What's wrong with me??

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Regular Member

Date Joined Oct 2007
Total Posts : 22
   Posted 10/28/2007 8:39 PM (GMT -7)   
Hi everyone,
I was diagnosed with Crohn's this past January after many years of suffering the symptoms.  I went on Prednisone for 5 1/2 months, was completely weaned off by about mid July.  I'd never experienced any joint or bone pain up until then, but as soon as I went off the prednisone I started to hurt.  Mostly my thumbs, wrists, balls of feet and toes.  My doctor thought it was withdrawals and that I would soon be back to normal.  Well that hasn't happened.  Whatever it is, it has just about encompassed my entire being.  Now he thinks it may be Crohn's related arthritis and has referred me to a rheumatologist.  I call him tomorrow and hopefully will get right in.  Everything hurts.  The thing is, it doesn't really feel like what I would expect RA to feel like.  My index fingers are slightly swollen, my toes are definitely swollen, but other than it feels as much like bone pain as anything else.  The backs of my thighs are especially achy.  I'm wondering if it's my tendons.  Almost feels like my tendons are detaching and splintered my bones.  This morning I stretched up on the balls of my feet to reach something and felt a tear in my heal.  Something small...I don't know...it's sore and feels weird but I'm not having any trouble walking.  I get shooting pains in my wrists.  The bones in the backs of my hands hurt and the bones of my forearms hurt.  I have difficulty opening a jar or holding a glass because of my thumbs.  I could go on and on but you get the picture.  What is this???  I feel like I've deteriorated so much in just this one weekend. 
Sorry about the rant.  It's just that I'm feeling desperate right now.  Any ideas or words of encouragement would be so very much appreciated.  I just had my 48th birthday.  Six months ago I was young.  Now I feel like an old person.

Regular Member

Date Joined May 2007
Total Posts : 499
   Posted 11/1/2007 2:43 PM (GMT -7)   
Hi there,
How did your appt go? Just found your post, and wanted to say hello and welcome to the forum. We have some of the greatest people here, glad you found us. I'm sure one of the moderaters will come along shortly, they are the ones with all the medical knowledge, I'm just sort of a rookie here, was diagnosed with RA in April of this year.
Know exactly how you feel about the whole "feeling old" thing, although I just turned 50, my body seemed to age double that in the past few months! But, the good news is that my meds are starting to work, and I'm feeling better than I did at first. Sure there are some bad days, but I don't hurt near as much as I did in the beginning.
Don't know too much about Crohn's , like I said, I have RA, but there are others here who deal with that as well. I know it's tough, but hang in there, once you and your doctor figure out what treatment you need, things will get better!
Take care

Regular Member

Date Joined Dec 2005
Total Posts : 256
   Posted 11/1/2007 3:26 PM (GMT -7)   
sounds like it could be Reactive Arthralgia (Reiter Syndrome). This is a kind of arthritis/myalgia full body hell, which I have as one of my multiple awful chronic conditions....."reactive" denotes that it is usually triggered by an event such as an infection, or another auto-immune condition like Crohn's, IBS et cetera.

I would look into Reiter's closely. It is a very poorly understood diagnosis by most docs, and is very difficult to prove with blood tests in most cases (you could be tested for the HLA-B27 gene but over 30% of Reiter's sufferers don't have the gene). Many normal "rheumatic markers" remain normal even as Reiter's rages through your massively inflamed tissues.
Conditions: Chronic Pelvic Pain, Severe Lesioning of the Spermatic Cord, Reiter Syndrome (Reactive Arthritis and Myalgias along with a slew of other symptoms), Sacroiliitis, Costochondritis, widespread Tendonitis, and on and on. Typical daily pain levels exceed 8.5.

Medications: Oxycodone, Dilaudid, Lidoderm (lidocaine) Patches, Flexeril, Soma, Testred (testosterone capsules); many herbs & supplements.

Previous medications: Opana ER (12 hour time releasd Oxymorphone, Endo Pharm.), Fentanyl patches (two 100mcg/hr patches worn simultaneously, changed every two days; Mylan generic solid polymer patches), Cymbalta, Lyrica, Neurontin, Amitryptyline, every NSAID known to man, Prednisone, and many more.

Regular Member

Date Joined Oct 2007
Total Posts : 22
   Posted 11/1/2007 4:14 PM (GMT -7)   

Thanks for your responses.  My dr. appt. is this coming Tuesday.  At first they said the earliest opening was Nov. 28th!! but I pleaded and got in on a cancellation.  Good thing because the saga continues.  A couple of days ago I developed a painful swollen area of my lumbar spine as well as some smaller painful spots in my thoracic spine.  I'm taking vicodin to manage the pain.  I did forget to mention that I've had chronic pain from arthritis in my neck for about 3 years.  The dr. says I have the neck of an old person even though I've never had any injury to it.  No car accidents or anything.  It's funny -- I'm so used to my neck by now that I forget about it even though it's constantly painful.  The other place I get inflamed when my Crohn's acts up is my lower right ribcage.  It feels like someone's poking a stick right through me -- in the front and out the back.

Anyway, it's such a comfort to know you all are out there.  I read the forum and I know that if all of you can deal with your problems -- some much worse than mine -- that I can do it too.  Thank you.  I'll update you after my appt.


Veteran Member

Date Joined Mar 2005
Total Posts : 4305
   Posted 11/2/2007 10:31 PM (GMT -7)   
I am sorry that you are having to deal with all of this joint pain.I to have crohns and it is very possible that your joint pain is from the crohns.make sure you tell your new Rheumy what is going on.I was tested for Ra and I have RA right along with OA and AS well.So please let us know how your appointment goes ok.

Regular Member

Date Joined Oct 2007
Total Posts : 22
   Posted 11/3/2007 1:26 PM (GMT -7)   
Thanks, Curley.  I think the hardest part right now is just not knowing what it is.  It was frustrating for years trying to get my gut diagnosed.  At least now I have a course of action I can take with that and I'm feeling remarkably better.  But now all of a sudden the joint issues and I feel like I'm back to square one.  This forum has done wonders for my attitude though.  Thank you.
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