Well, there is no shortage of changes, no shortage of frustrations and sometimes no shortage of hope. The most recent news is difficult to get through. The physicians are getting risky with their suggested treatments and I’m really having to decide just how much I am willing to gamble. I feel, after the hyperthermia trial in Holland, that I am done with the experiments.
Now I am at steroid injections and am stopping that unless they are done radiographically. I was a neurologist’s office last week and she gave me 6 injections trying to hit the piriformis muscle. I feel terrible now and over the last week it’s been hell. I was supposed to go today for a shot into my neck and begged off. She’s made an appointment to do a repeat one radiographically but this being Canada I have to wait a couple of months…She wants to do botox injections into the muscles. I am totally uncomfortable with that and want a second opinion.
Fortunately, I see Dr. Badhi sometime in September. He is a rheumotologist.
Dr. Devonshire spent the first session with me telling me I had fibromyalgia and I had to change my medications, etc. Then she wrote a 3 page letter to my family doc and never even mentioned FM. I am on the trazodone and have gone from 100mg-150mg. If that doesn’t help with the sleeping she wants me to try noritrytiline and come off the trazodone.
I have to come off the clonazepam because she says it does weird things to memory. Like whole pieces can be missing. I thought that was the pain. But I have to come off the 2 mg at night over the course of a year by about 1/4mg a month or less. I’ve been on this drug through the sleep disorders clinic for 15 years and it all scares me to death.
She has also added Cymbalta 60mg for pain. I’m supposed to give it a month. More drugs that do weird things to the brain.
The fentanyl patches stopped working all of a sudden and I am back on 60mg MS Contin twice a day.
Last night the leg cramps came back for the first time since I saw Dr. Barrinag…it was terrible. All this from messing around and getting poked repeatedly.
My friends in San Miguel, bless them, are helping me out. I’ve written a letter to the good doctor in Queretaro to get his opinion and see if he thinks he can help me.
I’ve phoned the neurosurgeon here and he’s ordering some more imagining. I do not want more surgery but I need to know what I am up against.
I hate it when I sound whiny. The whole situation is going downhill again and it’s hard to keep fighting back. I have a new Spanish teacher coming to the house tomorrow. Maybe that will take my mind off the pain.
I’m able to walk a little. Can only stretch the hamstrings right now. Anything else throws the back into spasm. No matwork. But the quinine has taken away my appetite and I have managed to lose 12 pounds. 4 to go.
Good luck to everyone else. I hope that things go better and just as I need to remember, a positive attitude also takes us farther.
Besos
Dar
