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! :hug:

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...hope u feel better soon
 

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."
:hug:
Dew

weird
 

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

Hi. That is nice of you with the cancer walk. I think you should feel very proud. I have been able to do so much more since I got RSD but my pain goes in such extremes. I also have seen 4 plus pain specialists and couple that are known for rsd treatment and they are not into the meds you are stating. I have vicodin or darvocet but when my pain gets super high it is just not enough that is why I am hoping those meds that are like neurontin will get me to a better point. The treatments like blocks actually make me worse so right now an item like scs is way on hold. I do feel moving is key but finding a balance. I just don't get the delayed aspect of it as well.
On a side note Mrs D I took the Aleve liquid gel pills today and I think they are better then the other kind too. Thanks so much.
Many thoughts and I hope you have a good day

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.

bummer
 

College is out for the summer. Few pretty girls...lol...as our team didn't even get enough people, I decided to walk from town to the event, as opposed to walking the track. Mistake. Up hills, down hills, pushing the baby carriage, well...talk about pain. Damn, it hurt then, and way more later, for the balance of this week.

As far as the 'pain specialists', I find it ironic that the last thing they want to do is stop the pain. 'Here, let's stab you in the spine','here, take this pill, the side effects are horrid, and it only works 30% of the time, but that's what we're gonna do','have some physical therapy, oh, you can't take ibuprofen, too bad, no painkillers for you, suffer'. I've been to two of these people and never have I seen such a doublespeak in the name of the clinic alone. I personally believe they are fully funded by the drug companies to see what the drugs do to those who have no other choice. Find a good GP. The good docs usually do things in this order; 1) get a firm diagnosis 2) try meds 3) try other meds 4) try other meds The meds get more dangerous as they go down the list 5) make damn sure of what you have 6) try something invasive, via a pain specialist. The Pain Specialists do it in the reverse order. The first thing they want to do is stick your spine. If that fails, they want to operate. If you refuse or that fails, they want to give you the least effective med with the most risk of side effects, and only once they've run out of options do they MAYBE give you an actual painkiller. More likely, they refer you to someone else, who does the same thing they did. Yer best bet is to avoid pain specialists altogether, in my experience anyways, and find yourself an old fashioned doctor, usually, although not always, someone who has been in the profession for quite a few years. The young docs are unconcerned, it seems, with how badly they can ruin your life,(kickbacks?) whereas the older docs seem to actually care if they hurt you whilst trying to help. I had one 'doctor', and I use that word very loosely, after I had bounced an engine off my knee some years back, tell me she never prescribes opiates, and never would. "You will get addicted with just one dose of vicodin." That is her actual quote. She should be stripped of her license. As I left her office, I saw her drug rep come in. Upon being told, by me, that "Your dealer is here", she turned a color of red one usually only sees in a crayon box. :D

Smoke,
We've got to watch for those "Docs" or practitioners, who want to stay in the bidness....

I mean, if they help us, we still must return for scripts, right?
But, they're really starting to make a "bidness" out of this RSD, Fibro, etc. with blocks and all sorts of nonsense, that is never ending..

I"ve said this from the first day I was on board.
RSD is "Managed, Not Cured".

A Good doctor knows how to do that, and should act as if you're paying out of pocket!
Not trying to "clean out" an ins. companies reserves!

Pete
Asb