Wife living with severe pain in ankles and wrists

Help, Please help, My wife is 52 and has been living with Severe Pain in ankles and wrists now for over a year.  We live in Lou. Ky. have been to Neuros, orthys, ruemys, every test has showed Nothing.  Reumy test was neg. MRI of ankles showed Nothing. Nerve study showed nothing.   4 years ago AVN took both of her hips, since then, she has just lived in pain.  now with the ankles and wrists, pain management Dr. gives her hydrocodone( 5 a day).  That doesn't even help with her pain.   What do we do,  We are at witts ends.  We don't know where to turn to.  I can't believe they can't find anything, with all the tests they have ran.  PLEASE, someone pass this along to someone that can help!!!!!!!    She is taking Lyrica, and cymbalta, but it seems to not even phase her.  The depression is getting worse every day.  
PLEASE, WE NEED HELP!  What about Mayo, or Mercy in Cleveland????

Thanks,
R. Aiken
Louisville, Ky.

[spastic]

Hello there, I am sooo sorry to hear about your wife.  I am glad you found us and we will try to help you.

It sounds like to me that she needs an emergency consult with a new round of Dr's.  I have only heard good things about Mercy in Cleveland and Mayo in Rochester.  I understand if you go there in an emergency, they will work you in faster.  

Has your wife ever tried the med Neurontin?  It is similar to Lyrica but I think it works better.  I wonder if the pain mgmt Dr doesn't realize the agonizing pain of AVN.  They are trained in anesthesiology, there are ways to block the pain with nerve block injections, I wonder if her Dr would consider it for her.

I would call the pain mgmt Dr and get her in there today and if they wont see her as an emergency, take her to the ER.  I understand the frustration you are going through with this and I sympathize with you.

Please keep me posted.

Your Friend,.

Ada aka Spastic

[spastic]

I'm sorry, had a brain lapse there.  I meant to comment on your wifes chronic pain in the wrists and ankles.  There is a puzzling condition called Reflex Sympathetic Dystrophy, it usually starts after a traumatic experience like a gunshot wound, a surgery.  I am wondering about this, with your wifes history.

I hope you two get answers soon and much needed pain relief!!!

Sending Many, Many Cyber Hugs,

Ada

[smittygirl]

It does sound like you need all new doc's.  I still have all my info, phone #'s etc for the Mayo Clinic in Jacksonville, FL.   They have a hotel right on property you can stay on and it was for me a great experience.  I went to 3 different dr's before going to the Mayo, and by the time I had my appt. I had already done so much research on my own that I figured out what I had.   I brought all my lab tests with me and the Dr. at the Mayo said I was right on the money and didn't charge me for my appt.  He was embarrassed that one of the dr's I had been to was a friend of his and couldn't believe he misdiagnosed me when I was a text book case of Reactive Arthritis/Ankoylosing Spondylitis.    Please don't give up, I can empathize with your wife greatly, I had never been in so  much pain in my life.    Make sure you get copies of all her test results so you can brig them to new doctors.   Also try and write out a time line of when it all started and all her symptoms.  Please let us know how you make out and stay in touch .  Wishing you all the best.

[txsilver]

So sorry to hear how your wife is suffering.  I want to add my encouragement to that of Spastic and smittygirl, please get to new Drs and do not give up.  I would also like to add to document her family's medical history.  The fact that my great-aunt had lupus and her son has RA helped crack my case.  Good luck and keep us posted.

[smittygirl]

Great advice!  I always forget that because unbelievably so no one in my family has any arthritis at all, off course they could have the HLA-B7 gene and not know it just like I didn't know I had it for 46 years!   The collective knowledge and experience is what makes this forum so great.  Thanks ladies for ALWAYS being there for all the members.  All my best to both of you.  Love ya!

Sue

[ccookin]

Latest Info:
My wife's Dr. is sending her to another Reumy. and in the meantime. Put her on Celebrex once a day, raised her dose on Cymbalta, and gave her some new patches for the ankles that has a anti-inflamatory in it.  We'll just have to wait and see if there is any difference in the Med changes.

thanks again for responses,
R. Aiken

[spastic]

I hope your wife will get some much needed relief with the med change.  I am glad to hear that she is going to another rheumy.  How long do you two have to wait for that appt?  What kind of patches did they give her?  I use Lidoderm patches, they help immensely.  Please keep us updated and tell her that we all are pulling for her.

Many Hugs,

Ada

[ccookin]

I just wanted to thank everyone with their help!  To update my wife,s condition,  we went to the new rheumatory doctor and he has diagnosed her with Sjogren's Disease, also her labs came back that she was critically low in Vitamin D and he put her on 50,000 IU of Vitamin D!  For the Sjogren's, he put her on Plagunil and Azulfidine, she is having a horrible time trying to take these 2 drugs.....if anyone has any information to share with us, we would GREATLY appreciate it!  Thanks Rick

[lee999]

I also have been diagnosed with Sjogren's after 7 years of pain. I looked at your post as i still have ankle and wrist pain. I also have low Vit D even though I live in australia and get injections. One thing I know is this syndrome changes my symptoms all the time. Also a good sleep is essential.
Here is a good site http://www.ratesites.zoomshare.com/
Also on the SS forums i heard about a doctor in USA who helps people with Central nervous system component of SS if your wife has this. I'll try and find it for you