Post Edited (Marius123) : 2/6/2007 6:16:32 PM (GMT-7)
I read your post with much interest. Was dx with Crohn's about 18 months ago, have been on Remicade a little over a year. I have an appointment with Rhuemotologist at 8 AM tomorrow. Last week I saw Orthapedic because of my feet (they hurt so much I can hardly walk); in the last year it has gotten where I have sooooo much trouble walking - I'm in pain all the time, cannot walk barefoot at all. He says it's definitely "some kind" of inflammatory arthritis and wants me to be checked out. It's mostly my feet, hands and neck but I am beginning to feel it in my ankles and knees. And, can it affect my muscles too? They feel sore all the time... Is that a normal progression for this type Arthritis?? Any, why has the Remicade not helped? I am not very familiar with RA or it's symptoms. Any website's that would be good for me to visit? However, I have gotten a lot of info from this site.
The other thing I am wondering about is the "RA nodules", what is that? And, where do they appear? I have been having some small 'bumps" that come up on my hands, feet and arms that itch me to death. I scratch them until they bleed, then it forms a small scab and it stops itching...I haven't been able to figure out what it might be.
One more thing, I have been to another Rhuem a few months back and she dx fibromyalgia and gave me Tramadol. I take 1/2 of one each night before bed (she had prescribed 1 or 2 - Yikes made me sick to my stomach) do you think it could be an allergic reaction to that??
thanks for any light you can shed on this for me.....
Ok, my 2 cents, I am like Deckie, give me a dx and quit dancing around & tossing dx's out left & right. GI and I were talking a couple weeks ago while I was in the hospital, humm, well sometimes I wonder if you have Lupus, its obvious you IBD arthritis. But no real meaningful dx. We all know when that pain hits, it so much different than the usual pain. I know the difference of the OA pain that have. I have found mine to be unrelenting and pain meds really do not take care of it. Keep in my I have this implanted pain pump, plus 2mg of Dilaudid for BT pain. When it hits all I want to do is cry. Its like its got to run its course and then be done with it. I honestly feel when this is going on that the body is attacking itself. Recently PCP sent me for blood work, tested positive on ANA and an elevated CEA. He did not know what the CEA was. So, I get to see a rheumy the middle of next month.
Was at ER couple of weeks ago. Bad diarhea, stomach pain, pain in my back and trouble breathing. Did nothing for me, except try to push IV steroid shot on me and a script for Medrol Dosepak. I do not tolerate steroids, I go into congestive heart failure on them. Oh yes, this er dr knew all about it, but chose to pretend I knew nothing. For nothing wrong with me, the following day my gi had the er dr in the small town where they are, to admit me. I spent 8 days in there. I don't mind telling ya, I was one sick puppy. Turns out I had a bacterial infection in my colon, COPD kicked up and a kidney infection from hell. I came home with oxygen, can't tell ya the difference its made having it too. Not real happy about dragging a tank around, but guess what, I sure am breathing easier. In the process of seeing a pulmonary dr. In the middle of all of this, I am trying to find a new PCP. I learned the hard way, the clinic I have gone to for at least 10yrs, none of the drs have hospital privleges which means its up to an ER dr to admit me and then have to bring drs in that know nothing about me. Do you have any idea how hard it is to get admitted. ER dr was not interested in the fact I have cd he only wanted to push steroids on me for the COPD.
Hope all are well as can be. If anyone has any input for me I would really appreciate it. Oh, did get an x-ray report mailed to me from ER, severe fatty liver infilltration, according to recent reading here not uncommon in folks with cd. Hugs to all, Susie
I am also a mystery..I have all the symptoms of RA, and then some, now have a strange rash on my back even. I have been seeing my rheumy for 15 months now, and the last time I left to check out, I looked at my "diagnosis" and it said inflamation unspecified. My RA testing has came back negative twice now. Although he is treating me with Plaquenel.
It is disheartening when you don't know what is wrong with you! I have had trouble getting the right medication, sometimes my rheumy doesn't really understand how painful my flares are since my testing is always negative. I think if I was positive for RA and had the flares, it wouldn't have taken this long to finally get something like the plaquenel.
Straydog mentioned the Medrol dosepack, and I have had that one time, and that is the only medication that made me feel compeletly normal,even if it was only for a couple of days!! I asked for another one, but nope How about finding a medication that works like the Medrol that I can use everyday? that is what I would like
Sometimes you just have to say it like it is...I was supposed to go back for a checkup on Jan 24, but thought I would give the plaquenel plenty of time to work, but it's getting ridiculous! I finally called and am going next Tuesday, I have had enough of my unspecified inflammation. I have had this for 15 months and in this whole time, the only medications I have tried are plaquenil, and the usual NSAIDs.
If my rheumy can't help me or doesn't know what is wrong with me, hopefully he can tell me, or send me to someone who can.
Just know you are not alone!
Sorry Ive been AWOL for a while but I have been really busy and really tired most of the time now. I have started a small business with my best friend from college. It is almost ready to launch.
As far as my illness, nothing too spectacular is happening. I am taking the Remicade and it does make a difference, and while it is very helpful it is still not a 'cure'. But it does make me feel better. Hopefully it will fade away for a while on its own now.
I just began the process of changing jobs, something I should have started a long long time ago but was too scared. I alwasy wanted to be a sailor and I didn't want to lose this part of my life, but given the fact that I have a hard time even walking on most days, I think it is time to try something new. So I put in for a transfer recently... it will take a while to find out what happens from here. One can only hope...
I do have half of my MBA completed. SO... maybe they will get me a good business job.
I hope everyone here is doing okay!