Thanks for the advice Jim. Unfortunatly I have no other option to fly after my treatment unless I want to spend my summer in Germany...also flying is my biggest fear which gets me all uncomfortable which wont be good...

Does your wife also have RSD in her feet? Its strange because I also get colour change in my left foot but dont have the RSD pain there, similar less pain however which is only triggered from over stressing it.

Im really dying to get back to my life as I have passed through a very bad time and am still going on. The doctor did say that if the treatment works he told me to take it easy for 6 months to 1 year. Although difficuly, that wont be a problem. Another concern I have is that I must start rehabilitation on my knee, mainly increase muscle strength and mass but not sure when to start? Best to take it 1 step at a time I guess...

Suzy fell and broke her wrist. We were several miles from home in New Jersey visiting my sister. We took her to the hospital in which they wanted to admit her but she refused and ask them to set her wrist and we will see the doctor near Washington. A few weeks later her doctor explained that the wrist did not set correctly and needed to be re-broke and set. Our lives have not been the same sense.

From her wrist the RSD spread to her neck, other arm, both feet, ankles, up near her knees. For the first two years she never told me about RSD and kept it secret. She was not getting proper treatment and was passed from one doc to the next. Her health insurance and employer were giving her a very hard time. I then got involved when she informed me of what was going on. I fought tooth and nail with employers, doctors and insurance companies in which 2 major companies told me they never heard of RSD or CRPS. I picked up Insurance from my employer almost 4 years after her injury. What is still a mystery is the doctors reacted immediately, using my coverage, with gusto, however that is another story. So, her treatment started late in her disease allowing it to progress to the point where treatment can be limited or remission just is not possible. She is now on total disability. However, she gets up and about, sometimes more than me because she needs to move. Also there is always that chance this RSD can burn itself out. Rare, yes but does happen.

Hey Jim,

This RSD really sucks! Its so pointless! The body should be made to overcome injuries It seems as though when the body get a shock/abuse in the same area over and over then it may lead to the nervous system freaking out...

The slight increase in activity has caught up on me and my pain has really increased since last night...dunno what to do, rest, walk, swim

Best just to keep up my activity as much as possible till the treatment..

Im sure that they will find a cure eventually Really need my life back! We all do!

Maybe it was the cold water...................? I will say that water therapy is good for you. However, everything I've read about water therapy for those with RSD the water temperature should be around body temperature. You could be experiencing a flare in which Suzy will slow down and take it easy. Over time she knows what she can do and what to avoid, when to rest, when to move about.

Hey Jim,

Yeah it was probably the cold water and the sharp movements with swimming.

We finally have managed to confirm a date for the 12th July with dr. Rohr.

Now we are trying to see how is the best way to plan it. If my family should stay with me during the treatment or is it best im left alone..also if i will be able to move around and talk during the whole treatment or will I be knocked out for most of it Travelling after is another query we have...

It's a good thing you set that appointment. Better to have tried it than not especially if severe RSD pain gets worse. You've got everything to gain. My opinion is you're going to be in and out of sleep most of the time while getting the drip. Keep us posted. Maybe they'll allow you a laptop while getting the treatment so that you can give us an hour by hour report?

Have been trying to contact the doctor today but didnt manage to get through. My appointment is just 1 week away so im quite anxsious about the treatment and not so sure what to expect exactly. Hopefully I will manage to contact the doctor tomorrow for a bit more detail on what to expect exactly. Also, my dad will fly up with me to start me off and make sure everyting is fine, then my mum and my girlfriend will come up and my dad will go back down.

The question is, how long should my dad stay with me? The first 5 days? Is it a better idea for my girlfriend to stay with me from the start and sleep in my room?

We are still unsure of how we should plan it exactly

Hi Nigel,

Seems like you have everythng in line. It's always good to have an advocate with you whenever your in the hospital. When I had mine done someone came everyday and my husband pretty much stayed the whole first day while they preped me and got it going. My situation was a littled different we are about an hour and half from Manhatten, Dr. Richman was my PM Doctor and worked with my surgeon through all my surgeries so we felt very comfortable and he's just an incredible doctor.

Wish you the best again keep up posted.

Gabbycakes

So the day has finally arrived! We arrived in the hospital this morning and the doctor got me started straight away He inserted the infusion into the wrist and we will see if my vanes can take it before feeding it through the neck...he told me not to expect anything I n the first 4-5 days as the dose will be very low and gradually increasing...

Will try to update when possible...

Eva...I said hi from you to dr Rohr

The very best of luck to you.

Think positive!!! I am keeping you in my prayers.

xoxo Sandy