Recent content by FibroMike

Here’s what I know - my grandfather had Parkinson’s. I do know that inherited Parkinson’s is very rare / doesn’t happen often. Does that mean you can’t be one of those folks? Absolutely not!

Does anyone have an anti inflammatory supplement to suggest?

Hi Cookie! What type of side effects were you having on Gabapentin? I've been on Gabapentin (1 pill/300 mg/night) for the past two months - I previously had obviously 24/7 muscle pain, but I'm now at the point that I have some pretty sig muscle pain/tightness in both arms and legs (that...

The things that have me most concerned that there’s still something nefarious happening (regardless of a formal dx): - 24/7 muscle pain everyday ( I’d assume this is also from lack of slee) - the facial pain, front of throat and neck pain along with jaw and ear pain - complete inability to...

Yep - I also lovingly was dx with Keratoconus in my late-30s so I know that's a contributor to the light sensitivity. I'm going to have to speak w/ my Dr as the Gabapentin I think is a contributor to the enhanced light sensitivity etc. Sunglasses outside is mandatory - even wear them sometimes...

Thank you so much for the detailed information! Fortunately - or unfortunately - I've had a rheum at Northwestern in Chicago dx me with Fibro and a neuro at Columbia in NYC tell me that's his suspicion. I know there's a new blood test out of CA for fibro but I've had a dr tell me ... probably...

I had two ENTs tell me that I had ALS as a direct result of the swallow test. The nuero at Columbia told me absolutely not - all he was seeing was a mono neuropathy of my perineal nerve. I believe the slight swallow issue I have is from TMD - It can flare up, really cause a lot of pain etc...

So very happy that I found this forum and good ppl like you - thank you so much for your story and background! I want nothing to do with the heavy duty drugs to help cope with this. I've been on Lunesta for the better part of a year but that doesn't really help (I'm moved from 3mg to probably...

Thank you so very much for this! Yes - I have been told by a neuro in NYC and a rheum here in Chicago that indeed their suspicion is fibro. The rheum looked at the other testing done - even by other rheums - and told me her suspicion is indeed fibro. She even indicated that there wasn't...

Oh and slightly elevated CK levels, twice, via blood work

For the last part of the year, I've had the below which has gotten worse/better some days but typically 24/7. - Complete lack of sleep. There are days I don't sleep more than 30 mins-2 hours and it's on/off sleep. I'm taking Lunesta & feel like it doesn't help, at all. - Wide spread muscle...