Doleys Pain Clinic Consultation

At 4:53am on August 24, I picked up Rob Hodges at his house. At 12:47am on August 25, I was finally returning him there. This is the story of everything that happened in those 20 hours.

We made this long road trip so I could go for an initial consultation at the Doleys Clinic, a comprehensive pain center in Birmingham, Ala. This was one of the three pain centers suggested to me after my time at the Mayo Clinic in April/June. It consisted of three appointments, a 10:00 am with a physical therapist, a 2:00 pm with a pain psychologist, and a 3:30 pm with a medical doctor.

We ended up getting there around 9am, which was quite early, but it is hard to plan traffic for a 290 mile journey. I’m glad we did get there that early as they had the standard amount of paperwork to fill out, as well as a huge 370 question true/false exam. It is a standard psychological test, asking questions like, “I like to read poetry”, “I know that someone has it out for me”, “I like to gossip”, etc. Rob graciously helped me physically fill out a large portion of the paper work, including the entire psych exam. We went out in the hallway outside the office so we wouldn’t disturb other people, and I’d just lie on the floor and just rattle off the number of the question and either true or false. “182. true…. 183. false…. 184. false….” It took like 45 minutes.

We weren’t even done with the rest of the paperwork when I was called back for my first appointment. I met with Maureen Crocker, the physical therapist, and we mostly talked about my medical history for 15-20 minutes and then she gave me a brief physical exam. With the long road trip and the “physicality” of the paperwork I had already filled out, I was already really sore and uncomfortable in most any position. So I spent most of the time with her trying to find a comfortable position on her exam table and even the floor. She didn’t really tell me much or give me any directions or instructions, it was mostly just a fact-finding mission on her part.

In the couple of hours that we had in between my first and second appointment, we went and grabbed some lunch at Arby’s and also just rested out in the car in the windows down. It was a very nice day, not too blazing hot, and it was good to just relax a bit. We went back to the clinic by about 1pm to try and see if I could get in early. I wasn’t able to, but they did have air conditioning and the movie “Rio” showing on a continual loop on the waiting room TV. We had seen a couple of minutes of it prior to the first appointment, and as the rest of the day went on, we probably saw the whole movie two (almost three) times, though never all the way from beginning to end. It’s a great movie, and definitely recommend it. #gazebo-ebo

Anyway, on to the “main” appointment, which was with Dr. Leanne Cianfrini, the pain psychologist. She was really cool and personable, and really cared about my situation, despite just meeting me. She told us about the day treatment program and how it is structured and what to expect. It was lot of what I already knew, the types of classes and exercises to expect and how it is an 8-hour-a-day/5-day-a-week program and generally runs for four weeks.

This program won’t be doing too many things that I’ve never seen before, but rather will be able to better assess what things are working and what to continue. The physical therapy I had done in the past generally was a once a week thing where I met with the therapist for 20 minutes. They wouldn’t be able to see me on a day to day basis, and I probably didn’t know enough to see if there were minute improvements in my condition.

Also, the thing that I have struggled with the most is knowing when to press through stuff when it seems that something isn’t working. Like most people, I don’t want to be doing something that has no point or purpose, or that isn’t creating results. On the other hand, I don’t want to quit something just because it is hard at the time. But it is difficult from my position to discern which is which. I don’t go walking with a walking buddy anymore, because I wasn’t really sure that it was doing anything positive other than the enjoyment of spending time with a friend. I’ve stopped using heat or ice packs because they seem like a waste of time and effort with no positive side. I’ve stopped going to a friend’s apartment complex to swim in their pool because while my time in the pool is relaxing and enjoyable, I feel that it is just undone with all the pain and discomfort created by the getting ready/driving/walking/post-game shower/etc. The close and persistent supervision of this program will be better able to assess what pain is simply pain and should be pushed through, and which is actually harm and should be tapered off.

A direct example of this came in the middle of this appointment. When I came in, I looked at the couch and saw it was fairly short to stretch out on, and the chairs didn’t look comfortable, so I asked to lie on the floor. She let me, and her carpeted rug is one of the most comfortable things I’ve laid on in a long time. Though later she said that despite it being comfortable I should try and not lie down as much as I do so that I can engage my core muscles and stave off any sort of atrophy. So due to her challenge, Horizontal Man’s days might be numbered, if only because she’s “making” me use chairs more often now.

The one thing that she did bring up that was new information was that I had the opportunity to break the normal four week program into two two-week chunks. One of the downsides with this program that we’ve known is that they require payment at the beginning of each week of treatment. So I felt I would need to have enough money for the whole program before I ever start, or else risk having to stop halfway through. However, they do have it set up to have that be an option. However, it isn’t as simple as doing two weeks whenever I want, and then come back for two weeks whenever I want.

This is because they wait until they have a small pool of people before they start each program, so that there can actually be a group for group therapy. They tend to have one program each month, and the next one is starting on September 12. So, for example, if I were to do the 2-2 split, I could do the two weeks at the start of the September program, and then wait until their next program, which would probably start some time in October, wait until the final two weeks of that program and rejoin to finish the overall four weeks of the program.

That option sounds great, since we are going to have to do a lot of fundraising for me to go to this program. It costs $2500 a week, and that doesn’t include housing or food. I don’t know what possibilities are out there to stay with a family for my time there, or some other way to help with expenses, but once we sort of decide on specifically when I’ll be going, we can cross those bridges.

Going for the 2-2 split enables me to start treatment with a smaller pool of money, and hopefully, after just those initial two weeks, allow me to work more at my part-time online job and start progressing back to being normal. However, if I were to do the 2-2 split starting in September, I doubt I could do my second two weeks in October as I’ll be in weddings on the weekends of the 15th (sister, Jen) and the 22nd (Rob Hodges). They don’t know when the October program would happen, but it is possible that their final two weeks would be during that time, and I’d need to wait until the final two weeks of an even later program to finish everything. I don’t know if that would be as good, if the two-week periods are separated by 10+ weeks.

The final appointment was with Dr. Christopher Hill, their medical doctor. This appointment ended up being the shortest of the three, but because it was so late in the day, he started running behind and it was almost 5:30 pm before I was seen.

Most of what we talked about was a continuation from my time with Dr. Cianfrini. She had brought up additional medication possibilities, both for when I attend the program, and also things I could start now if desired. The drug that she wanted me to start trying right away is called, Savella. It is one of the three main medications for fibromyalgia, the others being Cymbalta and Lyrica (which I have tried with no success).

I knew about Savella, as a couple of other doctors and I had discussed the possibility of starting it over the past few months. The reasons we had not tried it were mainly financial, but also medicinal. The drug would be very expensive, my co-pay running $50/month. And being unable to work, or make enough money on my own to pay even my basic expenses, that sort of financial burden would be difficult to take on. So, I would voice these concerns to my doctors and ask if they feel the drug would be worth that financial investment. Each one would say that while it is a new drug that possibly could help, and has helped many others with fibromyalgia, they don’t feel so confident that this one will do so much better than the others that have failed, especially when it would be such a financial burden for me.

So I told that same story to these doctors, and Dr. Cianfrini said that they can just give me a bunch of samples so that I can try it for free and see if it is effective or not. Since that removed the one main reason why I wasn’t taking it, I decided to accept her advice to try the Savella. Even though I’m not super-optimistic that it will work where all the others have failed, it is still worth doing. It’s not that I thought the drug was dangerous or bad, I, and my doctors, just didn’t think it was worth $50 a month. And if they are going to let me start out on it for free to find out if it works, then sign me up. Dr. Hill was the one to further explain the medication and its possible side effects and the process of gradually working up to the target dose.

Savella isn’t a drug where you can just start and stop at any time, it requires a progressive increase and decrease. Because of this, the samples come in two-week starter packs. They explicitly lay out what should be taken on what day and at what time. It starts out with a small pill once a day, then on Day 3 you move up to a small pill twice a day, then progressing to a medium pill twice a day on Day 5, finally reaching the target of two large pills twice a day by Day [9]. Dr. Hill said that they’ve seen that patients see better results if they actually take to starter packs and progress up the dosage even slower. So, what I’ll be doing is taking Day 1 of pack one, then the next day taking Day 1 of pack two , then Day 2 of pack one, and then Day 2 of pack two, and so on. It is intended to allow for a better acclimation to the drug, and lessening the negative side effects.

As you can see, there are a lot of decisions that I need to be make with my “financial team” of friends and family to figure out what is the best option. My family in Wisconsin, and my friends in the southeast will be putting together plans for fundraising in the coming weeks and months. There are a core group of friends that are helping on a monthly basis with my basic expenses, but there are hopefully other friends and acquaintances that would possibly be willing and able to help with this one-time event of going to the pain clinic. I’ll be posting more information on that in the future if you are interested in helping in any way.

Thanks again for your prayers and support in all of this, and also reading this 2100+ word blog post. It’s been a long road, and will probably be a long road ahead, but I couldn’t have made it, then or now, without the support of my friends and family.

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