Undiagnosed and looks like I'll stay that way

[dymphna10]

Hi, I've been having joint pains in my hands, wrists, elbows and feet for the past few months.  I haven't had a break from them yet unfortunately, they're worse in the AM, and I'm stiff for a few hours, get better with movement etc.  I've also had some swelling in my fingers and hands though it's been really mild and I've recently started to get some ulnar nerve problems in each arm.  So far all my labs have been negative and even a bone scan was negative.  My rheumatologist has basically said he doesn't think it's anything and washed his hands of me.  I tried a 5 day burst of steroids and improved greatly.  It was like night and day.  Unfortunately the steroids have now worn off.  The rheumatologist says he could care less that I had an improvement with the steroids and thinks it proves nothing.  From my understanding I thought it at least showed something inflammatory was going on.  Am I completely wrong? Am I just going to stay undiagnosed like this?

[Rachelinpain]

just to add, i am going through something similar and agree that you need to find a new doctor, if a doctor says things like that to you you are certainly withen your right to find a new one.  

as for the steroids...steroids typically make everything feel better, not that it means your symptoms aren't real, but even people without alot of problems feel better on steroids.  that is why our body makes them-they decrease inflammation, help our bodies become more efficient, give us energy, and relieve pain-this would feel good to anybody.  and like you said they are helpful to people who have inflammation and can provide relief, but have serious negative consequences if given long term including diabetes, osteoporosis and increased infection rate.  

the poster who wrote about ketoprofen is correct.  it is an NSAID like ibuprofen and although not steroids, NSAIDS do the same thing for inflammation and pain (just not quite as well) and are safe (unless you have ulcer or kidney disease).  you do not need a prescription, ketoprofen works the same way as ibuprofen just in different dosages.  there is also a perscription med called feldine that is similar.  

if you are having a flair of pain you can take 800 mg of ibuprofen 3 times a day for a few days and that should ease your pain. you need to find a new doctor that will help you manage your pain and make sure you have had all the appropriate tests to work it up.  

although these are my opinions i did go to medical school and have substantial experience with pain management.  i hope things improve for you.  

all the best, rachel

[smittygirl]

First off I am very sorry you are going thru this.  The first thing you need to do is find another doctor.  Do you have copies of your labs, if not get them and start a file.  From here out whenever you have any kind of test done, let the office know you want copies, lab work, xray, MRI whatever, you are ENTITLED to them.   Did they test your sed rate and if so what was the number.  If you had pain, stiffness and swelling and the prednisone took it away, clearly there is some kind of inflammation going on in your body.  There are over 100 different types of arthritis.  A person can test positive for the RA factor and never get it and can also test negative and have the disease.  Also check the labs to see if they tested you for a gene marker HLA-B27.   I have been dx for 4 years with AS ( Ankoylosing Spondylitis and Reactive Arthritis)    Morning stiffness followed by improvement with movement is very typical of certain types of arthritis.   I speak from a lot of experience, so please, DO NOT let anyone, be it a doctor, nurse etc dismiss you and your symptoms.  They are real and no one knows your body better than you do.   Please keep me informed and feel free to ask anything.  I look forward to hearing from you.   One more thing, I don't like prednisone and something that worked well for me was a RX anti inflammatory called Ketoprofen.  If you don't have any stomach issues it's worth a try and much less harder on your system than the steroids.  I now take Enbrel injections weekly for my disease but always have the ketoprofen on hand for flare ups.  Hope this helps you somewhat.  Please stay in touch or PM me if you'd like.

Warm regards,


Sue  

[Cindee56]

Your rheumatologist sounds like a jerk!  I had one like that who kept telling me *you're fine* when I knew I was not.  I found another one, have an appointment May 23.  

You could still have RA even with negative blood tests.  Or you could have a lot of osteoarthritis.  It's clear you have SOMETHING.  I would find another doctor.