[Kathysevans]

Originally Posted by Kathysevans
Hello, I am new to this site, and it seems already, that I am in the right place. First, let me tell you that I hate rsd, and what it does to you and your family!!!
My husband was diagnosed after sustaining a work related injury. He had to have his right shoulder operated on and go through therapy, but he just wasn't getting any better, numerous blocks and injections later, the doctor said" I think you might have rsd" sure enough.

After 2years of on going blocks and surgeries my husband can't even climb a flight of stairs without needing his inhaler. For a relatively healthy 36 yo man, asthma is not the cause, but rather rsd has affected his lungs. I feel that it has attacked his heart or it is now. My husband used to climb trees and always be on the go, now my children and I have watched a man do a complete turn around.

Over the summer it reared it's ugly head, Sean was laid up in bed for 2 months couldn't move or get out of bed. We all would have "family slumber nights" so that the kids didn't get too worried or upset. Things started to seem as if they were getting better, but now we have new symptoms: numbness in one or more extremities, anxiety attacks, chest pain, difficulty breathing and constantly feeling sick.

I have tried to contact various doctors(pain mgmt) to no avail they either don't accept our insurance or don't know enough about rsd. The one doctor we went to wanted to re operate on his r shoulder and bicepital tendon,I said no my husband is no guinea pig. So now we are at a total loss, him not working and we have to hurry up and wait for disability.
I don't work for fear something may happen to him while I am at work, leaving our children in a very scary situation. My question is, I guess I could use all the help I can get, advice wanted. Sorry to be babbling, but I am super scared for my husband! I don't want to lose my best friend, and I don't want my children to lose their father either. So any help would be greatly appreciated. My best wishes to all!!! Kathy

[catra121]

Hello Kathy...I am sorry to hear what you and your husband are going through. RSD and the way it changes our lives can be SO overwhelming. I feel blessed to have found this forum with people that I can talk to who are supportive and helpful...and of course knowledgeable about life with RSD.

Finding a doctor is one of the hardest things with RSD...and most people on here have experienced the frustrations that you guys are going through in this respect. Best advice I can give you with this is keep looking until you find a doctor that you feel can help your husband to get some relief from the pain and all the other symptoms that come with RSD.

Also...I recommend being very proactive in researching RSD for yourself and educating yourselves. This is not an easy task...but it will help you to understand why some of these things are happening and what you can do about them. Also helps you so you can determine if a doctor is the right one for your husband because many claim to know about RSD but are seriously misinformed about it. Some good websites are rsdrx.com (the puzzle list may answer some of your questions) and rsds.org.

The stickied topics at the top of this forum have a lot of good information too.

Just some things that you may already know (but no doctor bothered to tell me in the beginning prior to the RSD diagnosis) are: no ice (ice is very bad for RSD) and keep moving (immobilizations will make the RSD much worse so even if it hurts to move you have to keep doing it). I also find that heat is helpful in soothing some of the pain so heating pads or warm baths with epsom salts are good.

If you have any more specific questions, please let us know. There are many people here who are very helpful and knowledgeable...who may even be able to suggest a doctor in your area that is good.

So sorry again to hear what you are going through. Please stay hopeful that things can/will get better. It sometimes is just a long painful journey before that happens. Good luck.

[SandyRI]

If you don't have one yet, get yourself a good WC lawyer as soon as possible. WC is one area where you don't want to mess around! every state has different laws.

The best of luck to your family. Xoxo. sandy

[Russell]

Welcome to the family Kathy...

[alt1268]

Kathy,
check out rsd.org they have listing of doctors as well as american rsd. I believe I read in someones post about a Dr. Philip Getson in NJ. there are also several dr.'s in Philly.
I'm sorry your hubby is having such a rough road and I'm sure not only is he having anxiety he is probably going through depression. You may want to touch base with a PCP to get him on some meds for the anxiety and depression.
Again welcome to the family. Please feel free to write what you feel, rant rave, etc. It is a great place for answers and honesty.
It has been a great place for me to realize I am not alone in this.:we lcome_sign: