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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":D

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.
 

1sweed

Moderator
Joined
Feb 4, 2013
Messages
1,956
Reason
DX FIBRO
Diagnosis
01/1995
Country
US
State
PA
OceanGirl, Hello and welcome to the forum. I wish I could give you some helpful advice as far as doctors go, but even when I was in Florida (24 years), I did not find any great doctors that understood fibro. The best doctor I had was my family doctor. He wes very supportive and kind, and though he could not feel or see my pain he believed in me. So I would say try to find a regular family doctor who can help you through your flares when your other top notch doc is not interested. You might consider a pain specialist or someone who does light massages. I hope you can gain some knowledge from reading through the forum and chatting with other members. Happy you found us. :)
 
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