Reflex Sympathetic Dystrophy Support Group

My question is this (if you feel comfortable sharing):

What meds do you take for RSD pain?

Which are preventatives and which are pain meds?

What is the dosage or how many times a day (If you feel comfortable with that)?

How well does this work for you? How well does it control your pain?

Thanks and I do realize that we all respond to meds differently.

The only meds for the pain are the demerol and ketamine, the rest is for spasms, muscle relaxer, and one for virtigo.

They work just as well as they can, I am unable to take any other pain meds like morphine and dilaudid due to severe reactions. The ketamine infusions is the one that helps the most, it doesnt take away all the pain but it does keep me out of the ER's in flares. When I do go into flares I go to the ER and am given 150-250mg of IV demerol which really brings down the flare fast.

Niki

Currently I am taking Suboxone 8mg 2x a day and Cymbalta 120mg a day.

Previously, I was taking Morphine 15mgs x 3, Cymbalta 120mg decreased to 60mgs for a couple of months, Zanaflex/Tizanadine 24mgs a day, Klonopin/Clonazapam 2, 2mgs 3x a day, Neurontin/Gabapentin up to 3,200 mgs a day and Lidocaine/Lidoderme patches.

I know many of you have followed me during my decrease of meds which occurred during my Functional Restoration Program. Our bodies have the ability to produce a natural pain killer.. and I cannot at all say this isn't true as I have been surviving, but it's been very hard.

I'm also weaning down on the Suboxone from my originally prescribed 20mg a day to now 16 and at my next appt it will be decreased again.

I'm going to admit here that I'm barely coping with the lack of meds, but am also at the same time proud.

Unfortunately, I may need to ask for some of them back.

good question as we've had several new members join since the question was last presented.

Warm wishes,

~Twinkle

P.S. Edited to add only Suboxone is for pain. (and tons of OTC Ibuprofen and Tylenol PM etc.)

Post edited by: rsdcrpsfire, at: 11/01/2009 07:46 PM

Ultram 50 mg. 1 tablet every 6 hours for pain

Percoset 10/325 1 to 1 1/2 tablets every 6 hours for pain

Zanaflex 4 mg. 1 tablet every 8 hours for muscle spasms

Trazadone 50 mg. 1 tablet at bedtime for nerve pain and insomnia

Ativan 1 mg. 1 tablet at bedtime for insomnia

Lunesta 3 mg. 1 tablet at bedtime for insomnia

While nothing ever takes the pain completely away. This combination of meds normally allows me enough relief to be able to function at a limited level each day. However, I am currently in a flare that seems unending. So, we may need to do some additional tweaking of my meds and dosages or even some changes of meds the next time I see my doctor.

Hope this info helps.

Vicki

My previous doctor kept adding and adding drugs and then when I could no longer function, he added Ritalin to wake me up. I took everything on this page except morphine. And, all at the same time. There are even some drugs no one has mentioned yet like Zonegran, trazadone,Fentora, Actiq (lollipops)and Provigil (another drug to wake me up).

I started the medications because the pain was unbearable. Looking back, the pain never went away. My mind did! The nightmare that happened from the drugs is worse than what you see in the movies.

I know not everyone is in a position to stop most of their medications like I did. I am not advocating for it. I just want to let people know it can be done, slowly, safely and your body remembers how to produce the endorphins again by itself. It is prevented from doing that because of the effect of certain types of painkillers.

I am almost totally drug free now except an occasional 5mg of methadone on a really bad day. I did not regain the use of my limbs, but I exercise every day and hope to get some of my physical abilities back. I have a wheelchair and a great husband to lean on. He still has to do almost everything, but he is just glad to have back his wife mentally. Is was very hard on him when I was losing it.

Again, please don't think I am recommending this for everyone. We all have personal issues to consider. But, I will be there for anyone going through it. I know how hard it is, but I also know the rewards of a clear mind again. If I get in the position again of unbearable pain, I am not too ashamed to look again at medication. But, the next time I will be aware of the drawbacks and chose my medications carefully.

I do tend to agree with you. It can be done. I've done it, it's not easy and I suspect a few may even think that our pain must not have been so bad for us to be able to do this which is farthest from the truth. What happens is that after awhile it isn't really going to matter how much our meds are increased or how many times they change, we build up a tolerance and eventually nothing will work and we're still just as miserable.

Another thing that we both mentioned to a point is endorphins our bodies natural ability to fight pain.

I too am not advocating for anyone to quit theirs because as I previously mentioned I may need to ask my PMD for something back especially since my Dystonia has worsened as a result. I think at most the Tizanadine would do me better because there just isn't any decent sleep for me. I'm either up for days or I seem to sleep a day away and that sleep isn't even refreshing.

My current pain med is Suboxone similar in some ways to Methadone.

I have taken Zonegran and Trazadone in the past. I don't recall the mgs of Zonegran as I took it briefly prior to switching to Neurontin which I remained on 5 years. The Trazadone was prescribed at 100mgs to 300mgs a night. (eeps) I discontinued it.

I was also on Depakote 2,500mgs a day and Wellbutrin 400mgs a day. Quite those two cold turkey a few years back.

'Course after nearly 9 years of being on 5-8 different types of meds a day (going through dozens of different types) it really has done my body good.

I will though not have shame to go back on another, I know I tried and did it, but sometimes we can only hold on so long before we need intervention again.

Warmest wishes,

~Twinkle

My life is neither pain free or fun. But, I had a choice to make: either start living again (and that requires presence of mind) or end it. I chose the former. It was not a fast or easy decision. For many years I thought my life was not worth living. Disfigured, unable to even cut up my own food, in such severe pain I see red.

Pain is subjective. The more you think about it, the worse it becomes until all you know is misery. I refuse to let the pain run my life. I refuse to let RSD define me as a person. I do not think of myself as "disabled", "sick" or "helpless". Even though others may look at me that way, that's their problem.