My particular pain med mix isn't working. What helps you?
 

I was in a car accident 6 years ago coming up on the 15th and up until the end of last year, I ignored any diagnosis that included RSD OR CRPS in it. I guess bc I didn't want to face another chronic issue (I have suffered Tom type 1 diabetes since age 9/ asthma since 2). After giving birth in June 2012 for the first time, my pain has escalated so rapidly that ignoring things isn't an option anymore. I now see a good pain specialist. However, the mix of pain meds he has me on, 60mgs of Opana ER every 12 hours and 30mg of Oxycodone every 8 hours, isn't even touching my pain. Oddly, when I began the Opana you couldn't even convince me that it was a pain med and it has seemed to decrease my thirst severely. I am wondering if anyone can suggest a better mix. I heard fentanyl patches have worked well for people with RSD. I just don't know of a better long acting narcotic. What works for everyone?

I may not be the best person to respond as I didn't have much luck with meds controlling my pain and ended up dropping all except Lidoderm patches and clonidine patches (and only the former addresses pain and I only use it for flares). But I will tell you my experience and what DID help me when I was taking meds.

Narcotic pain meds NEVER even TOUCHED the RSD pain for me. I might as well have been taking tic tacs for all the good they did for me. And I've taken them before and since for other types of pain and they do provide me with good relief...just not for my RSD. The best mix of meds I was ever on was a combination of Lyrica, Meloxicam, Tramadol, and Doxepin. This kept me at a pretty consistent 5 on the pain scale and functioning for about a year until a work comp hold up left me without meds cold turkey for a week and then nothing got me back to that level again. I tried those same meds, different meds, and it was no good. Even the small relief I got from some was just not worth the side effects and then I ended up with serotonin syndrome from the meds and that was the end of that.

Everyone is different and hopefully someone else can pop in with suggestions on what works for them. For most...it seems it's more about finding the right combination of meds for the pain, inflammation, something to help sleep, etc. There are so many components to what we deal with when it comes to RSD and we tend to focus the most on the PAIN but when you are on the right combo it can help other things too that will just generally improve our quality of life.

Other things that I use for pain though are a TENS unit, hot baths with Epsom salts, ultrasound heat therapy, heating pads, change in diet, and as I mentioned before the Lidoderm patches. I also avoid the things that trigger my pain as much as possible and adjust how I do things to work within my limitations and avoid pain flares.

Is the IR working at all?

I know finding my mix of meds that work for me giving me a life out of a bed and wheelchair took lots of time and many doctors. I was with one doctor for 3 years who I was doing the ketemamine infusions with which those helped but he just couldnt get the right coctail for me at home to keep me out of the hospitals and wheelchair or crutches. It wasnt untill I met a doctor at a hospital closer to home who is head of pallitive care who worked with me and after a year trying meds at different doses and adding things and removing others he finally found all what Iam on now which thanks to him being understanding and listening I no longer am hospitalized every 2 weeks, I can walk now and have more of a life. I know we are all different and what works for one doesnt work for the other. i think that what make treating RSD so hard is not one person responds to the same treatments. I doubt there are anyone with RSD where they are on the exact same meds, and amounts down to a t.
This is my list its long and some doctors look at it and think my pain doctor is nuts for giving me all of it but its what works and if it means I can have more of a life I will go with it.

Morphine oral
morphine liquid I get both morphines for when I am in more pain and need the med to get in my system faster or i cant swallow the pills.

Prilosec, for stomach pain
Mexilitine its meant for skipping heart buts its also has a use with nerve pain
Meclizine for virdigo
Keppra for nerve pain
Lidoderm Patches
Ketamine nassal spray
Ketamine lossanges
Baclofen muscle relaxer
Fentanyl Patches
Valium
Reglan for my stomach
Dicyclomine for spasms in my stomach
Erythromycin its an antibiotic but its again for my stomach, my rsd in the stomach is bad and ended up with Gastropresis.
Very high doses of vitamine D as no matter how much I take Iam always very low
When I do go into flares they then hospitalize me and give me the ketamine infusions until I feel I can go home.
Like I said it took me years going through so many meds and many bad reactions to lots of them, I never new I was allergic to anything until I got sick and I had to take meds, it was hard for my doctors as many of the meds they would normally give I ended up being allergic many giving me seizures which really scared me. I even reacted to the morphine on first hand so we didnt think I could have it. after lots of reactions I just gave up trying and meds they had me down that I could have demerol but was too afraid to try but after 2 weeks crying in the hospital I though I would give it a try and finally after months of torcher that was the first med that worked. The hospital I am at now though stopped giving so my doctor had to find a new drug, and this now was 4 years after reacting to the morphine. My new doctor thought I should try it again and this time it worked and I didnt react. They just think that I reacted to the first because they gave a high dose by IV and pushed it to hard that it just put me into cardic arrest.
Hopefully other have other meds to share and how they help, just never know which will be that miracle one that drops the pain.

Sam

Sam, what variety of Vit D do you use? I ask b/c my levels were very low and my MD ordered up high levels of Vit D. which my pharmacy had to special order. Months later I found out that the type of Vit D he ordered was inefficient and I should have been taking Vit. D3 (which is over-the-counter and I currently take).-

My partner used to take opana but is now on ms contin because medicaid will not cover opana and at nearly 2,000 a month it's out of the question! She never felt releif from either, they were more to control the peaks and valleys in taking the short term pain pills. She now takes Percocet 10/325s every 3-5 hours and cymbalta 60mg 2x day. The ms contin she also takes 2-3x a day depending on her pain level. These amounts seem very high, and they still don't fully control her pain but on a good day it is down to about a 7. She was taking neurontin and that really helped, but the high dosages basically turned her into a zombie. She was also in a car accident on her 25th birthday (6 years ago) when this all started so her doctors have taken to more short term solutions so she can try to live a little bit of her life rather than worrying about long term effects and having no chance of any kind of life. I would definitely suggest trying cymbalta. There were also times she had taken dilaudid and steroids on top of these medications for 2 weeks to break the pain cycle and try to start over again.

It's going to take a lot of trial and error and frustration. For example, morphine and dilaudid don't really work for her. lyrica and elavil did nothing but high doses of neurontin did but weren't worth the side effects. the hydormorphone in opana worked better for her than the morphine in ms contin. upping the cymbalta to 60mg twice a day instead of 30mg helped some of the nerve pain but also made everything easier to deal with.

The vit D when Iam really low I am given a presciption from the doctor not sure what the brand name is but I get 4,000mg a dose. After I finish whats given then I just take over the counter vit D 1000mg in combination with calcium.

Sam