Saturday, November 10, 2012 - Day 6 of Calmare Treatment
Slept from 11:30 pm through 1:20am. I was up through 7:30am. Insomnia has become a very annoying friend thanks to RSD. Although, I am very grateful that I now am able to sleep in bigger time blocks (anywhere from 1:15mins - 3:30hours). I used to only sleep on 45 minute cycles. So, I do truly appreciate any step in the right direction.
Appointment - 2:00pm
We started basically at the same trigger points as yesterday. Everyday I have been trying to find something to distract me during therapy. Today - was the best!!!!!! My cousin Steva was there chatting with me the entire time and surprise ---- my sister came to Connecticut as well. So, three girls catching up and being silly - really helped even when it felt like the doctore was trying to set me afire.
I do not think I had any change in my right shoulder today. However, after treatment, I was RSD pain free for 3 1/2 hours. Still, the first rection I have when the therapy session is over is one of oddness. My knee feels as if it is not mine. It is so hard to descibe what I am feeling. I wish I had the words.
Today, I felt the pain coming back on slowly. It was a bit better than the past few days when the pain just came back full force. I am thinking these are all good signs.
I take a break from treatment tomorrow. Yay.
Saturday, November 10, 2012
Friday, November 9, 2012
The weekend approaches
Friday, November 9, 2012 - Day 5:
Appointment - 11 am
I will get right into it..... leads (electrodes) went on my knee and shoulder. The Doctor was able to start me off on a higher intensity level right away. The shocks of the treatment definitely still hurt but maybe I am just learning to tolerate it more with each day of therapy.
Therapy is over after an hour as usual.
I am now back at the hotel -- I can report to you I remained without any pain for almost 3 hours.
The doctor has decided to add an extra treatment (in addition to the scheduled 10), so he will meet me and open the office for me tomorrow afternoon.
My cousin, Steva is driving down from Maine tonight to spend the weekend with me here in Connecticut. I am so looking forward to spending time with her - I am also going to get to see my cousin Zachary, who is asked us to pick him up at college so that he can visit as well.
The weather is warming up, my pain-free experiences seem to be getting longer, I get to visit with my family ---- I am thinking that things are looking up!
Appointment - 11 am
I will get right into it..... leads (electrodes) went on my knee and shoulder. The Doctor was able to start me off on a higher intensity level right away. The shocks of the treatment definitely still hurt but maybe I am just learning to tolerate it more with each day of therapy.
Therapy is over after an hour as usual.
I am now back at the hotel -- I can report to you I remained without any pain for almost 3 hours.
The doctor has decided to add an extra treatment (in addition to the scheduled 10), so he will meet me and open the office for me tomorrow afternoon.
My cousin, Steva is driving down from Maine tonight to spend the weekend with me here in Connecticut. I am so looking forward to spending time with her - I am also going to get to see my cousin Zachary, who is asked us to pick him up at college so that he can visit as well.
The weather is warming up, my pain-free experiences seem to be getting longer, I get to visit with my family ---- I am thinking that things are looking up!
Thursday, November 8, 2012
After the storm
Thursday, November 8, 2012 - Day 4:
Well, the snow did melt by the afternoon - mostly because it has been lightly raining.
Appointment - 1:45 pm. Today Dr. Sheehan decided to try changing the pattern of the electrodes on my right knee.
Turned on machine - my knee shook/spasmed immediately. He had to adjust the electrodes a bit. Doctor believes the electrodes are causing the allodynia in my knee (allodynia - is a pain due to a stimulus which does not normally provoke pain. Temperature or physical stimuli can provoke allodynia, and it often occurs after injury to a site) to go into hyperdrive.
I had an hour of Calmare treatment today. Within 15-20 minutes of starting the therapy, again my RSD pain seemed to diminish.
The treatment itself hurts. It feels as if you are constantly being burned by a curling iron and then every few moments the iron shorts out and - and them every few minutes the doctor turns the intensity up higher.
I am trying to still "distract" myself -- that is so much easier said than done. I tried to read a magazine, but to absolutely no avail. Besides the fact that I have been having trouble reading since my RSD invaded my right eye, every time my knee spasmed, I would lose my place in the article. Tomorrow, maybe I will try listening to music. I am up for any ideas.
Well - results for today....after treatment I went an hour and forty-five minutes with no RSD pain!!!!! It it so incredible to walk and not feel pain with every step.
When the silence of pain wore off -- the pain came back at such a full force. I could not even stand anymore. I sat down and rested for about an hour. The pain subsided back down to a 5 (out of 10). I was able to resume my "normal" day.
Each day - the length of pain-free time seems to get longer. Maybe tomorrow it will be 2+ hours?
I will let you know.
Well, the snow did melt by the afternoon - mostly because it has been lightly raining.
Appointment - 1:45 pm. Today Dr. Sheehan decided to try changing the pattern of the electrodes on my right knee.
Turned on machine - my knee shook/spasmed immediately. He had to adjust the electrodes a bit. Doctor believes the electrodes are causing the allodynia in my knee (allodynia - is a pain due to a stimulus which does not normally provoke pain. Temperature or physical stimuli can provoke allodynia, and it often occurs after injury to a site) to go into hyperdrive.
I had an hour of Calmare treatment today. Within 15-20 minutes of starting the therapy, again my RSD pain seemed to diminish.
The treatment itself hurts. It feels as if you are constantly being burned by a curling iron and then every few moments the iron shorts out and - and them every few minutes the doctor turns the intensity up higher.
I am trying to still "distract" myself -- that is so much easier said than done. I tried to read a magazine, but to absolutely no avail. Besides the fact that I have been having trouble reading since my RSD invaded my right eye, every time my knee spasmed, I would lose my place in the article. Tomorrow, maybe I will try listening to music. I am up for any ideas.
Well - results for today....after treatment I went an hour and forty-five minutes with no RSD pain!!!!! It it so incredible to walk and not feel pain with every step.
When the silence of pain wore off -- the pain came back at such a full force. I could not even stand anymore. I sat down and rested for about an hour. The pain subsided back down to a 5 (out of 10). I was able to resume my "normal" day.
Each day - the length of pain-free time seems to get longer. Maybe tomorrow it will be 2+ hours?
I will let you know.
Wednesday, November 7, 2012
Storm is coming.....
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.
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.
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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