I asked my dr if the pain I feel when my pills wear off and I'm due for my next does is because of withdrawl symptoms from my meds or because of rsd pain. He told me that the withdrawl symptoms from pills are different than those from the pain from rsd. What I had was pain from the rsd after my drugs wore off and I was due for more meds. Withdrawl from pain meds can include vomiting, chills, headaches, trouble speaking and incoherency. The pain from rsd can include swelling, redness of joints, burning or coldness in affected areas, intense internal pain in the muscles and tissues in the affected areas and limited range of motion in affected areas and disfigurement of rsd areas and spread of pain and physical symptoms. I've been through both, when the hospital I was in screwed up after my hysterectomy and didn't give me the meds I needed for my rsd. There is a big difference and they both stink. I just wanted to let you know my experience and what my drs have told me. Thanks.

Lol Tessa, it wasn't a question, that was just the icon for confused!!

Bram.

I spoke to my pm dr about taking percocet along with my neurontin. He said it's fine because it is not a high dose and if it helps my rsd pain then it's ok to take. It shouldn't hurt me in other ways. I've tried to take more neurontin, but have trouble with the side effects. I also only take additional percs after major surgeries because my stomach gets too upset if I take more of them. The combination I take of percocet and neurontin seem to help me cope with pain better and numb it a little. My pm drs are really good and have helped me to diagnose this disease early on. I still have a lot of pain, but they help me cope with it and I trust what they say. My other drs are okay with this combination of meds too. This may not work for everyone, but it does for me. I know Vrae takes alot more neurontin than I do, but I just can't tolerate a higher does than what I already take. I've tried but couldn't handle the side effects. We are all different and react differently to side effects and the pain of rsd. But the one thing we all have in common is the intense pain and stress we feel with this horrible disease. That's why IMO we need to stick together to help support each other and try to educate others so that a cure may someday be found. I hope you all have a good night. My fingers are hurting so I'm calling it a day. Take care.

Becareful when first trying it
Heres my recipie
Take 2 buds put in pot with water boil to get rid of clorifil
Then remove water and replace with full cream milk and bring to simmer
add milo 2teaspoon and 2 sugers stir
Then strain into cups should get two cups that should give you five hours relief
Try one bud for a start and go from there

You can try smoking it but i know people that it actually increased there pain
Hope this helps it beats taking opiates they did nothing for me.

I just wanted to say that the fear of side effects on certain drugs or procedures could be harmful if disregarded. Yes, maybe the side effects will subside and help ease the pain of rsd, but some if tried could cause irreversible damage like paralysis or infection or spread due to our weakened immune system from rsd like with the neurostimulator. I took great thought in deciding whether or not to do the Neurostimulator. Though my pm dr thought it might help the odds were not great and the chance of me getting a serious infection or spread were. I was told that the chance of getting rsd from surgery was rare, though I still got that, so I didn't want to take a chance on getting an infection or spread from a Neurostimulator. I had checked with all of my drs and the majority like my neurologist and gp said not to do it and that some drs just want to do it to make money off of it. Apparently it costs alot of money to do this procedure. I decided against it and am taking my pain meds and exercise instead. Everyone is different and maybe the Nuersostimulator has helped some people, but it wasn't a chance I wanted to take. I also have scoliosis that concerns me too. I don't think that means that I made a mistake for not choosing it because I was afraid, because I think my fears were justified as did many of my drs. I got an infection after the two surgeries I had last year and also after dental work done in my mouth as well as rsd spread, so I don't think it's irrational to feel this way. It's just my opinion, but wanted to share my experience about this situation. Thanks.

I've had this monster since 2008 and I'm currently taking:

Topamax ~ 50mg morning and 100mg evening
Nortriptalyne ~ 10mg in the evening
Tizanidine ~ 4mg in the evening
Norco ~ 1 every 8 hours
Methadone ~ 5mg 2 every 8 hours

I might have a spread coming to my right eye so have been worried lately. Not even sure if this is possible? I have CRPS II in my right wrist, arm, neck and portion of my leg. I can say that of all the meds I've taken over the past few years, I do think that I've benefitted the most from the combination above.

I am always looking for new things or up dates on crps
and i found this youtube video which talks about how opiates dont actually
work crps hard to explain i not that bright so heres the link

http://youtu.be/6_NzhnAXX2c well worth a look

And also this TMJ its a mouth guard thing you put in your mouth
and seems to do wonders for these people with crps

http://youtu.be/FpREpF1Xl-U

Please let me know what you think sorry i should of started my own thread
but dont have a clue how all new to this forum stuff only had broadband for
couple of weeks

anyway hope this helps someone


Rock on Peace out

Renee,

I was in NO WAY insinuating that taking more or less medications by any of us was good, bad or suggested pain was higher or lower .. what I said was that I wish I was in her shoes and could get by with that amount and that she was lucky to be in that place.

Regarding fear.. yes fear plays a huge role in how we perceive any type of treatment whether it be medications, therapy or whatever. If there is fear or worry prior to attempting the said treatment studies have proven over and over that the results of said treatment aren't as good. That is not to say that all of input or research isn't good in fact just the opposite everyone should research recommendations on their own and discuss any concerns with the provider prior to going forward with it. With medication(s) I was simply emphasizing the need sometimes to endure a few side effects or adjustments in dosage to allow for the effects to work.. clearly I was not saying that regarding life threatening side effects but, the kind of effects like nausea, dry mouth, fogginess etc., that we often experience. Neuroodulation or SCS is a completely different story and yes there are risks and those just like anything else should be carefully considered before going forward. I never once indicated that your choice in not going forward with that was wrong or anyone else's choice for that matter. I personally have had great success with mine and although it doesn't free me of all my pain it is the only reason I can walk or stand up straight and so I am very happy it was offered to me. I only mentioned it on my list because like vitamins, I think it is an important part of my pain management/medication list and that is what I thought you wanted in your original post.

I never put you down or anyone else down for the path or scripts you choose. What I did on a few posts was ask you what you were taking because I was concerned that you were hitting several very dark places in a short amount of time and I wondered if you were being offered things that could space these lows further apart. I still question your doctors judgement in having you on percocet for such a long time along with advil and zoloft as the 3 do have deadly side effects. Especially considering you have stomach issues - that alone should be a huge red flag and at the very least switch you from Percs to something without acetominephen or suggest tylenol instead of ibuprofen products.. then add the zoloft to the mix and you are at an even greater risk for problems outside of your RSD. I am certainly not a doctor but, doctors have given me these warnings when I was taking the same things after many orthopedic surgeries and my sister ended up in the hospital with a massive silent ulcer after months of taking the 3 together that I mentioned above.

My comments weren't to offend you or anyone else. Yes, I did think Bram was asking a question and I mentioned that.. I am sorry if you were offended it wasn't intentional my intentions are always with a kind heart and concern ALWAYS.

One med that I was given when no med was working or was reacting to others was demerol it doesnt work the same as other narcotics I was told but it really did give me great help, its an old med and many doctors are getting out of it.

Hi Freebird, thanks for sharing. I would like to give this a try. I have a question... Full cream, like heavy whipping cream?