[KathrynL]

I've had a reoccurrence of my RSD that started in my left arm about 6 weeks ago. A week and a half ago, the doctor started me on topamax. I'm on 25 mg in the morning and 25 mg in the evening. On Monday, the dose will increase to 50 mg in the morning and 50 mg in the evening.

Last week, the pain seemed to be plateauing and as long as I didn't move my arm excessively, the pain was manageable. The burning pain was constant, but at a lower level. I thought I was starting to improve.

However, this week the pain is much worse and increasing daily. It's back to pre-topamax levels and I think it's getting worse. The burning is intensifying. I can't stand to have anything touching the arm. The stinging sensation is driving me batty. Luckily, it's warm out, so I can wear tank tops. I'm uncomfortable in any position and the arm is utterly useless. I can't do anything other than sit in bed and watch TV.

What should I do? Should I call the doc tomorrow or is it too soon for the topamax to have had any real effect? Can the doc even do anything or is it a waste of time?

[catra121]

I'm no doctor but from my own experience I would venture a guess that your issue lies with the following statement you made:

"as long as I didn't move my arm excessively, the pain was manageable."

This is a common RSD trap and one I found myself in. You limit the movement because it doesn't hurt as much when you do that...but then the pain gets worse and it's BECAUSE you didn't move the RSD limb that much. Use it or lose it. I know it seems counter intuitive but that's the way that it is. After I first hurt my ankle prior to the RSD diagnosis they put me in one of those moon boot things to immobilize my leg. At first I thought it helped...but over time the pain just got much much worse. I now know that it was the immobilization and guarding that made it progress so much worse so much faster.

So my suggestion would be to go back to the doctor, discuss meds, and discuss other treatment options. I think you should look into physical therapy (if you can't go to an outpatient center then ask for at home physical therapy) as well as ultrasound and/or TENS treatments as part of that therapy. Anything you can do to keep moving. I would also suggest looking into desensitization. Hurt like all heck but was totally worth it for me because my sensitivity was SO bad before I did that. It's still not great but at least I can tolerate clothes now.

There are other things to look into as well in terms of pain management in addition to meds: tDCS, blocks, mirror therapy, ketamine, etc. Start with the least invasive first of course...but I would look into all the options and discuss a treatment plan with your doctor. Make sure you educate yourself about the risks and benefits of all the options and never let yourself be bullied into a decision you are not 100% comfortable with or make a decision in desperation.

I'm so sorry to hear about everything you are going through. Don't give up hope of help. It's a long, hard road but there are options out there and hopefully one will work for you. Take care.

[KathrynL]

Catra121--Thanks for the reply. I say I didn't move the arm excessively, but I did move it a good amount. I typed with it (and I type quite a bit) and used it for many daily activities. I was probably at about 40% usage.

Maybe that's still not enough though. I do think I need to be in a PT program. I'm going to ask my doc about that.

Originally Posted by catra121

I'm no doctor but from my own experience I would venture a guess that your issue lies with the following statement you made:

"as long as I didn't move my arm excessively, the pain was manageable."

This is a common RSD trap and one I found myself in. You limit the movement because it doesn't hurt as much when you do that...but then the pain gets worse and it's BECAUSE you didn't move the RSD limb that much. Use it or lose it. I know it seems counter intuitive but that's the way that it is. After I first hurt my ankle prior to the RSD diagnosis they put me in one of those moon boot things to immobilize my leg. At first I thought it helped...but over time the pain just got much much worse. I now know that it was the immobilization and guarding that made it progress so much worse so much faster.

So my suggestion would be to go back to the doctor, discuss meds, and discuss other treatment options. I think you should look into physical therapy (if you can't go to an outpatient center then ask for at home physical therapy) as well as ultrasound and/or TENS treatments as part of that therapy. Anything you can do to keep moving. I would also suggest looking into desensitization. Hurt like all heck but was totally worth it for me because my sensitivity was SO bad before I did that. It's still not great but at least I can tolerate clothes now.

There are other things to look into as well in terms of pain management in addition to meds: tDCS, blocks, mirror therapy, ketamine, etc. Start with the least invasive first of course...but I would look into all the options and discuss a treatment plan with your doctor. Make sure you educate yourself about the risks and benefits of all the options and never let yourself be bullied into a decision you are not 100% comfortable with or make a decision in desperation.

I'm so sorry to hear about everything you are going through. Don't give up hope of help. It's a long, hard road but there are options out there and hopefully one will work for you. Take care.

[LIT LOVE]

Try and use frequently, but not so much as to increase your pain substantially.

[catra121]

Originally Posted by LIT LOVE

Try and use frequently, but not so much as to increase your pain substantially.

Agreed...it's always a balancing act with RSD in terms of movement and rest. I think you also want to pay attention to HOW you move the arm. I have two good examples, both of which are fairly recent. First, I was typing up a long email to someone (took over an hour to type it all out) and I was really into it. When I was done, I felt the worst pain in my elbow and shoulder which I hadn't really moved in that whole hour. See...my hands were moving from the wrist down but my ARM wasn't really moving. The second example was when I went fishing with my boyfriend last month. I hold the pole in my right hand and I caught over 20 fish in the first few hours we were out there (so I was obviously moving my arm) but when we decided to go in I tried to set the pole down and I found I couldn't hardly open my hand...the pain was so intense. And it was because even though I was holding the pole and using my hand...I wasn't really moving it at all. Lesson learned...I need to be careful to keep everything moving and not immobilize it. The motions a lot of times need to be fairly deliberate. I made the mistake of thinking just because I was doing things and using my hands/arms that it was enough...but it's not just that you use them...it's HOW you use them too. I go back to many of my early PT exercises because those are the ones that really focused on the deliberate movements and they can all be done when I am sitting without putting too much stress on my body and the RSD.