Restless Legs with the crohns?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Regular Member

Date Joined Jan 2008
Total Posts : 67
   Posted 6/11/2008 10:01 AM (GMT -7)   
 I have crohns and am on 40mg pred and remicade every 6 weeks. A few days ago I started get restless legs at night. Last night was real bad it was in my knees and my arms. When I got up this morning every joint in my body ached....I can't stand it. I was wondering if anyone else has had any of this? Thanks to all

Veteran Member

Date Joined May 2005
Total Posts : 511
   Posted 6/11/2008 10:03 AM (GMT -7)   
I'm on 40mg of pred and not having that problem. But everyone reacts differently. I am having trouble falling sleep.
And look out if I have to wake in the middle of the night because then I'm out for hours on end before I go back
to sleep. :-(
Living with Crohn's Disease since Jan./2000
But still trying to figure out if I truely have it.
(This is such a confusing disease)
Meds I have tried:  Just about everything 
Meds currently on:  Prednisone 40mg

Lady G
Regular Member

Date Joined Sep 2006
Total Posts : 321
   Posted 6/11/2008 10:26 AM (GMT -7)   
I get that naturally once in awhile, can't say it was from the meds, but to me it does happen randomly...I just either try adn walk it off and go back to bed, or have my hubby massage my legs (what an excuse eh?) or have a hot bath....anything to try and relax the muscles again. Hopefully others might have more advice too to help.
27 year old, married. Diagnosed with Crohns at 17, suspected of having for at least a year or so before that.  Alot of Crohns in my family history.  No surgeries yet. Imuran treatment with Prednisone tapering at moment.  Possible Fistula.

Regular Member

Date Joined Feb 2008
Total Posts : 298
   Posted 6/11/2008 10:43 AM (GMT -7)   
I have only gotten restless legs during my Remicade infusions. I was able to stop it by exercising right before I go in to get my is crazy frustrating! I hope you feel better soon =-)~

Veteran Member

Date Joined Feb 2004
Total Posts : 732
   Posted 6/11/2008 11:21 AM (GMT -7)   
I have had it for years ... I am on 2mg of requip .. every night ...and it has been a lifesaver ..I would not want to ever be with out it ...

so talk to your doc if it gets unbearable ...

I dealt with it for years before treatment became available ..and was tortured every night !

Hope it was just a bad night for you ..and not long term

Dx with Crohns 25 years ago
1 surgery ; 16 years ago ... 
Cervical DDD and restless leg syndrome
Currently on ;  Requip ,  cymbalta, dIovan HCT, tramazone,
Remicade, FML (eyes ; steroid ) , Restasis (eyes)   

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 6/11/2008 11:55 AM (GMT -7)   
I get something like that when I am bleeding a lot for a long time. I've equated it with my anemic times. And, I've also read that RL can sometimes be associated with low iron. My doc just put me on iron supplements and my legs are normal again.
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08, started Xifanan 5/24/08 
--single mom to 10-yr-old girl

Veteran Member

Date Joined Mar 2006
Total Posts : 1034
   Posted 6/11/2008 5:38 PM (GMT -7)   
i had this and it turned out i was anemic (basically low iron and b-12). got a blood transfusion, took lots of iron pills, ate red meat and spinach and that fixed things.

i suggest having your hemoglobin and b-12 levels tested. simple test with no more than a week turn around if you dont go to an oncologist (they normally have the labs in their offices).
Crazy Harry

Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07

Robert P
Regular Member

Date Joined Apr 2005
Total Posts : 127
   Posted 6/11/2008 8:27 PM (GMT -7)   
Had a sleep study done about a year ago and they stated that I do move my legs a little more than normal and that this contributes to a less restful sleep. The only recommendation they made was some exercises/stretches.

Started back to the gym a couple months ago and I'm so physically exerted that I'm having no problem falling asleep or staying asleep.

Before that my wife and I found that the following products helped and all you have to do is open the jar and leave it by your bedside at night, how cool/easy is that....

Lavender & Ylang


The Ylang is perfect for keeping at my desk at work as well. It's anti-stress properties really are nice not to mention it smells good. I now have co-workers come by just to hand out and enjoy the fragrance and de-stress. Funny, huh.

Dx Crohn's 1999; Drug Free for me, thanks to Jini!

"Coming together is a beginning.
Keeping together is progress.
Working together is success."
- John C. Maxwell

Veteran Member

Date Joined Mar 2007
Total Posts : 900
   Posted 6/12/2008 3:05 AM (GMT -7)   
I have had RLS for years . I don't know if there is a connection to CD but both seem to have started at about the same time.
I've only recently started taking clonazepam at night. It doesn;t stop my legs (and arms) from jerking around, but helps me sleep(relatively)through it. I still wake up exhausted every morning.
51 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.,RLS, arthritis

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 16, 2017 2:24 AM (GMT -7)
There are a total of 2,906,031 posts in 318,913 threads.
View Active Threads

Who's Online
This forum has 158257 registered members. Please welcome our newest member, hfttfhtfdsa1.
212 Guest(s), 1 Registered Member(s) are currently online.  Details