- Messages
- 87
- Location
- Savannah, GA
Hello, all--
I recently was admitted to the Mayo Clinic in Jacksonville, FL and was subsequently diagnosed with CFS and Fibromyalgia. I didn't feel as though I really fell into diagnostic criteria for Fibro; I'm not in any significant pain and I wasn't extensively tender at their diagnostic tender points. Ruled out small-fiber neuropathy, MS and lupus by a series of tests. Their solution was a two-day treatment program.
Essentially, they put us in groups of ten for a two-day cognitive behavioral therapy program that essentially marketed GET. I was astounded that the person that ran the program had very little information about ME vs CFS. I had raised my hand to ask a question about ME and said "Oh yeah, I read that term they call it- what is it that they call it now? Encephalo-something? That sounds scary- so let's not say it!" I'm a chemist and I read the literature quite religiously-- I did not take this comment very lightly and I think it is okay to keep up with the latest medical literature regarding treatment options and prognosis.
I feel very comfortable with the care I received and the attention to detail. Unfortunately, I was very surprised with how behind the Mayo Clinic is about their knowledge of ME/CFS. Their program was focused on deep breathing exercises, meditiation, and discontinuing narcotic pain medications. As for my medication, I had my family with me during the visit, who interpreted the message as "stop taking all medication" so I've subsequently titrated off of 300mg of venlafaxine, 2mg of clonazepam, and 70mg of Vyvanse. I did feel as though the clonazepam was helping me but I'm glad to know what it feels like to not take any medication.
I see that Stanford and Vanderbilt are actively doing clinical trials. I am interested in joining one of those to maybe cross paths with a more knowledgeable doctor that might be able to tell me more about medication management.
tl;dr-- The Mayo Clinic was surprisingly behind in their knowledge of ME/CFS.
I recently was admitted to the Mayo Clinic in Jacksonville, FL and was subsequently diagnosed with CFS and Fibromyalgia. I didn't feel as though I really fell into diagnostic criteria for Fibro; I'm not in any significant pain and I wasn't extensively tender at their diagnostic tender points. Ruled out small-fiber neuropathy, MS and lupus by a series of tests. Their solution was a two-day treatment program.
Essentially, they put us in groups of ten for a two-day cognitive behavioral therapy program that essentially marketed GET. I was astounded that the person that ran the program had very little information about ME vs CFS. I had raised my hand to ask a question about ME and said "Oh yeah, I read that term they call it- what is it that they call it now? Encephalo-something? That sounds scary- so let's not say it!" I'm a chemist and I read the literature quite religiously-- I did not take this comment very lightly and I think it is okay to keep up with the latest medical literature regarding treatment options and prognosis.
I feel very comfortable with the care I received and the attention to detail. Unfortunately, I was very surprised with how behind the Mayo Clinic is about their knowledge of ME/CFS. Their program was focused on deep breathing exercises, meditiation, and discontinuing narcotic pain medications. As for my medication, I had my family with me during the visit, who interpreted the message as "stop taking all medication" so I've subsequently titrated off of 300mg of venlafaxine, 2mg of clonazepam, and 70mg of Vyvanse. I did feel as though the clonazepam was helping me but I'm glad to know what it feels like to not take any medication.
I see that Stanford and Vanderbilt are actively doing clinical trials. I am interested in joining one of those to maybe cross paths with a more knowledgeable doctor that might be able to tell me more about medication management.
tl;dr-- The Mayo Clinic was surprisingly behind in their knowledge of ME/CFS.