Wednesday, November 7 - Day 3:
Yesterday after returning to the hotel, I was in a lot of pain. I tried to rest with not much success. Then about 1 pm, I was able to drift off to sleep (thank goodness). I slept for a couple of hours and when I awoke my pain level had diminished a bit.
That night, I was able to sleep for about 3 hours straight -- pretty good for me.
Appointment 9:30 am- electrodes are being moved slightly around my knee. Still painful, but it is more tolerable that the past few days. Wow- twenty minutes into treatment -- the treatment itself it hurting, but I feel absolutely no RSD pain in my knee. It is so unbelievable. It is such an odd feeling. I never thought not feeling RSD pain would be strange. 16 years always feeling a burning, stabbing, throbbing, jabbing pain I guess has become my norm.
Th electrodes on my right shoulder feel awfully strong today though. Although I came into the office with my shoulder pain greater than it has been for the last few days.
I should mention that a big storm is brewing here. They are predicting snow, slush, rain and temperatures in the 20's --- ahhhh! Why do people choose to live in this freezing ice cube? I know, I know, I did it for my whole life too - there are beautiful things up here too.
So far, so good. I am driving Steve to the airport - still calmness in my knee, it is unbelievable. About 25 minutes into our trip, almost to the airport, Steve says to me "your pain is back, right" I had not even said a word yet. He said that he could tell immediately. Even though I didn't say anything and I was still smiling, talking, my whole body language changed. So today - I got 25 minutes of post-treatment relief.
Last night, my uncle gave me a snow brush and ice scraper for the car. He told me I will need it. I have not used one of those for over 7 years!
Well, my uncle was right. Not five minutes after I dropped Steve off did it start to flurry. From flurries right to stick to the ground snow. I remembered quickly why we moved from New York --- walking in the snow is extremely scary. My first step out of the car, I almost slipped right down. My cane slipped right on the wet snow.
I had planned to try and do a few things today, but I just could not risk walking in the snow (again, another reason we had to move south).
So I have a 1,000 piece puzzle , unlimited free coffee and hopefully a good movie to watch back at the hotel.
Tomorrow - my appointment is not until the afternoon. Hopefully all the snow will have melted by then.
Wednesday, November 7, 2012
Tuesday, November 6, 2012
The beginning of my journey....
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.
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.
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