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3 Weeks of Pain?

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Posted 7/20/2012 11:25 AM (GMT 0)
Stereo,

I am sorry you are still struggling with the issue of severe and diffuse and traveling pains.

Sounds much like the fibromyalgia I've had for years... which has the involvment of nerves, connective tissue, but not so much actual joints.

Have you looked into fibromyalgia?

Posted 7/20/2012 12:16 PM (GMT 0)

Kazbern said...
You need to treat the bowel inflammation more aggressively to get the joint pain under control.


I agree with Kaz. During my last flare I suffered crippling arthritis pain. I could barely climb stairs or make a fist. I was surprised that sometimes the pain would jump from primarily my right wrist to my left wrist, and then back again. Same with my left and right knee.

During my flare I was worried about much more serious problems like uncontrollably losing 5 pounds a week. My blood counts were so bad that I was referred to an oncologist to check for lymphoma. So I was more worried about ending my flare than about arthritis.

But when my flare ended, (by using antibiotics but that is another story), all my arthritis disappeared. So I agree with Kaz about treating your bowel inflammation more aggressively to control your joint pain.

Serenity might have a point about Asacol. I am also allergic to mesalamines. But I knew 5-ASAs are bad for me and never used them during my flare.
Posted 7/20/2012 1:42 PM (GMT 0)
It's all worth looking into, thanks. =/ I'll look into fibromyalgia a bit more, maybe contact an office in the area and try to squeeze in an appointment.

But, I guess I wouldn't consider myself flaring exactly. Maybe I should? I have no stomach pains/bad nausea at the moment, I have 1-2 semi-normal BMs a day, usually just one now since my new diet and supplements. I guess I should ask what constitutes a full fledged flare (in my case) ?
Posted 7/20/2012 1:44 PM (GMT 0)

BabeintheWoods said...


Serenity might have a point about Asacol. I am also allergic to mesalamines. But I knew 5-ASAs are bad for me and never used them during my flare.

The plan is to follow this strict diet + supplements until september, and then wean myself off asacol, 1 pill at a time.
Posted 7/20/2012 2:20 PM (GMT 0)
Well, you might not feel like you're flaring, and still have inflammation in the bowel. It is confusing to me, too. Recall that I posted that my primary complaint was joint pain. At the time that I had my worst bout of joint pain, the time that led me finally to see a rheumy and the time that I ended up on 3 months of pred, my only bowel symptoms were soft stools a couple of times a day. I had no blood. I was probably using enemas at that point a couple times a week. I was taking an insufficient amount of Pentasa. My rheumatologist looked me straight in the eye and asked me how my quality of life was. Honestly, it was not good. So he promised me that by getting aggressive towards the Crohn's my joints would get better. And they did.

Stereo, you are focused on solving your problems through diet and supplements and you are ignoring the other very helpful tools at your disposal. The mesalamine meds you are taking in a half-assed way.

I worry about you, Stereo. You are following a path like a lot of us, one that is mostly denial and the other part wishful thinking. I fear that if you do wean yourself off Asacol like you plan, then you will end up with all-over joint pain and you'll have to get back on pred to get it under control. I KNOW you don't want that.
Posted 7/21/2012 12:27 AM (GMT 0)
I understand what you are saying, but I live my life a little differently, and don't fully depend on supplements, diet or drugs alone to heal me. To me, getting in touch with myself spiritually to minimize stress and that 'low quality of life' appeal, is what restores my faith in getting better, and I have over time already.

In college, I was 'under the influence' by substances a lot, and have come to realize that I didn't want that life. Once I got rid of these substances, I had to force myself to get in the habit of introducing my body to unnatural substances once again (because of crohns). I don't like drugs, the emotional side effects out weigh their anti-inflammatory benefits any day, for me.

I'm not opposed to looking into other meds once off asacol though, I admit I need something for down under. I do appreciate the suggestions, so please know that much. Today was alot better. I can actually scrub shampoo all over my head with this hand.
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