this joint pain just gets worse

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dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 8/26/2007 11:37 AM (GMT -7)   
Hi all,
 
My main issues with CD over the last 20yrs have been my joints.  I had emergency surgery this yr for my CD tho the ileum perforated, then had to have 2 more surgeries.  When the surgeon operated he noted there were no intestinal CD in me at that time.  I am still having D from the surgery I had C before.  My ankle started to swell a few weeks ago and I called my GI (I have only seen this one 2 times since after my hospital stay I wanted this doc being that he is a crohns specialist rather than a regular GI).  Due to that he wants me to see an RA which I am going to do...been too long since I saw one in this state so I start over as a new patient.  My PCP called 5 RA offices and the soonest I can get in is Sept 18. 
 
My knee and hip as well as other ankle are being affected now too.  I still have dilaudid and oxycontin left over from my sureres and they are not even touching the pain...I still felt the pain while I was on 50mcg/h of fentanyl too.  I have lost a great deal of range of motion in all the joints being bothered but the knee is the worst.  My nana's wake is tomorrow and funeral the day after ...I am in so much pain its awful.  I just called my pcp office and hoping he gives me pred or at least give me something and maybe see him in the morning. 
 
My GI called in entocort (my abdomen is still tender but only when pressure is on the area.  He told me try to hold off as long as you can before taking the entocort (I have been on this before).  I dont think that the entocort will help my joints though being that it is non systemic.
 
Help please
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 


Matthew
Veteran Member


Date Joined Oct 2004
Total Posts : 3932
   Posted 8/27/2007 5:10 PM (GMT -7)   
Do you have a good Rheumatologist or Pain specialist? In your shoes, I would. In fact I am in your shoes, as the arthritis is begining to flare. I just saw a Pain clinic physcian 10-11 days ago who picked up on this, though I wasn't there for joint pain at the time. Quite astute of him, unfortunately for me. Just had the MRI he ordered today, for my back. This was initially to find out if all my flank/back/shoulder pain was from the kidneystones. However, the man is quite well aware of CD complications so he may be a keeper..

Sincerely,
Matthew

mojowo4
Regular Member


Date Joined Jul 2007
Total Posts : 137
   Posted 8/27/2007 9:04 PM (GMT -7)   
I get the joint pain too in the ankles, knees and hips. My ankles swell badly and ROM it greatly reduced. Usually pred is the only thing for me that helps and it usually helps very quickly 2-3 days when I start it. Trying to get in to see an RA doc but waiting lists are long so going to get a referral when I see my GI in october (made that appointment in july and it was the soonest!!)
Dx 2003 but probably had it 10 years prior
GB out '95, Appendix out '96, Kidney stent '02/stone removal '02, Resection '04, fistulectomy '06 2x, tubal '05
Currently on 100mg 6mp and Remicade every 8 weeks, Ambien as needed, preds as needed


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 8/28/2007 8:01 AM (GMT -7)   

dragonfly137927,

When I was on Pred my joints were better. I am on Entocort now and still have some bad back pain and hands so it does not help at all with my joint pain. I have arthritis in my back.

I am wondering if a Pain specialist is in order for both of us.

Anyone know if I need a referral or do most of you find one on your own? My Rehumy won't prescribe me anything and some days I am really hurting.

Karen

 


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On Azathioprine (generic Imuran), Pentasa, & ENTOCORT

Diagnosed w/  Fibromyalgia May 2007 also on Cyclobenzaprine (generic of Flexeril)

Also taking Multivitamins, B Vitamis, Biotin, and Extra Folic Acid. (might add more when I do more research)


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 8/28/2007 10:19 AM (GMT -7)   
Karen, I can't be sure, but I think you need a referral. I would ask your GP to do that, not you're rhuematologist.
According to many of the posts I read here, a pain doc, is more likely to prescribe pain meds, if needed. Good luck.
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/28/2007 10:36 AM (GMT -7)   
You usually need a referral to a pain management doc.  Have either of you tried to contact your family docs to see if they would prescribe something for the pain?  That's where I always have to get my pain meds.  Just a thought!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 8/28/2007 10:50 AM (GMT -7)   
thanks Nanners and Vicky! I have not seen my Family doc much since we moved here 2 1/2 years ago. I guess I felt funny calling him for a rx. I might make an apt with him soon and see what he says. he might be more sympathetic. he is in the same practice so my Rheumy would see the pain meds on my electronic chart though :)
Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On Azathioprine (generic Imuran), Pentasa, & ENTOCORT

Diagnosed w/  Fibromyalgia May 2007 also on Cyclobenzaprine (generic of Flexeril)

Also have Arthritis, waiting on a EMG nerve test right now...


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 8/28/2007 12:54 PM (GMT -7)   
Karen, if you feel funny having your drugs on your chart, then ask your family doc for a referral, your fibro is reason enough to
see a pain doc. Then whatever goes on between you & the pain clinic is confidential, unless the meds are needed to be known by
who ever else is treating you. I don't see the problem of having pain meds, and that should be the way pain management sees it.
Vicky

Too many years with CD
Two bowel resections, several obstructions.


Laughter is the brush that sweeps the cobwebs from our hearts


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 8/28/2007 1:05 PM (GMT -7)   
I ended up calling my PCP on his cell (yup we have his personal cell #). I asked him for the medrol dose pack (the 6 days of tapering pred). I just needed to get through today since my nana's wake was yesterday and the funeral was today. The night I started the pred I was doing much better. It isnt 100% but at least the pain I have now is tolerable. His office called 5 RA drs for me and the soonest I can get in with one is Sept 18. My joints got so bad sunday that I had to even hold onto the toilet seat to sit and to get up. I use to have an RA out here (went to 2 diff ones hated 1 of them beyond belief so I was willing to see anyone in my state (RI is very tiny and I live on the MA border) it had been so long since I had seen one out here that I was considered a new patient. Even if my joints act up again prior to the appt I will be in pain but hopefully wont have to deal with another family death (4 in 4 months so far...one was actually 1 week exactly to my nanas death). I also have another Uncle in ICU who isnt responding well to Tx of his illness. He is in his 80s We have a very large family on my papas side he is 1 of 8 and most all of his sublings had more than 1 child (the one in ICU has 9 children...all maried with lots of grandkids). We wear name tags at our family Chrismas party since there are so many.
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 8/28/2007 1:27 PM (GMT -7)   
Vicky, thanks so much! I will see a pain Doc as soon as I can. I just thought my Rheumy might get upset with me but I should not be worrying about that. I guess I think people are going to think I am an addict or something. I just want to feel better.
today has been pretty bad. For some reason my joints have been hurting more lately. I swear it is the weather :)

Dragonfly,
I am glad you got the pred! too bad the first Rehumy apt is so far away. I have an apt with a neuro for a EMG nerve test on Sept 27th and that was his first opening. I am not happy about waiting that long cause it is a test I need to help my reuhmy treat me.

I wish there were more of these doctors we need around!!

Karen

 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On Azathioprine (generic Imuran), Pentasa, & ENTOCORT

Diagnosed w/  Fibromyalgia May 2007 also on Cyclobenzaprine (generic of Flexeril)

Also have Arthritis, waiting on a EMG nerve test right now...


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 8/28/2007 2:01 PM (GMT -7)   
My GI wants me to see a Rheumy before placing me back on remicade or trying Humira. This GI that I see now is new to me so he had old recordxs but I am sure not in depth as he would like. I had 3 volumes at my last GI not including my Ped GI or from my GI when I was in California.
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 

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