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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Irish,

Any way that I can help you I will. I've been there. When I was diagnosed with rsd my surgeon said well we think you have rsd we're gonna do a few things for you but then you're on your own,there isn't much out there. I didn't even know what rsd was or want it really meant for my life. Such hope from the doctor that is suppose to see you through your problems. I have spent almost 3 years now researching EVERYTHING,talking with doctors,looking at countless medical trials and studies so that I don't have to have that "alone" feeling like I did have when my surgeon told me. Unfortunately there isn't much expanding research out there for the doctors to find out more with. Sometimes I feel that since it's not a popular disease there isn't all that funding so it's harder for doctors to do more research or educate each other on things that they have found.
I'm really sorry to hear about you breaking your fibula. I can't imagine the pain you must be going through right now. Is it in the areas of rsd or some place else? I hate to say that in a way your doctors are right,but there really isn't much that can be done to the fibula in less it's a full brake. Only time and lots of rest can help with the healing.
I understand what you mean about feeling like crap. It sucks really bad. This may sound really girlie but I grew up in high heels. I always wore them,every where,even in the snow,since I can remember. When I was diagnosed they said because of the muscle loss,the random spasms I couldn't wear anything with any type of heel. Do you know how hard it is to wear a dress at a wedding with sneakers on. lol Probably not :D
The clothes I can understand too. I've very sensitive to touch and clothes are a killer. I some times have had to pump myself up in order to get dressed in the morning. It's so degrading when you cry because you can't put on a pair of jeans or your spouse has to quickly put your socks on for you.
The best thing I can tell you is to start replacing some of your rougher clothes. I have found that micro fleece and other fabrics like that are a lot easier to deal with. You may want to look into a micro fleece sleeve that you could put on and then put on your jeans or rougher clothing. I have one and it helps,it also helps to keep my leg warm. My leg just doesn't hold the heat like it used to,it gets so cold feeling so easy. Of course it's sucks when it feels cold but is burning like it's on fire.
Burning and stiffness can be natural. Especially in colder weather,if you over did it and some times it can be swelling that causes it too. You can have swelling behind the patella fat pad in your knee without really knowing about it other than some stiffness. Have the doctors looked for that or tendinitis.
When I was going through therapy I started getting a lot of tendinitis and it would take months for it to go away. It could also just be the rsd acting up.
I really hope that your insurance will let you come to the states. There are some clinics and hospitals that have great rsd specialists that may be able to help you. Please do your research and talk with the staff about their percentages on recovery and things like that. Also research the treatments that you are interested in,the more you know going in the better they can answer your questions and concerns. It helps when you aren't just going through the dark and hoping the doctors hold your hand. You have to be in charge of what you expect. This is your health and your life.
Yes it is normal for your leg to look normal but be in horrible pain. Most of the time people usually have red,blue or even purple blotches when they are in pain,but not all the time. Some times my worse pain can be there and there isn't a single blotch. Other times there is.
Rsd can really be confusing and frustrating because you don't always know what to expect. It's not like you have bruises and horrible swelling in order to have pain. You can look normal and not know that the rsd is getting ready for a flare up.
I'm glad I've been able to help you. Anytime I can answer anything for you I will,even if you just are tired of feeling like crap and want to vent,it's ok. I understand. I've been there,it's scary and if I can help someone get through this and not have the feelings I did then I think we are both better off.
Hope you are getting some rest. Let me know what the insurance company says. I'll be keeping my fingers crossed that you are able to get the kind of help you want and need. You are in my thoughts.
Take care and stay warm,
Deanne





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