Message Boards

Replies to 'Living with Chronic Pain'

 
User Mood
Depressed

Message Emote
blank
September 10, 2007, 7:54 pm PDT

Hi

Quote From: taaheatea

I suffer from Chronic Regional Pain Syndrome. Pauls Abdual has shed light on her personal battle with this misunderstoon disorder.

 It was called RSD before. I personally have challlenged myself to feel better. I would enjoy to hear how other's are handling this serious painful condition.I also would like information on medical care. I have been to Seattle, WA for help and they can't help me anymore.

 Unfortunately, what we have in common first and foremost is this horrible health issue.  Prof is actually the resident expert on rsd/crps here on the board.  I was diagnosed back in December, 2006, but no cause has ever been determined for me.  I am still going through tests - in fact, I have a 48 hour portable EEG beginning tomorrow morning.  I have various other symptoms as well that as of late, have become worse and are unexplainable.

I am sorry to hear that you too suffer.So far, I've had some relief by taking Lyrica.  I think it's great that you are trying mind over matter but I have found that it's not too successful for me.  this is an extremely depressing syndrome and I am finding that all kinds of other things are now having to be treated in addition to the initial diagnosis.

You will find much comfort from the wonderful people here on this board. When I was first able to think past the pain, I immediately went to the Internet looking for this type of place where people - even just one - might understand.  I found many. many new friends - ALL of whom suffer from some type of chronic pain and offer me new insight everyday - new treatments, new meds, new outlooks.

Lucky for us both, we have found the right place :)

you take care and we hope to hear from you again soon- all my best to you for pain free days ahead!

~Debbie
 
User Mood
Happy

Message Emote
blank
September 10, 2007, 9:00 pm PDT

Hi there

Quote From: taaheatea

I suffer from Chronic Regional Pain Syndrome. Pauls Abdual has shed light on her personal battle with this misunderstoon disorder.

 It was called RSD before. I personally have challlenged myself to feel better. I would enjoy to hear how other's are handling this serious painful condition.I also would like information on medical care. I have been to Seattle, WA for help and they can't help me anymore.

I wanted to say hi and also "welcome" to the board..

 

It's amazing how much "help" our celebrities have been with so many issue, just in the past few years. Micheal J Fox, Brook Shields and Paula also.. it's amazing.. Christopher Reeds come to mind and his wife..

 

Again, welcome...

 

Love Dianah

 
User Mood
Cranky

Message Emote
blank
September 10, 2007, 10:00 pm PDT

Living with Chronic Pain

Quote From: taaheatea

I suffer from Chronic Regional Pain Syndrome. Pauls Abdual has shed light on her personal battle with this misunderstoon disorder.

 It was called RSD before. I personally have challlenged myself to feel better. I would enjoy to hear how other's are handling this serious painful condition.I also would like information on medical care. I have been to Seattle, WA for help and they can't help me anymore.

welcome --

 

crps/rsd sucks and that's an informed opinion!  just trying to get off on a cheerful note...  paula abdul hasn't been the most enlightening source of information for the public, but anything helps, i suppose.

 

one of the best places online for information on all aspects of crps/rsd is rsds.org -- their information and advocacy are based on the best science available.

 

challenging yourself to feel better?  tell me more!  if you mean "mind over matter"-- well, it's always helpful to have biofeedback and relaxation techniques to fight pain (or just life in general).  i try. 

 

but if you mean looking on the bright side and being generally upbeat, well, please give me lessons!

 

i also am a big fan of exercise -- and if medications and treatments have failed to control the intensity of the pain or the spread of your crps/rsd -- then exercise can be THE BEST and ONLY OPTION! 

 

even the meds and the initial spinal blocks are meant to relieve pain just enough to allow you to have very intensive physical therapy -- because it is the PT that *may* "reset" the misfiring nervous circuits. 

 

i have it now in every limb, which is pretty depressing. (crps/rsd sucks!) today has had both ups and downs -- medicines helped some (amitriptyline, cymbalta, trazodone, baclofen, fentanyl, percocet, ibuprofen, prednisone, and a partridge in a pear tree) and working out at the gym for 75 minutes *may* have been of benefit.  only tomorrow will tell.  actually... i can already tell you that the gym was overdone by about 35 minutes.  there is a very fine line between how much you should push yourself to do, even in pain, and how much will just sideline you for a while.  it is one of those things that i cannot seem to get.  what kind of (intentional) exercise do you "do"?  swimming is wonderful, i hear...

 

the past month or so has brought new difficulties that i find, and my household finds, difficult to accept.  who would think that going from using a wheelchair but being able to get up for short periods and walk -- going from that to having standing being nearly impossible -- who would think that it could completely confound a person on so many levels?  rising pain levels have accompanied this decline in mobility.  as i say, have said, or will say, crps sucks!

 

i share that not looking for sympathy (though a sympathetic thought is cool!) but as an example of my experience of this sucky disorder.  it plays on the mind as much as anything. that's why, as is the case with all of us with chronic pain, having a support system is so vital.  i've had times recently where i cannot even remember why i was trying to get better, it seemed so pointless and hopeless.  in addition to being a sucky disorder, we have to remember that crps/rsd is ultimately a disease of the central nervous system, and that's where we deal with *everything*, eh?  it's a real trickster... 

 

welcome to the board -- everyone here has pain -- some are grown-up enough not to whine too often -- others (guess who!) will whine every day, if allowed.  the best share news of daily life that remind us all what the struggle is about.

 

it's all good -- we cannot "compare" pain.  we can just meet each other where we are, you know?

 

i'd love to hear more about you -- and get some pointers on how you're dealing with crps/rsd --

 

be well,

prof

 


Return to the Message Board


First Page | Previous Page | 1 | Next Page | Last Page