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Back/leg/hip nerve? pain

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Posted 2/26/2010 4:26 PM (GMT 0)
Hi All,

I have sacroiliac dysfunction.  Definitely CD-related.  It manifests as a sort of nerve pain, starting in my right hip.  It comes and goes, some days worse than others.  Today my entire right leg is weak and I was just walking from the kitchen to my office and I had to stop because I couldn't put weight on my leg.  I waited a few minutes then was able to hobble back to my desk.  The pain is also in my knee today and if I twist the leg at all (which you do a surprising number of times per day without even thinking about it), I get a shooting pain and instant weakness in that leg.

So - my question.  What on earth can be done about this?  I used to go to a chiropractor (pre-CD-diagnosis) but that didn't do much/any good.  Tylenol doesn't touch it.  I once went to physical therapy for 6 weeks (when I was pregnant it was about this bad), and that maybe helped, maybe not - so many hormones it's hard to tell.

Should I be asking the doc to refer me to physical therapy again?  Should I be asking for better pain killers?  Any ideas?  This is very painful and inconvenient.  I have only mild CD symptoms right now.  I also have the problem where I can't sleep for more than 6 hours because it hurts to lay down, but that's a different SI pain, I can handle that mostly.  This nerve pain is horrible though.

Thanks

Posted 2/26/2010 4:37 PM (GMT 0)
I had sacroiliitis badly on my left side and a little on my right. The inflammation also spread down the tendons in my leg and up my back and any movement was cause shooting pain - sneezing was the worst! It jolts your whole body! Painkillers wouldn't touch it all, eventually I had a steroid shot straight into the hip and I swam every day. Swimming was amazing for it, I know exercise is the last thing you will feel like doing but just being in the water takes all the pressure off the joint - pretty much instant pain relief, the only time I wasn't in pain was when I was in water in fact I'd go more than once a day at times when the pain was bad. Swimming then allows you to move the joint around without it being as painful, this helps disperse trapped fluid and strengthen the joint. My doctors were amazed at how quickly I recovered as they expected from my MRI scans for me to end up in a wheelchair or at the very least walking aids. I still swim regularly now as damp gets to the joint in winter and thankfully it hasn't flared properly in years!
Posted 2/26/2010 5:42 PM (GMT 0)
My right SI joint bothers me, and sometimes I have pain in my leg that feels like when you're sick and have body aches. It's usually after I do something strenuous. My PCP prescribed flexeril, and I take it at night after I've had a physical day. Pulling weeds really does me in...the bending and all...so the evening after I've pulled weeds or done yardwork, I take a flexeril and the next day my back doesn't bother me. My body might be a bit sore, but nothing like it would be!
Posted 2/26/2010 8:17 PM (GMT 0)
I had a disc bulge and kill the nerve that runs through my whole left leg. I know that"my leg is not there for me" feeling. To this day, I still have no feeling in a large part of my left leg.
PT did wonders for me. I could not ride the bike as it hurt me more, but the stretching was great. i miss PT! Now I am just starting some home yoga that also seems to help. Finally, any core body strengthening you can do will help to relieve some of the work your legs do daily. That is my next big issue (OK my belly is kind of big now...but not what I meant!)
The swimming idea is what I really want to get into. I swam on vacation and it felt wonderful.
Posted 2/27/2010 1:52 AM (GMT 0)
I have never heard of this condition, but I have been having similar pain. My GI told me it was probably nerve damage from being on Cipro for more than a year. She took me off of the Cipro because of the pain. I also have nerve pain under  my left rib and in my left finger tips. My leg and hip pain are on the right side. I have found doing beginners yoga stretches has helped the pain a lot. It always aches, but more bearable when I do yoga regularly. The pain was so bad I thought I had perforated my intestines again. The pain radiated from my hip, to my pelvic area and down to my knee. Swimming does sound like excellent therapy for this type of pain. I will have to find me an indoor pool.
Posted 2/27/2010 2:24 AM (GMT 0)
Have you had any scans done to see exactly what's going on? One thing that my doctor mentioned to me because he was concerned about me was an abscess going back into that area, which can cause a lot of pain while walking, especially down stairs. I'm probably completely off base because I don't have any back or joint pains.
Posted 2/27/2010 2:24 AM (GMT 0)
I know that feeling! It hurts so bad--I had to start sleeping w/a pillow under/between my knees at night otherwise I wouldn't be able to move out of bed! I was told to go to a pediatrist by my GP--he believed that my right leg is longer than the left by about 9mm... So I went and sure enough, it was! ... so I got insoles for my shoes and I am no longer afraid to walk-never knowing if that was going to be the step that paralyzes me. I still have to sleep w/a pillow under my knees at night.. and sometimes get that pain, but it is NOTHING like it used to be...AND a trip to my chiropractor pretty much takes care of the small amount of pain I do get thru the week. Before, the chiropractor wasn't doing anything cuz my hips were ALWAYS out of alignment..but at least now they have a fighting chance with the insoles. Again I still get the pain but it's so mild and it doesn't last.

I pray you find relief!! That kind of pain only seems to get worse. Definitely go to a pediatrist--and try to get recommendations from ppl in your area who actually FELT better. Sometimes you can get a bad one who doesn't help much. :D
Posted 2/27/2010 11:51 PM (GMT 0)
Holy Cow!

I've been dealing with this for about four weeks now, and was at my wits end as to what this might be.  All my doctors are baffled, and interested in other things.  The pain can become so intense and tight.  Walking actually seems to help a little, but I think I'm going to try the swimming thing at our local YMCA.  And yeah, my pain killers are barely touching the pain.  Sometimes it's easier to walk, sometimes it feels better to sit down, it just depends.  We'll see. 

Posted 2/28/2010 12:39 AM (GMT 0)
Wow! My GI and internist do not believe this has anything to do with my Crohn's but I am having very similar symptoms. I have been in PT but it seems to be making it worse. Does anyone think an MRI gives information that helps anything? My left leg, esp my left foot gets intermittently numb, I have the muscle aches, and I sometimes get shooting burning groin pain. I'm thought it is lower back issues, but now I'm wondering if it is auto-immune related??
Posted 2/28/2010 1:39 PM (GMT 0)
I believe its something along the lines of 30% of people with Crohn's get a form of arthritis with it and that can be with pretty much any joint. I had an MRI scan but that was just to 100% confirm diagnosis and check to see if any permanent damage was being done - fortunately the form of arthritis I have isn't rheumatoid but Crohn's/reactive arthritis and the good thing with that is it doesn't cause long term damage or changes to the joint like rheumatoid can. I can remember my doctor saying that the inflammation and fluid in the area can 'squeeze' the tendons and nerves causing issues with these but that these problems would clear up once the inflammation and fluid settles. I think thats why the swimming would help so much as it means you can movely less painfully and actually get some of the fluid dispersed through movement.
Posted 3/1/2010 11:07 PM (GMT 0)

Gumby44 said...
My left leg, esp my left foot gets intermittently numb, I have the muscle aches, and I sometimes get shooting burning groin pain. I'm thought it is lower back issues, but now I'm wondering if it is auto-immune related??

idea Peripheral neuropathy ?

Post Edited (snohare) : 3/1/2010 4:10:49 PM (GMT-7)

Posted 3/1/2010 11:18 PM (GMT 0)
I suffer from sacroilitis in the lower back and sometimes I can hardly get out of bed because its so sore! Didn't realise that so many of us crohnies get sacroilitis, I put it down to my job (care assistant) and old age!! lol I spent months going to physio, and I was off work for 3 weeks at one stage, it did seem to ease abit with the physio but a month down the line and I'm back to all the stiffness etc. and get it in my legs now too.I have noticed though that while \ I've been flaring and on the preds that it's not as bad, obviously because it reduces the inflammation.
Posted 3/1/2010 11:57 PM (GMT 0)
I have had the same things as my Crohn's got worse and worse. Swimming helped immensely. Another thing that helped was Pilates classes with a really knowledgeable teacher. Using muscles properly can keep blood flow going and help joints from locking up.

Hope you find some relief soon.
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