Re:Cindy/ Questions

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Does RSD pain have to be a burning pain, or can it be felt as a stabbing pain? The pain can be felt however a person wants to describe it. Some has both burning AND stabbing, others has burning, stabbing, throbbing pain. Or, others just has one kind of pain.

Do many people with RSD have Autonomic Dysfunction?

Can the pain be felt as a exact spot or does it always move in or radiate? Everyone is different, so everyone feels it differently. In some area's, I feel it in just one spot, others I feel it radiating. When it swells, it feels like its moving around just like I have a mole inside my leg moving around.

Is swelling always present? NO! Swelling is just another symptom that CAN be present, but not always. I rarely ever have any visible swelling....because my swelling is considered "Internal" swelling in my leg. Now, my hands are totally different....they are visibly swollen, purple at times/mottled looking.

Can narcotics get through this pain?Narcotics are the best to get thru the Nervous System Pain that RSD is. But, it might take up to a year or so before you find one that actually works the best for him. There are many different combinations of medications that works differently for everyone.

Is the pain constant, 24/7?YES!!!!!

I'm trying so hard to understand RSD. My son's Doctors are talking about an implant and we aren't even sure if this is RSD. We just know that after 3 years of horrible pain, he is not getting better. He is taking 520 mg of MsContin a day and using Actiq 600mcg suckers as breakthrough and is still in so much pain. What does it take to break through this pain?

Thanks for any help,

Cindy

Cindy,

Everyone is different.....RSD affects the Sympathetic Nervous System, which is our body's Blue Prints. No Two Sympathetic Nervous Systems are the same....just like no two thumb prints are the same. That is why it is so hard to find medications, treatments or even a cure that will work for more than just one person.

Just because a certain narcotic will help 2-3 others here in this group....it doesn't mean that it will help your son. Or, if that same narcotic DOES help your son, it might have to be a different dose, and it might take a different break-thru medication to help curb the pain spikes that he might have.

And, no matter what dose of Medications that he's on, the pain won't go competely away. It will always be there no matter what. The best thing that can be done is to find the right combination of medications that will keep him comfortable.....you need a regular Pain Killer like his MS Contin, plus something for Break Thru pain like the Suckers, but maybe the doctor needs to add something else to the mix. Ask the doctor for Roxicodone. Its a great break thru medication.....and you can take 1-2 pills every hour, and its pretty cheap money wise. I used to take it myself......and am taking the Actiq suckers right now. But, if my doctor would allow me to take both the Actiq Suckers and the Roxicodone, I know that my pain levels would drop to a 5-6 easily. The only hassle is that you have to remember to take them every hour or as needed.

The only thing you can do as a mother is to keep your son as comfortable as you can when he is in a flare up. I know that it seems impossible, and that it seems like your hands are tied behind your back and that there is nothing you can do for him...but, there is one thing that I know that you can do for him, and its something that i know that he'll never ask for it. Be there for him to talk to you.

Ask him about how he's feeling every day, Coax him into actually telling you word for word how he feels, about family members and anything they do that irritates him now that he's unable to move around and do something about it......

Well, Time for bed.....

I hope that some of this information helps you.

Tonia