So frustrated...

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Veteran Member

Date Joined May 2007
Total Posts : 1284
   Posted 6/22/2008 3:26 PM (GMT -6)   
Since I have been prescribed some sleeping medicine, I have been able to get at least six hours of sleep (which is way better than what I was getting), and I feel like this has reduced a lot of the anxiety and nervousness I was having...
But right now, I'm experiencing a lot of frustration and some anxiety. I can't stop thinking about my joint pain...
It's just there, constantly nagging at me... I try to distract myself, and sometimes that helps a little bit. But it's still there...
I get exhausted so easily... I feel like such an old person. I hate feeling like this. I hate it so much. I wish someone could do something about it. At least tell me what's going on...
My X-rays were normal and my blood work looked pretty okay (except for an increased white blood cell count and low B12 levels, but that's nothing really out of the ordinary when you have Crohn's disease). My doctor keeps telling me the joint pain is just a side effect of my medication... (and I also think he's probably dismissing it as a symptom of my depression, too).
But I am not so convinced... and I'm really concerned. Ever since I read about avascular necrosis. It's not like I'm a really healthy patient with hypochondria worrying about some obscure disease. I believe I have a legitimate concern. I have pain...
And I have been on steroids for a long time. For almost two years at varying doses (mostly 20 mg, but I've been on high as 60 mg for a very short period of time, I've had liquid prednisone through the IV a couple of times... and for the past couple of months I was on 40 mg and am just now tapering)...
I want an MRI of my hips (at least my hips... if I could just get that done, that would ease my anxiety)... just to make sure that I do not have this disease (it's best to catch it early and usually in the early stages of the disease, X-rays are normal, but the disease can be detected on MRI). But the doctor has been refusing...
I just want to cry because I'm scared and I hurt... and I feel like nobody is listening to me. :(
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.

Elite Member

Date Joined Apr 2007
Total Posts : 32602
   Posted 6/22/2008 4:15 PM (GMT -6)   

Hey Celey,

Hi there, it is Kitt. Sorry you are hurting.

Peripheral arthritis is most common in people with ulcerative colitis or Crohn's disease of the colon. Typically, the course of the arthritis follows that of the IBD, with flare-ups and remissions coinciding. There is no one test that can diagnose peripheral arthritis, but instead several tests including blood tests, joint fluid analysis, and x-rays are used to exclude other conditions.

Symptoms of peripheral arthritis are pain, swelling, and stiffness in one or more joints of the arms and legs (wrists, knees, and ankles) that may migrate between joints. When pain in peripheral arthritis is untreated it can last from several days to weeks. Fortunately, this type of arthritis does not generally cause any permanent damage.

Avascular Necrosis and  Corticosteroids. It isn't clear how these anti-inflammatory medications, such as prednisone, cause avascular necrosis. People who take high doses of corticosteroids for long periods of time — for instance, people with chronic illnesses such as rheumatoid arthritis and lupus — are more likely to experience avascular necrosis. Avascular necrosis is rare in people who take lower doses of corticosteroids for a short time.

To determine what's causing your pain, your doctor will ask about your medical history and your current signs and symptoms. He or she will likely want to know what actions increase your pain and what relieves it.

In order to diagnose avascular necrosis, your doctor may request images be taken to get a closer look at your bones. Common tests for avascular necrosis include:

X-rays. X-rays usually appear normal in people who have early-stage avascular necrosis. Later stages may be more evident on an X-ray.

Magnetic resonance imaging (MRI). MRI scans can show early changes in the bone that may indicate avascular necrosis.

Depending on your signs and symptoms, your doctor may use other tests to diagnose avascular necrosis. In rare cases, your doctor may surgically remove a small piece of bone (biopsy) for laboratory examination.

Prednisone is the oral tablet form of steroid most often used. Less than 7.5 mg per day is generally considered a low dose; up to 40 mg daily is a moderate dose; and more than 40-mg daily is a high dose.

I would ask for your MRI or get a second opinion.  Hope this helps but please remember I am not a professional.

Hugs to you


Kitt, Moderator: Anxiety, Panic & Depression 
*~* *~*
Not a mental health professional of any kind
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~

Veteran Member

Date Joined May 2007
Total Posts : 1284
   Posted 6/22/2008 5:58 PM (GMT -6)   
Whole reason I went to the primary care doctor in the first place is because the joint pain has been getting bothersome... (low back pain, hips, knees, and ankles... My shoulders, elbows, and wrists bother me a little bit, but not as much as my lower half does).
I had some severe right hip and right knee pain that woke me up around 4 AM (maybe a little sooner than that, but 4 AM is when I glanced at the clock)... It wouldn't go away. I ended up going to the hospital because it hurt so much and I could hardly walk. They only did an MRI of my back... Have a couple of bulging discs... "Mild wear and tear" my doctor said... So, I guess that explains my back pain, but what about everything else? And I still think... better safe than sorry... I don't want to risk having my hips collapse or anything else like that...
Need to stop worrying... I've taken another step. I've looked up a bunch of numbers of rheumatologists... There are no rheumatologists in my immediate area, but I think there's some close enough for me to be transported via non-emergency medical transportation. I just have to call them up and see if they'll accept my insurance. :(... Wish I didn't have to do this alone...
If I had a parent... or someone older... to go with me to the doctor, maybe the doctor would listen more. Doctors usually listen to concerned parents...
But concerned patients... Concerned young patients... concerned young, alone, depressed patients... Who cares, huh? :(
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.

Veteran Member

Date Joined Jul 2006
Total Posts : 2721
   Posted 6/22/2008 11:27 PM (GMT -6)   


I am sorry you are going through this. Going without sleep is bad enough, factor in pain and anxiety and life can seem bleak. I really wish you didn't have to go through this alone too. Do you have a friend who could come along with you? It seems like a tough deal to be doing this alone. Celey, you are a tough nut, I really respect you for this, but I wish I could come and blast some doctors into giving you the respect you deserve. Bless you, I hope things improve.

Co-moderator Anxiety/Panic
Panic Attack Survivor
Weekend Warrior Princess

Veteran Member

Date Joined May 2007
Total Posts : 1284
   Posted 6/23/2008 9:04 AM (GMT -6)   
I don't know how much it would help to have a friend with me... *I have noticed that I usually get a faster response time at the hospital when someone else is with me than when I'm by myself* I don't want to drag my friends into the same frustration... I'm sure it wears on them enough seeing me in pain.
Besides, I don't think friends would be allowed to come in with me in the doctor's office. Family and spouse only...
My siblings are too far away and they're younger than I am, my grandmother is too sick and too busy with her own troubles, my parents would be of no help (one in jail and the other one suffering with schizophrenia)... and I'm single.
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.

Veteran Member

Date Joined Jul 2005
Total Posts : 1952
   Posted 6/23/2008 12:46 PM (GMT -6)   

I've taken my boyfriend into many doctor's appointments, and we're not exactly "family" yet. I think the rules are that anyone *you* want to know about your medical condition is allowed. In fact, there are now some forms I've been given at doctor's offices where I can request that *no one* (not even family or spouse) be told info about my medical conditions. Bottom line: it seems to be the patient's choice entirely these days.

At any rate, you can call the office and ask them.

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