Hey,

Just thought I'd submit a post as I'm sitting here feeling like RSD is taking over my entire life right now - which is never a good feeling so it's time to send something outwards instead of just looking inwards! Sorry this is a total VENT and very unproductive but I'm hoping you guys will understand!

I am scheduled for a spinal cord stimulator trial on Friday - and know this could be good or bad, has both pros and cons, but right now don't have much choice but to do SOMETHING about the RSD and this is the doctor's current choice, and my 'least bad option'! But mentally, I'm really struggling with it so much.

I so just want to feel like I'm in control of my life, have a say in decisions even when they might not be the 'best' choice. I need to make them myself. I already feel like I'm fading away into the RSD - like other people feel they have a right to make the choices for me depending on how sick I am on a particular day and sometimes i don't have the energy to stand up to them, or sometimes I get so over-adrenalized and in pain I can't explain what I need. But I feel like if I stop being able to participate, I'll disappear completely - I want to be more than just my RSD...I know it's to keep me safe but I can't live my life this way - just as someone who needs to be protected or taken care of - i NEED to have a voice too and RSD already steals it (sometimes literally when I can't speak)

I am so afraid of going back into surgery - I've steered clear of it for so long. The surgery itself of course isn't really that bad, but I remember the after effects of previous surgeries, pain flares, temperature and blood pressure craziness, medication mess etc etc and while I know I need to do something to try to interrupt the pain, it's really difficult to explain to people around me just how very freaked out I am about this. Hard to let them know what the pain of RSD is like.

Things have been bad this week, no doubt due to various stresses, but I'm finding the movement issues are really bad right now, and the pain itself is unabating. I know, that's why I need the SCS...!

Alright - I think that's enough of a rant. Sorry for venting and thanks for listening

HUGGGGGGY'S!!!!


Yes, we all have found a time where we feel like it is taking over our entire life. For me personally, I totally understand your frustration and aggravations. It took me about 3 months to come to terms with the fact that chance were, I would not get much better.

Actually it is better to come to terms with it now. It has taken it over, and the chances of remission are extremely low. Now that you are thinking over what I just wrote, please take the time to keep reading...

It may have taken it over but... You can beat it or at least fight it. Learn to cope as best as you can with the pain. Talk to doctors and follow their instructions. Do not follow them blindly. Read as much as you can about RSD, and make educated decisions on what is best for you. If they are not answering your questions or are not listening and working with you, get new ones. You need good ones to work out this fight with you!

There is a hard learning curve on adapting to having this (excuse me) sh*tty diagnoses with no cure. What you can do today may not be what you can do tomorrow. It changes from day to day and if you overdo it, there will be consequences in pain and strength levels.

Try to stay as positive as you can. I know, now that I dumped all this crappy news on you, you may be thinking ARE YOU KIDDING ME!

I am here, as so is everyone else. Vent when you need to vent, cry when you need to cry and yell if you need to yell. This is part of coping and adapting. If you start getting depressed too much, your sleep will be impaired more and your pain will go up higher (like any of us needs more pain). Eat as best that you can and remember to take one day at a time.

Super big Gentle Hugs,

If you need to chat off board, feel free to email me at:

Rainbow422@aol.com

I hope a bit of relief and a brighter day tomorrow for you all.

xoxoxoxoxoxox