Week one is in the history books. As soon as I get this written it will be.
I continued to have problems sleeping. My CPAP mask just wasn’t working for me so I slept without it. I knew that the quality of my sleep would be poor without it but I wasn’t getting to sleep with it. Getting up, eating breakfast and going to the gym was very hard.
Exercise group went reasonably well. The pain was relieved some after the exercise and icing. Then we did the endurance testing. I have moved along at the goals that we set earlier in the week. I was able to exceed the goals for speed walking. We reviewed the results and set goals for next week.
Before lunch we had a group session where each of us described our experience so far and then the group provided feedback to each member. It was a good experience, especially to hear the senior class talk about their experience of being 3 weeks into the program. It offered hope to those of us just starting out that things get better with each week.
In the afternoon I got to experience Lymphatic discharge therapy. I am not even going to try to explain what it does or how it works. Only that I understand that it plays a big part in the immune system and this type of massage helps it flow like it should. It is also a very relaxing massage that I enjoyed very much.
The rest of the afternoon was spent finishing our endurance exercises for the day and learning what to complete over the weekend. We set goals with the physical therapist for range of motion improvements next week and he identified the stretches that would specifically help each one of us.
The weekend is designed to help us practice some of the techniques that we have learned in the home environment and bring back any questions on things that caused us trouble. This isn’t the type of plan that I adapt well to. But I know it is the type that I need. I’ll follow up on Monday after noon and let you know how it went.
Two months ago when i first was evaluated for the Pain Management Program I was taking 100Mg of Lyrica three times a day. One of my primary complaints and reasons for leaving work in March was the difficulty I was having with cognitive problems. I know this is a complication with chronic pain but I also wondered whether it was made worse by the medicine. So I started tapering the amount down to 100Mg that I took at night. Getting to that point really didn’t seem to affect my pain symptoms and if I had to say one way or the other, I’d say that my cognitive abilities had improved if only slightly.
This week, I had discussed with the PMP nurse that I wanted to eliminate Lyrica altogether. Since that had been a recommendation of my Rheumatologist earlier she agreed. She did suggest that I start with every other day before completely eliminating it. So, last night I left the Lyrica out of my medicine cocktail. My sleep last night was poor. I’m not sure if I was just anxious over the reduction or what. This morning at the beginning of our morning exercises I was flared up in all areas of the senses.
Exercise group was a real struggle. Every movement seemed to cause pain to race through every part of my body. One of the things I should explain is that in the PMP they don’t have any place to track your level of pain. In the words of one of the Physical Therapists “We don’t care about how much pain you have! It’s chronic pain, We know you hurt it’s not going to (physically) hurt you.” Sounds harsh doesn’t it. But it’s true. As we have learned chronic pain can cause an over sensitization of the central nervous system and we don’t want to limit our activity based on pain. The tail would be wagging the dog.
I should qualify the quote above. The PMP team is very aware of our physical limitations and they do not want us to physically hurt ourselves. The program is very well designed to that effect. The purpose is for us to understand the type of pain we are managing and not let the pain manage us.
The idea is that our activity and working despite the pain is one of the keys to our retraining our central nervous system. This seems counter to everything I had learned before but now as I understanding the icing, relaxation techniques, and pacing it makes sense as a multi-pronged approach to retraining the central nervous system. Most importantly I have learned that it works.
Later in the day we had more goal setting sessions, reviews of testing done earlier in the week, and training on the neuroanatomy of pain. I had a session with a Physical Therapy technician that repeated the flexibility measurements that had been done earlier in the week. I learned that my left hip and left should had improved 11 and 6 degrees respectively. That was good news and I received accolades from the staff for making progress so quickly.
Through the day today I had complained (to myself) of increased pain in my hips. I did learn that while the pain had increased my flexibility was improved. I also improved my times and repetitions in the endurance exercises. I experienced declines in pain several times as I applied the new techniques. All in all it was a good day.
Last night was a much better night in the sleep department. Leading in with a poor night of sleep the night before and a full day of activity during the day were probably key factors in getting a good nights sleep. Figuring out how to turn off the 4:00 am alarm on the borrowed stop watch also helped.
First thing this morning we started with stretching. The routine seems to go fast through the various exercises. I always thought that a fibromyalgia patient should hold the poses longer than other people. But I guess this program is also intended for any person with pain issues. The key thing is that there are many stretches that I have never done before. After the 30 minutes was done, I felt well stretched. Then we went for our second round of icing.
Today I only went for the upper and lower back. I was anxious to get started because I remembered the dramatic feeling of having most of my back being numb compared to the constant pain of before. I also am looking forward to understanding more about the retraining of the central nervous system. I know this is just one of the tools but it’s pretty dramatic.
I also started my endurance exercises today including a speed walk, regular walking, bicycle and stairs. These have all set durations or steps based on endurance tests that I completed yesterday to determine where I should start. Then I have goals of improvement that will be tested again at the end of the week. Between each of these exercises I’m required to rest to start teaching my central nervous system an increase/decrease of levels for pacing of activity. This will be transferred to a plan in the future for all activity that I do.
This afternoon we went to the therapeutic pool and did more stretching movements. There were a number of the stretches that I could only partially complete due to my flexibility limitations. There was a particular leg stretch that caused cramping that I frequently suffer from. The Physical Therapist assisted and was quickly able to show me how to adjust the stretch and quickly relieve the cramp.
The day was concluded with relaxation. Not relaxing (not watching the TV or reading) but relaxation. Today’s relaxation consisted of guided imagery. Anything that starts with laying on a padding mat with a pillow is just alright with me! Rex the Psychologist guided us through breathing exercises and then started guiding us to a warm place with descriptions of shapes and colors but let us fill in the place that we would go. I ended up on a tropical beach with a drink that tasted of mango. I was surprised that I got into it as much as I did.
So another day is done. I’m relaxing (watching TV) in my room and contemplating another day.
It seems like it has taken forever, but I’m finally in the Pain Management Program at UNMC. The purpose of the program is to manage pain through new behaviors. This includes eliminating pain medications, education, exercise, training the central nervous system and physical therapy.
Because I have fibromyalgia, just the effort of getting to the clinic by 8:00 am and spending the day in the activities was a significant trial for me. The schedule has included an evaluation of my flexibility limitations, stretching, relaxation techniques, education on biopsychosocial rehabilitation, endurance tests and icing. Quite a bit of information and activity for someone who has had cognitive issues and has backed off activity for the past 4 months.
One of the interesting things that I am learning is that since my pain is not acute, that it is not causing damage by continuing to work through it. Because of that we don’t talk about pain levels when doing activities. Appropriate levels of activity are decided between the staff and me and the pain shouldn’t be a factor in continuing the activity or not.
In comes the ice!
A few months ago I would have been terrified of the thought of putting cold on my skin. Warm is good! was my mantra. I have since started using ice but not in the way I learned today. At the UNMC Pain Management Program they use chipped ice wrapped in wet towels. I applied it to my neck, upper shoulders and the small of my back for 15 minutes. The idea is that it numbs the skin and into the muscles to disconnect the brain from what it is perceiving as pain. It causes a kind of reset of the sensory system. I was apprehensive but trusted the team. The results on my first try have been pretty impressive. I’ll be anxious to see what happens the rest of the week.
I know many things work together to cause us to present the symptoms of fibromyalgia. Cognitive issues have been one of my main complaints. I am hoping that reduction in pain, improved sleep and eliminating medicines will help me regain some focus and problem solving ability. This is a total shift from the treatments I have received over the past several years. The idea is to put not just the responsibility but the capability into my hands to determine how I will function with chronic pain.
I just received an email today and it looks like they will be denying my claim for long term disability. The results of the Functional Capacity Evaluation showed that I am able to do light sedentary work for 8 hours. Of course what it didn’t say was that they performed the wrong tests to correctly evaluate Fibromyalgia or that the test needs to be performed over a period of days to get a good indication of the delayed flareups that are caused by too much exertion.
The other thing I find interesting is those were not my complaint. My employment was in the Information Technology field where I was expected to work 50+ hours, be on call 24X365, and work the mid shift once or twice a week. I was also having problems cognitively and being able to perform the technical aspects of my position.
The disability insurance was supposed to cover my “own occupation” meaning that if I could not do the work I had been trained in and worked in for 30 plus years it would cover me. They had back to work programs and training options that would have helped me to move into a new career.
There is an appeal process and I will reluctantly get a lawyer to help me with that but I’m moving on. I am looking at doing the best that we can to get some work that will keep us going while I also enter a 30 day pain program. We are considering selling our house and most of our possessions . I’ll tell about that in another more positive post.
sNow I’m done whining. Tomorrow is coffee day at the Gathering Place.
I’v been working on trying to get decent Over the Air reception for my TV over the past couple of years. First, I’m pretty cheap and just hate paying for the Dish service. Most of the shows we watch are on the top 3 and Dish doesn’t transmit some of the secondary channels that are available over the air.
My first try was actually pretty good. It was a multiple bow tie configuration that was highly directional. I really needed to build two of those and link them together. It seems like you can get most of the channels in one direction except for channel 3. I should have kept this one because it was a little more involved to build, but I gave it away and never built another.
My second attempt was only half hearted. I was trying to build a dipole type antenna that should have been omni-directional. I was going to make it from scratch and do all of the scientific measurements to make sure that it would receive the appropriate signals but I got lazy. I went to my shed and found some tomato cages that I wasn’t using and tried to circumvent the science.
This final attempt seems to be the prize. The original design comes from Taiwan where I understand their TV signals are near the same frequencies as ours. It’s made from a 7′ piece of copper wire that I formed into four 4.96″ diamond shapes. You can see the wires for the top and bottom intersections cross over each other and are insulated from each other as well. The center intersection doesn’t really cross over but bend back to start another diamond without touching. This is the point where the connection is made to the antenna cable.
The designs that I have seen on the web always show a 300/75o
hm balun to make this connection but I just connected the 75ohm cable directly to it and it seems to work great. I probably should look up the reasoning for that. I’d hate to blow up my 50″ Plasma.
So the only thing left now is to get easy access to a TV guide and something that can do DVR like functions. I’ll save that for another post.
Another great day on the Fibro journey. I got up sometime in the middle of the night with a panic attack. Of course there’s only one way to get over those. Fix a bowl of ice cream, salted nuts and chocolate syrup! Not sure what time that really was but I woke up around 9 and laid in bed in pain for the next hour and a half. Eating breakfast, checking the mail, getting my head together and I was ready for action by one in the afternoon.
I did get the back yard mowed, pulled some weeds and cleaned the retaining wall in the front but that was all the steam I had for the day. By 3 pm I was sacked out on the couch for a short nap.
6 pm brought a visit to the park. Oh yeah that’s the title of this thing. Had a nice evening listening to the Evans family play at the amphitheater. Bernie Evans, the patriarch, has been known in the Glenwood area for years as a musician, teacher and fixer of musical instruments. And now after seeing the family play. I’m not sure about the patriarch bit.
There were a number of family members his age or older so there’s probably much more that I never knew. We also had the pleasure of hearing the kids from my era play like Kelly and Tim. Tim’s not actually an ‘Evans’ but he just as well be. He’s been a part of them for years.
But now it’s almost midnight and I hear the Kluft calling.