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Revision THR Nanamac's story - Part 2

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Re: This is my story

Have it all down pat Glynis! That is something that the Rhuematologist complimented me on. I write EVERYTHING in a day planner, appointments, results, when I start/stop meds, who I saw, what test/labs etc. I have had to as sometimes age/meds/nerves/pain, you name it, can make you goofy :rolleyespink:...

I have had to be my own advocate after trusting the professionals with my life and ending up worse off than when I started :DOH:...not fun.

Well, tomorrow I call the OS and see what he thinks about all the pain from since I took the prednisone. I don't care about the EMG at this point (he ordered it, I had to cancel). I am sick of tests and needles. I NEED HELP!

Thanks for you suggestions though. And I figure in case there is a GOD, I need as much help as I can get :wink1:!
 
Re: This is my story

Let us know what the OS says Janet! Fingers crossed!
 
Re: This is my story

Hi Janet!
Could you possibly be going through prednisone withdrawal? Did you go off of it quickly or taper your dosage? Some of the withdrawal symptoms I read about match what your are experiencing:
Joint pain, fever, weakness, feeling very ill, etc. I may be way off base here but I've been thinking about you a lot and wanted to give you my thoughts. I had a bad experience with this darn drug too, but not as severely.
Here's hoping you get some answers today!
Caroline
 
Re: This is my story

I think EVERYTHING that I am experiencing is related to that AWFUL drug Caroline, but I have to say, I did taper of, so not withdrawal. More like POISONING :hate-shocked:.

Boy I wish I knew then what I know now...thanks for thinkg of me.
 
Re: This is my story

Janet, were you able to talk to your OS? Hoping your getting closer to getting the problems handled.
 
Re: This is my story

Thanks for asking SL. Haven't done that yet. My sister is still here since my aunt's funeral (she traveled to Canada and has now returned), so things have not been very calm around here. I have been in a terrible depression as well...

I did try to make the appointment today, but the office is in a training session (?) so couldn't get through. Hopefully I can do it tomorrow.

I can't get out of my own way right about now...between being down and in pain, I just sit in the recliner...
 
Re: This is my story

Hi Janet. Sending hugs your way, as you wait for an answer, and wishing your pain goes away too!:friends:
 
Re: This is my story

Janet if any one deserves a great big break It's you, I hope that you get the results you are after and something can finally get done to remedy the problem.

Billy
 
Re: This is my story

Hey girl - we are here for you! Please let us know how you are doing!
 
Re: This is my story

Not very well, I'm afraid. I am in the throes of a deep depression. I started back on my Rx for prozax (fluoxetine) hoping for some relief but not as yet. I had an appointment scheduled for 10:30am today with the new OS and just couldn't go.

I awoke at midnight last night terribly sick to my stomach and tried for hours to vomit but couldn't. Today I am a bit headachy and just really not feeling very well. My knees are a bit better after being back on the Osteo BiFlex. but still very swollen and sore. I am at a total loss.

I am supposed to have a follow up on Tuesday with my NP but I don't want to see her or my GP again. I am just isolating and trying to get the remains of the prednisone out of my system, or whatever has made me so sick...

Please bear with me as I really have come crashing down after being on such a high from the steroid. What ever has caused all this pain is not evident to the powers that be. So, I'm just dealing with it in my own way.
 
Re: This is my story

Janet, I am so sorry:friends:. I am not sure how to cheer you up, but I am thinking of you and hope you will see the doctor.
 
Re: This is my story

Janet I don't recall your family situation in terms of support system right there. But if you have family/friends would you consider hauling yourself somewhere like the Lahey Clinic with their help?? Giving a link for our Smarties out of the area--
https://www.lahey.org/Rheumatology/
 
Re: This is my story

Thank you MM! If I can muster up the energy, I will call on Monday! I need a fresh start. How did you find out about them? I don't recall if you said where you were from other than the US.
 
Re: This is my story

Janet I live in the Deep South now but grew up in Penna. and had family use them. Kind of Mayo Clinic East--:wink1:
 
Re: This is my story

Right! THANK YOU! I can also get a PCP there! In fact, I can do EVERYTHING there!
 
Re: This is my story

Janet....so sorry you are feeling bad. But I'm glad you have a new resource.....go for it!!!
 
Re: This is my story

Janet, I have been thinking about you. Please don't isolate too much. You need help to get out of this "pit" and start living again.

Can't say it enough - we are here for you! :friends:
 
Re: This is my story

Just wanted you to know that I am still praying you feel better. I hope you can get this resolved soon. The Tuft's suggestion is great you need to visit a major teaching hospital that specializes in rhuematolgy. Maybe there is one closer to you. They know how to look for Zebras as they say and often have ways of testing for things that do not filter down to a community hospital for years. :grouphug2:
 
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