*hugs* for you. It sounds to me as if they need to up your doses. It's a trial and error to find the right doses and the right meds to help the pain. 25mg of topomax sounds really low. Is your doc having you up the dose, aka titrate up over a week or so? That's usually how it goes with it. When is your next doc appointment? Sit down and talk to him/her and tell him/her how much pain you're still in. If there's something you want to ask, or tell the doc, make a list so you don't forget. Being in so much pain we often don't remember things we need to.

I'm sorry you're in so much pain. I was a work comp case and was given no meds at all for about a year a half while it spread full body. Nothing about rsd is pleasant but just know you're not alone and here, we all understand everything you're feeling.

Big Hugs,

Karen

naloxone?
 

I can't say that this will help, but I think this research is encouraging. -- Go to pub med, and searach the terms naloxone and neuropathic pain.

One study, published in the European Journal of Neuroscience, July 2008, entitled "Non-stereoselective reversal of neuropathic pain by naloxone and naltrexone" by Hutchinson, et al, involved drugs that have been traditionally used to help alcohol or opiate addiction -- the interesting thing about this study is that administering the drug naloxone continuously at a very slow rate over a period of days "completely reversed established neuropathic pain."

Of course, this was done with rats, but, since these drugs are already FDA-approved, what it will take are informed docs who have patients who want to try this out as a treatment. From what I know about CRPS, there are plenty of people who would be willing to try this.

So print out the article the next time you see your pain doc and ask them about this -- Also I don't think you have to be completely off any opiates -- what this stuff does is make the opiates work better and stops the development of tolerance and helps turn off neuropathic pain.

When doctor Schwartzman gave me the ketamine infusion, I stayed on ALL my meds, including methadone. Full doses.

But, I think what you need to do, has been said.
Keep a Word Process document on your computer, stating clearly all your complaints.
Be it a Journal, a list, however you feel comfortable, but get those complaints printed out to the doctor clearly!
This way, you save the document, and you print it, he saves it in your file.
And, see if you get the "management of the beast" under way, and making progress.
It can take quite some time, to get the exact combo or "cocktail" of meds that you need.

So, keep a record, and, if you see your doc monthly, write / edit then save it and print it monthly. Like that.

I wish you the very best in the future!

Pete
asb

you guys girls are amazing i love haveing a site where i can go and everyone understands all of what you are feeling may it be yeah i can walk today or help me i feel hopeless, thank you so much for your support and time. i am so afraid sometimes when i go to my pm and just to say.. i have two one who gives me my meds and the other who does the nerve blocks yeah me twice the bills :) but i do have a good repore with the one who gives my meds we even call eachother by first name and she will call through out the month to see how i am doing, but at times i feel funny when i tell them i need to adjust my meds, like i am an addict looking for more do you know what i mean? or my other pm when i sugguest something to her she looks at me like what she is doing should be enough or are you the dr now has anyone ever felt like that? i do know that if the ketamine doesnt work i do need to do something because i cant keep going on like this, my 16 yr old is like the mom now to my 8 and 6 yr old, it isnt fair that she has to do all the dinner and look after the kids because i hurt so bad. god bless her she is in a cna class at college and any report she has to do it is about rsd to bring awarness.
wishing you all a pain free day take care michelle

Hello Michelle,

Don't feel funny when you talk to you doctor about your meds or anything else. No one knows better than you how you feel. Keeping the communication lines open between patient and doctor is essential to obtainig optimum (spelling ?) relief.
If the ketamine doesn't work don't lose hope. It takes a while to find what will work for you. You can't quit moving exercise when you can. I like the water you are weightless and you don't hurt as much verses out of the water.
I know how you feel about your kids. I have been there. Be sure and let your daughter know how much your appreciate what she does for you. On a good pain day do something special for her.
Take care,
Sherrie

Dear Michelle,

I am going to try to copy a link below to an achive of old articles for you that I recently found on the RSDSA website. There is some good current info on ketamine and lidocaine. Also, maybe your meds could be tweaked to try to help with the nerve pain. I take 60 mg Cymbalta a day, 150 mg Topamax a day (because I get wicked headaches), a .20 Catapres patch for HBP (which is also a beta blocker that works on nerve pain), 250 mg Soma as needed (for muscle spasms), Percocet and and Motrin. I've tried and discarded a number of other meds that didn't agree with me - like Lyrica, Neurontin, and Nortriptiline (sp?).

http://www.rsdsa.org/2/library/artic...ive/index.html

It stinks that you don't feel well often. It sounds like you are also depressed. I think that the Cymbalta has helped me with the depression. Exercise helps me, too - I try to walk a lot, even though my feet are starting to swell a lot these days. When I walk it seems like it keeps the swelling more to the tops of my feet, so I just loosen the laces on my sneakers. It would be nice if the weather would improve here in the northeast - it certainly doesn't feel like Easter yet!

Take care and I sincerely hope you are feeling better this morning Sandy