I hope the doctor's office gets back to you, Jon.


It was suggested (I like my neurologist because of this approach) I could try Cymbalta.

For many reasons I passed and will again as my final determination for the time being. I do want some PT or some sort of focused activity where someone objectively records my status and potential exercises. I may be expecting too much, but I am still eating vegan and continue to get close to my "ideal" weight as to hopefully stabilize.

Susanne, Billylyne, Antonina, Jon, the room- I hope you all get a respite. I've had a brutal stretch. I use context an awful lot lately to at least focus myself a bit. Find that smile and hold on tight.

My best,

Jon

I called the doctors office today, they said they had called but was told at my work that I was on vacation for a week! Turns out we have three Jonathan's, and the operator got the wrong one! Anyway, the doctor av approval for the 60mg dose, I will wait until I am home again, before trying it, I am out of town visiting my Mom.
As far as side effects, the main one I get is intensenal pains, usually the day after, right before my next dose. I was really sleepy for about two weeks, but that went away. My mind is clear, no headaches, much better then when I tried Lyrica! I will have to see how things intensify by doubling the dose. Hopefully it will do something for the burning nerve pain!
I have been putting up with the pain for close to 30 years, but it does get old...

do you mean "intestinal" or "gut" pains? If so, sounds like you can live with cymbalta despite them.

Yes, sorry for the typo... The other side effect is the dry mouth, so I drink more water and use the special mouth wash. I had a real tough time with the other meds they gave me, but this I can live with, providing it gives some pain relief...

Hey Jon, I'm sorry to hear nothing is working to help with the pain. I was in the same boat ad you 3 months ago. Couldn't walk, or balance, and constantly in crippling pain. I have severe small fiber neuropathy. Then, as a last resort I tried medical marijuana(never liked it in high school, but I figured it was worth a shot).

Believe it or not, it actually works for me, extremely well. Not only am I mobile again, but I don't even need my cane!

Maybe it will work for you? Not sure if you live in a medical marijuana state, but if you do, I highly recommend giving it a shot!

Good luck,
Joe V

I have just had another course of lignocaine infusions and the relief from the horrid burning pain is brilliant, I am booked in for another infusion in 3 months.

Thanls for the suggestions, I will bring it up with my Rheumy when I see her next month. Medical marijuana sounds promising, but though it is legal here, might still have some social stigma about it.
The lignocaine also sounds promising, but with all this stuff, it varies on effectiveness, but they are worth a try.
So far, not noticing improvement on the increased Cybalta dose...

jon,

Stigma be damned if relief is possible. If you are in Colorado I will be in town 22nd-26th- I'll help break you in and cook a killer meal for after. ;)

I smoked it when I was a teenager, but like Clinton, I didn't inhale... :)

Unfortunately, they have found that marijuana and SLE Lupus, don't go good together...
http://www.rheumatologynetwork.com/a...sle-perilous-0