what do you do when your pain is the worst, and your meds arent do anything to help at all? i hurt so bad i could not sleep at all last night..i have had those nights before, but usually it gets better when i wake up in the morning...it did, but came back just a few hours later, feeling the worst it ever has while on medication...i dont know what to do?

Dear Amy -

I am so sorry for what you are going through. And while it may come across as a truism, we have all been there.

The first thing that you should know is "this too shall pass." The pain from RSD/CRPS is at its worst, for most people, during the first couple of years: not that it's of great comfort in the here and now, but it may help keep things in perspective. Then too, you should let your pain management doctor know that not only didn't the block work, but your pain is excruciating. S/he may be able to put you on something stronger right away, I know that mine did and I had the good fortune of never having to go "up" from there.

There are also meditative exercises specifically for intense pain that can really help, which can be performed from whatever position you are in. The most basic one begins by carefully "scanning" your body in your mind, going from the top of your head to the tips of you fingers and toes, but excluding (for now) any areas that area in pain. (This is important for a number of reasons, not the least of which is that neuroscientists have shown that RSD/CRPS alters the image of your own body location, as represented/projected in your cerebral cortex.)

Then, although you may not be aware of it, there are always places of refuge and relaxation you can find in your own body. The first and most obvious is in the breath. If you pause for a moment between breaths, be aware of a sense of pleasure on the inhalation as oxygen comes into the body, and more importantly, be aware of the complete relaxation - from your lungs to the tip your nose - as all of the muscles relax as you exhale.

Next, bring your attention to the space behind your closed eyes. It may be primarily dark or light, or a mottled mixture of the two. Pick whatever you find to be the most comfortable, and just hang out with it.

And and then, in dealing with the pain, begin by trying to keep your attention on the restful place behind your eyes (call it blank) and simultaneously be aware of the rest in your breath. And after focusing on the breath and the blank - as best you can - for a couple of minutes, try "picturing" the rest in the breath directly on top of the area in your body that's experiencing pain, and holding the two together. You may be pleasantly surprised at what happens.

Mike

I have been there A LOT recently...so I totally know what you are going through (as I am sure most people here do). Mike's advice is great and I have found that doing those things helps me a lot. Other things that I do that are somewhat outside the box is to retreat into the things that I know bring me joy (even if doing then can be somewhat painful). For me, those things include cross stitching (which has always been my retreat from stress and one of the only things where my mind really shuts everything else away), planning vacations to Disney World (crazy...I know...but I use Disney as my motivation to get better and it really is the happiest place on earth for me), listening to my favorite books while I lay on the couch in the dark, planning all the ways I would love to remodel the house (if I had the money), etc. Sometimes these things distract me enough from the pain to get through the bad times, sometimes they just help remind me of all the good things in life, and sometimes they just help to pass the time by doing something other than just sitting there in pain.

Nothing makes the pain go away...but these things definitely help me get through the worst parts of the day. I hope your doctor is able to help you find something to help manage this pain as well. Definitely work with them to try to resolve this...but even in the best circumstances I think we all have bad days. Good luck!

I too understand what your going through as I am sure most everyone on the site go through it also.
Mikes advice is great as I too do much of what he says he does

When my RSD gets to the point I cant handle it and none of my meds work and the breathing and relaxation doest work .I end up going to the ER. Iam lucky enough to have a wonderful hospital where my pain doctor is head of pain managment there so every ER doc and nurse know him and by now know me. He has set a protocal for me and every RSD patient he treats on the meds to use. and for me at a certain point if that too doesnt work they admit me, usually to the ICU as they put me on ketamine, and lidocain 24/7 as well as my normal pain meds but they give IV until I feel I can get off the ketamine and lidocain then I am moved to a normal room and given my IV meds until I could go home. The only reason I have to go to the ER with these flare is if not with my RSD internal if I dont get help quick enough my bladder, and stomach shut down and my blood pressure and pulse could become too dangerously high.
I know not all ER's or hospitals are like the one I use as I have probably been to over 33 in 7 states and more then half are pretty bad with treating RSD patients. So I do know ERs and hospitals arents always the easiest way to go.
I do wish you the, best and hoe your pain calms down soon, my thoughts and best wishes are with you!

Niki1

So sorry Amy. Only the first few stellate ganglion blocks worked for me, too. (After the 8th we stopped.) Relaxing is so important, so are the right meds. Have you tried Neurontin, Lyrica or Topamax yet? Cymbalta? A muscle relaxer like Skelaxin? I take Ambien CR to help me sleep at night. Beta blockers are also pretty effective for pain, as well as high blood pressure that often comes with it. There are also patches and gels that help a lot, too, such as Lidoderm, Flector, and Voltaren. Check with your doc on which of these he thinks may help you.

After the blocks I tried Lidocaine infusions. I had 8 of those, spaced about 3 weeks apart. They helped take away some of the awful burn.

A warm bath with Epsom salts is also a great way to chill when all else fails.

please take care and keep in touch...XOXO Sandy

thank you everyone. I meditated, and that helped a bit...my mom told me to take a naproxin and if it didnt work to take my ultram i have that was prescribed before they changed my meds...and i couldnt believe naproxin helped!

SandyRI, i take Neurontin 1800 mg, Noritriptyline 25mg at night...plus i have a ketamine cream compound i got at Mayo Clinic...so since i take all this, i was hesitant to take anything else , but i dont think i have enough relief to sleep tonight :/

Dear Amy -

As you know, Nortriptyline is a "tricyclic antidepressant" which has some effect on neuropathic pain, but is not a pain killer itself. I can't believe your doctor doesn't have you on an analgesic as mild as Ultram (tramadol) http://www.nlm.nih.gov/medlineplus/d...s/a695011.html but it apparently reflects an iirrational bias in the U.S. medical community (particularly the Midwest, I say as a native of Rochester MN) against giving effective pain killers to young adults on the theory that they will all go off and become drug addicts: Tell that one to Nurse Jackie and Dr. House! (Seriously, I would bet the next mortgage check that there's no valid empirical evidence in support of that prejudice.)

So what to do? Off hand, I can think of a couple of things to ask your doctor about. One of which is Dextromethorphan. For starters, please check out my post of April 1st (#2) and the various threads and other sources mentioned in it on the thread rsd pain at http://neurotalk.psychcentral.com/sh...d.php?p=758115

The second thing to consider is something called Low Dose Naltrexone (LDN). Please check out the following two web pages of Nancy L Sajben MD, a board certified neurologist of La Jolla CA and pain specialist, that were brought to my attention by Ballerina:

LDN World Database – Low Dose Naltrexone
01/19/2011 — Nancy Sajben MD http://painsandiego.com/tag/low-dose-naltrexone/

AND

Pain and the Immune System – It’s Not Just About Neurons – Naltrexone
01/25/2011 — Nancy Sajben MD http://painsandiego.com/category/com...pain-syndrome/

And here are a couple of more items on the subject, courtesy of the RSDSA:

The Other Brain
The Leonard Lopate Show
Friday, January 22, 2010
Neuroscientist Douglas Field, explains how glia, which make up approximately 85 percent of the cells in the brain, work. In The Other Brain: From Dementia to Schizophrenia, How New Discoveries about the Brain Are Revolutionizing Medicine and Science, he explains recent discoveries in glia research and looks at what breakthroughs in brain science and medicine are likely to come. http://www.wnyc.org/shows/lopate/epi...egments/148700

AND

Younger J, Mackey S
Fibromyalgia Symptoms Are Reduced by Low-Dose Naltrexone
Pain Medicine. 2009;10:663-672
http://www.rsdsa.org/pdfsall/Younger...Naltrexone.pdf

Of the two therapies, it is my guess, based largely on Dr. Sajben's comments, that LDN requires more art and skill in its administration, than does Dextromethorphan.

Accordingly, if your physician refuses to put you on any opioids - and in the view of Dr. Sajben and others their use may actually be counterproductive* - and isn't currently using LDN with other patients, you might want to start with Dextromethorphan.

I hope this is useful.

Mike


*Although my physician now has me on Neudexta (dextromethorphan along with quinidine sulfate, to block the metabolism of the dextromethorphan) and thereby "potentiate" (give greater medical effect per mg.) of both my opioids and Namenda (mementine) and hopefully reduce some of the potentially negative side-effects of the opioids.

I don't take as needed pain meds anymore. I have been in horrible pain again with major sleep issues. Anyhow for me it is about getting through the moments. I self talk to myself and try to keep calm. I lay down but I try to move a little as for me staying in one position for too long flares me up. That is why sleep is also hard. At times I have taken a bath or shower as well. Depending on level of pain sometimes I will call my mom just to hear her voice. If I am in too much pain I try to find something to comfort myself at home.

So sorry that sleep is such an issue for you. Early on in my CRPS journey I found it impossible to sleep no matter what medication I was given. Lack of sleep can really crank up pain and the emotional consequences of intractable pain.

Looking for relief I stumbled upon a medication called Trazadone which has been a fairly reliable workhorse medication for sleep issues with CRPS for years but is not used as much now in favor of newer and many times less effective drugs.

Trazadone is typically well tolerated and has few side effects. It had an immediate positive effect on night sweats, racing heart, pain and many other symptoms that were preventing me from getting restful sleep. Research suggested that the highest dose was 150 mg at bedtime. I am up to 100mg and have been there for about a year. It has been a wonder drug for me.

Hope this helps!!!!!!!!

fmichael : thank you, i am reading the links you gave me...although, my doctors didnt take me off Ultram because they thought i would get addicted to it...I asked to be taken off them, because it made me have very bad anxiety, so much it scared me, and it made me very dizzy...all in all, nothing like myself, so I asked to get off of it.

daniella: thanks for the advise. I have been having sleep issues, with taking my usual meds...yesterday, when i had this flare up, laying in bed helped me as well, except the only difference, it hurt me to move at all, so i had to find a comfortable as possible position until it got a little better with the naproxin.