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going to see a rheumatologist next week

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Crohn's Disease
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Posted 4/26/2008 12:25 AM (GMT 0)
I already have a diagnosis of fibromyalgia, but we all think something else is wrong too, so I'm being referred to a rheumie.

I find it hard to explain exactly how I'm hurting, so what sort of things should I think about for the doctor? All I can think of so far is:

* is the pain associated with the Crohn's (no, I don't think so)
* do the joints feel hot (no)
* does one side hurt more than the other (both sides hurt, but at different times)
* what aggravates the pain (long list of things!)

What else should I think about? And should I have questions of my own?

Thanks,

I.
Posted 4/26/2008 12:35 AM (GMT 0)
If your rhuemy is any good he is going to start with a complete medical history that includes any family history of any autoimmune disorders. He will want a chronology of your symptoms and yes he will want to know if any of your joints are visibly swollen, hot, deformed or swollen noticible upon palpatation. He will do a trigger point exam even though you are already diagnosed with fibro.
Then he will do xrays bilateral hands and feet as a minimum, wrists knees and sholders if warrented.
He will take enough blood that you will be sure he is keeping a vampire in his closet-I am sure you are already familiar with the tests but expect ANA CRP ESR RF CMP CBC/Dif-platelets and maybe a few more like protein electropherisis just for fun-he may order liver function tests and kidney function tests as well.
I would be sure to ask him what he is thinking-what his initial impression is what he is looking for. They almost always have an idea from your history and symptoms but they may not share unless you ask.
Posted 4/26/2008 12:40 AM (GMT 0)
Hi Ivy, There is a link at the end of my signature "Lupus Resources". I posted several "replies" which makes the information "sticky". Near the end of that post, there is a bit of an outline for a rheumy appointment. I suggest that you go with NO makeup on. Be clean, but don't use conditioner in your hair or lotion on your skin. Its a small thing, but your skin can reveal some health issues to a good rheumy who is paying attention. If you get rashes or mouth sores, make sure to take pictures and bring them with you. I had lots of symptoms that I didn't realize even mattered . . . some things you just get so used to living with and they come on so insidiously that you don't even realize what your are tolerating. Like sun sensitivity, dry eyes, mouth sores, limbs going numb or tingling or falling asleep. Good luck! I hope he/she is very helpful. Expect to hear tons of questions and I hope he spends an hour with you. I hope you'll post back and update us. Blessings!
Posted 4/26/2008 3:19 AM (GMT 0)
you can get arthralgias (joint pain without inflammation) associated with crohn's. i get them from time to time, sometimes when i am coming down with a cold or something and sometimes with no other symptoms,  not even a flare up. mine are only in my knees and ankles, and they migrate around, they usually last for a few days at a time. all my labwork for rhematoid was negative and my dr. said the joint pain is well documented in crohn's pts. naproxyn or percocet is the only thing that touches the pain when it is bad. hope this is helpful.

Posted 4/26/2008 3:54 AM (GMT 0)
Hi Ivy

Are you on Remicade?  I'm asking because I had the same symptoms and was refered to a rheumatologist.  Turned out positive for Lupus.  I have had three ENA tests done over the last year and a half and it is still positive.  Pred and MTX have kept the joint pain at bay.  One day I would have pain in my upper right arm and shoulder, the next day it would be my right hand and wrist.  I just never new what to expect.  My GI has seen this in more patients since it happened to me.  He handles remicade for Western Canada and knows his stuff.  If you are on Remicade I would talk to the Dr. about discontinuing it because it gets worse with each treatment.  Please keep me posted and take care of yourself!

Posted 4/26/2008 5:57 AM (GMT 0)
Rosie, that's really helpful! Thanks. I would have dolled myself up for this appt (it's in the city; I tend to make more of an effort) and it's good to know I won't have to this time.

Julia, I have been on Rem and am now on Humira but (praise be!) have been having aches for most of my life so I don't think it's the medicines. But yes, I've also had the Rem aches - aren't they awful! It took me ages to *stop* the doctors from blaming my aches on Rem, so I'm not going to let them start thinking that way again :-)

I have three appointments that day - let me guess; don't get *any* blood tests done until I've seen all three doctors, eh? Better to be jabbed once than three times...

Rosie, so would these be extra symptoms I should tell him about:
* occasional numbness and tingling in hands, arms, feet and legs
* a tendency for hands to go purple and numb, legs to go purple and for feet to get really cold
* mouth sores (probably Crohn's though)
* photosensitivity, esp on hands
* sensitive skin, triggered by some foods and household cleaners
* constant ringing in ears, hearing things that other people can't
* cold sores
* fatigue
* very traumatic childhood

I.
Posted 4/26/2008 4:22 PM (GMT 0)
Ivy, Yes . . . I would name all of those symptoms . . . the cold purple hands is likely Raynauds and is a common overlap to autoimmune disease. Traumatic childhood???? Meaning you were often ill? or was it traumatic as in you were abused?? W/fatigue . . . I would mention a bit of detail, like "in spite of 8 hours sleep most nights" or "feels like I'm walking around in a concrete suit" or some other descript ion of your fatigue. Because MOST normal people do not understand our kind of fatigue and it helps the doctor understand the degree of your fatigue. When is your appointment? Blessings!
Posted 4/27/2008 12:51 AM (GMT 0)
Rosie - abuse and other things.

I'm not sure about the Renauds, but I'll be sure to note it. And I'll think about how to describe the fatigue. Is it normal for it to be worse in the mornings, and lift (if I'm lucky) in the afternoons?

The poor man is going to get pages upon pages of symptoms!

The appt is in eight days.

I.
Posted 4/27/2008 2:09 AM (GMT 0)
Ivy . . . My first rheumie took my outline and put it in his file (although it was apparent that he'd read it at my second visit). but he asked so many questions that most of the info in the list was given during the Q & A. The second rheumie actually took my notes and went thru them with me. . . .and then filed it. He also used my outline to add his notes. Don't worry about what is "normal" . . . just indicate how these symptoms act for YOU. If you feel worse in the morning, then let him know that. They get lots of clues from the smallest info. Don't write paragraphs. Keep it really short, like an outline/list using a separate line for each symptom. The idea is that someone could take your list and tick down thru it quickly and make sense of it. Make sure it typewritten or it will be a huge turn-off. Most doctors would rather read than listen to a woman talk that long. If they'd rather listen, then they can set the notes aside and ask questions. I hope it goes well for you. Don't expect any dx on the first appointment. He'll likely have LOTS of blood work ordered and schedule a second appointment. So its a big long wait again. *sigh* But it really is a difficult puzzle to piece and you want him to give an accurate dx and treatment. I hope things go well for you! Blessings!
Posted 4/27/2008 10:49 AM (GMT 0)
Hey, I don't care if it's a long wait. I'm just glad that somebody is LISTENING at last. It has been a long and frustrating wait already.

Already doing the dot points; it's still long!!!!! I already do a similar sheet for the gastros, but it's quite hard to think laterally and start from scratch for a different type of doctor. However, I'll keep plugging on.

Thanks,

I.
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