Emmett and I took Lizze to pain management yesterday. Lizze is in to much pain to drive much lately and we would rather not take any chances. She had a regular follow up and med check yesterday. She also talked to them about her leg pain and they said that it was “most likely” fibro related.
The only thing we can do is Max her out on the Lyrica she takes to help manage the pain. That scares me for two reasons. The first is that if/when they do increase her meds she will be sleeping a lot more, at least until she adjusts (if she ever does). The second thing that scares me is the thought of Lyrica no longer working. As she reaches the max dose we will have to find things to either supplement the Lyrica or replace. We tried for YEARS to find something that works. Lyrica was the first and only med that helped her manage the pain.
What do we do if it no longer works? Start over? It took 6 years to get her where she is now, and believe it or not, this is an improvement.
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Hi, Rob. I know it’s been years, but I just want to know how Lizze is doing today. You’re concern is valid. As much as possible, I don’t recommend relying on meds to relieve pain, but I know the nature of Fibro. I hope she hasn’t developed a resistance against Lyrica because she’s been taking it for almost eight years now.
If you do ever have to try something else, and haen't tried it already, try Tegretol (the XR version, very important) at very low doses (start with 100mg 2/day). It's not usually used for nerve pain but it worked for me when no other med did.
(I take flexeril as well, because of a spastic disorder, neurontin never did anything for me but make my eye twitch constantly lol)
I honestly believe fibro is a set of symptoms, not a disorder in itself. I have all of the symptoms, but I have a peripheral neurological disorder that's causing them. My friend had all of the symptoms, but had a malfunctioning thyroid gland (they nuked her gland and she's had none of the symptoms since).
If she hasn't already been through it, it might be worth seeing an actual endocrinologist for a full workup on her thyroid, etc.
Rob as a Fibro sufferer myself I so feel your pain and anxiety over this. I have been struggling with this disorder for the last 10 years… and wasn't diagnosed until 5 years ago when all other options for what might be wrong ran out. I was on an incredibly volatile cocktail of drugs including neurontin, flexaril, and percocet. Its so frustrating to deal with something they know so little about, and treatments are so slow coming out because so many physicians deny Fibro's very existence… Lizzie is certainly in my prayers as are you and the boys… always! Hang in there!
Thank you. Hang in there as well. Hopefully, someday, well understand more and offer people like you or my wife relief for the constant pain. Thanks again