Tuesday, August 17, 2010

This is my last post for now.

I have been very persistent with my medical team, as inconsistent they may have been with me.  I met with the new pain team in Springfield yesterday.  My thoughts- finally we can move on, and begin a treatment plan with the RSD in my leg. After what has seemed like an eternity since I first started to feel symptoms in my ankle and rear, I was going to have the start of a treatment plan.
Little did I know how disappointed I was about to become.
The intern walked into the room, with my medical records in hand.  My latest MRI and X-Rays had shown that there was nothing wrong with my lower back, with the exception of spondylolisthesis in my L5 and SI, from which I was diagnosed with as a teenager.  She leaned over, and began to tell me that my records indicated I showed nothing significant that would cause my pain.  She then told me I had only one of the 'factors' that would indicate that would indicate CRPS,or RSD.  And have been the end of the appointment....
But I broke down.  My left ankle was significantly colder than the right. I can't fake that, and I was getting that feeling that she just thought I was there to get more medication, or attention.  I asked her just to touch my ankle... and then I begged her. I was crying.  I told her I didn't care what she called it, that I was in pain, and that all I want is some kind of relief, and that I am tired of doctor after doctor just dismissing me and passing me off to the next one, because they aren't sure what to do, or piling on another drug, and thinking that is all they need to do.
She left the room, so I could change into a gown, and did an examination of my leg and arm.  She seemed dumbfounded, and told me she was paging one of the heads of the pain center.

15 minutes later, a tall, older gentlemen,with a calm, gentle face entered the room.  Head did a thorough   head to toe exam of my entire body, just asking what just gentle brushing my skin, asking if it felt fine, tickle or felt 'yucky', and then ask were the sensation started and stopped.  It was the first time a doctor had asked me that, in the 8 years I have been in this pain.
Afterward, he proceeded to tell me he believed I had a real problem, but it was not RSD.  He is not certain what it is yet.  It is some type of neoropathy.  He also believes I am on too much medication.
A plan has been put in place so he can consult with my pain management team back home.  I am also going to see a pain psychiatrist (for the first time).

It is a lot to swallow.  I have spent the past few months researching and preparing to live with RSD.  I was coming to piece with it.  I have met many nice people on support groups... and now I feel like my world has been shaken, and the lights have been turned off.
Living with any pain of illness,and not knowing what to call it is scary, at least for me.  Now to start the process all over again... and perhaps in the future I may start a new journal.

If you think you are not receiving the care you deserve from a doctor, get a second opinion- and if the staff is treating you any less than human, get their names, and report them to the administration.


  1. I've been following your blog, and I'm truly sorry that you have decided not to blog for a while. Only recently diagnosed myself, much of what you have been writing about has been mirrored in my own life. I too have faced a barrage of cynical medics, along with my own excellent rheumatologist. Following a particularly unpleasant introductory telephone appointment with a pain management specialist, so far this week I have received a face to face appointment with the great man himself for September, and a letter asking me to make an appointment with his pain psychology team. I too am feeling completely thrown by all this, to the point where I have questioned my own mind many times. I'm trying to keep a blog of it all myself. Please try and keep a note of what is happening in your blog. It is only through your writing that I felt as if there is someone else out there who understands exactly as I feel.

    I only wish I had told you this sooner.

  2. I will continue to write. Thank you for reminding me that I am not alone

  3. I'm so glad you've decided to keep on writing. I promise that I will keep on reading. You are definitely not alone with this. I sincerely hope that today has been a better day for you :)

    Sue x

  4. I just wanted to let you know you are not alone. I had shingles last year and it attaced my leff hand viciously. My hab
    nd became claw like, would feel like it was on fire and at other times feel and look almost dead. I finally got my Dr. to refer me to hospital. The took 5 vials of blood and several x-rays but did not know what was wrong. That was in March this year. I only recieved a follow up appt. a week ago! I called them back and told them that in the 6mths it has taken for the next appt to come, not only had I gotten myself reffered (being tired of waiting and nobody but myself bring worried about my hand)but the Consultant had not only diagnised nme with RSD {as it's known in the uk} but I was receiving treatment too. The treatment I am getting right now is Accupuncture and I mention this my friend as I have seen some improvement in the mobility of my hand a wrist and wondered if you would benefit from this also. Please hang on in there and keep pushing for the help and medicaton you need. If you ever need a shoulder I am happy to exchange emails just leave me a message here. In the meantime I hope things start moving along for you soon,