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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Re: New to RSD
Mar 18, 2009
Melissa,

Sorry to hear about your b/f and family.Family can be hard to deal with when they don't understand or don't want to except the way things are now.I was finally diagnosed last summer after a year and a half of pain that couldn't be controlled and pain that would just make things worse. You've come to the right place.There are lots of people on here who do understand what you are going through.This is a tough disease and you need all the support you can get.
My rsd is in my left leg.Starts at the top of the knee cap and goes all the way down and into my foot.It used to just be a couple of my toes but now it's my whole foot.Gotta love that spread.lol I hope you get the support you are looking for.If you don't mind my asking,how did you get rsd?Where on your body is it? And what do you do for pain?
Stay warm and have a good pain day,
Deanne
Re: New to RSD
Mar 18, 2009
Melissa,

I'm so sorry that you have the rsd in so many places.It makes it difficult. Family and friends drifting away doesn't help your emotional pain that you are going through either.I know what you mean about someone patting you and you going thru the rough. That pain is just so bad.Almost makes you sick or pass out.I think one of the problems that the people around you have is that they are use to you being a certain way,and unfortunately your not anymore. What keeps you fighting are the people around you giving you support,making it ok for you to cry and be upset that you are having to go through all of this.
I hope that you are able to get the approval for the nerve blocks.Some people get good results from them and do better afterward.I will keep you in my thoughts that it does help you with your pain.Have you done any PT to keep your strength and mobility up? Sometimes it can help if done properly.
I know it may sound cold hearted but if the people around you can't be there for you when you need it the most than maybe it's time to find new people.Friends come and go but the people who really care for your well being will help.It could also just be that they don't know how to accept this new you.Sometimes people subconsciously become afraid of what they don't understand so they flee away from it so they don't have to deal with it.This disease causes more pain than just physical and can be a tough battle,but if we can all lean on each other and know we have a place to cry then it can make a world of difference.
Have you started a pain management or does the insurance company want to go for blocks before they take that next step?
I know all about insurance companies and how they can send you on paper chases and drag their feet when you are the one suffering and having to put up with this disease taking over.The company I used to work for when I got injured was self insured. So it wasn't through L and I.L and I just made sure that they were doing everything legal,even if I didn't agree with the treatment. Don't get to frustrated. It can be hard.Don't be afraid to cry either,or get pissed at your body.I've been there.It does help to vent. It's not your fault.None of this is.You didn't ask for your body to be this way,you don't want it to be this way.It's not your fault.May sound funny to say that but repeating that to myself really helped me after my rsd started to spread and I couldn't get out of bed or take care of my family.It helped me to remember to never stop fighting.It will be ok.We will all learn how to deal with this disease in our own ways together.
Stay warm,you are in my thoughts
Deanne





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