Quote:
Originally Posted by RSD RENEE
My feet were burning so bad last night that it hurt to put my slippers on and walk. They were red and shiny and swollen. My med helped but took twice as long to help. My feet feel better this morning, but it was very scary. I know my rsd is spreading from my wrist to all of my limbs and stomach and this is one instance. When I told my neurologist about this she said it may be the fibromyalgia causing it and my pm dr said he to keep taking meds, exercise and see a person to help cope with the pain. Of course that person he recommened was far away and I already told them I can't take long car trips and they didn't take my insurance either. I wish I could find a dr who would tell could confirm the spreading and help take the pain away. All I seem to get anymore from some drs is blank stares and question marks. They don't understand this disease and don't know what to do about it and that scares the crap out of me. What am I going to do if the pain gets so bad that I can't take it anymore and when my drs say there is nothing more they can do? I'm starting to freak out and have another rsd meltdown. This sucks. Just needed to vent. Thanks for listening.  |
Hi Renee,
I am so sorry you are in such a dark place this morning with your pain, it does suck!! I wish I could give you an easy answer for the relief of that burning pain but sadly I am also plagued by it in both legs and my arms and other than distraction nothing really seems to help. Sadly, even the best doctor only has a handful of things that might help. If this is a new area of spread then contacting your PM doctor would be your best bet. Dr. Hooshmand and Dr. Schwartzman both suggest that managing new areas of spread just like you would the initial diagnosis is the best way to attempt at putting the new area into remission. So in essence even if blocks, injections, creams, patches etc., didn't work on the initial area of RSD doesn't automatically mean those measures won't work on the new area of spread. Have you discussed with your PM lidocaine or ketamine infusions? I know you are seeing a psychologist are they a "pain psychologist" or more of a traditional psychologist? Can you call and ask your neuro's office for a referral to someone closer?
What are you currently doing to cope? Are you getting some form of exercise in daily even if it is just isometric? When all else fails instead of trying to manage the pain, I instead focus on changing my mood/attitude which includes good comedy, music an good book.. even a great mystery that helps get my brain to re-focus. Shoot.. make a pot of coffee just for the yummy smell.. whatever you can do to get yourself out of the darkness.
Massage in areas that aren't painful to the touch can also be extremely beneficial for both the mind and the body.. and don't forget a nice warm soak
You will get through this.. try not to fear about tomorrow