Glad I stopped by today .
Hope everyone is ok.
The good news is I have a pretty full life again. I hike a couple hours a day ,several days a week , yoga , gym etc . My rsd pain is very low.
It has not all been a straight line
We finally figured out how and why the rsd returned ( we think)
Once I was basically in remission again , I continued to have severe pain in my brow and forehead
7 years ago ( yes 7) I was playing ball outside and I rammed into a post and I had to get7 stiches in my left brow. I had forgotten all about it.
Over the next several years I experienced left side headaches , sinus pain and stabbing ear pain.I had asked doctors over the years to look up my nose and in my ears and they found nothing .i was used to living in pain so I just thought my old neck fractures and ribresections were morphing into other pain. No biggie.
Well it turns out I have trigeminal neuropathy ,specifically supraorbital neuropathy ,so I am still having some issues there.
In December of last year it got worse and triggered rsd again.
The rsd has been pretty stable . No big flares ( knock wood)
I am no longer on low dose naltrexone . I am only on nudexta (2xday )and this seems to be doing the job .
Some days I don't feel it at all. Some days I get minor flares on my stomach especially , inner thighs and calves . They are more distracting than life stopping. They make me aware enough to know something is up.
I have a huge meditation practice for many yearsand I am currently on (another) elimination diet to see what makes these subtle flare ups happen. If I can get a handle on the brow pain too with this diet ,that would be great.
Considering all that I live with ,and through, I think my healthy lifestyle and diet and is why I manage this well and stay positive. Keep on believing . You never know when the miracle will happen
Super super grateful