I can't take them, just one ibuprofen(advil) and within 45 minutes to an hour, it feels as if I'm going to puke blood, very painful. For almost a week after, I must have food constantly in my stomach or my ulcer acts up. (guess it's an ulcer) I found through trial and error that percocet and soma when combined had lower needed dosages and better painkilling properties, as well as fewer side effects. (didn't need as much percocet, which made me nauseous when I took enough to settle the pain) Also on serax, a tranquilizer, and the three combined have made life bearable, with very little sleepiness or other effects. As the pain increased, and I got diagnosed properly, I needed to be put on long acting percocet(oxycontin) and for some reason I needed welbutrin for depression. I consider myself blessed as the meds I'm on have very few side effects as compared to some of the newer drugs, ie neurontin, etc. If your pain continues to increase, you may want to try low doses of a combination of painkiller, tranquilizer and muscle relaxer, for as you are fairly young, the effects of the new meds might be very contraindicated. Also, using low dose multiple drugs have fewer nausea problems. Please research any meds before you use them, the health consequences can be disastrous, and if it's a choice between physical addiction or liver/kidney/whatever damage, well, always pick something that has the lowest risk. Having RSD is bad enough without having some other hateful problem. God Bless ya young one, and all the rest of us as well. Later, Smoke

Managing rsd, is an hour to hour ordeal, often.
About the "use it or lose it", we all have delayed pain when we go beyond or normal activity levels. UioLi is not meant that we need to lift weights and jog 20 miles/day!
It simply means, that sometimes you hafto work through the pain and stiffness, and loosen up. I myself wake up in pain, and feel better as the day goes on, (if I'm not being too physical). And, my meds eventually kick in.

As far as Aleve, I merely recomended that to DEW, who was having a bad day on Sunday. It's just as a "change up" strategy. Sometimes, when nothing seems to help for the pain, we've got to change our situ. Weather it be stressors, temperature, (sometimes a hot bath/sometimes a cool shower) positional, humidity, meds not working is what I recomended the Aleve for.
Tylenol and Motrin are both useless to me. Tylenol hurts the liver (the FDA is now calling for a stricter warning for Tylenol), and Motrin just makes me ill.
Aleve seems to be the best choice, for me. (Find which one is best for You!)
And, if my meds aren't cutting it at one time or another, I take two.
And, they often help!
Simple as that really.

Good feelings to All!

Pete
Asb

Thanks again. I got the reg aleve but Mrs D I will try the one you are talking next time. I took 2 yesterday iafter the meds like vicodin for a break but did not see much relief. I have no clue. I just overdid it and combo of cold rain I think made me worse. I have been trying to find summer clothes and putting my leg in and out of pants is a killer. I have a pain apts next week and am going to ask about other as needed meds. I thought my new combo of meds neurontin,cymbalta,klonopin,serequel but it is not now. So frustrating but I am not on full doses. Hate having to worry about every factor in life. Trust me I went a year plus with no meds other then maybe a few vicodin through the year of this cause I tried so many and don't want more problems if they were not helping. Then it got to the point a few months ago where the pain is just too much and my life is so small so I started to do procedures which made me worse and now meds. I have had hgh liver problems and at what time they though pancreatitis but it was before my rsd and not my liver results have been better but it is a concern but at the same time when one pain comes on strong it seems like I care less about that. Ugh thanks again

Hi Daniella,
Just looking over what you wrote, I'm very sorry that your pain is so severe.
It doesn't seem to me, that you're on any kind of real "pain" med.
Neurontin can help (I've never used it, but it seems an adjunct to opana or methadone, from what I know),
Cymbalta, is an anti depressant, that has some pain relieving qualities.
Klonopin is basically long acting valium.
Seroquel is an "Atypical", and you should google this one. It's very over prescribed for "off label" use, for instance, sleep. It's NOT a sleep med, it's for BiPolar disorder and severe mental illness.
I know a few people who had some REAL issues with it! Be Very careful with Seroquel! I've seen people wake in the middle of the night "act out", and not remember half of what they did!

It seems you need to speak to your doctor, and be sure that S/He realizes that you are NOT getting sufficient pain relief!
I'm Not a doctor, but it seems that something on the order of a stronger pain med is indicated.

I hope you get some relief, soon!

Pete

Thank you so much for looking through this. I actually have as needed meds but basically take them only every few months in the horrid flare ups though I did 2 days ago. I have as need vicodin and darvocet. I tried tramadol and naproxen in the past. I am not big on as needed meds as in my flare up I am still in crying pain. Also the multiple pain docs I have seen are not big into narcotics. I am going to ask though next week for a better as needed just for the once an awhile. Thanks again

daniella,

You and my other NT buddies, have been in my prayers. I have been down the past week with a flare of my own. You have received good feedback from these wise folks.

Listen to your body, write down what bothers you or what leads up to your break thru pain. Once you see your pain doc, go over each med. Explain how you feel and that your only focus is on getting through each day in the least amount of pain as possible.

If the doc attempts to rush you..address him and state," I need you to hear me..help me."

Dew

I dunno why, exactly, but I don't have much in the way of super flare ups as most of you describe. If I feel some really hateful pain coming on, I hammer it fast with fairly heavy doses of pain meds. I was told by a good doc some years ago that if you are taking percocet and you wait for the pain to get bad enough to need them, there is a lower ability of the med to stop the pain.(I compared it to migraines. If you wait til it's a 7 on the scale, you can't get it below that level, it just won't progress) If you feel it coming and hit it hard right off the bat, the meds keep the total high end pain at a lower level. This has been my experience, anyway. Anyone who has had PT for a back sprain might have heard of guarding, that is, holding the affected area still, which actually makes the pain worse? (the muscles get tighter and then spasm) Well, I guard my leg when it hurts badly, so when it's looking like a rough one, I pop a little more than usual and walk the mall until the meds kick, the pain settles and I actually feel the burn from the walking. I guess it's warmed up then, and I consciously relax my leg to let it move as naturally as possible. Yeah, it hurts really badly right afterward, but once rested for a half an hour or so, I guess the lactic acid caught in my knee leaches out(?) and I feel much better. (I assume lactic acid because I have very painful spasms just like tiny charley horses in my knee) I do this regimen every other day, usually trying to time it to when the cutest girls are at the mall. (For medical reasons. It takes my mind off the pain. That's my story, and I'm sticking to it) Well, I am off. Today there is a cancer walk at the local college and I'll fore go the mall. My grandmother who helped raise me and was like a mother to me died of cancer, as did my grandfather, and I find it a win-win-win. Good cause, raising money for the Cancer Society, good exercise for my leg, and my my my...have you seen some of the girls at the colleges??? Wow. I am also hoping that a disabled individual walking for cancer with a cane might get some media attention, perhaps I can help educate the public about our condition as well. Hmm. Should have said a win-win-win-win.

I know I may be a bit of an odd duck, but the advice I gave in regards the meds (opiates anyways) and about the exercise is sound. I've found that the more I move naturally the less it hurts later. Give it a try, lemme know how it works for you. Later all. Smoke

This has been my big problem since I first realized that the pain is a result of activity. It leads to fear and the fear impedes doing things. We have to keep moving and exercising or we'll go down fast.

My best bet is to avoid things that cause the most trouble and years of experience say that in physical activity that means working with my left hand over my head. It also means grasping repeatedly or strongly.

This will sound crazy but since I've gotten the RSD I've come to believe that many of our parts are conscious and re fully aware of their function and some of the activity in the brain. This is part of what is called "muscle memory" but goes well beyond this. We aren't conscious of these parts because the brain has far too much to worry about without having to screen out an "angry" stomach or a "screaming" hand. RSD seems to break down this barrier a little and I'm vaguely conscious of my hand. At least there does seem to be some little signals that I pick up on now and didn't before. It usually "tells me" when I'm overdoing it. It feels a little like a moment of pseudoparalysis or just an inkling that it's had enough. Stretching the muscles frequently seems to help.

If you put your hand straight out to your side with the palm open then twist your thumb up and to the back it ill stretch the median? nerve. This can be surprisingly intense so go very easy at first and don't do repetitions. If it helps then dip your head to the opposite side and you'll get even more stretch. It doesn't sound like much but it really gives the nerve a stretch which helps me a little.

Cold and temperature change are really hard on the hand so I have to wrap it.

I always sort of "ask" the hand to do something before I do it. If it says no then I'll use a different method to do the job. Doing little easy jobs that require the hands will give me terrible trouble the next day if I forget there's a problem. As long as I remember it seems to help a lot. The hardest things are when there is no choice. Giving first aid or something like this which has to be done and then I'm more likely to forget and more likely to be stressed. I find if I do what I can, I do a lot more than I do what I must.

A lot of overdoing it doesn't even involve the hand. I can overdo things with the hand in a cast now since my limitations are greater. I suppose the RSD is spread enough that anything I do can be too much. Diet and avoiding stress are critical.

It's so frightening since it's not getting better. I keep getting better at handling it while it mostly just gets a little worse.

You really touched a nerve with this thread since this is the basis of my predicament. It's probably similar for most of us as far as that goes though. If the dang thing would just hurt when I ate too big a piece of cake or touched something it would be easy to avoid the stressors. But it usually just waits until 24 or 48 hours later to give me hell.

Sorry for all the rambling.