what treatments works and what does not
 

i am going to my pm doctor today i have been in so much pain i can hardly walk been laying on the couch alot and staying in bed, not to mention not to nice to be around either!! she wants to talk about me going into the hospital for a week to put a catherdaer (spelling?) in the epi space or she also said she has a new treatment for pain with iv and i dont need sedation i will have the iv for 2 weeks. i was wondering what your pm doctors have done that have helped long term for pain relief or even remission that i could bring up to her today. i have done 3 lumbar blocks and 2 beir blocks, there has to be something that will get me walking normal again with out this brace i want so bad to wear pretty sandals for summer :) thank you so much for your time and hope you are all well and with out pain today, michelle

Hey Michelle,

I hope had a good visit with your doctor. I have ful body RSD and I have done injections one after another and they didn't help.I had a SCS for 2 1/2 years and I had it removed it wasn't helping. After several years of working with my PM doctor we got the right combination of meds. I see a chiropractor 3 times and week and he is a life saver.
Hang in there and take it one day at a time. Be active in your care and ask questions. Don't allow RSD to define who you are as a person.
Take care,
Sherrie

Hi Michelle,

Sounds like your doctor wants to do a continuous peridural anethstetic? This is a very good thing!!! How long have you had rsd and where is your rsd?

I had one in post-surgery in Germany this past summer/fall for 7 days after I had some metal screws removed from my rsd foot. The catheter was filled with 25 ml Carbostesin and 1 ampoule of Sufatanyl epidurally as well as sodium chloride 0.9% with a maximum flow of 6 ml/hour. If I recall correctly they did not go above 5ml/hr in my case as they had accomplished the level of pain relief required.

Good luck with this.

MsL

The only thing I've had done that has brought me any kind of remission was ketamine infusion. I had one in December and was in full remission and off all drugs for 2 months. I did have a tolerance built up before the infusion because i had been on ketamine for 2 years, and the doctor had never had a patient that had previously been on it, so the tolerance was a slight obstacle and i never reached the ideal state during the infusion, which may or may not be why the remission only lasted 2 months. But he has patients that are 9 months and still going in remission.

I also have a friend who went to an alternative medicine doc, who, as my friend describes it, "talked to his body". and he had rsd in both legs and was wheelchair bound... and he has been in full remission for years and can walk, and is now being asked to tryout for the NHL by several teams....

i went in and talked to the pm and we are going to do the ketmine that is what the iv is, but i was misunderstood about it, she said i will go into the hospital once again they will put in the iv and for 1/2 hour use ketmine if i have no problems then i can do the iv in her office after that and if it works hopefully it will, something has to i cant do this much longer, can i ask ... is this the ketmine infusion? thank you and take care michelle

ketamine
 

None of my doctors have said anything about ketamine.... should I ask? I have had RSD for 9 months and haven't found a good drug combo yet... anyone have any idea if that is what I should be asking about? My RSD is spreading to my right arm now too (it was just the left) and he said he didn't think it could do that without an injury to the arm.... from what I have been reading here that is bull... you all agree?
Jennelle

QUOTE]is this the ketmine infusion?[[/QUOTE]

Hi Michelle...It's hard to say exactly what ketamine protocol your doctor is offering you based on the details given here.

Here is a link to a search on the RSDSA web site about Ketamine treatments, you should be able to find some answers among some of these documents.

http://www.google.com/custom?q=Ketam...s=www.rsds.org


MsL

There are so many different treatments for RSD, ranging from medication (anti convulsants, pain medication, calcitonin, pamidronate, ...) to all kinds of nerve blocks and infusions.

All they can do is try and find something that works for you. There is no cure for RSD, so there is no way to predict what the outcome will be. This is the most scary thing about the condition. It's what makes it so difficult for us patients!!!

Wishing you lots of strength. Hang in there!

i read there is no cure and i just started crying i cant do this anymore i am tired how can someone hurt like this all the time and live.. this is so hard for me i am just tired of the pain and feel hopeless i keep changing the dose of my meds hoping it will work and it does for about a week and then its back to me on the couch or in bed. a friend told me that again i am not on strong enough meds to control my pain iam on topamax 25mg 1 day oxycontin 20mg twice day and 8 hydocodone 2 four times a day. i am going for the ketmine on may 1 for the 1/2 dose and praying this will control my pain for awhile. i thank all of you for your support and advise i love this site, i feel i can talk to people who understand and they dont ask me what is rsd. michelle

I know about the pain, it's atrocious. I was undiagnosed for almost 3 years and didn't get any pain relief. Believe me when I tell you, I *know*!

Hang in there anyway despite that horrible feeling, but let me tell you, if your pain isn't controlled well enough, then you need to tell your physician. You need to be feeling better instead of worse. Your pain needs to be under control, so you can live with it and so it's somewhat tolerable.

Nerve pain is the hardest to deal with. They cannot make it go away totally, but they need to try as best they can and that is why you need to give the doctors some feedback on the subject. If the pain is still too bad to cope with, you need to tell someone so they know where you are and so they can adjust your medication.

*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