Reflex Sympathetic Dystrophy (RSD)

[VIRGETTA]

I am an rn who was recently diagnosd with rsd after a major wrist fracture--my radius fractured into 40 pieces and required lots of bone grafting. my physician says we caught it early and i should do well. When I read about rsd especially in this forum, the idea is that you never get over it. Is that true?
My pain from my fracture is almost gone, but my palm side of my hand is extra sensitive and I seem to have alot of pain in my finger joints. I have a knowledgeable OT and therpy is going well. But---will I have to live with this forever? Virgetta--Vincennes In

[wonderdog]

Dear Virgetta, You pose a difficult question to answer. If caught early and with proper treatment, many go on to live with limited symptoms and pain. I know of one person here in my town who has done very well since her initial injury. However, from what reading I have done, it will always be a part of you....in remission perhaps, but there. Everyone is different in how their bodies deal with this condition. I hope for your sake that you are getting the right care and your pain will subside over time. For most of us, we weren't diagnosed anywhere from months to years. I'm not sure if it matters to what degree the initial injury is as to what you can expect in terms of "forever". Best of luck to you. Let us know how you are doing. "w"

[G0J0G0]

Dear Virgetta,
If I might add one small note to Wonderdog's info, as you might know by your profession, exercise is of the most importance. You said you have a knowledge of P/T and this seems to be going well, allow me to say DO NOT stop for I have paid a considerable price for allowing the P/T or O/T to cease. I have to depend on a referral for my insurance to cover and I have realized a nine month gap in therapy and I am/have paid a definitive price. It is my understanding that there is no cure or the disease doesn't go away but the symptoms can be minimized by continuing the O/T. Be Blessed, and may you continue to progress, G0J0G0

[VIRGETTA]

Thank you to those who answered. Everyday I make progress, but there is still much to go. I appreciate your input and this site. My OT has just received another case like mine. It is another woman with a severe wrist fracture......

[In Him]

Virgetta,

I'm new to this forum. I saw your post and thought I'd drop in with some additional information. I too have been diagnosed with RSD. I was fortunate to have a Neurologist that was familiar with RSD / CRPS and she Dx'd it early. My Ortho was on the fence about the Dx, so I requested a referral to a Pain Management physician to verify the Dx. After a thorough review of my records and an exam of my foot - I was told there was good news and bad news. The bad news was that I was Dx with RSD/CRPS. The good news was I was Dx early. I was told that he would treat it aggressively and that was the only way to win the war. I was also told that if you're Dx'd in later stages the best you can hope for is to put it into remission. Honestly, I think that is the case either way, but it is easier to do that when RSD is caught early. I was formally Dx'd 5 months ago.

I was told that proper medication plays a big role, ROM, Strengthening, Desensitizing, Physical Therapy or Occupational Therapy, Sympathetic Blocks (depending on how you're responding to the other modalities), etc...

I was also told it was 30% mind and I needed to take care of than and 70% foot and my PM would take care of that area. As a RN you know how important it is to be working with a physician or a team of physicians that are knowledgeable with your Dx and possible Treatment Plans.

Good Luck! If you need some support or just need to chat feel free to email me.

[momwire]

I would like to throw a little additional thought in here. I was dx with rsd in Dec of 2006 and have treated it agressively. Mine is in my right foot and ankle and is a result of knee surgery...it has spread to my left foot and my right hand slightly, but we currently have it in remission. I am in the middle of my second series of sympathetic nerve blocks and firmly beleive these have helped me more than anything. The additional thought I would like to say is, be careful what meds you allow them to give you. I realized a few weeks ago, when I forgot to change my fentanyl patch for a few hours, that I have become chemically dependant on them.

We began a program to help me get off the patch and I have to say that the withdrawal is far worse than the pain the drug helps with. I guess at the time it seemed like a great idea, and it did help control the extreme pain, but I never dreamed it would have this kind of effect. So please, weigh every option before opting for the big guns, cause they come with a price.

And in answer to your question, I have done a lot of research on line and yes, I beleive rsd is forever, short of a miracle. But it can be put into remission, and with the proper treatment and support, you can live an 'almost' normal life. Good luck and God bless. Kathy

[In Him]

Momwire,

I would love to communicate with you via email regarding your case of RSD. Especially since you've been dealing with it since Dec., 2006 and have been successful placing it into remission.

I was Dx'd Dec., 2007, I have completed 1 set of 3 Sympathetic Blocks and will be starting a second set in a week and a half. Plus I am on high powered medications.

If you are open to communicating and possibly sharing information on your treatment plan - it would be terrific. My email address is: [moderator note: e-mail address has been removed].

Thank you and I hope to hear from you.

[G0J0G0]

Hi Momwire and InHim,
I have been taking the fentanyl patches for more than a year and several times gone over the time limit by hours and even a couple of days and not had withdrawal symptons. The symptoms caused depend on the patient and one's body's ability to handle the drug. I have tried many types of meds that do not work and frankly don't know where I would have been w/out this option.
And to the ability to exchange email address' you can d/load the tool bar from this site and enter the "chat" forum. You can also visit RSDSupport for more options. I hope you all find the meds that work best for you and soon, for ironically the blocks didn't work for more than a couple of days for me and then back to the furnace. May His Blessings overtake you and your flare-ups be non-existant, g0j0g0

[rsdsurvivor]

I wanted to say that it is so nice to hear a positive and cheerful post regarding this illness. I also believe that the mind plays a huge role and the other part seems to be work it, work it, work it. Just keep telling yourselves that making it move through the pain is not hurting you, but is making you better! My massage therapist said that when it hurts, take a deep breath, give the pain a number and then imagine the number going down until it's at 1 or Zero. You really can do that with your mind. Of course my RSD is new (3 months now) and I'm perhaps less discouraged then some. I simply refuse to let the illness own me. Thanks for being a positive post!! Dee Dee