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Joselita · 06-27-2007, 09:23 AM

Judysh,

I am so sorry to hear about your daughter. I have a 19 year old daughter myself (& an 18 year old son), and I know how hard that age can be even without the RSD to contend with (well...on their part, since I am the one that has it in our house).

I have had RSD for about 10 years now, and have been through many different treatments and procedures. My RSD started out in my right foot after I stumbled into (and tripped over..lol) a curb while I was on a charity walk for The American Heart Association. It has since spread up my leg, into my lower back (where I have other, unrelated problems going on too), and then jumped to my right hand/wrist/arm/shoulder (that quick! LOL) after mildly spraining my wrist several years later (it has now been several years since that happened....and I am very lucky that my upper body RSD has never been nearly as bad as my lower body....and even with the lower body stuff, I have been lucky in that I have been able to keep it from spreading anymore, and don't have as many horrible problems as lots of folks here do.

My foot/leg was also casted....several times, and for long periods of time.....after I was hurt, and after each of my 4 surgeries. While it is not the best idea to immobilize RSD limbs, there are times that has to happen. The thing to do is to try to do as much of the right kind of PT as possible to get the ROM back. And, that isn't the "regular" Sports Medicine kind....where they believe in "No Pain, No Gain" and force you do go past (WAAAY past) your pain limits and then try to encase you in ice. All that kind of PT does is make things about 100 x's worse.

Has your daughter been able to find a good PT place (usually in a pain clinic..or at least that is where I was lucky to find mine) that will help her with desensitizing and to get some ROM back, and to stop (and possibly reverse) the atrophy? If you don't mind me asking....what treatments has she been through...and what meds does she take? There are some meds out there that work better (for some folks) than others with RSD and it's problems. There are some out there that cause their fair share of additional problems (again, for some people...I keep saying that because with RSD and the things used to treat it, sometimes things work for one person, and not someone else...and some things can even make other folks worse, while being a "miracle" for others), like grogginess, "Brain Fog", mood/emotional changes, and such.

Also...does your daughter's school offer correspondence courses? If it does, maybe she would do better taking a few of them, instead of trying to go to the campus? If that is already what she is trying to do...sorry that I didn't get that when I read your message.

My heart really goes out to her..and you...because I can't imagine what it is like to have your child having to deal with this awful RSD crap. It breaks my heart to hear of all of the kids that have lost great portions of their childhoods because of RSD. I also can't imagine what it does to a child to have doctors accusing them of malingering, and telling them that what they are legitimately going through, coping with, and feeling "is all in their heads". I know what it did to ME to hear that. I know what it did to ME to have my ortho foot doc finally throw his hands up in the air and tell me that "maybe one day I would wake up and realize that I wasn't in pain anymore". 7 years later, and that day still hasn't come! Sheesh.

I hope that the shrink telling your daughter to "go find her happy place" hasn't turned her off from seeing anymore mental health professionals, because I have found that they ARE necessary sometimes in dealing with RSD and the effects that it has on us. ANY doc of ANY type that tells her that what she is feeling isn't really there and is all in her head should be fired ASAP! I want to make it clear that that is what I truly believe. But, there are docs out there that are good, and that can help with the overwhelming depression that DOES and WILL set in because of her having to deal with so much pain on a 24/7 basis. However, if they EVER say that the RSD is CAUSED by depression...RUN don't walk, away from there as fast as possible. It is the other way around...the RSD pain (and other problems) causes our lives to change in not so fun and nice ways...and THAT is what causes the depression; the pain and the loss of "what could have been" or "what used to be" for all of us.

As you have already seen, we have a couple super nice young girls here that know EXACTLY what your daughter has been going through, and what she has to deal with. I hope that helps both you and her in some way. I know that finding other people that were going through and dealing with the same problems that I was, and being able to "talk" with them helped me tremendously. I hope that the same is true for you and your daughter.

Please keep on posting....folks here do try their best to help in whatever ways that they can. This is a super wonderful place, with a super wonderful group of people in it.

Take care...

Jose