Reflex Sympathetic Dystrophy Support Group

HI..... to be honest...just about nothing..... I take like excedrine... but I do double up on my Suboxone..... And that helps to an extent..... but there is not anything that works... beings with the Suboxone... the nuro receptors block any opiates, and then if done in like IV...I will go into a deep withdrawl type symptoms.....

This has been a wonderful med for me for the most part.... up until I have times like now...... all I can do, is double up on my suboxone... and pray....

I was interested in the med that they were just talking about...as I have not tried that one..... I have been I think on everything else...... so going to talk to my PMD and see what he thinks........ can not keep going on this way

Hi Trudy

I'm in the same boat as Craig since i also take Suboxone. All I can do during a flare is either up my dose a bit or take things like tylenol pm, or other OTCs. I also have to use all the alternative help i've learned also. Like meditation, breathing and so on.

I also tend to not be able to make it online on those bad days which seem to be every other day.

I just can't wait to get back on Zonegran. Hope that makes a difference.

~Twinkle

Craig,

I'm sorry to hear that your pain has been so bad lately. I hope you can get it down somehow really soon. You're in my prayers!

gail

Craig, I am sorry you have such an increase in pain. I know what having no really effectice breakthrough pain meds feels like. You are in my prayers that you might rest better tonight and be in lower pain tomorrow.

Rev.

Hi Twinkle,

So you are saying that after a nerve block you still can be in pain but the tempature should be different? They never checked the tempature after a nerve block because they already knew the tempature was way different in my arm by a different test. (I don't remember the name of the test) The only reason they did the nerve blocks is to try to help the pain. I had at least 15 of them done by 3 different doctors. Each blamed it on something else why their blocks did not work. One was from the plate in my neck, the next because of the spinal stimulator that was still in me (that did not work) and the third doctor said that it was because of the fact he would have to go as high as C2 which would be too close to my brainstem. I have had SO many tests done on me like an angiogram - to test the blood flow to my arm, a test where they stick a needle in starting with your hand and then all the way up your arm to check the nerves in my arm. The needle would send electricity to the nerves and see if it was nerve damage. Lets just say I have been threw so many tests by famous doctors in Chicago and else where that I began to feel like a guinea pig. All the doctors agreed that I have RSD. I am not sure why they felt they had to put me threw that when by just standing for 5 minutes my hand was blue and my arm would turn a red color. Now my arm is shiney red with no hair on it with red dots that can turn into tiny sores. My arms are so much thinner now from losing the muscle in them and like Rev it 1st attacked where I had surgery and now it is attacking every where. Any how I was just making sure you were not saying that if you did not get relief from the blocks that that meant you did not have RSD. Plus they say it is different when the RSD starts from your spinal cord injury then when it is an injury say from a broken foot or arm. (you gett the point) I can't remember who said but the person who was talking about memory loss I have the same problem. I will go to say something to someone and a common word will just totally escape me. In about 5 to 10 minutes I remember but it is sooo embarassing. Like the fact I forgot who wrote that and I just read that. I hope Twinkles this note makes sense and that is what you where saying.

Cindy61

Fletch2ya (sorry I don't know your real name)

You sound like me, there is no spot the RSD has not effected, eccept my toes. My husband tries to make me laugh when the RSD is really bad, he will ask me how my toes are? Knowing that is about the only part of me that does not hurt.

I don't know how you handle the pain without narcotics. I wear 200mcg fentanyl patches and take dilaudid for break threw pain plus abien to sleep and when I start having spasms I have to take diazapam. When this does not work I go to my doctor for pain shots. The problem is I can not take anything like asprin or motrin because I have ulcers too. So the pain shots are toradol (for inflamation) dilaudid and something for my stomach so I don't get sick. I envy people who can take meds for inflamtion because I probably would not have to go for a pain shot very often then. I know alot of you felt that being on narcotics bad you feel weird but I don't have that problem. I don't feel goofy or weird or what some say like a high feeling. All I feel is a little less pain. I am happy if I can keep my pain at a 5 or 6 but most days it's an 8. But then again it's been 10 years for me. And I know what you mean about ERs. Before I had the doctor I have now it seemed like I lived at the ER. Some doctors where great and some just treated me like I just wanted drugs. Which is so sad because life before RSD I never drank, smoked, never in my life tried drugs and after surgery for my neck only took pain meds for 2 days because they made me sick to my stomach. I use to run 7 miles and weight lifted. I did not even eat junk food. Plus 4 kids and neurotic about keeping my house cleaned. I would feel guilty if I did not vacuum every day and I am talking about a good sized house and I worked part time. I just could get threw to the doctors I DON'T want to take drugs, I just wanted out of pain and my life back. But I guess that was not God's plan for me because I had to accept that I will never be pain free and drugs will be a part of my life and I had to learn not to feel guilty about taking them. Any how Fletch I don't know how you and Rev and others do it, and yes they tried all the non-narcotics like Neurontin and every drug possible. Spent a lot of money that just got tost into the toilet.

Thanks for listening again!

Cindy61

Cindy, I took narcotics for almost 11 years. Still occasionally take morphine (short acting) for extreme pain at night. It just got to the point where the morphine was not even at very high doses even lowering the pain and was affecting my overall health very badly.

I still hurt. Lyrica and all the mind-body techniques I have learned have lowered my daytime pain levels to mostly 5-6 range. Will talk more about that later when I am sure what the on-going reality of that is. At night I still have 8-9 level much of the time and sleep is still 15-30 minutes at a time 2 hours a night average. That's with my mind-techniques.

So being off the narcotics is not fun but they weren't helping at the end. I am more alert, my friends say I am more here. Constipation has eased, lungs are a bit clearer and my primary doc says he is not near as afraid of my immediate demise as he was when I was on such heavy morphine. I am producing paintings at a greater pace and doing some training of service dog teams. So more productive too. But pain has not left me and none of the other affects have either so ...Please know, if my health failing and the fact that the morphine stopped helping hadn't happened. I would still be taking narcotics.

I say we each try to do what makes our pain lower. When we find a formula of meds, treatments, techniques that helps, we stay with it until we have to change or we find a formula that is better for each person.

Rev.

Hello everyone! It has been awhile since I posted. I have had a flare up again and I was climbing a ladder in my garage (mistake #1) My legs were shaking but I just had to get this box (mistake #2) Reaching for the box my legs gave out and I had kicked the ladder and it fell over (mistake#3) I fell over 8ft straight down on the ladder with my left side, (where the RSD is prominent)Long story short, I went to the ER I could hardly breath or move. Needless to say I added to my pain. I fractured or broke 3 ribs and my left arm. After x-rays of my body and head, the doctor or radiologist said I had some placking on my brain. After investigation the placking my wife looked it up on the internet and found out that heavy pain drugs, methadone.dilauid were the main causes of placking because it blocks the receptors in the brain. Therefore preventing the natural endorphins of healing. Has anyone out there heard of this? I don't want to become a drug addict and I would rather not die early because of these drugs used for RSD. HELP!!! chewbie

This is why in some RSD/CRPS patients we have to have more and more of the narcotics for them to relieve pain and why eventually in some of us the narcotics stop having any effect or even start causing pain. Researchers are now trying to find and testing agents that will block this development of plaques, where small bodies of our tissue attach to the cells where the narcotics or endorphins (our own pain killers made in our brains) would normally attach to nerve cells to stop or depress pain. Eventually these bodies form visible on MRI's placques though usually only seen with a microsope. Because right now, some of us who have chronic pain and have been on narcotics for a while can no longer get relief from drugs that kill pain any more because we have developed placques over the surface of the nerve cells that feel pain, that keep the pain killing drugs from working. I have read about this process in reaserch papers and have seen it illustrated but can't remember the paper. I will look for it and will get Howard (our great researcher) to help me look (he is much better than I am at it) and we will see if I can get a link to it in our files. When We find the paper I will also put the link in an email in this topic. The photo will make the formation of placques much clearer.

Rev.

Thanks Rev, is it okay to send a link on here? I just found some info on the brain & pain! Thanks chewbie