No diagnosis, but looking for opinions

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vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 10/2/2009 6:57 PM (GMT -7)   
Hi all,
I come from the Crohn's board, and this is my first posting in RA. I thought I'd ask all you experts for your opinions while I wait to get an appointment with a rheumy.

So here's my story:
Diagnosed with Crohn's in 2006. Major flare, lasted about a year total. Treated with steroids and a clinical trial. In remission by end of year '06.
April 2008: In remission, but get really bad joint pain in right hand for about a week. Then it goes away. Don't see a doctor about it.
Late 2008-early 2009: occasional numbness in toes and/or fingers
July 2009: Beginning of what I think is another Crohn's flare. New symptom: joint pain all over, but mainly in hands. Starts mild, but gets worse over time.
Aug 2009: GI puts me on 20mg prednisone, joint pain goes away within a couple days.
Sept 2009: All tests for Crohn's activity are clear, GI questions original Crohn's diagnosis, but not sure what else could be going on.

Meanwhile, joint pain starts coming back with a vengeance. Worst in hands. Pain is across entire hand rather than limited to just joints, and also in wrists, forearms and elbows. Knees stiff but not really in pain. Over the last 10 days, the pain and stiffness in my hands and elbows has at times become debilitating. Sometimes I cannot make a fist at all, other times I have to "tell" myself to do it multiple times before I can. Last week for about 36 hours straight I had intense burning in both hands, as if they were about to spontaneously combust, but they were neither hot to the touch, nor swollen, nor red. The burning has come back since but has been very mild. The entirely of my hands hurts from the moment I get up until I go to sleep. The pain is made worse by cold temperatures and use. For example, chopping veggies, typing and twisting lids can be excruciating at times.

Heat helps a little, but not much, nor does the relief last. I take Tylenol Arthritis, but it doesn't seem to do anything. I am hesitant to take NSAIDs because of the Crohn's (assuming I actually have IBD). I am in limbo currently, waiting for the rheumy I have been referred to to process my forms and schedule an appointment. I am getting more and more nervous at how quickly this pain has gone from a mild annoyance to severe and at times debilitating, especially knowing I may have to wait weeks to see a doctor. My GI had me start tapering my pred last week but said if the joint pain continued to get worse to bump back up to 20mg - which I have done. Unfortunately, it has not stopped the pain whatsoever.

Do these symptoms ring familiar with anyone else? I wonder if it could be RA as I haven't had any swelling, just stiffness and pain. And if not, what the heck is going on with me?

Any advice or suggestions for dealing with the pain are most welcome. Unfortunately I cannot "stop" some of the use that causes pain, especially the typing, as most of the work I do is on the computer.
29f, PhD student, originally diagnosed 2/06.
09/09: diagnosis being questioned due to lack of evidence of disease.
Next step: seeing rheumatologist
Currently taking: 2g Pentasa, tapering from 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D supplement


nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/2/2009 8:58 PM (GMT -7)   
Hi Vitak,

Sorry to hear that you're going through this....my father was diagnosed with RA at the age of 27. Me, I didn't find out until I was 52.

I've been hopping from forum to forum on this site because I have so many different diagnoses and pending dxs. But my own experience with RA has been fairly mild so far, probably because I've been on prednisone and Imuran for more than a year for my autoimmune hepatitis. I have had pain, no burning though.

I typed "burning sensation RA" into Google and found out that you're not alone in experiencing this. Also found out that doctors tend to be dismissive of symptoms that don't fit "the norm".

Since you've been around this site due to Crohn's, maybe you already know that doctors don't know everything yet about autoimmune disease. And unless you have a really good rheumy, it's almost a waste of time to go to one....so I hope you get a good one! Of course, if you're a grad student, you probably know how to research your own conditions, print out medical journal articles to take with you to doctor's appts (yes, do it!), and advocate for yourself.

Have you ever considered the possibility that you might have celiac disease? Have you ever tried to go gluten free? I know that the gluten free diet has been recommended for Crohn's patients as well as those of us with full-blown celiac. Celiac disease may be the cause of all of your other problems....please check out the following link for an explanation of that rather astonishing statement:

http://www.umm.edu/news/releases/zonulin.htm

Also, you might be interested in a blog called NoMoreCrohns.com:

http://nomorecrohns.com/default.aspx

My own RA pain improved after I went gluten free, but it has improved even more since I have been entirely grain free. I hope that it may actually go into remission so I can get off the drugs!

Well, if you're interested, please check out the links. I do hope that you start to feel better soon!

Best wishes,
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.


dianna30
Regular Member


Date Joined Mar 2009
Total Posts : 90
   Posted 10/2/2009 9:43 PM (GMT -7)   
Vitak,
 
Have you considered fibromyalgia as the culprit for your pain?  I believe it can present similarly to RA, with pain, stiffness, tingling, and is also related to IBS.  I am currently being seen by a rheumatologist who seems to be leaning toward the fibro diagnosis for me.
 
Hopefully your rheutmatologist is a good one so that he/she will be able to differentiate what is causing your pain.  Just to warn you, it may take a while to find out for sure what is going on.  It has been my experience that doctors have to run a lot of lab tests in order to narrow down the possibilities.
 
Another thing-I see that you are weaning off of prednisone?  I might be wrong, but I believe that RA responds to steroid treatment while fibro does not.  It may be an important clue if you can tell your doc whether your symptoms improved or worsened while you were taking steroids. 

Be joyful in hope, patient in affliction, faithful in prayer (Romans 12:12).

http://diannaschnabel.blogspot.com/


vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 10/3/2009 11:14 AM (GMT -7)   
Joann, my doctor said he tested for celiac when I had my colonoscopy/endoscopy last month (although I'm not sure how you test for it) and it was negative. I tend to have the fewest Crohn's-related symptoms when on a low-residue diet, so I generally avoid a lot of wheat/whole grains. I do probably consume a fair amount of semolina, as pasta is my go-to food when I am not feeling well, and sometimes it is just about the only thing I can eat without my gut revolting.

Dianna, I have considered fibromyalgia and plan to bring that up when I see a rheumy. And yes, I am trying to prepare myself mentally for a long journey before figuring out what is wrong. I was lucky with my Crohn's diagnosis - it was maybe six weeks between my first trip to a GI and being diagnosed. I know some people who took years to get their diagnosis. My primary concern is that I not fall behind in my studies.

I am actually not tapering the pred. I started to, but stopped because the pain was getting so much worse. So I am back at 20mg. The confusing bit for me is that the prednisone appeared to help initially, as the joint pain almost completely disappeared within 4 or 5 days of starting the prednisone. Now a month in and the pain is not only back, but significantly worse. How could the pred work for awhile and then just stop?
29f, PhD student, originally diagnosed with Crohn's in 2/06.
9/09: diagnosis being questioned due to lack of evidence of disease
Waiting to get an appointment with a rheumatologist for severe joint pain
Currently taking: 2g Pentasa, 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D supplement


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 10/3/2009 4:28 PM (GMT -7)   
Hi, I'm not familiar with all of your symptoms (forearm pain) but yes, you can have a burning sensation with RA.  I've had RA going on 5 years now and this will be my third week off of my MTX, currently taking no meds for my RA, and I'm now having that burning sensation in my hips.  I've never had my hands have the burning that you describe, they often get "tight" because the joints swell.  The elbows sound familiar though! Good luck and I hope you get an answer very soon.

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 10/4/2009 10:26 PM (GMT -7)   
Hi Vitak,

Vitak said...
Joann, my doctor said he tested for celiac when I had my colonoscopy/endoscopy last month (although I'm not sure how you test for it) and it was negative.


Usually they perform a visual inspection of the small intestine during the endoscopy, looking for gross evidence such as scalloping, and they also take a few biopsies of the intestinal walls to look for microscopic damage to the villi. Unfortunately, there are MANY false negatives with both bloodwork and biopsies for celiac.

The biopsy analogy that I love compares it to taking several 3-inch-square samples from a 250-sq-ft lawn, looking for doggie doo. If you find no doggie doo in your samples, does that mean that the lawn is free of dog stuff? No, of course not! Your intestines are many yards long, and they usually only biopsy a few spots. So if the damage is patchy they won't find anything unless they're really really lucky!!

Vitak said...
I tend to have the fewest Crohn's-related symptoms when on a low-residue diet, so I generally avoid a lot of wheat/whole grains. I do probably consume a fair amount of semolina, as pasta is my go-to food when I am not feeling well, and sometimes it is just about the only thing I can eat without my gut revolting.


Even a minuscule amount of gluten (flour dust in the air landing on your salad) can cause as much damage as eating a plate full of pasta, because it's the autoimmune reaction that causes the damage, not the gluten itself.

If you have a scientific mind, why not perform an experiment? Go completely gluten free for one week, and see how you feel. If you don't feel any better, well, go eat a plate of pasta with my blessings! :)

BTW, they DO make gluten free pasta (out of rice flour or corn flour)....it's not bad! Whole Foods and Trader Joe's carry them, as well as various health food stores, etc. And just so you know, the gluten free diet is recommended for those with Crohn's, and I personally know people with Crohn's, RA, fibro, and even lupus who have had their conditions go into complete remission on the gluten free (or the grain free) diet.

If you do decide to go gluten free, here's a helpful link (it's non-trivial):

http://glutenfreegoddess.blogspot.com/2006/01/morning-after-diagnosis-that-is.html

Vitak said...
Dianna, I have considered fibromyalgia and plan to bring that up when I see a rheumy. And yes, I am trying to prepare myself mentally for a long journey before figuring out what is wrong.


You're actually finding these things out at an early age....I didn't find out about most of my problems (including the fibro), until I was in my 50s! I certainly hope you don't have a long journey to your diagnosis(ses)!! Dianna has a great idea there about fibromyalgia, since it seems to go hand-in-hand with many autoimmune disorders.

Vitak said...
How could the pred work for awhile and then just stop?


In my experience, if your condition is flaring, you may need to increase the prednisone dosage for a while.

I do hope you feel better soon! I understand your anxiety over your studies...are you writing your dissertation yet? That was truly the MOST stressful period I can remember from my graduate school years.

Take care,
JoAnn
Autoimmune hepatitis, Hashimoto's thyroiditis, fibromyalgia, rheumatoid arthritis, celiac disease, asthma, psoriasis, Reynaud's syndrome. Possible lupus and/or Sjogren's Syndrome - diagnoses pending.

Post Edited (nasalady) : 10/4/2009 11:29:50 PM (GMT-6)


vitaka
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 10/12/2009 5:52 PM (GMT -7)   
I'm only in my second year of school, so I have at least a year (probably a year and a half) until I begin the dissertation. Hopefully I will be healthy long before that!

I finally saw a rheumy today. She said there's no point in running bloodwork at this point because I'm on too high of a dose of prednisone and it would probably affect results. But she's decided to start treating anyway while beginning to taper my pred dose. She's prescribed me 7.5mg MTX, and I have to admit, I'm really nervous about taking it. Part of it is because I have a lot of issues with nausea without adding drugs that can cause nausea into the mix. And part of it is selfish -- I enjoy drinking. I certainly have no issues cutting back, but I enjoy having wine with dinner and splurging once in awhile. I feel so bad for even considering not taking a treatment because I don't want it to impact my social life. I know there are other options -- my doc specifically mentioned sulfasalazine -- but I feel like MTX generally works better and I should give it a chance.

I guess I'm also a little weirded out by the fact that she's treating me as if I had been diagnosed. Let's say theoretically that this isn't RA but instead fibro. MTX wouldn't help me at all, would it? I guess the alternative is to wait to start treatment until I can taper the pred low enough so it's not going to affect my bloodwork, and I certainly don't want to be waiting that long.

Sigh. Being sick is so frustrating.
29f, PhD student, originally diagnosed with Crohn's in 2/06
10/09: Prometheus test shows results consistent with UC
10/12/09: beginning treatment for arthritis
Currently taking: 7.5mg methotrexate weekly (pills), 2g Pentasa, tapering from 20mg prednisone, 150mg Trazadone, multivitamin, vitamin D, magnesium, probiotics, folic acid

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