I have a 6 week tunneled epidural catheter in. Thursday was the 5 week point, so at my appointment, the rate was cut in half to wean me off the meds a little easier. Well later that day the pain spiked to horrible levels, and has continued to be very high since. I knew that this would happen, since I could tell that while the TEC has given me some relief while it's been in, it wouldn't be anything lasting as the pain frequency has actually increased over the weeks. Additionally, whenever I have had some kind of relief for some time (like through blocks) when the pain comes back it's always awful.

But since I still have a reduced rate of the meds in me, I can't take any pain pills. I've been desperate, doing all the little things I know how to do. Yesterday I was thankfully able to get in a good hour and a half at PT where about halfway through (with the first half being misery) my pain reduced to probably a 7/10 which lasted for a few hours. I felt human again for a little while, which was nice. Around the house I have been elevating my legs (the RSD is in both of my knees but often radiates up and down my legs), using the stationary bike, taking time to relax amidst all the work I have to get done, keeping my legs at a good temperature, things like that.

Does anybody have any little tricks like that to share? Some things that make your pain just a little better to get through? I know everyone's bodies respond differently to some things, but it's really worth a shot.

Seems like you already know and use most of my tricks. I elevate my leg and will use a space heater (when no one else is home to be bothered by it) so that I can warm up the air around my ankle and have nothing touching my skin at the same time. I will use heating pads sometimes but in those cases it's like lesser of two evils because the pain of it touching my is almost as bad (though not quite) as the cold if I don't use it. PT is good but also awful...good long term but kicks my butt short term.

Lidoderm patches help a little (but since that has medication in it I don't know if it would be something you could use). Same goes with Voltaren gel. My TENS unit is really the biggest help when it comes to my ankle pain, but I know that doesn't work for everyone. Sometimes a hot bath with epsom salts is helpful (although if the room is not warm enough, getting OUT of the tub can put me right back where I started or even make the pain worse).

Between the TENS and PT those two things are really the only stuff that has made any significant improvement with the pain (and by significant I mean that I am at a 7/10 on the pain scale at my BEST) because blocks, meds, etc have not made much of a dent at all in the pain and have on occassion just made things worse.

I hope you are able to find something that can help you get through this. I know I am constantly searching for things that help as well as things that don't aggravate the pain. Good luck.

I get moderate short term relief from mirror therapy. LDN helps with stiffness, which in my case only begets more pain. I also had moderate pain relief from tDCS treatments-non invasive, very low risk and painless. These are all temporary but every point of pain relief that we can lower for any amount of time is a good thing!

Hope better days are ahead for you!!!!!

Catra121, thanks for the suggestions! I have a TENS unit and it often provides me with some temporary relief as well. The other night it was making the pain worse, though, so I turned it off, but I'm going to try it again soon to see if that's still happening or not.

I have found that moist heat helps too when the burning isn't bad. Right now I can't get my lower back wet, but that's something that I often forget to try so I'll have to remember it for the near future when the catheter comes out. But I know what you mean about it sometimes getting worse when you come out. When my knees get wet and are in cool air the pain gets really bad.

And yeah, sometimes the PT can be so hard to find the motivation to do at home because the pain gets worse before it gets better. My therapist tells me though to just keep exercising until I feel better, because I will reach that point. And she's right, of course I'm better off when I'm there with her, though, because it's a much bigger push to get through everything. But PT has really been a lifesaver for me long term.



Ballerina, does mirror therapy work if the limbs on both sides are affected? Scrubbing is also one of the therapeutic techniques specific for RSD, which my PT has been having me do, and I have really noticed that that helps for me, so just a heads up, if you haven't tried it! Thanks for the suggestions and I agree, any small relief is a good thing!

Sorry, no Mirror therapy only works if you can move the opposite limb with no pain. Yes, incorporate a modified version of scrubbing into my home PT plan. It feels pretty miserable but it helps me from losing more range of motion. Thanks for the heads up!

Have you read the "lifesavers" Sticky? It's a great source of coping strategies!