Doubting Diagnosis, Looking for better answers

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New Member

Date Joined Jul 2009
Total Posts : 5
   Posted 7/14/2009 12:15 PM (GMT -7)   
     In 2004 I began experiancing INTENSE pains in the joints on the right side of my body. The pains worsen after running, long periods of standing, no activity, and stress. I also started getting bumps on the front of my right shin after running or walking at a steady pace for any more than 10 minutes. These pains would keep me up at night making it impossible to sleep. I also would become very tired, walk funny, or sit in such a way to put most of my weight on the left side. Referred pain in my arm also led to weakness on really bad days. After numerous tests, x-rays, MRIs, and psych eval. they determined that my pain is real, but that they don't know what it is. Back then they also ruled out a ruemetiod factor, MS, depression, pinched nerve, and a few other random things. I have been on all types of pain killers but end up requesting to stay off them and "self medicate" through stretching and relaxation techniques. The meds just made me feel drugged, but still with the aches in my leg. In 2007, they chalked it up to Fibromyagia. After doing research on the disease, I do not feel I fit almost any of the symtoms. My pain is not muscular... it is deep within the hip and knee and sort of "radiates" between the two joints.
     Fast forward to November 2008, I had experienced abdomen pain in the lower right quadrent for almost a week. Finally after going to immediate care, I was sent to have tests done. They thought it was probably apendisitis. Tests concluded it was my intestines. Soon after, a colonoscopy and gastro specialist determined I had Crohn's Disease. At first I was happy just to have an answer to medical problem. But after doing tons of research, I question the diagnosis. I have not experianced any weight loss, in fact I had gained 15 lbs over six months. I have also not had any diarrhea. All bowel movements were and have been normal and healthy. The stomach pain went away after just a couple weeks. After doing about 3 months of entecort, then switching to pentasa, I still feel fine. In April, the specialist said to stay on pentasa, but that it is okay to go ahead and try to concieve. (my husband and I were anxiously awaiting the green light). Now that I am 16 weeks pregnant, I have stopped the Pentasa because I want to be able to breastfeed safely when the time comes. It has been about 6 weeks since the last time I took pentasa and I feel better than ever. EXCEPT, since stopping, I have noticed a distinct link between the Pentasa and the right leg pain. It seems to be the only med that has been able to reach my leg pain. On the other hand, I don't feel right taking it for Crohn's disease if I do not need it.
     I have brought all of this info to my primary doctor (a different one than I started with). He said my symptoms do not match fibromyalgia at all, and to be diagnosed with crohn's disease with almost no sympotoms then or now raises a flag. He is looking into my history with all the various specialists, but I do not have an appointment with him for another 4 months or so. I am worried because I want to be as healthy as possible throughout this pregnancy but I am unsure if that means staying on meds or not. So far my pregnancy has been going fine, and the baby is healthy.
Does this sound like Fibromyalgia to anyone? Does anyone have any insight or leads on a correct/ accurate diagnosis. I am not sure where to go!  confused

Regular Member

Date Joined Jun 2009
Total Posts : 222
   Posted 7/14/2009 1:20 PM (GMT -7)   
can you get a second opinion, i can't say whether it's fibro or not. Have you checked out the links in fibromyalgia 101. Also i have known people who's fibro completely subsided when they were pregnant. Your symptoms may be different now and a different diagnosis may not be established. Maybe the shin pain was shin splints, were you a sports person.
I get deep joint pain, but i also have arthritis.
I hope you get some help, i wish you a happy and healthy pregnancy.
I'm nearly 2 years trying to concieve so know the frustration in waitnig.
take care,
BikeBoo, biking with my boo since 1999
Of all the things i've lost, i miss my mind the most! But it has its advantages!
Fibro, spinal arthritis and all that goes with it.

Veteran Member

Date Joined Apr 2008
Total Posts : 1522
   Posted 7/14/2009 10:27 PM (GMT -7)   
Did the specialist take any biopsies to confirm Crohn's or did he just look around? I'm a firm believer in 2nd, 3rd, even 4th opinions. You can have Crohn's and gain weight but I would want to make sure the diagnosis is correct before taking the meds for it.

Fibro is what you are diagnosed with after they've ruled out everything else. The pain in my right side and right leg is caused by endometriosis. I tend to tilt to the left when I walk because of the pain. They kept thinking I had appendicitis but since I no longer have an appendix but I still have the pain, they had to find another answer. My pain radiates down into my leg and up into my ribs. It's a different pain from my fibro pain.

Good luck and enjoy your pregnancy!
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