Restless legs - anyone else get them ?

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Regular Member

Date Joined Apr 2010
Total Posts : 76
   Posted 5/24/2010 8:52 AM (GMT -7)   
For the last week or so I have been tormented by restless legs in the evenings and in bed to point where I can't sleep.  Not sure if this is connected in anyway to the Crohns or medication or just something else to put up with.  I am taking Pred (since Nov) and Methotrexate (since Jan), waiting to start Remicade.  Ideas anyone ? eyes    

Regular Member

Date Joined Jul 2008
Total Posts : 384
   Posted 5/24/2010 9:28 AM (GMT -7)   

I get them too. It used to happen on and off, but over the last 6 months it has gotten progressively worse until now I deal with it every night. I had read on here that sometimes low Magnesium can cause this and when I had my resection they kept me a couple days longer to give me Magnesium through my IV because I consistently had low levels. I take a supplement every day but it doesn't help with the restless legs. I get this tickly, tingly feeling up and down my legs and can't sleep.


Dx'd w/ Crohn's in 1979 at age 13. Bad flare 2008 but no health insurance so I dealt with it. Colonoscopy in July 2009 caused a perforated colon, emergency bowel resection. 2 fistula's, perianal and perivaginal.

Humira, probiotic, a multivitamin, calcium, magnesium, zinc, and fish oil. I also take Tramadol 50 mg and Klonopin (for anxiety) as needed.

Life may not be the party we hoped for, but while we are here we might as well dance!

Regular Member

Date Joined Mar 2009
Total Posts : 318
   Posted 5/24/2010 10:11 AM (GMT -7)   
I"m the total opposite my legs just won't stop moving i tell my brain 2 stop my legs cause it drives u crazy they just won't the only thing I can suggest is trying a hot bath it seems 2 settle mine enough so I can get some rest and I also take a few sleeping pills as well,but after my legs r numb from the hot bath water I wrap a towel around me and jump in bed with my electric blanket on and get some rest I hope this helps u as well...Jen ONTHECAN...

Post Edited By Moderator (Nanners) : 5/25/2010 6:52:02 AM (GMT-6)

Veteran Member

Date Joined Nov 2005
Total Posts : 1340
   Posted 5/24/2010 10:37 AM (GMT -7)   
I get it from meds-- usually benadryl or Tylenol pm.
Mom to a healthy Pentasa baby and pregnant with #2. 5+ years remission, woo hoo!

Regular Member

Date Joined Feb 2007
Total Posts : 430
   Posted 5/24/2010 11:40 AM (GMT -7)   
You're going to think I'm crazy but this works: put a bar of soap (like Zest) under your fitted sheet down by your legs. It's the only thing that works for me. Try it for a week and then post the results. My brother past the idea along to me and it's given me relief.

Ne Ne
Regular Member

Date Joined Apr 2008
Total Posts : 243
   Posted 5/24/2010 1:19 PM (GMT -7)   
Is it part of the crohn's or a side effect cause I get it I thought I was going a little more crazy cause my legs are always moving. And they hurt to.

Dawn turn yeah
49 Female
Dx June 07 Crohn's take asacol 2x3 a day ,lotrel for HBP , omeprezole for stomach , potassium , calcium & Vit D , lomotil for lose stools , tramadol for pain , started humira in Feb 08 on 1 shot a week, vit-B 12 shots , crestor,off crestor,now pravastatin, pristiq, abilify,
Dx Bipolar May 08

Regular Member

Date Joined Jan 2010
Total Posts : 193
   Posted 5/24/2010 1:24 PM (GMT -7)   
Does your doc check your calcium intake and levels. Mine was low so I take calcium magnesium chewables and my leg cramps disappeared. I'm not sure if that also causes restless legs. It is worth checking out.
Age 58, Crohn's since age 21
3 bowel resections, 1980,88,95
1 fistula repair, 2005
digestive enzymes

Regular Member

Date Joined Apr 2010
Total Posts : 76
   Posted 5/25/2010 5:49 AM (GMT -7)   
Thanks all, i was beginning to think I was going mad ! I do take calcichew cos of the Pred but have since read since my first post that lack of iron and or B12 can cause it. I am due a blood test soon so hopefully something will show - this has only been happening recently. don't we have enough to put up with !

Regular Member

Date Joined Mar 2008
Total Posts : 382
   Posted 5/25/2010 7:36 AM (GMT -7)   
I do get restless legs occasionally. I did ask at my last GI appointment but was talking to an assistant of his prior to my GI. He said if you were low on magnesium you would have a lot more problems than restless legs. He did say it could be a shortage of iron.

58 yr. old F dx. CD 07/07
Started weekly methotrexate injections 09/22/08.
Lap assisted sigmoidoscopy done May 11/2009

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 5/25/2010 9:47 AM (GMT -7)   
I get restless/sore legs (hamstrings) when my iron levels get too low. this is my 4th time when it's happened, the past three have cleared/stopped with iron infusions or a blood transfusion. i suspect that I will be starting the iron infusions once again in a week or so. Can't wait to get rid of this leg issue... Good luck figuring yours out!
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09

Veteran Member

Date Joined Mar 2005
Total Posts : 1289
   Posted 5/29/2010 9:22 AM (GMT -7)   
horrible horrible feeling! i get it at times so badly that i can't stop squiring...keeps me up for hours- usually try to take a xanax to help fall asleep. can't tie it to anything specific though- although i did happen during my 2nd remicade infusion as well...
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.

Regular Member

Date Joined Nov 2008
Total Posts : 392
   Posted 5/29/2010 10:47 AM (GMT -7)   
I had restless legs more than 3 years ago when I was anemic. Crohns disease also often leads to leg cramps. Being short of calcium/magnesium is the reason. /Bee

Regular Member

Date Joined Feb 2009
Total Posts : 269
   Posted 5/29/2010 2:11 PM (GMT -7)   
I have a friend that has pernacious anemia. She has B12 shots for this. She had restless legs at night. Many people with crohns need B12 shots ( me included)
Diagnosed 2005.  41 year old female living in UK
Current medication  -  infliximab infusions, ranitidine, Vitamin B12 injections, anti depressants

Veteran Member

Date Joined Mar 2005
Total Posts : 1289
   Posted 5/29/2010 3:35 PM (GMT -7)   
yes- leg cramps also!!!! i am dealing with them nightly right now!!!!
35 year old male living in AZ.  Diagnosed with Crohns at age of 15.
Currently off Pred.  still taking Asacol.  Just had 1st Remicade infusion a week and a half ago
In the middle of a bad flare now for a year...lost almost 30 lbs. -- gained most of it back now.

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