OceanGirl
New member
- Joined
- Dec 28, 2016
- Messages
- 6
- Reason
- DX FIBRO
- Diagnosis
- 8/2016
- Country
- US
- State
- Fl
Diagnosed a few months ago ( fibro). I believe this started from brain surgery and complications of recover. I'm classic text book fibro pt. Which is the first time I've ever been text book, Im usually told " I've never seen this before"
Two nights ago I had my first real pain at 10 flare up. At least, the first time I had one that I'm aware of, I've had good pain meds in the past to treat my brain /CSF leak, but now only on tramadol 100mg ER daily for pain.
Anyways, I was able to get in to see my dr.Kirby today about this flare up.. Turns out he does not treat flare ups( his words).his focus is to prevent flare ups ( I call them attacks) So there is nothing he will do for me to fight the next attack.. I'm petrified I'll get another so I'm spending a lot of tim in bed. He did prescribe gabapentin 300mg three times a day. Hopefully that will help. Crazy thing is I had set up and seen a pain dr months, even tried to do some light aqua therapy, but once I was DX the pain guy said he did not treat fibro patients.
My hx is pituitary and brain tumors with one tumor apoplexy. CSF leak from Lumbar drain. Three level Lumbar laminectomy to repair dural tear from Lumbar drain. Multiple procedures to block pain, patch CSF leaks. All this has been addressed and we believe I'm healed and tumor free. I still have cognitive issues mild brain injury from surgery and CSF leak, body temp regulation is broken, I can be easily startled by even the softest of sounds and Now I've been dx with fibromyalgia by Mayo hospital.
Anyways, sorry for long post.
Hope all is well and looking forward to learning from you all how to have a life with fibro.
Erika
PS if someone has the names of the top fibro docs in the country, I'd sure love to have them.
Two nights ago I had my first real pain at 10 flare up. At least, the first time I had one that I'm aware of, I've had good pain meds in the past to treat my brain /CSF leak, but now only on tramadol 100mg ER daily for pain.
Anyways, I was able to get in to see my dr.Kirby today about this flare up.. Turns out he does not treat flare ups( his words).his focus is to prevent flare ups ( I call them attacks) So there is nothing he will do for me to fight the next attack.. I'm petrified I'll get another so I'm spending a lot of tim in bed. He did prescribe gabapentin 300mg three times a day. Hopefully that will help. Crazy thing is I had set up and seen a pain dr months, even tried to do some light aqua therapy, but once I was DX the pain guy said he did not treat fibro patients.
My hx is pituitary and brain tumors with one tumor apoplexy. CSF leak from Lumbar drain. Three level Lumbar laminectomy to repair dural tear from Lumbar drain. Multiple procedures to block pain, patch CSF leaks. All this has been addressed and we believe I'm healed and tumor free. I still have cognitive issues mild brain injury from surgery and CSF leak, body temp regulation is broken, I can be easily startled by even the softest of sounds and Now I've been dx with fibromyalgia by Mayo hospital.
Anyways, sorry for long post.
Hope all is well and looking forward to learning from you all how to have a life with fibro.
Erika
PS if someone has the names of the top fibro docs in the country, I'd sure love to have them.
