Month: September 2013

What a difference a day can make!

Yesterday, I reported a pretty tough day. Reflecting on it. I find it interesting to think that there is no rhyme or reason to a Fibromyalgia flare up. I can’t tell you if it’s from the physical therapy or the change in weather. I guess it could be for no reason at all and it really doesn’t matter. I understand it better and I react to it better. A flare up in symptoms doesn’t have to result in a flare up in my response.

Today, Denise joined me for the day. She got to participate in the lessons, some exercise and Yoga. I also introduced her to our form of icing. She seemed to think it was cold J but she stuck it out for the fifteen minutes. I was glad that she got to sit through the class on the neuroanatomy of pain. That’s a really good lesson on how to think of the treatment of pain in a whole new way.

We had our session on reviewing our goals from last week and setting the goals for next. I looked at the problems I had with pacing. Since Denise was there I was glad that she could listen to the recommendations of the PMP team and help me consider how to set my new goals. I’m also glad that one of my goals included picking up the guitar again for recreation. I had considered selling it because of a lack of interest. I used to enjoy music just because the theory challenged me. It will be nice to get back to that hobby.

I was really pleased to find . . . that even through the pain, I improved.

I was also measured today for my progress in flexibility. The goals that I set with my PT was to maintain or improve my flexibility. She had told me that I was near the top of the normal range and within the margin of error. I was really pleased to find that in several cases I had exceeded the top of the normal range. It’s an eye opener to have a bad day like yesterday where any movement hurts and you feel like you’ve been set back a week. (a thought that is all in my head) then to find out through an objective measurement that even through the pain, I improved.

s

https://www.the-jacobsens.com/2013/09/pain-management-program-day-18.html

Good Morning Nervous System!

Yesterday, I shared about the manual therapy that I received and the warning that I may be sore today. And then it rained all night. I’m not sure whether it was one, the other or both but my system was at full throttle. I had restless sleep. My top sheet, blanket and bedspread were turned every which way. I remember waking in the night not able to find any of them and then trying to toss them all around to cover me. I wasn’t surprised when I woke up thinking this will be a long day.

So tonight I am wanting to share what my day was like. I’m going to stay away from the “pain talk”. It’s not good for me and it’s not my intent to set the stage for how bad my day was or was not. But I want to acknowledge that I’m going to have days like this and there are ways that they are perceived by me and how others see me when I feel this way. I also want others that have chronic pain to get a picture of what it looks like to continue to pace through a bad day.

Every morning we start with group exercises. I was the first to the gym, started the coffee and had my mat ready to go before anyone else arrived. As we started the exercises I was being quiet. I tried not to grunt and groan as I moved from one position to the next. The PT that was leading our session made a remark that she was trying to get me to smile. I’m not sure she knew that I was having a flare up.

My next session was a lesson about anger management. I did fairly well as far as staying connected with the presentation but I kept stretching, rubbing and guarding as the pain was working my body. After that I met with the psychologist. I struggled with the thought that I didn’t want to bring up the amount of pain I had this morning. But I also knew he could help me work through the mental anguish I was having over the flare up. He had told me that if I hadn’t mentioned the pain or the flare up he wouldn’t have known. There is another participant in the program that I have spent a lot of time with. We have ‘clicked’ as far as encouraging and prodding each other. I thought for sure that she would have noticed. When I mentioned it to her she said no.

So that’s how the day continued. A class after lunch on communication, and then a session in the therapeutic pool and ending with a progressive muscle relaxation session. All afternoon I felt like a train wreck. I kept thinking through all of this that I needed to stick with the plan. This is the time when I get to tell the central nervous system that it is being inappropriate. All of the previous days I have been challenging the nervous system with exercise and quieting the muscles with ice and the nervous system with relaxation.

Today was the like the ‘main event’ after a lot of tryouts. Tomorrow, my wife will join me in the day’s activities and I’ll take today as a battle won in the war against chronic pain.

s

https://www.the-jacobsens.com/2013/09/pain-management-program-day-17.html

Mushrooms have a high level of vitamin D

I learned some interesting things in the nutrition section today. I am however confused that tomato is back in the vegetable category. I was given a personalized food plan based on my height, weight and body mass. I also learned that I should watch my sodium and that it’s okay that I don’t eat as much meat as I used to.

Did you know that the brain is 60% fat?

I continued receiving manual therapy for the parts of my body that need extra attention. The thoracic area of my spine and the area around my Quadratus lumborum muscle are still problem areas. I’m sure there are better explanations but that is the basics of what I understand. The PT worked primarily on those areas today and suggested that I would have more pain tomorrow because she had been more aggressive with them. She also said that today could be a “3 icing day”. I tried all day to make an analogy to a “3 dog night” but couldn’t make it work.

Our second training session today was about the perception of pain. There was so much good information that it’s just not reasonable to try to share it in the blog. But there was a “pain management formula” that I recognized as a good check point as I consider the things that I have learned and to help me solidify these practices in my daily activities.

1. Pacing
2. Relaxation exercises
3. Exercise (Not the only thing on the list!)
4. Communication
5. Ice
6. No medications for chronic pain
7. No surgeries or blocks for the chronic pain
8. Meet your needs
9. Eliminate sick talk and pain talk
10. Eliminate sick behaviors and pain behaviors
11. Mood management
12. Accept the pain problem but don’t accept the disability
13. Give up the search for a quick cure (or know when to stop if you need something checked out)

Some of these have been easier than others for me. If you read last Sunday’s and Monday’s entries you’ll know my struggle with pacing. Even though I had been lethargic before the program I have an attitude that causes me to do too much when I feel good. I need to learn to pace up and pace down. Relaxation is something else that I need to develop for myself.

I gave up the search for a quick cure long ago but had accepted the idea that I was disabled. That is no longer true.

We have been introduced to a number of techniques I just need to find what works for me and integrate it into a plan. I think I have done fairly well with the exercise, ice, communication, stopping the search for medical cures and eliminating the sick talk/behaviors. I gave up the search for a quick cure long ago but had accepted the idea that I was disabled. That is no longer true. I have a pain problem that I can manage.

s

https://www.the-jacobsens.com/2013/09/pain-management-program-day-16.html

After a disappointing day of applying pacing techniques yesterday, I was encouraged today as I got back into a full schedule of flexibility exercises, endurance exercises and the therapeutic pool. I felt the adrenaline rush of the exercises and was pleased that I am continuing to increase my flexibility. At this point I realize that it is taking a significant portion of my day to feel this good. I probably end up with 2-3 hours of non-therapeutic time where I attend classes or take care of my daily personal chores. I think it will be interesting to figure out how much time I will have to devote to my well-being after the program and how that develops over time.

Accepting pain is an interesting concept.

“Everyone has pain. Get over it”. That may be a little harsh. Sometimes that is what people say who don’t understand chronic pain. But our own understanding that there isn’t a cure for our chronic pain is a good first step to developing a healthy acceptance of our pain. Then coming to an understanding that after you have increased your activity level, applied relaxation and icing techniques, and effectively use pacing, you are still going to have some level of pain. Even then we will need to find ways to relate to our pain. I was thinking yesterday that before the program I was operating a 30% of what I should be. Now, I would raise that to 60 to 80%. I’m a little cautious about that estimation since it has been so long since I have felt well. I’m not sure that I’m a good judge of what it can be like to feel good.

I was a little shocked at the “pain talk”.

Today the next class started. I had already been thinking about how different the seniors looked from their induction video to their graduation video. It was interesting to see the new students and the pain behaviors they were exhibiting. I remember very well how I did some of the very same things. Especially how my walking had almost become a shuffle. I was a little shocked at the “pain talk”. I guess I can relate to having nothing but my pain to talk about. No hobbies or interests outside of what I had been doing on a daily basis to deal with the pain. I guess it shouldn’t surprise me but it does.

I’m really looking forward to this week. I have increased my endurance substantially and I think I’ll make really good progress in my stretching. We’ll see. For now I’ll live in the moment.

s

https://www.the-jacobsens.com/2013/09/pain-management-program-day-15.html

“Failing to plan….”

Early last week we were told that one of the key principles in the program was the need to create a plan. That is so unlike me. I don’t watch the weatherman at night. I get up in the morning and go out the door. If it’s cold, I go back in and get a coat.

Waking up this morning, I was in tough shape. Being in my own bed, I knew I could just relish the pain and stay in bed for a couple of hours. Or I could get up, go through my stretching routine and ice the sore muscles. The latter won out, but then I dressed and headed out for church. 4 hours later, we got home, ate our Sunday dinner and I decided it was time to relax. So I turned on the TV and started watching football. Knowing that I needed to do my walking for the day, I got up 15 minutes later and took off for my 15 minute walk in the 90+ degrees.

Relaxation is not reading a book, not watching TV.

Glenwood, is a little hillier than the hallways of the hospital. By the time I got back, I was winded and soaking wet from sweat. No problem. All I needed to do was relax. 20 minutes of more football. It didn’t take long though and I was thinking I needed to finish that concrete project on the front porch that I had started yesterday. I was going to be gone all week and didn’t want to leave that unfinished. An hour later, it was time to clean up, pack and leave for the hospital. Of course Denise wanted to make two shopping stops on the way. I think you get the picture. My pacing really stunk today.

I needed to take from one of my earlier blog entries. Relaxation is not reading a book, not watching TV. It’s an event focused on relaxing the muscles and body. Even though Church is refreshing spiritually, it can also sometimes be physically taxing. Especially without taking a break for four hours. Then when I did take time to relax, I didn’t really relax. I could have used another session of icing by the time the afternoon was over. Now that I’m back in my room at the hospital, I am wasted.

How will I adapt my day to fulfill the requirements of a job yet still have time for the relaxation periods?

This kind of day is pretty typical of my weekends. I like to get things done. What I need to figure out is that I can’t go at that pace any more. I need to spend very deliberate time taking care of myself. I also look forward to the end of the pain program and what it will be like as I return to the workforce. How will I adapt my day to fulfill the requirements of a job yet still have time for the relaxation periods that I need to refresh myself and reset the central nervous system? I know that this seems like a rambling entry today but I think it really does reflect a key problem that I will have to deal with as I adapt to a new life style.

Okay, that’s it for tonight. Time to relax!

s

https://www.the-jacobsens.com/2013/09/pain-management-program-day-14.html

“Life without Lyrica”!

I reported earlier this week that I had stopped Lyrica and that the flare ups were minimal. I think I was a little premature. Yesterday and this morning were interesting. My nervous system must have figured out that it was no longer being suppressed by the medicine. Sleep was poor and the sensory activity was very high. It took extra effort to get out of bed and start the stretching routine. The motivation was the recent experience of pacing. Do what you have planned for activity and relaxation and your nervous system will come around. This morning I’m writing this ‘post icing’ and feeling fairly decent.

Do what you have planned for activity and relaxation and your nervous system will come around.

Yesterday was a fun day. The class that had started two weeks ahead of us was graduating and some of their family members came to participate. I got to see a video of one of the guys of how he was at the start of the program. I couldn’t believe how stiff he was. When I had first seen him two weeks ago, he had already made so much progress that I would have thought it incredible. We had a group session where each of us talk about our progress and get feedback from the other class members. The daughter of one of the participants had share that it was “nice to have my mom back”! An indication that our pain has taken us away from our families.

I had completed the endurance testing that is done at the end of the week. I’m feeling really good about the walking and bicycling. We walked around the Med Center and Clarkson campus for the test. Miscalculated our time and I ended up walking 5 minutes longer than I was supposed to. I still had a good heart rate so all was good for that. On the stairs however, I’m stuck at 4 flights. My heart really doesn’t like going up and down the steps. But I’ll be patient. I know that I have had a sedentary job for many years so I’m not in the best shape anyway.

I also had physical therapy evaluations and manual work completed. I continued to gain flexibility and now my goals are just to keep improving. I’m within the margin of error for maximum flexibility in my arms. I still have considerable stiffness in my chest area and around my hips. The physical therapist that works with me does an incredible job of explaining all of the things that she is working on for me. I appreciate the idea that they are creating a complete plan for me to get me over the most restrictive mechanical dysfunction that I have and then providing me a way to maintain the flexibility after I leave.

So today I have a good start. I have a number of chores to get done around the house. I’ll be using them as my activity and working in the relaxation periods for some effective pacing. Hopefully, I’ll do better than I did last weekend.

S

https://www.the-jacobsens.com/2013/09/pain-management-program-day-13.html

“Who’s in control”?

I had a little bit of a slow start today. I got up 15 minutes late, I was in a little more pain before exercises (not that we talk about pain), and my head was just in a fog. One of the PT’s mentioned to me several times that it appeared that I was thinking or mulling something over. It had rained this morning so I’m sure there was a barometric change and I have just stopped taking Lyrica. I’ll have to let this bake for a week or so and see if things mellow out.

I struggled with this morning stretches. I was catastrophizing a bit, thinking that I have reached my limit and was not going to make it through. But in the back of my mind I knew that I would feel better after the stretches and icing. Over the last few days I have noticed that I am missing the very top of my shoulders when I am icing. One of my classmates told me how she wraps the ice around her neck and it lays over the top of her shoulders so I tried that. Once I got settled in, all I could think about was how I was going to freeze the arteries in my neck and I was going to pass out! I survived and the muscles at the top of my shoulders were thoroughly numbed!

Today we talked about desensitization. To understand it we had to first talk about how we get over sensitized to what ever it is that causes us an irrational fear reaction. Starting with maybe just a change in our patterns of behavior we can let it get out of control until it becomes a full blown phobia. Then the process used to desensitize us is to create a baseline tolerance of the thing that we fear (i.e. ability to stand in 1″ of water for someone who is scared of water), introducing an increase, expecting a response and then working to make that level tolerable. Repeat, rinse and dry.  That is the pattern used in desensitizing chronic pain.

The endurance exercises are getting more demanding. Yesterday I had time during the day to get them done. Doing them in a relatively short amount of time I built up a pretty good adrenaline rush. Today on the other hand I wasn’t feeling all that great and I didn’t have much extra time so I had to fit it in when I could. Late this afternoon I was walking through the hospital and caught my self evaluating the way that people were walking.

Through the past two weeks we have learned a lot about how to walk correctly and how our body needs to be more flexible. We used the the stretching, physical therapy and endurance exercises to reinforce the teaching. As I was looking at how people walked or stood, I was wondering how long they have limped like that or why they were guarding themselves. I also ran through my head what I’d like to say to them to encourage them to correct the patterns. Crazy. I wonder if that will be a permanent thought pattern for me now.

s

https://www.the-jacobsens.com/2013/09/pain-management-program-days-11-and-12.html

I was diagnosed with Fibromyalgia in 2005. I’m not sure how long I had been experiencing it before then so I generally say I’ve had it for eight years. I have tried a number of treatments including massage therapy, Chiropractic, medications, herbals, tens units, and Epsom salt baths to name a few. To a varying degree they all had their moments some better than others. My favorites were probably the massages and baths.

I don’t think anyone can say with 100% confidence how Fibromyalgia starts. Most will say that it starts with some sort of shock to the central nervous system. I lean very much that way myself and look to an exposure of mold and rat poison as the event that started my journey. Recently I have been introduced to the Pain Management Program at the University of Nebraska Medical Center.  What I have learned is so strikingly extraordinary, that I want to share it with anyone who has been troubled with pain. Not just that of Fibromyalgia but any chronic pain that is no longer attributable acute injury or disease.

Fibromyalgia is often described as an over sensitization of the central nervous system. This makes a lot of sense to me. As I consider the many symptoms that I have experienced each one of the can be related back to improper responses of the central nervous system. Sensitivity to temperature extremes especially cold, Irritable bowel syndrome, pain, lights, noise to name just a few. I find it interesting that the UNMC Pain Management Programs treatment of pain targets the improper responses of the central nervous system to pain or absence of pain. But in doing so they are providing tools that help me affect many of the symptoms that I experience beyond the basic pain that everyone associates with Fibromyalgia.

One of the key areas of emphasis in this program is the elimination of pain medication. Especially narcotic or opioid based medications. It’s one of the determinations for entry into the program that “no further medical, surgical, and or pharmacological techniques are appropriate to manage your pain“. I don’t think I need to discuss the problems with long term narcotic usage here. An interesting topic for me however is neural plasticity.

I have included the link because I’m am far from the best person to explain neural plasticity in technical terms but I do understand it very well from a personal perspective. Basically this pain is a learned response to either the initial injury, a persons guarding response to the injury or both. Once it is learned it doesn’t stop. It can also spread through homunculus sensory map smudging. This is the map of all of the nerve endings in your body. As you guard and immobilize your body it becomes unclear as to where the pain signal is really coming from. So what started in the lower back now involves the middle back and upper legs. As you know the ankle bone is connected to the …. You get the picture.

So let me get back to the UNMC PMP. If I had to describe to someone in a nutshell what the program does I’d say “They teach you how to retrain your central nervous system to respond appropriately to pain and relaxation”.  Their approach consists of three key elements:

• Psychology
• Physical Therapy
• Nursing

The psychological portion of the program addresses many issues including our thoughts about pain and it’s affect on our life, the neuroanatomy of pain (how pain signals travel in the central nervous system), relaxation and meditation techniques and the affects of pain on our social and family life to name a few.

The Physical Therapy sections include exercise, and more exercise and more exercise. Actually this is a very closely monitored program starting at levels appropriate for each individual and then increasing. They teach about desensitization and re-activation of the nervous system and muscles, and how to use icing therapy to disconnect the nerve endings from the brain and get them to reset. Probably the biggest exit strategy is pacing.

I want to take just an extra moment to talk about pacing. As I described in a facebook group for people with fibromyalgia, pacing is creating a list of activities with multiple categories. At least two types of activities are required. Exertion and relaxation. So think of it as chores and relaxation. Or you could have 3 or more. Chores, relaxation, and fun. Where chores and fun are exertion and relaxation is well… relaxation. Notice that relaxation is not fun. it’s not watching TV or reading a book it’s a focused and planned period of actively working on relaxing in a manner to promote healing and restoration. I took that from the book!

This plan of cycling through the activities and relaxation is just that it’s a plan. You do it regardless of the pain you experience. The pain is taken out of the drivers seat and you take that position. This means that when it’s time to relax. You do it. You don’t push through because you’re almost done. You don’t do all of your chores because you’re having a good day. You stick with the plan. This is a training session for your central nervous system. You also pace up or pace down. Many of us with pain have become lethargic and need to step up our lives to get to a more normal level of activity. Others need to pace down and quit doing so much that we send ourselves into tailspins.

Finally, there is nursing. As I indicated before, the program is not about treating the pain with traditional medicine. Their primary goal is to get people off of the narcotics (which I am not on) but I have am on Lyrica. Which I understand tries to moderate the impulses of the central nervous system. So why should I depend on the medicine to do what I can do myself through activity, relaxation and pacing.

I hope you have found this information useful. For me it has been a very refreshing journey in my travels from chaos to control. I’m learning to get control in an area that has really disrupted my life.

s

I was thinking today that the titles of my posts are pretty boring. I should be naming them according to the best revelation of the day! “Icing! One bag short!” Would be a good title today! The first go around I used two bags. One mid back and one in the lower back. During our first group session, I was thinking “Wow, wish I would have had a bag for my neck and shoulders. The second icing I opted for the hips. I’m going to do regular cold pack on my neck tonight before bed. Based on the progress I have been making with the ice, I think it’ll be a full week or more of twice daily icing.

Today during one of our group sessions we discussed cognitive behavioral therapy (CBT) and irrational beliefs. The idea is that we can create patterns in our responses where we deal with situations irrationally and cause a physical stress response. We can appraise the situation and have responses of fear, sadness or coping. These are necessarily bad responses unless we do it in excessively. Part of our exercise was to document situations that were stressful and then decide if our responses are irrational. This is a skill that we can continue to use as we review our days and plan for the coming week.

Since Wednesday night, I have been taking my Lyrica every other night. Tonight I’m scheduled to take it. I think I’m done. I really haven’t noticed any flareups on days that I haven’t had it. I guess that deserves a whoo hoo! Another whoo hoo! goes out to maxing out on my fast walk. We are timed while walking 180 feet. I started out at 32 seconds and was given a goal to improve by 2 seconds last week and this week.  If we get it down to 20 seconds we get to stop doing that particular exercise. So I pushed that one. It was easy. Part of it was getting the pace up, the other was technique in timing, and making the turn for the round trip. My other exercises have maximums as well but when I reach them I will just go from doing them twice a day to once a day.

The second group session today was about pacing and activity management. That was a really good topic to discuss after coming off the long weekend. I’m starting to get a feel for what it will take to maintain my activity when I leave the program. Being the linear thinking person that I am, I added up the total time of exercises if I max out each one of them, added in appropriate rest periods and icing/relaxation and came up with about 90 minutes. I’m not sure if that will be required every day or if I can split it up two every other day. I look forward to replacing some of the exercise activity with work activity after I am out of the program.

s

https://www.the-jacobsens.com/2013/09/pain-management-program-day-10.html