My body is killing me, but tests are normal..... I think I've lost my mind! Help!

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Julie1014
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Date Joined Oct 2005
Total Posts : 1245
   Posted 10/14/2008 9:44 AM (GMT -7)   
I think I have officially gone crazy. sad   I just don't understand.  My body is killing me.  Every muscle in my body hurts, my back is killing me, my legs are so sore and weak.  My joints ache terribly.  Plus, fatigue and flu-like achiness.
 
My GI ordered a bunch of blood work.  CBC, sed rate, and ANA normal.
 
As much as I am glad that my blood work is normal, then what the heck is going on??!! eyes    I've never felt this bad before.  Even more confusing, my bowels are the best they've been in a long time.  about 2 weeks ago, I cut out all sugar and white from my diet, and am doing great bowel-wise.
 
My GI said it could be a Crohn's flare affecting my body.  Or, am I just losing my mind?  I am so frustrated right now......  I've been out of work for a week because I feel so awful.
 
Thanks for letting me vent.  I just don't know what else to do.......  I'm so frustrated and sad. cry
Diagnosed with Crohn's March 2006
Asacol 3 times a day, Remicade 8mg/kg every 6 weeks, Prednisone 10mg/day, (tapering Pred 1mg/month,) Miralax daily, Prevacid 30mg, Vit B12, Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 10/14/2008 9:54 AM (GMT -7)   
I feel the same way. Foggy, kind of dizzy, so weak, headache, back pain from top to bottom (literally), achy, tired, etc. This is common with CD. I am flaring too. I always get weak when I flare.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong


Celey
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Date Joined May 2007
Total Posts : 1284
   Posted 10/14/2008 10:07 AM (GMT -7)   
I think a lot of people suffer through this with Crohn's disease... I have the same problem, most effecting my joints...

Do you take prednisone? Prednisone could be causing the achiness...

Also, there's always the possibility you have fibromyalgia...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 10/14/2008 10:08 AM (GMT -7)   
Thanks Stephanie, for letting me know I'm not alone. I'm always so fixated on the bowels, that I never really realized how much CD can affect the rest of the body. I'm so sad today.......
Diagnosed with Crohn's March 2006
Asacol 3 times a day, Remicade 8mg/kg every 6 weeks, Prednisone 10mg/day, (tapering Pred 1mg/month,) Miralax daily, Prevacid 30mg, Vit B12, Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/14/2008 10:21 AM (GMT -7)   
Yes I would have to agree I think it is the crohns flare with extra-intestinal effects...
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 10/14/2008 10:25 AM (GMT -7)   
MMMNavy, thank you for the response. You're probably right. Blessings, Julie
Diagnosed with Crohn's March 2006
Asacol 3 times a day, Remicade 8mg/kg every 6 weeks, Prednisone 10mg/day, (tapering Pred 1mg/month,) Miralax daily, Prevacid 30mg, Vit B12, Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/14/2008 2:29 PM (GMT -7)   
Just wandering if it could have something to do with your pred. taper. Hope you find something out soon. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 10/14/2008 3:19 PM (GMT -7)   
This sounds like crohns to me, makes you feel like hell. Please know that you're not alone. (((hugs)))
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 10/14/2008 3:32 PM (GMT -7)   
Vicky, thank you so much for the reply. Sometimes just knowing you're not alone makes you feel better.:)

Gail, I've only tapered 2mg's in two months. (1mg/month.) My GI said it might be making things slightly worse, so I have to go back to 12mg's tomorrow. Thank you for the excellent suggestion. I just didn't feel like 2mg's in 2 months would cause this, but as we all know, anything goes with CD!

Blessings, Julie
Diagnosed with Crohn's March 2006
Asacol 3 times a day, Remicade 8mg/kg every 6 weeks, Prednisone 10mg/day, (tapering Pred 1mg/month,) Miralax daily, Prevacid 30mg, Vit B12, Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/14/2008 4:13 PM (GMT -7)   
Have you seen a Rheumatologist yet?


Forum Co-moderator - Crohn's Disease
...I will find a way, or make one. -Philip Sidney 1554-1586
Make sure your suffering has meaning...
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Post Edited (MMMNAVY) : 10/14/2008 5:46:55 PM (GMT-6)


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 10/14/2008 4:37 PM (GMT -7)   
MMMNAVY, no I never have. I wonder if that would be helpful? I guess it surely couldn't hurt. Thank you for the suggestion! Blessings, Julie
Diagnosed with Crohn's March 2006
Asacol 3 times a day, Remicade 8mg/kg every 6 weeks, Prednisone 10mg/day, (tapering Pred 1mg/month,) Miralax daily, Prevacid 30mg, Vit B12, Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 10/14/2008 5:03 PM (GMT -7)   
Sorry to hear you are feeling so bad Julie (((HUGS))).
I agree with everyone - a flare probably brought on by the pred taper - hope you start to feel better after upping the pred.
Jo

broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 10/14/2008 5:49 PM (GMT -7)   
GOD BLESS MY RHEMY and Warm moist heat! I know I'm not suppose to type in all caps but I could not make it through a single day without him. I also have fibromyalgia! Taking a warm bath and stretching helps and you may want to consider taking some glucosamine supplements for the joints. Takes about a month to kick in. As always check with your doctor first! ((Hugs))
Dx'd Jan'06, 1st Resection 7/06, Humira, Imuran, B12 injections, Nexium, Lexapro, Nulev, Glucosamine, Multi-Vitamin, Calcium Citrate, Ultracet. Secondary conditions: Psorasis, Osteoarthritis, Fibromyalgia, Lactose Intolerant, gallstones, kidney stones & peri-menopausal.


mkl11
Regular Member


Date Joined Jul 2007
Total Posts : 494
   Posted 10/14/2008 7:46 PM (GMT -7)   
I'm in a similar situation. My BMs are about as normal as they've ever been, and I'm on NO medicine for Crohn's, merely controlling with diet. I can make it through my day great until 6pm and then I hit a wall. Awful fatigue, soreness, flu-like symptoms--almost feel feverish. Thank goodness it is not all day, or I'd never get anything done or get to any of my classes.

Anyway, I do think it could be sign of a flare, as well as possibly fibromyalgia. Best of luck!
19, College Student, diagnosed June 2007. Remicade for 1 year, Now controlling disease with diet (wheat-free, low dairy, low sugar) and considering Humira. Had to scrap semester abroad plans due to disease, but doing well day to day.


tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 10/14/2008 11:44 PM (GMT -7)   
It is possible to have your crohn's manifest itself through other parts of your body, even though you may not be showing active disease intestinally. When I stopped remicade in March, I gradually started having joint pain and muscle ache that has become severe at times. I also started having bowel problems, but every scope, scan, and test showed no active disease or very little inflammation. My hands and joints began to swell and even my sciatica nerve became impinged due to arthritis and spinal stenosis. My G.I. and Primary Care both have come to the conclusion that I was on such a high dose of Remicade and other medications for so long, that all of this inflammation of the joints was being suppressed and is now starting to manifest itself. You mentioned that you are trying to go on a diet only strategy. While following a diet is a smart thing to do with this disease, I honestly feel that it takes a combination of diet, medication, and exercise to get this disease under control. It seems like a lot people on this board are able to obtain success for while with diet alone, but it eventually comes back and they either end up in surgery, the hospital, or worse shape than they were before. This is definitely not a knock on those trying this approach, but more of a call to maybe take a second look at this tactic. Diet alone is obviously not working for you, so why not try a different approach and see if adding a medication WITH your diet approach might help things.
One of the things that has helped me as a temporary solution was going on pregnisone for a while. I hate this medication and the side effects that come with it, but I found that the joint pain was able to subside some and it helped show my doctors that this was being caused by the disease. Later today, I am now set up to try cimzia. I have tried and failed just about every medication out there. Remicade was an incredible medication for me, but I developed antibodies. I tried the diet approach and it did show me some benefits in which I intend to use in addition to cimzia, but I have come to the conclusion that one bullet is not going to take this beast down.
Don't give up and keep a good attitude. Do you have health insurance? If you do not but are a student, most universities offer medical services or benefits as part of your tuition.

survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 10/15/2008 1:31 AM (GMT -7)   

Julie

Your signature said that you are on remicade. if that is correct, there is a possibility that you have developed drug induced lupus. Have you had an ANA test? That is a blood test and it measures antibodies that are elevated with this syndrome. I had the same type of symptoms, and all of my tests were normal. Finally, I woke up one day and my left leg was so weak that I could not bear weight. I went to the ER and had an MRI and some labs. Among the labs that were ordered was the ANA and it was sky high. I went to see a rheumatologist, and have been switched to Humira, and my symptoms are getting  better. This is a test that any of your MD's can order. You may want to check it out. A rheumatologist is a great idea as well- a lot of the immune disorders overlap. Best of luck.


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 10/15/2008 2:23 AM (GMT -7)   
Thanks to all of you who have replied. I appreciate it so much!:)

tsitodawg, I have been on many meds, and still take them. I only added a different diet approach to see if it helps. The list of meds I am on is in my signature line.  My Remicade dose was also decreased 6 weeks ago because my GI thought I might be developing Remicade antibodies, which I haven't.  Maybe the decrease in Remi also is reaking havoc??

survivor49, I had the ANA test which came back negative. Thank you for the suggestion, though!
 
I never thought of Fibromyalgia......
 
Blessings, Julie


Diagnosed with Crohn's March 2006
Asacol 3 times a day, Remicade 8mg/kg every 6 weeks, Prednisone 10mg/day, (tapering Pred 1mg/month,) Miralax daily, Prevacid 30mg, Vit B12, Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 

Post Edited (Julie1014) : 10/15/2008 3:29:26 AM (GMT-6)


tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 10/15/2008 4:00 PM (GMT -7)   
Julie,
I realized that you were still on medication after I had posted. Please forgive me, it was one of my loritab moments. I do agree with the remicade decrease possibly causing the aches. It has probably been holding back a lot of the joint pain and inflammation.

Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 10/15/2008 4:37 PM (GMT -7)   
Yes, maybe it's also the decrease in the Remicade. It's always a puzzle, isn't it??!!
Diagnosed with Crohn's March 2006
Asacol 3 times a day, Remicade 8mg/kg every 6 weeks, Prednisone 10mg/day, (tapering Pred 1mg/month,) Miralax daily, Prevacid 30mg, Vit B12, Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 

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