My fiancee was diagnosed with RSD about two years ago. He was training with the military, and something happened with his ankle, next thing we knew he couldn't walk because it hurt him so bad. We went through 5 months of him not walking, and physical therapy, and seeing 17 doctors in our area that had no idea what was going on.. Finally I did some research of my own and found RSD, I took it into the neurosurgeon he was seeing, and she looked it up on WebMD, compared his symptoms and diagnosed it as RSD. She gave him some medications, put him through therapy, and sent him to a pain specialist. Did a couple spinal nerve blocks.. He started walking a 5 weeks after that. They slowly took him off medications, however he has always had a bad "ache"... Well, now he is having bad pains in the same leg, but different area. This time, its the very front of his leg. The doctor he went to at first (that had no idea what it was..) is now trying to diagnose it as Compartment... Has that happened to anyone else? Is that a normal thing to compare or get mixed up?? I'm so heart broken, his dream since he was little was to be a pilot in the air force and now he can barely walk..
I know I can't fix him and get him back into the military... but I would like to take some of his pain away.

This Friday we are going to the doctor for his compartment tests... is there anything that I should ask...
Anything would be amazing... We are really in a hard place.

Thanks so much...

Courtney

im sorry that we had to meet like this
i looked up compartment syndrome .. sounds awfull.. has he alot ofo burning pain too or electrical type pain.. there seems to be similar things goin on
maybe he has both.. has he had any type of test for rsd
sweat test thermography bone scans or vascular testing .. there is alot of us with multi things goin .. i hope that they can figure it and treat so that he can have soem relife soon
hang in there ask away if need be we will help out as much as we can
welcome again
carrie

Welcome to the forum. I'm sorry to hear that both of you are dealing with this.

I read about the Compartment Syndrome as Carrie did and it does have a lot of the symptoms as RSD.

What he might be dealing with is the spread of RSD but if the Drs. right he may have both. It sounds like they may be able to do the surgery for the CS. If they do want to do surgery, make sure you ask them to do a block first to keep the RSD from spreading.

Some people don't think surgeries are good ideals with RSD but there comes times when they have to be done and and a block can possibly keep it from spreading.

As far as Drs. it's very hard to find a very good RSD Dr. They have to be aggressive and not take their time about dealing with it when it first happens. I have seen people go into remission though after having it for years with blocks even though they don't always help everyone.

Good luck to both of you. Hang around. You will learn a lot here and meet some great people.

Ada

I hope you'll know what's what soon. You've waited long enough! It's time for action, for someone to do something.

I know it's an awful feeling when even the doctors don't know what's going on.

Good luck to you both. Hope all goes well.
Let us know what happens Friday!

I am sorry about your husband. I read I think on this just now. What tests is he having to dx this? I have a confusion at the moment between my RSD and PN because there are a lot of similar symptoms. I guess I would ask the doctor if it could possibly be the spread of rsd, what caused this such as was it from compensating for the rsd area,underlying causes,etc.What would be the difference in treatment if it was this dx vs rsd. I understand how this effects the whole family as I have this condition but my mom cries with me from me suffering. Try to stay in the day though I know how hard. I know a girl and on my hard days I think of her who was in a wheel chair,had to be out of school for a very long time,and barley could eat from her rsd. Then she got a scs after many other treatments that did not work and she is walking,back in school,etc. Let us know how he does and the outcome. He is lucky to have you as I know how important real time family support is to this.

Ok all;

Just got back from his doctors appointment... They made him run untill his leg was sore and he had noticable symptoms. They diagnosed Compartment Syndrome and kept the diagnosis of RSD. I know that it's normal for RSD patients to have other issues.. but to have muscular and nerve issues... That kind of screws him over in the long run. Dr. said that maybe compartment led to RSD, or vice versa... it's just hard to believe. I'd really like to get in and see someone who has worked with RSD more than a couple times in their entire career. I'm scared that they will do the surgery for Compartment, and then his RSD will flare up from being aggrivated. I dont know if the block will really keep the RSD from flaring. Corey is more aggrivated by the fact that no one has answers and it's been two years.

Is there anything that he can do to lessen the pain of his RSD from todays test. I just hate seeing him in pain.


Thanks,

Courtney

If a Dr. told me to run, I would run in the opposite direction of him and not look back. Why would they make him run on a bad leg?

He might try a heating pad for his leg and also I use Lidocaine patches as do others on here. You might want to ask about them.

As far as the Drs. not knowing about RSD. All of us have been through this. We have all had to see many Drs. to get the diagnoses or the help we need and we see different types of Drs. to get that help.

I know it has to be frustrating to go through this for both of you.

I hope he feels better soon.

Ada

Check your PM

Thank you all so much!! I feel so much better now that I'm getting some type of feedback. I can't talk to Corey about all this because he's already hurt enough about all this stuff and I dont want to push it, or make him think about it anymore than he already does. As soon as the dr. said compartment, Corey was on the ball with having the surgery... Im so frustrated with everything thats going on and I just really need someone to give me some type of feedback.

Do any of you know any good doctors around the Illinois area? We don't mind traveling... but I am not letting him have this CS surgery untill I'm confident that his RSD won't flare up and cause more problems than what we are already having..

another thing that made me mad, and not trust this doctor (other than his crazy tests) but he has delt with RSD, maybe 4 times in his entire career, and he admited that... but anyways, he has no idea what RSD is- (he's admitted this too) and so he is kind of throwing that whole diagnoses to the corner. He's presurring Corey into wanting these damn surgeries and other needle tests. SO FRUSTRATING..

Sorry...
I'm rambling now.

Anyways- Thank you all so much!!

Courtney

I can't believe this doctor had your husband run. I won't even let a doctor touch me and all the ones who specialize in rsd have not pushed it at all and have understood. This is a huge flag that you need another opinion. I am not sure how far you are from Ohio and I have mixed feelings about my care at Cleveland Clinic but I saw 2 pain docs there who deal a lot with rsd and I know a girl who has a lot done with them and has had good results. I also know she went to Rush Hospital though I was not sure if they deal mostly with children or only but thought I would mention that. If you want you can email me too.