Thursday, November 10, 2011


Last Tuesday I took a tumble and started a flare.  Since then, I have had a headache.  I've taken my allergy medication and migraine meds daily which lessens the intensity of the headache but doesn't get rid of it.  This isn't the first time that I've had a headache that lasts more than a week, but it is so frustrating.  Things like reading, using my eyes, sunshine, etc. all make the headache worse.  So many of us with RSD get headaches due to muscle spasms, migraines, TMJ, etc.  I have digenerative disk disease in my cervical spine, which I'm sure contributes to the headaches.  I've had 2 cervical epidurals, which did help with the headaches before last Tuesday when I aggrivated everything with my injury.

The insurance company, doctor's offices and pharmacy are all giving me a headache as well.  In early October I went to my pain management doctor and he suggested trying something different for pain, Nucynta.  Several of my friends are on it so I decided to give it a try when my doctor suggested it.  I took the prescription to the pharmacy.  They didn't carry it so I had to have them order it.  When you sign on with a pain management doctor, you have to sign a contract that says that you will use only one pharmacy and only one pain management doctor.  A week later I got the call that the medication was in the pharmacy.  We my husband was on his way to pick it up,  I got a call from the pharmacist that the medication wasn't approved by the insurance company.  Now they couldn't have check this before they ordered it so that we could have been working on the authorization while waiting for the medication to be ordered?  Of course that would be too easy!! 

So the pharmacist said that she would fax the denial to the doctor's office.  I called the doctor's office to aler them to be on the look out for the form.  Two weeks later, I still haven't gotten a letter from the insurance company about their ruling; so I gave then a call. It seems that the preauthorization was never sent to them.  I got on the phone to speak to the doctor's office and they said that they never got any paperwork from the pharmacy.  I told them that I had called them to tell them to expect the form..and they couldn't call me to tell me that they didn't recieve it so that I could follow up?  So I went to the pharmacy to talk to the manager.  She pulled out the fax verification form in an attempt to show me that it wasn't their fault (no of cours it's no one's fault, right?).  When she pulled the form it said "fax busy" and they never resent it or followed up in any way.  So now I've waiting three weeks for this pain medication without anything for pain.  I went on the insurance company's web site and printed the preauthorization form and faxed it to the doctor myself.  I called to be sure that they recieved the form.  Now we wait, again to see what the insurance company says.  It is so frustrating to have to go through all of this when you have a diagnosis that says that you have one of the most painful diseases that there is and you are fighting for pain medication.  It never ceases to amaze me the ways that they try to torture us over our healthcare!!

For CRPS/RSD Awareness Month, here is today's post:

For my friends who are nurses, this is progress!

Kentucky Bill Would Require Nurses to Complete 2 Hours of CRPS Education
State/ Branch: Kentucky. House
Title: HB 234
Summary: Relates to training about complex regional pain syndrome; requires all nurses who are licensed and practicing on the effective date of this Act to receive two hours of training concerning the recognition and treatment of complex regional pain syndrome, also known as reflex sympathetic dystrophy by December 31, 2014; requires all nurses licensed after the effective date of this Act to complete training concerning complex regional pain syndrome within their first three years of practice.
Latest Action:
02/01/2011 Introduced.
02/02/2011 To Committee on Health & Welfare
Sponsor: Embry
We are asking all Kentuckians to contact Tom Burch at or 1-800-372-7181 and request him to choose this bill to go before it goes before the committee
For more information, please contact Carolyn Clemons
South Central KY RSD Support Group, 270.879.4023

Your RSDSA membership is important. There is power in numbers, and we would like to see our membership, currently over 7,000, grow to encompass all those who are afflicted with CRPS. When we speak to the legislature, the pharmaceutical companies, and the medical associations. Our voice is strong and our message is clear.

Anything you can do will be greatly appreciated by the CRPS community. We look forward to working with you. You can contact us online at

1 comment:

  1. Thanks for sharing this headaches experience..keep the spirit!