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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.  |
Renee honey, I am so sorry. For me I knew spread was happening without a doctor to confirm it because when it first started to spread I could feel little tingles and then later sharp neuro shocks, then every other pain that comes along with it. First it mirrored to my left foot, then up the leg, then hands, trunk, etc. All in the same way for me. The spread didn’t happen for many years into the disease, but once it made it into my full left leg, the balance of the spread was pretty quick.
With our condition, doctors are very frustrating. Period. They can be so dismissive and since they’ve never felt what we feel, and don’t have scores of folks walking through their doors to tell them about it. I always think it’s interesting how when someone hears that someone has cancer that has spread everywhere and how much pain they’re in, all will stop in their tracks and take note and without delay start treatment, but mention full body RSD and no one knows what they hell they just heard. I’ve taken in numerous papers for my doctors, and again, it’s just glanced at, if at all. I guess I will just keep being an in your face kind of gal with this condition and the medical community. Passive sure hasn’t gotten me anywhere, so not sure what else to do but be assertive and persistent.
I know this is so hard, but try, try, try not to let emotions get the best of you (easier said than done some days) as it will only make your symptoms worse hon. I hope this flare you’re dealing with passes real soon. Rest, take care and be good to Renee.
