I am not on any meds soley for my RSD/CRPS. Some of the meds I am on do help the RSD/CRPS. For instance, I am on Neurontin for my seizures and Elavil for nerve pain, both of which also can help RSD/CRPS.

My RSD/CRPS is treated in a variety of ways-- Botox, and other interventional/procedure type things. Plus massage, TENS unit, light excersice etc.

Each of us has to find what works for us and each dr will have their own ideas as well. My "course of treatment" has changed an evolved several times when my diagnosis has and when I've changed doctors.

Good Luck and hang in there !
L2L

Fewdalord, I know you started this Post as to find out who DID NOT take pain meds. Unfortunately, it seems, alot of us do. I wish I didn't have to.

In 2001 the dr's had me on so many meds, I was in a completely different world and it was unnecessary. I had to go to Columbia Presb in NYC for 2 weeks to get completely taken off all meds. It wan't tough. They give you methadone to help. Actually, it was depressing being away from my family.

Meds are not always the answer and I pray that most of us can find a way to do without. Unfortunately, for some of us, me inparticular, I could not survive a day without. I could not get out of bed and get my children ready for school. I could not go to my office (part time, I am the owner) or make dinner. Laundry. Basics. There are mornings that the meds don't work and I stand in the shower and cry. Hoping no one will hear. I figure that's the best place, the water hides the sound. The car's a good place too.

My husband doesn't understand. He doesn't believe I'm in that much pain. But, then again, he doesn't come to the doctor's with me and hear what they say, my mother does.

Any way, I hope you find a way to get by without, but, if not, don't kick yourself. Life is very short and who wants to live in pain.

Best of luck, Linda

I haven't taken ANY pain medications for several years...

I found out through trial and error that I am severely allergic to every narcotic pain medication out there... My throat swelled shut and my breathing became extremely shallow with each drug we tried.

How do I deal with the pain that is a constant 9 - 10 level for me??? I am unable to do many things... I often pass out because of the pain... I do take Lyrica, Cymbalta, Baclofen... basically treat the symptoms. It takes a very small edge off of the overall RSD pain picture.

I wish there was a pain medication that I could take that didn't fall under the opiod/narcotic pain killer catagory.... I'm tired of hurting...


Abbie

WOW - Have you booked an appt. with any of the docs (Schwartzman or Kirkpatrick) that are known for their work with ketamine? Do you know if you can tolerate lidocaine? Schwartzman has also done some studies on that at Drexel in Philly.

I understand that these drugs are becoming more available at other medical centers. For instance, ketamine is available at the Beth Israel in Boston (if your insurance will allow, I'm trying for approval, but so far haven't gotten it from WC).

So sorry for your pain - I am actually humbled by it, because I know what a mess I was for the few months that I suffered with inadequate meds. You are awesome.

Sandy

None of the pain meds really work for me. Morphine comes closest but it took four shots of it just to get me to quit screaming. Methadone is extremely interesting since it does make me care a little less about the pain and then it acts like an analgesic the day after I take it! I enjoy it so I'm afraid of it and this goes double since it doesn't really work. Nothing else has any effect on my hand except (thank god) I get a little relief from tramadol in high doses. I'm afraid if I use it a lot it will lose its effectiveness so only use it for flares. Tylenol 3 is very helpful for easing other pain and helping me get to sleep. I have a brief and narrow window of opportunity to get to sleep and the tylenol extends it.

I'm just afraid of the pain killers but will probably ask for them if it might be a last resort.

The most effective pain relief for me is distraction.

Hi Sandy... yes, we (my doctor and I) have contacted both Drs Schwartzman and Kirkpatrick... unfortunately due to my severe allergic reactions... ketamine has also been ruled out by both doctors.

I can not tolerate lidocaine.... never have been able to... it makes me very very sick.. I swell up and vomit severely.

Abbie, I would recommend talking to your doctor about suboxone. I dont know how much you will find researching it its very new to be used as pain treatment. But I dont believe its a narcotic. It might be something you could take that will help you. I really hope it is. How awful that you live daily in such horrible pain.
Hugs, Denny

Hi Denny!

Thank you for the recommendation!

However, Suboxone is a combination of Buprenorphine and Naloxone ---A narcotic analgesic combination - treats Opiate Dependence .
http://www.healthline.com/multumcont...ne-naloxone%29

I don't think I will be trying this one... don't want to risk another severe reaction. I guess I have to keep on searching....


Abbie

I am so sorry for your horrible reactions to these medications. I feel like a little child complaining about a bee sting when you have pain that is unable to be relieved. I am sorry. Unfortuanately we are all different. But, to be unable to get pain relief is beyond my comprehension. I know I can only take so many pills, or do so much, but, to not have ANY relief is hard to swallow. I have tried accupuncture, PT, biofeedback, etc. The idea that you are in such bad pain all the time really bothers me. I hope you can find something that helps. Linda

I am sorry too for others who have not found better relief. I don't take narcotic on a regular basis. I did have to go back for a few days to them after my nerve block flare up and that was vicodin and darvocet but on a regular basis I don't. When this started 2 years ago I took vicodin every few hours and was crying through pain still. My doctors feel that for me it is not the way to go long term. The past few months though like I said when I am in crying pain I will take darvocet or vicodin. I often wonder if I were to take these things now since I am in a better place then when this started but still am very limited and have many days of crying pain if I would have better quality of life. I am not sure since invasive treatments are not working with me so well. I am back on neurontin,serequal,klonopin,and cymbalta. I have tried these types of meds too in the past with out relief
Abbi what about treatments like a scs or a pain pump though I am not sure if that would be the same thing with med reactions.