Found this site today and it has some interesting ideas on pain management, especially the idea of “Negative Writing.” The premise is you spend 10-20 mins twice a day writing out all the negative junk in your head. You immediately then destroy the paper. Supposedly, there is some scientific evidence that this activity helps to create new neural pathways and can be therapeutic.
Here’s the link:
After watching Dr. Clauw’s lecture (see in post below), I decided to look up some books on pain management and came across this one:
Managing Pain Before It Manages You by Margaret A Caudill
Here are a few excerpts I highlighted so far in the first chapter …
The fact that you may be sad, angry, or anxious about the disruption of your whole life as a result of the pain experience is both understandable and normal.
Accepting ownership of your pain [ …] means acknowledging that you are a worthwhile person, that there is a point in doing something, and that you do have choices.
The fact is that a lot more can be done about the emotional response to chronic pain than about the physical experience.
Changing your awareness changes the pain experience.
I’m not ready to give up. I’m not ready to let my pain control my whole life. I am going to fight. If I can’t fight physically, than I will fight mentally and use every tool I can find. I ordered several other pain management CBT type books, but this is the one I am starting with.
On the pain front:
Very little sitting today. Just brief periods of lying on my bed. I’m uncomfortable, but it’s bearable when I stand. I have lost nearly 15 lbs since this pain started at the beginning of March. This week, I have no appetite. Not sure why. I need to lose weight anyways, so I am not super concerned about it. It could be the prednisone. I am on a round of it for 16 days. So far, no relief that I can tell of for the burning sensation. I start Methotrexate tomorrow night. I am afraid, but the only way around fear is to go straight through it. I also made a gynecology appointment for next week to rule out any lady problems.
Think I will go hug my daughter and husband now.
Does anyone know of an online community/message board for those with autoimmune diseases? I have Googled and clicked and all I seem to find is a general health board with an arthritis sub-forum (that is usually not very active).
Is anyone out there interested in joining such a community? I am in the beginning stages of this disease and I do not have as much experience as others, but I do know how to set up a message board, and I would be willing to do so if others were interested.
One of the lifestyle adjustments I’ve had to make since the onset of my pain is setting up a completely different workstation. Admittedly, I have spent a LOT of time sitting – like years. The back pain that started several years ago limited my activity so much that I sort of gave up trying exercise because it always resulted in pain. As a photographer, my work also requires many hours of sitting and developing photographs on computer software. This adds up to many, many hours of sitting. I absolutely believe all this sitting has contributed to more pain. I doubt it’s the cause, per say, but it makes things even worse.
So, I took the plunge and bought a stand up desk with a treadmill. I bought the two parts separately. The desk itself was fairly easy for my husband to assemble – and he is not very handy – but parts of it are heavy, so be careful about lifting! The treadmill arrived fully assembled. Besides being packed to death, it was super simple to set up.
It has been ten days using my new workstation. I must say …. I absolutely love it! I am on it right now! Walking and typing away. I go very slow – 1mph. But it adds up, and usually I do 4-5 hours per day on it. That’s 4-5 extra miles. I have lost 3 lbs and haven’t changed my eating habits at ALL.
I am not sure at this point how much it has helped pain. It helps while I am on it and using it. I feel the least amount of pain while using the treadmill, but the pain is the same when I am not on it.
I will give updates as time goes on and I have more experience with using it. Here is where I purchased the desk and treadmill.