Re: Questions - Cindy

[Guest guest]

Cindy - Welcome to the group and I'm sorry that your son is having such a difficult time with all of this. I've noticed that many folks have already attempted to respond to your questions. So many different answers ! Perhaps by now you're even more confused than you were before you posed your questions. The very thing about RSD that makes it hard to respond to your questions is that because each of us have different body chemistries, our experience is both similar and different to anyone else who has RSD. That being said, let me try to answer your questions also. I'll leave your question in black and answer back by writing in blue. Hopefully this will make it easier for you to know who is writing !!

Does RSD pain have to be a burning pain, or can it be felt as a stabbing pain?

It can be one or the other or both. RSD can also cause a very deep aching pain. Most of us feel all of these pain varieties in addition to a pain that can only be described as being like an electrical shock or "zing."

Do many people with RSD have Autonomic Dysfunction?

As I understand it, autonomic dysfunction is the mainstay of RSD, especially at the beginning. As the length of time since onset grows, however, the pain becomes more sympathetically independent.

Can the pain be felt as a exact spot or does it always move in or radiate?

Again, variable. In my situation, left arm and leg and having had RSD for 13 years, the entire limb hurts but I have certain areas where the pain is signficantly worse. There was a time, however, when my whole arm would always hurt, but there would be a place that would varyat any given time a part of my arm would hurt but the place that it felt the worst would vary throughout the day.

Is swelling always present?

I have always had at least some noticeable swelling. I know that this is not always the case with other people.

Can narcotics get through this pain?

You will hear some docs say that narcotics do not work on nerve pain. You will hear other docs say that it does. Two months ago, I finally agreed to the use of narcotics (didn't want the drugginess to interfere with my work). I've been working with my docs to find the combination of medications that work best for me. Some narcotics did not work at all (e.g. hydrocodone). Others made me very ill as we tried to increase the dose to the level that the docs felt that I would need to be on over time. I think that we may finally be on the right track with a combination of both the fentanyl patch and levorphanol. I take Meclazine (kind of like Dramamine) to counter the balance problems and nausea. To reduce the drowsiness and loss of mental acuity, I also take Adderall XR (a psychostimulant) in the morning. It is important to know that the different meds may have a

different effect for folks. What works for me might not work as well for someone else and vice versa.

Is the pain constant, 24/7?

For me and most of the people here?.....Yes. How severe it is, however, varies throughout the day.

Your son is blessed to have a mom who is trying so hard to help him find some relief. What kind of treatment, if any, has he gotten other than the meds? I think that it's also important to see someone who is board certified in pain management. They seem to be in the best position to diagnosis and treat pain conditions. Please let me and the rest of us here know if we can offer any other help to you.....more questions, or even just support. It must be very difficult to see someone that you love having so much pain. Barbara in MA