Re: Question on meds

[Guest guest]

Helen - I take levorphanol 2 to 4 mg four times daily and am now also re-starting the use of the duragesic patch. I also use the lidoderm patches at night or when I need to use my hand for sewing (it sort of acts like a buffer by being between my skin and where the material brushes against it as I sew). Not tons of relief and not yet back at work, but I'm determined to be working by the end of January and I'm hopeful. I too am one of the folks for which the SCS didn't work.....too positional. Had to have my head up my butt for the dratted thing to cut on. BarbaraHelen wrote:

Hi everyone --I have been reading the posts re meds. I was on the Duragesic patch a few years ago and quickly moved up to a high dose. My primary doc was not happy with this because he thought I should only take meds when I needed them. So, I went off them and switched to Talwin. None of the meds worked very well. I have been on just about everything all of you have mentioned. Currently, I am on 100 mg MS contin three times day, and occasionally double the dose as needed. Also, I have a ketamine cream and lidoderm patches. The blocks no longer work so I had an SCS implanted in June. Still, there is not much relief from pain. Although after last weekend without the MS Contin, I guess it does work some. Are any of you ever truly free of pain, even for an hour or two? I am at a point where the pain is running and ruining my

life. The RSD is spreading and I think it is now affecting my skin. Has anyone experienced the changes in skin, etc, that are supposed to come with some cases of advanced RSD? If so, would you please describe the changes? Also, if you are having any luck with meds relieving your pain, would you please let me know what you take? I would like to ask my pain doc to try again with meds. I don't think I am getting as much relief as I can. (Can you believe, my primary doc has once again mentioned amputation!)Sorry if I am a downer lately. It seems like every day I find out something else I can no longer do without causing severe pain. I am not having a very good year with this monster and some days I hang by a thread. Wouldn't it be nice for all of us if someone came up with a cure or a real treatment for RSD next year? Well, God bless you all and grant you many soft hugs and pain free days. If I don't write before then, I hope

you all have a blessed holiday. Thank you for being there for me when I've needed you most.Love, Helen

[Guest guest]

Helen: Hi! I feel the same way you do about things. My pain never goes away it's been with me 24/7. I go days without sleep, or I dose for an hour or so on the computer. My family don't know what to think about me. I can't sleep anymore because of this " Monster called RSD". I have NEVER been out of pain for one day or for one second. Gosh I how I would give anything I had to have some kind of relief for a week or so. This itself would be a MIRACLE!!! My RSD started in my left leg and then went on to my right leg. Which I can't understand how it spread there. I have never hurt my right leg. My doctor said the strength in my right leg is worse than the strength in my left leg. I had the nerve cut in my left leg. My skin has been changing for sometime now. It's been very shiny and tight, very red and very itchy, my feet are turning purple and blue at times. It's so weird, I have so much pressure in my left leg and foot right now, it feels like it could fall

off!!!. Now it's so cold today, my leg and outside. It's going to be in the 20's and the low at 8 degrees tonight. I react very bad to the COLD and to the HEAT, there is no in between for me. It stinks!!! I take Methadone 40 mgs 4 to 5 tabs daily but I have been on this since December 2000. It's been the best pain control I have ever had. I swear by it, and I take Loracet 10/325 mgs 1-3 daily for the break-thru pain with Soma 350 mgs 2 tabs daily. I have terrible muscle pain and I have horrible burning pain with muscle pain all the time. I also have been diagnosed with Fibromyalgia on top of RSD. I have tried the SCS but had a horrible infection because of it, so it had to be taken out. My doctor keeps bringing up the Morphine Pump but I don't want to do it because of what happen to me before with the SCS. That made my RSD spread up my back more. You said you have the Ketamine creme, how long have you been on this? I want to get more of this creme, but I didn't think you can get any

more because of the treatment with the ketmine therapy. This creme has helped me in the past, with the burning and it numbs my leg and believe me I would take any kind of relief right now. Sorry for the book, I hope you get some kind of relief soon, Helen. Also, Have a Merry Christmas and Happy New Year, maybe it will be a better year for us all if they could find a miracle drug to stop all this horrible hell everyone is going through. Sorry about that, I just had to vent. Ha! Take care! Janet U.Helen wrote:

Hi everyone --I have been reading the posts re meds. I was on the Duragesic patch a few years ago and quickly moved up to a high dose. My primary doc was not happy with this because he thought I should only take meds when I needed them. So, I went off them and switched to Talwin. None of the meds worked very well. I have been on just about everything all of you have mentioned. Currently, I am on 100 mg MS contin three times day, and occasionally double the dose as needed. Also, I have a ketamine cream and lidoderm patches. The blocks no longer work so I had an SCS implanted in June. Still, there is not much relief from pain. Although after last weekend without the MS Contin, I guess it does work some. Are any of you ever truly free of pain, even for an hour or

two? I am at a point where the pain is running and ruining my life. The RSD is spreading and I think it is now affecting my skin. Has anyone experienced the changes in skin, etc, that are supposed to come with some cases of advanced RSD? If so, would you please describe the changes? Also, if you are having any luck with meds relieving your pain, would you please let me know what you take? I would like to ask my pain doc to try again with meds. I don't think I am getting as much relief as I can. (Can you believe, my primary doc has once again mentioned amputation!)Sorry if I am a downer lately. It seems like every day I find out something else I can no longer do without causing severe pain. I am not having a very good year with this monster and some days I hang by a thread. Wouldn't it be nice for all of us if someone came up with a cure or a real treatment for

RSD next year? Well, God bless you all and grant you many soft hugs and pain free days. If I don't write before then, I hope you all have a blessed holiday. Thank you for being there for me when I've needed you most.Love, Helen

[Guest guest]

Helen,

The very, very first thing I would do if I was you, would be to get rid of your primary doctor! He obviously knows nothing about RSD and if he did his reading and had any type of knowledge about RSD he would know that amputations can cause even more problems with RSD!!!! I know you are much smarter than that, but do know that amputation should never be an option for RSD!!!!

I have also taken many different drugs for my pain and the best result I have had is with methadone! Even though my doctor says it will never completely take the pain away, I find that it has helped me the most! I was gradually increased three times and take 60mg daily with my other meds, like Paxil, and Nifedipine!!! I do not think any of us will ever feel new again, but do think there are meds that help each one of us a little better than the other. If you have never tried the methadone, I would suggest giving it a try.

Well take care and wishing you a happy and joyous holiday season! Please try to get some rest and hope and pray for less pain! LOL and Best Wishes Always!

Dawn

Helen wrote:

Hi everyone --I have been reading the posts re meds. I was on the Duragesic patch a few years ago and quickly moved up to a high dose. My primary doc was not happy with this because he thought I should only take meds when I needed them. So, I went off them and switched to Talwin. None of the meds worked very well. I have been on just about everything all of you have mentioned. Currently, I am on 100 mg MS contin three times day, and occasionally double the dose as needed. Also, I have a ketamine cream and lidoderm patches. The blocks no longer work so I had an SCS implanted in June. Still, there is not much relief from pain. Although after last weekend without the MS Contin, I guess it does work some. Are any of you ever truly free of pain, even for an hour or

two? I am at a point where the pain is running and ruining my life. The RSD is spreading and I think it is now affecting my skin. Has anyone experienced the changes in skin, etc, that are supposed to come with some cases of advanced RSD? If so, would you please describe the changes? Also, if you are having any luck with meds relieving your pain, would you please let me know what you take? I would like to ask my pain doc to try again with meds. I don't think I am getting as much relief as I can. (Can you believe, my primary doc has once again mentioned amputation!)Sorry if I am a downer lately. It seems like every day I find out something else I can no longer do without causing severe pain. I am not having a very good year with this monster and some days I hang by a thread. Wouldn't it be nice for all of us if someone came up with a cure or a real treatment for

RSD next year? Well, God bless you all and grant you many soft hugs and pain free days. If I don't write before then, I hope you all have a blessed holiday. Thank you for being there for me when I've needed you most.Love, Helen