So many of you know, after months of research, I have decided to try a new treatment/therapy to treat my Reflex Sympathetic Dystrophy now being called Complex Regional Pain Syndrome (RSD/CRPS)
The treatment is called: Calmare Therapy.
Calmare Therapy is a non-invasive, non-pharmaceutical solution for pain control. It uses biophysical “scrambler” technology, a type of treatment for nerve pain that uses electrodes placed on the skin. Very low doses of electricity are transmitted from the electrodes through the skin to block the pain. A 'no-pain' message is transmitted to the nerve via disposable surface electrodes applied to the skin in the region of the patient's pain. The perception of pain is cancelled when the no-pain message replaces that of pain, by using the same pathway through the surface electrodes in a non-invasive way.
There are only eight centers in the US that are currently using this therapy, after careful consideration, I have chosen to be treated by Dr. Sheehan in Glastonbury, CT.
Leaving my family for the next couple of weeks I think is going to be the hardest part.
Monday, November, 5 2012 - Day 1: Traveled to Glastonbury, CT.
Was met at airport by Auntie Donna and Uncle Alan. So good to see them. (That is the perk of this trip - I will get to see my family). Had a great lunch with them at a landmark restaurant, Rein's Deli.
3pm - Appointment at the pain center. Met with Dr. Sheenhan, went through orientation, began Calmare treatment.
Oh my gosh --- torture! It was an hour of sheer torture. I felt as if I was being electrocuted over and over. The sad part is, the doctor told me the machine was only turned on a little. Steve told me not to be a martyr and to tell the doctor to turn the machine down even lower if I can't handle it. I just tried to grin and bear it.
What happened next is what is amazing -- the doctor went to touch my knee (something NO ONE can do, without me kicking them) and I didn't even flinch.
He took the electrodes off, my knee felt odd, the pain was different -- no stabbing, burning, no throbbing, it hurt but not like "regular" RSD pain. It was so much less. A LOT less.
We left the office, walked to the car, sat in car for a bit, Steve and I chatted for a bit. Within 10 minutes, my pain didn't just return it came back stronger than what it was that morning. The doctor had indicated that this was a possible outcome.
By the way, it is freezing here! I do not mean cold - I mean freezing! I know I used to live up north, but apparently living in the South for seven years has thinned out my blood. It was 32 degrees.
Tuesday, November 6 2012 - Day 2:
Frost on the car windows - brrrr.
Appointment 10 am
4 electrodes surrounding my right knee and 2 around my right shoulder.
Again --- owwwww. Especially the two right above my knee. My leg was having spasms and twitching from the pain of the treatment for the entire hour. On many occasions I just wanted to rip the electrodes off. I put a blanket on my leg to "distract" myself. Dr. Sheehan stayed in the room chatting with me for most of my session which was very nice.
After an hour - that wonderful "beep" sounded indicating that the session was over and the machine shut down.
The electrodes were taken off - and again - there was an eerie feeling. I think this eerie feeling maybe what no pain/ little pain feels like. I am not sure. I have suffered since 1996. So, not being in pain is something I am not used to feeling. We left, and began driving to hotel. About 15 minutes later- I learned what that eerie feeling was -- it must have been what little to no pain feels like -- because my RSD pain came back on instantly. I went from almost nothing to an 8 (out of 10).
It took me by such shock. I was so upset. Steve is looking at this as a positive thing, saying that the treatment is doing something - it obviously is beginning to "scramble" my brain signals. It is trying to send a "no pain" signal to my brain replacing the current "constant pain" signal that RSD has created.
Me, at the moment, all I can think about is how much pain I am in - so it is hard to focus on any thing else.
Came back to hotel, going to try and rest.
