Many of you have written to me indicating that you are in flare for long periods of time and that you are just taking it day by day hoping for the flare to break. It has been my personal experience that I flare quickly and it ends very quickly. Sometimes just sleeping is enough for me to find myself out of the flare and right back to feeling my normal base line self. Something different is happening to me right now and really since November 18th which was 2 weeks ago. I put myself into flare with a trip to a football game and sitting out in the cold too long. Ever since that Sunday my hands have been so swollen and my ankles are now cankles. When I get this type of fluid buildup in my body of course my joints start to hurt as well. I’m suffering from arthritic pain in my knees, hips, feet, elbows and hands. Especially my hands which are the worst place for me since I need to use my hands all the time like most people.
This type of pain is now becoming aggravating so I did something I didn’t really want to do but knew I had to make a choice to find some relief. I was expecting regular Bikram practices to release the fluid and using sauna therapy to keep my joints warm. Although, both therapies are wonderful I wasn’t getting the type of relief I so desperately wanted. My plan of action was to go back up on my prednisone. I had gotten down to 4mg so I went back to 5mg. Within a day I was already feeling better. My knees and hips were not hurting nearly as bad. My restorative practice yesterday was much more enjoyable on my hips. The fluid is starting to leave my hands and feet showing a distinctive difference between my ankle and calf. I still have a lot more fluid to release and will continue with my Bikram therapy but I’m feeling better. I will need to stay at 5mg for at least a week and start to wean off again to ensure that I’m completely out of this flare state and not throw off my body to badly.
I really was so happy to get to 4mg of prednisone and considering how long it took to get there I realize that it might take me several months or even a year to get there again but I had a decision to make about feeling better daily or hoping that eventually one day I would feel better. I knew increasing my prednisone would give me instant relief which is why I did it. I have also thought as prednisone as my cure-all drug but there is a fine line between having it make me feel good and it being too much and not feeling good. Also, it is a drug that I hear about people getting off of all the time and I think to myself that I want to be one of those people. I know it isn’t good for the internal body but it certainly helps making daily living much easier.
There are fine lines and decisions that we must all make for ourselves. What works for one doesn’t necessarily work for someone else. The hope is that we all find what works for us and find a way to make living easier and enjoyable. Chronic pain is neither enjoyable nor living life to the fullest. I hope you all find your solutions in your challenges with MCTD