meadowlark
Senior Member
- Messages
- 241
- Location
- Toronto, Canada
Daroo and charlie1, I am smacking myself on the forehead for not having mentioned this before. I've been very brain-fogged. My apologies.
I have had migraine pain on the left side of my head and straight down the side of my body every day--you read that right--since 1980. On the worst days, my left side is not just in pain but almost paralyzed. I believe this is part of my slow-onset ME/CFS. At any rate, the migraines continued when I developed other symptoms and was diagnosed in 2000 (by Dr. Anita Raklis at Sunnybrook Hospital). I still have the migraine pain today, as well as fibro. I see Dr. Alan Gordon, head of the pain clinic at Mt. Sinai Hospital. At one time he studied ME/CFS, not as a researcher, but simply to make some informed conclusion for Mt. Sinai about whether it was real or not. (His conclusion: real.) He assumes, as do I, that my migraines and fibro are related to ME/CFS, and he is trying me on a series of meds to get rid of them. None of them have worked and many of them are traditional (shaky) solutions like Cymbalta. But he does know the illness is real, listens with empathy, and is on my side.
The disadvantage in seeing Dr. Gordon is that it takes work and patience to get on his patient list at all. The pain clinic sends you an enormous "form" (pages long) to fill out, and it includes a short essay. That takes work, but it's also a godsend, as checking boxes and multiple-choice questions doesn't really fit our illness well.
After you've submitted, you can wait over six months to get a call from the clinic. Then, if you become a patient of Dr. Gordon, you get an appt. once every six weeks at most, and when I turn up for the appointment, he is always running about three hours late. For me, sitting in a metal chair that holds me perfectly upright beside a sunny window with venetian blinds splitting up the light for three hours is absolute hell.
Back to the good stuff: He isn't up to date on ME/CFS breaking developments, but he is a walking encyclopedia of meds that do help a few of us, and he is sure not to dismiss you as a hypochondriac or fantasist. With me, he moved beyond meds to have some MRIs and EKGs taken. (Not that they helped, but again, he's trying.) He will commit himself to helping your pain. If it matters, he knows that marijuana helps many patients.
To fill out the pain clinic form, call Mt. Sinai at 416-596-4200 and ask for the Wasser Pain Clinic. You may find yourself speaking to Enza or another medical secretary. Ask to apply to be seen by the clinic. Your husband might also mention the specific nature of his pain, and that he has ME/CFS.
I have had migraine pain on the left side of my head and straight down the side of my body every day--you read that right--since 1980. On the worst days, my left side is not just in pain but almost paralyzed. I believe this is part of my slow-onset ME/CFS. At any rate, the migraines continued when I developed other symptoms and was diagnosed in 2000 (by Dr. Anita Raklis at Sunnybrook Hospital). I still have the migraine pain today, as well as fibro. I see Dr. Alan Gordon, head of the pain clinic at Mt. Sinai Hospital. At one time he studied ME/CFS, not as a researcher, but simply to make some informed conclusion for Mt. Sinai about whether it was real or not. (His conclusion: real.) He assumes, as do I, that my migraines and fibro are related to ME/CFS, and he is trying me on a series of meds to get rid of them. None of them have worked and many of them are traditional (shaky) solutions like Cymbalta. But he does know the illness is real, listens with empathy, and is on my side.
The disadvantage in seeing Dr. Gordon is that it takes work and patience to get on his patient list at all. The pain clinic sends you an enormous "form" (pages long) to fill out, and it includes a short essay. That takes work, but it's also a godsend, as checking boxes and multiple-choice questions doesn't really fit our illness well.
After you've submitted, you can wait over six months to get a call from the clinic. Then, if you become a patient of Dr. Gordon, you get an appt. once every six weeks at most, and when I turn up for the appointment, he is always running about three hours late. For me, sitting in a metal chair that holds me perfectly upright beside a sunny window with venetian blinds splitting up the light for three hours is absolute hell.
Back to the good stuff: He isn't up to date on ME/CFS breaking developments, but he is a walking encyclopedia of meds that do help a few of us, and he is sure not to dismiss you as a hypochondriac or fantasist. With me, he moved beyond meds to have some MRIs and EKGs taken. (Not that they helped, but again, he's trying.) He will commit himself to helping your pain. If it matters, he knows that marijuana helps many patients.
To fill out the pain clinic form, call Mt. Sinai at 416-596-4200 and ask for the Wasser Pain Clinic. You may find yourself speaking to Enza or another medical secretary. Ask to apply to be seen by the clinic. Your husband might also mention the specific nature of his pain, and that he has ME/CFS.
