Cronic pain since 2004... They don't know why?!

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New Member

Date Joined Jul 2009
Total Posts : 5
   Posted 7/14/2009 2:33 PM (GMT -6)   
I have also posted this in Crohn's disease and Fibromyalgia.
     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.
The leg pain has been going on for about 5 years now. I've developed associated anxiety because of it. Between this and the crohn's disease diagnosis, I am not sure what to believe or where to turn to get answers. Does anyone have any insight or leads on a correct/ accurate diagnosis. I am not sure where to go!  confused

Veteran Member

Date Joined Jul 2009
Total Posts : 2042
   Posted 7/14/2009 3:45 PM (GMT -6)   
The problem with illnesses is that there are so many that share symptoms, not to mention being so many to begin with.

Only thing I can really suggest to you at this point is to start keeping a diary of what you do, eat, drink, what makes the pain better or worse, how long the flair ups last, how long and how well you sleep, any and all illnesses (even if you think it is just morning sickness), etc. Having a good record of exactly what is going on with you may give your doctor(s) more clues as to what the problem or problems are.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.

Forum Moderator

Date Joined Feb 2003
Total Posts : 16409
   Posted 7/14/2009 5:42 PM (GMT -6)   
Hi Chicky, I wish I had some asnwers for you, but I am stumped as well. But, I do have crohns disease and I am familiar with the medications including Pentasa. I can safely say there is no correlation between the leg pain and the Pentasa. It would have absolutely no bearing on your leg pain returning. The type of medicatipn it is will only affect the intestines, nothing skeletal. I hope you can get some asnwers somewhere soon. Congrats on being pg.
Moderator Chronic Pain
crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Swveral other health issues just not enough roo to list it all. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.

New Member

Date Joined Jul 2009
Total Posts : 5
   Posted 7/14/2009 6:08 PM (GMT -6)   
Thank you both for the advice. I think I will go ahead and start keeping a journal of my pain and ailments. Susie, Thanks for the insight on Pentasa. I guess I am just hoping for 1 explaination that would be able to cure it all. I appriciate the clarification!

Veteran Member

Date Joined Apr 2009
Total Posts : 536
   Posted 7/14/2009 9:26 PM (GMT -6)   
Chicky, I want to welcome you here to our forum. I hope that you will stick around for a while or for however long you want to. We always welcome new members here. I want to congradulate you on your pregnancy. I wish you a happy and safe pregnancy. Babies tend to rock your world for a little while, but it is the most beautiful feeling to cradle that sleeping baby and hold him/her while he/she sleeps. It is a feeling like no other. Enjoy it!!!

Now, I don't have any idea what you could be dealing with-diagnosis wise. We aren't doctors and really can't say one way or another. I can understand how frusterating it could be to be dealing with something for so long and not know what the cause is from. It does sound like your doctor is interested in helping you to find out the cause. He may decide to wait until after your delivery before determining what could be going on. I do think keeping up with everything as Jim suggested would be a good idea. It may seem insignificant to you, but to a doctor it may mean a world of difference. Documentation is the way to go.

Good luck to you. I hope you are able to find the answers you are looking for soon. Hang in there,girl. You'll make it. Keep us posted, if you'd like to how you are doing. I will be thinking about you.

Regular Member

Date Joined Jul 2005
Total Posts : 229
   Posted 7/14/2009 9:50 PM (GMT -6)   
Hi Chicky,
Welcome! My best advice to you is to go to Mayo Clinic. There is one in Rochester ,MN and Jacksonville , Fl. There might be another one but I'm not sure. If they can't diagnose it nobody can. I have been to so many doctors over the last 30 yrs. that I can't even remember who they are if I had to name them. I had symptoms of Fibromyalgia and Lupus since I was 20 yrs. old.....I'm now 53. I went to the Mayo Clinic in Jacksonville because my parents lived near Daytona Beach. I saw 4 doctors, had 14 tubes of blood drawn and was FINALLY diag. with with Fibromyalgia, Lupus and Sjogren's Disease. The people there are so wonderful from the doctors and nurses to the volunteers. It was the most amazing place and I wish I lived closer because I would go there all of the time. If you call and get an appt. you could take some days off and go there. I don't think that you would be disappointed.
Congrats on the pregnancy. I hope all goes well for you and that sweet little one.
Degenerative disc disease,osteoarthritis, status post 4 cervical spinal surgeries with plate insertions and fusion, Lupus, Sjogren's Disease, Fibromyalgia, chronic heacaches and chronic pain.
Find blessings in every day!

Regular Member

Date Joined Jun 2009
Total Posts : 23
   Posted 7/14/2009 11:47 PM (GMT -6)   
Hi Chicky!  When they diagnosed you with Crohns, what were the findings? It does seem odd that you have not had diarrhea or bloody stools.  Did they see areas of inflamation in your colon?  If you do have Crohn's, there is a type of arthritis that is associated with the disease.  It is called Enteropathic Arthritis, and it mainly effects the peripheral joints (arms and legs).  Here is a link to more info about it:
The thought that I had is if you did have Crohns, and the Pentasa was keeping the inflamation at bay, then your leg pain might have been improved as well (the arthritis and inflamation in your gut go hand in hand).  Who knows?  Maybe you could talk to your doctor about this if you think it might apply to your situation.
Keep us posted!  DO NOT GIVE UP!!
And congrats on the baby!  You will never love anyone more than your child.  It's amazing! :)
Jenny B
Age 36
DX w/ fibro June 2009
DDD & annular tear at L5/S1
endometriosis since age 18, have had 5 surgeries to date
Current meds:
OxyContin 30 mgs 3 X day
Dilautid 2 mgs 1-2 X day for breakthrough pain
Elavil 25 mgs
Zoloft 75 mgs
Lunesta 2 mgs
Klonopin .75 mgs
Protonix 40 mgs
Flexeril PRN
Phenergen PRN
I am living in the body of an 80 year old......

Mrs. Dani
Veteran Member

Date Joined Jun 2009
Total Posts : 2787
   Posted 7/15/2009 12:46 AM (GMT -6)   



Dear ChickyDL,

  Just a quick note of welcome and *huggs*. I am sorry you have had to go to so many diffirent doctors I do hope it gets sorted soon. Maybe this time around, get copies of everything so you have a full record of everything done. Seems like so much to keep up with!



TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood

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