We had two doctor visits last week – and both were fine, good even. I am very thankful for that because life is still a bit crazy here and a bit of ‘nice’ was much needed: my grandfather was taken off of life support earlier in the week and is slowly passing, lingering longer than anyone thought possible. We know we are facing a funeral in the near future but just don’t know when it will be. This after we buried my grandmother (his wife) on the 5th. It has been a very long couple of weeks.
The first visit of the week was on Thursday, with the pain doc. I won’t bother to talk about how it had to be rescheduled twice and how Em had to get up early, then he was running late and we waited for over an hour to see him. It happens and was a pain (no pun intended) but not the end of the world. Just more to deal with in a very long week.
Anyway, we talked about trying to replace the Norco with Tramadol and saving the Norco for true emergencies. Not sure how that will go, but it is worth a try. The pharmacist pointed out the drug interaction between Tramadol and Flexeril – which I already knew about. I am nervous and concerned, but I have also read that a lot of people take both and are fine. Of course, I am also nervous and concerned about her taking Norco round the clock so we have to find what works best and weigh the side effects vs the benefits of both.
For the moment, with things so crazy around here, we are just going to leave her med routine as is and just use the Tramadol for breakthrough pain for now. Don’t know how well it will work – but she needs something and we have to try. There are too many times when she dislocates badly and or injures herself, is pale, sweating and nearly vomiting from pain and I have nothing more to give her to relieve her pain. It has been incredibly frustrating and I pray this switch is a real solution. If the tramadol seems to help breakthrough pain, we can work at switching the two meds and see how it goes. [Em got hurt last night and ended up trying the Tramadol. She said she thought it helped with the pain but made her very sleepy. I hope that it will be like all the other meds she has tried and she gets used to the side effects quickly so they aren’t an issue. But, I was pretty encouraged in that she thought it helped with the pain a bit, so we will see.] I have heard that the extended release form of Tramadol is more effective as a long acting med, but the doc said insurance may not like that so, we will try the short acting form for now.
During this appointment, I also discovered that our insurance will not pay for the compounded ointment that EDSers are finding so helpful. I am not a bit happy about that, because I know it could help reduce the amount of meds Em has to take. She could have more relief with fewer side effects. So, we may have to fight and try to get it approved. However, that battle will have to be postponed for another day – too much on the agenda right now!
The doctor ordered blood work to test her Vitamin D level, at my request/demand. I am quite sure she is deficient – probably severely – and that that deficiency is an important source of her pain and fatigue. We should get those results soon and I will post more about that then because I suspect it is going to be a big piece of the puzzle.
Bottom line, her pain is being managed pretty well – in fact, these days, if you ask her how she feels, she is more likely to say she is tired than to say she is in pain. Fatigue sucks about as much as pain, but we have options to deal with it, so we are definitely moving forward. He listened to our concerns and clearly is willing to work with us to make it better. We see him again in 3 months. We will spend that time ‘playing’ with some of her meds and trying to find the best routine we can. I wish there was a clear and easy formula for EDS pain, but it is all trial and error – that we have a doc who is willing to work with us is beyond wonderful! (So, if he is running late once in a while, we will happily deal with it!)