rough getting going.
However, I have been seeing an herbalist since last October and with the herbs and diet changes, I have only had ONE diarrhea stool since October and have gained 4 lbs.......lol.
I met him at a Crohns and Colitis conference. He was one of the speakers along with Western medicine doctors. He has been working with IBD/Crohns/Colitis patients for many years and is a member of the Crohns/Colites Organization.
Anyway, I'm in California, don't know where u are but a NATURALIST/Herbalist may be of some help to you. His name is Dr Gary Chen, Encinitas, California. If you're not in this area, perhaps his office has contacts in YOUR area.
Hope you feel better soon
May 03, 2011
Muscle & joint pain by: JJ
Glad to see I'm not crazy then.... Or at least not crazy...er... I am typing this from my bed at 11pm can't sleep because of the joint pain in my fingers, wrists, shoulders, knees & lower back ... As well as the muscle pain in my forearms .... I believe whole heartedly that it's the crohns causing it...
1: I never had it before my crohns flared up
2: I get it worse just before and after diarrhea
3: I'm 28!! And I feel 90!!!
Jul 07, 2010
Chrons by: Jackie
Since I have been of pentasa since May 30, and only taking vitamins and probiotics, I feel great. Haven't been bothered with muscle aches/pains. However, my doctor is concerned that I'm not on any prescription meds and that I may have Crohns issues later on, so he wants me to consider remicade or humira. I'm hesitate because of the possible side effects, some pretty bad. At this point I'm more afraid of taking the meds than the idea that I may get sick later on.
Will let you know how it goes
Jul 07, 2010
crohn's and muscle pain by: Pam
I was diagnosed with Crohn's 14 years ago. I have had severe muscle pain the entire time. I've been told it's fibromyalgia. I don't think that's right. You know how you just know it's something else...it's this horrible disease called Crohn's? Well, that's how I feel. I just know it's the Crohn's and there's nothing that the doctors seem to do to help the muscle pain go away except steroids. I feel like Wonder Woman when I'm on them, but they have horrible side effects too and eventually the feeling of euphoria wears off and I crash anyway. I gain lots of weight when I'm on them and then can barely move because I'm so fat. Sometimes I can't help but have a pitty party. I'm going to the doc today about the muscle pain and I think he's going to have me start Remicade. I'm keeping my fingers crossed that something can be done for this muscle pain. I can't stand up straight. My lower back and my neck hurt constantly. It's hard to sleep even because I have the muscle pain 24/7.
Jul 07, 2010
crohn's and muscle pain by: Anonymous
I was diagnosed with Crohn's 14 years ago. I have had severe muscle pain the entire time. I've been told it's fibromyalgia. I don't think that's right. You know how you just know it's something else...it's this horrible disease called Crohn's? Well, that's how I feel. I just know it's the Crohn's and there's nothing that the doctors seem to do to help the muscle pain go away except steroids. I feel like Wonder Woman when I'm on them, but they have horrible side effects too and eventually the feeling of euphoria wears off and I crash anyway. I gain lots of weight when I'm on them and then can barely move because I'm so fat. Sometimes I can't help but have a pitty party. I'm going to the doc today about the muscle pain and I think he's going to have me start Remicade. I'm keeping my fingers crossed that something can be done for this muscle pain. I can't stand up straight. My lower back and my neck hurt constantly. It's hard to sleep even because I have the muscle pain 24/7.
Jun 18, 2010
Body aches, myalgia by: Jackie
It saddens me to read of some of the complications some of you are experiencing. I stopped taking pentasa. Had to make one trip to ER, got a shot of toradol for muscle aches and was put on prednisone 20mg daily x4 days. I feel 100% better. That was @3 weeks ago. I still have had no diarrhea, no aches.....except when I fall asleep on the sofa, and am eating everything in sight. I am still on heavy duty vitamins...all of them and probiotics, which I'll probably take the rest of my life. Keeping my fingers crossed .....
Jun 18, 2010
Muscle, joint pain by: Josie
Yes, I've had IBD for over 20 years and have been complaining about joint and muscle pain the entire time. I have it all the time now and it's not during a "gut" flare-up. I have weird skin conditions too. I've gone to a zillion specialists and have had a zillion x-rays, tests, CTscans, etc. and haven't been helped one bit. It's so discouraging and frightening at times but I know I'm not crazy and it's not Fibromyalgia, etc. I'm thinking since IBD is an immune system disease, like Lupus, it's just one of those aches and pains that can't bee seen on tests. And doctors don't believe it unless they can see it. Hang in there.
Jun 07, 2010
Back Pain by: Heather
I had to to see a Rheumatologist because of the pain in my back. He told me alot of his patients get arithritis called Ankylosing spondylkitis.
Now I have read up on it and yes it is true. However, mine didn't kick in harder until I started receiving Remicade treatments, which they would use for AS as well, but when treatment wears off I can barely stand, walk, or crawl.
Very horrible disease.
May 29, 2010
Muscle pain & Crohns by: Jackie
Several weeks ago, May 2010, I was diagnosed with Crohns. ALthough I have not had any diarrhea in over a month, I am now experiencing body( muscle) pain. I can barely stand up straight.
My GI doctor says it had nothing to do with Crohns........I disagree and am considering finding another Dr., with more experience with Crohns patients.
Does anyone have any ideas (solutions) that have worked for you? I don't have joint pain, just muscles from my temples to my neck, down my back, upper arms and thighs
Oct 14, 2009
joint pain by: Dori
Yes, i get joint pain and in fact, it is worse than the gut pain at times. Right now, it is mostly my joints that are bothering me. Maybe I just have a high tolerance for the gut stuff, but the joints really impact all that I do.
Following a fairly strict diet of no sugar, no wheat/gluten, no dairy and it seems to help but takes a long time to reverse the symptoms.
Jul 20, 2009
Pain by: Heather
Yes I have noticed when Iam in a stressful situation and have a flare up, the next day I am sore and hurt like you wouldn't believe. Every muscle in my body hurts. I still go to the gym, but its tough when I am so tired and my body aches in pain.
Oct 09, 2008
pain by: Anonymous
Hi yes i get lots of hip pain. I have had a right hemictoclectomy. so only got part of my bowel. The doctors say the pain in my hip is a echo pain. im not to suer cause another doc said it could be siatica or a type of authritis caused by my crhones.
