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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Windowofhope,

First of all I'm sorry to hear that you have been diagnosed with crps. This disease can be quite hard to deal with for a lot of people. My heart goes out to you and your situation.
I'm 24 too. I'm married with no children so I can't relate to the mother in you wanting to tell your child you will be ok and all the worries that come with being a mom in pain.
I'll try and keep my story short. In may of 2007 I was working and had a t.v. slip and fall into my leg. It crushed all my nerves and detached the top of my knee from the bottom of my knee. After a year and a half of physical therapy and a major surgery to put my knee back together,and 3 lumbar nerve blocks I was then diagnosed with crps. It felt like someone told me I had cancer(not to diminish anyone who has been diagnosed with cancer) but that's what it felt like.
I went from being a active 22 year old who went camping,hiking,rock climbing,etc to someone who couldn't walk across the floor. This disease doesn't just hurt our bodies but our emotions too. In some cases the crps can spread. It did with me and I've heard of it with other people too. The crps used to be just in my left knee,now it's from my hip all the way down into my toes. It doesn't always work that way. The earlier you get treatments the more likely you can put it into remission. I didn't start to get any treatments for the crps till a year and a half after I got hurt.
I tried for a long time to go without meds. I didn't want to be one of those people who had to take a handful of pills just to go to the store. Even though the doctors were trying to get me to take meds I would say no. Now I regret that,but can't go back in time.
Swelling can come and go. Most people including my self have a little swelling all the time and bad swelling when dealing with a flare up. I have swelling in my knee and my ankle. The color changes can come and go too. Most of the time my leg is a blotchy red color and purple and blue when it's cold out or when I'm having a flare up. I was put on Lyrica but didn't get any pain relief. It can take time to get some relief as the lyrica builds up in your system.
I am now on morphine,soma,hydrocodine and baclofen.
Has your doctor said anything about using heat? Sometimes it can help with peoples pain relief. I use a heating pad everyday. It helps to settle my leg and can make or break my day. My old doctor that diagnosed me said that heating pads can be a persons friend when dealing with crps. And she was right,it's my friend. I don't go anywhere with out one and I also have one for the car when I do have to go out.
I understand how you feel about being "a mess". I too feel that way and feel like a burden to my family because I'm not who I once was. It can be difficult to handle sometimes. A good support system can really help with the emotional side of crps. Either having support from family,friends or the people here. Keeping positive helps a lot and makes you want to fight for your body. I'm sure when your son says the things like in your post that makes you want to fight this disease.
The most important thing is being your own advocate. No one can do it for you,not even the doctors. You have to do your research and have an open relationship with your doctor. You have to be comfortable and trust your doctor.
In being your own advocate sometimes you have to stand up against the doctors. Don't forget that they are working for you,not the other way around. You have a voice,you have to use it. This is not just your body but your life and they need to know that.
If the meds you're taking are not working anymore you need to ask your doctor why are you taking them. If there is something else you can be put on or just a higher dose. Your body can build a tolerance,some people build it faster than others.
There are different types of treatments,some are temporary,some are more permanent. The earlier the better when going through with different treatments. The longer you have crps the harder it can be to go into remission.
My heart goes out to you. I'm sorry you have this disease. I'm sorry we all have it. This is a great place for support. Rather it be getting information on different meds and treatments or just someone to vent to. We've all been there and truly understand what you are going through. Please don't hesitate to ask any questions or just vent on how angry you are that you have to deal with this horrible disease. We've all done it and are a shoulder to cry on for others here.
I hope you get some pain relief,even if just a little. I hope I've been some help. I can't put down all the treatments and meds and tricks to help with pain in one post but if you have any questions or are unclear on some things please ask away.
Since 2007 I've tried to learn everything I can about this disease and ways of living with it if nothing else. I'll share with you all that I can.
Take care and stay warm,
Deanne





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