On Monday, I saw my rheumatologist at Boston Medical Center—regular appointment, well-timed. It’s been a tough couple of weeks, pain-wise, between my back issues and very irritated digital ulcers. So there was a lot to discuss, first with the Fellow, and then my doc.
But, in the end, it all came down to basics: Yes, I have a muscle spasm in my back that will take more time to heal on its own. And, yes, my seven finger ulcers and left ankle ulcer are taking forever to heal, per usual. No real options but to be fastidious in my care and wait for warmer weather. My infected knuckle has cleared, and I can stop the antibiotics. An X-ray of my left thumb revealed a galaxy of calcium deposits. At present, they don’t hurt, and it doesn’t make sense to undergo more hand surgery to remove them, because the trauma caused by the surgery would probably be worse than just letting them float for now.
My right eardrum is not vibrating properly according to a hearing test I had recently, due to an inflamed eustachian tube for the past year. But my doc agreed with my assessment that the procedure recommended by the ENT—which involves inflating the eustachian tube with a tiny balloon—is not worth pursuing because the research I dug up stated that it probably requires a general anesthetic, given my very narrow nasal passages, and is only successful 30 percent of the time, with no proof of lasting effects.
I decided to pass on a back X-ray recommended by the Fellow to check for any skeletal issues, because I’d already had one X-ray that afternoon of my hand (enough radiation exposure for one day) and there wasn’t any real indication of bone issues with my back pain. I accepted a prescription for medication to relieve the muscle spasm. Can’t hurt to try it overnight and see what happens. It only cost $1.42. I picked it up on my way home, along with a couple more thermal packs for my back. (Thank goodness for those thermal packs—only way my lower back could withstand the 100 mile round trip drive.)
The best thing I did for my back last week was to get a good electric heating pad, rest, read and do stretching exercises. The best thing I did for my sore fingers was to stop typing. There is no magic pill for any of this stuff. Only a boatload of patience, common sense and determination to keep on going.
Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.
I also have multiple digital ulcers from systemic sclerosis. I have just started getting amnionic fluid injections followed by dressing with amnionic membrane at the University of Utah. These are done by a burn specialist/surgeon who has had great results with burns and digital ulcers. It’s too early to tell for me.
I was referred to her by Dr Tracy Frech, scleroderma specialist. Perhaps this is available for you?
Hang in there.
Thank you, Evelyn! I have not heard of this treatment. Will have to research it. I hope it works for you! Thanks for your support.
I am so sorry you have all these issues to deal with, Evie. Regarding the back pain, David has chronic problems with it, too, and has gotten some relief from placing a TENS pack on the afflicted area. Most drug stores carry this device, which delivers a sort of micro-massage. (In fact, we learned about it from our therapeutic masseuse.) I’ve probably already touted the benefits of chiropractic to you, as well. Nothing else relieves my chronic arthritis pain.
Thanks, Pat. I’ve seen those devices. Will check it out!
Hi, how do you think taking Tracleer (Bosentan) has helped you with the digital ulcers? And did you have any side effects with a long term use? Thanks.
Hard to say, Charlotte. I can’t definitively say that it’s reduced the number of ulcers, because they are so chronic. I do think it has mitigated worsening of my exercise induced PAH. No negative side effects for me. I have routine liver function tests and they have always remained normal, thank goodness, for years.