Topic : Living with Chronic Pain

i just wanted you to know that you're my hero of the day!   i'm staying in the world of traditional medicine, with a pinch of complementary tossed in. 

i resisted the offer of a pain counselor for years, always trying to be one-step ahead of the doctors  

-- who obviously were out to label me as insane.  or worse:  as an insane woman.  once i knew that my physiatrist was going to check and see if i had made an appointment, i made the appointment and went.  it was a combination of unfurled fury, giggles, and meditation/biofeedback.  it was very helpful.  it was also out-of-pocket, so my visits are determined by that self-same pocket!  she walked me through some realizations that, in turn, helped me to have a home environment that was peaceful.  if anyone is afraid of being labeled, as i was, get over it.   

you are so correct about exercise.  can anyone explain to me why it is so much better when exercise is intentional?  why don't i get the same energy boost after mopping the kitchen that i get after 20 minutes on a dual-action bike? [ where have all the endorphins gone...] 

re: cymbalta -- i started it about a year ago on the advice of my internist.  he said it has been shown to work with chronic pain of the neuropathic variety -- it helped with diabetic neuropathy pain in the extremities.  it definitely lifted my mood after about a month, that alone led me to move more, try more... who knows what was trying to break the pain cycle.  i am grateful.  i also take amitriptyline at bedtime, since it also helps with pain.   

i am not dealing with fibromyalgia [actually one doctor says i have it and i just ignore him!] -- but with avascular necrosis and rsd/crps.  the decision has been made that no more surgeries for bone/joint replacement will be made -- why?  because anything orthopedic triggers my rsd/crps.  it took us a few years to figure it out.  the clincher was about 6 weeks ago -- i simply broke my little left toe.  big deal. the next day the rsd/crps had spread with vengeance to my left leg and has proceeded now almost up to the knee.  apparently, that started a flare and caused the upper extremity to mirror from left to right -- the 4th & 5th on the left gave way to the same on the right. so i have it in every extremity.  it's a real pisser. 

thanks for your great attitude and insight.  i think i was in need of a dose of that stuff. 

prof-de-rien 

my heart goes out to you.  your diagnosis was just a few months ago.  i've heard that it is difficult to diagnose -- what made them finally look in the right direction? 

when you get settled, what do you think about giving those former friends a ring -- invite them for coffee, or something.  beware, though:  yesterday, i made a huge mess of coffess and as i was pouring it, my fingers went on vacation.  i hate it when that happens! 

can you get involved in physical or occupational therapy? 

anyway -- you should be so very proud of yourself for having so much courage to be  here, facing your illness,  i want very much to hear how you are doing. so please post often 

be well, 

prof-de-rien 

Just wanted to wish a better year to all! 

Hello Everyone,, its been awhile since I've posted,, I would like to know something about this condition, I have alot of joint and muscle pain , I have OA and have had 3 knee replacement surgeries and bone fusion surgery. Sometimes the muscle pain in my hips and legs is unbearable and now there is numbness in my left leg and a really bad ache as well, any information you could give me would be appreciated,, Thanks  Martha 

Thank you xplay25 for your input.  The information you provided, it is already being done.  I also have menieres which will soon become total deafness. With this problem I can not have salt, artificial sweetner and alot of other things. 

pandas 

Hi Prof, there is no cure for it except for a really drastic one.  There is no thearapy that can help this pain.  I actually did reach out to 2 of my friends, but they have no idea how to react to me in a wheelchair.  That hurt.  Basically my family is all I have, and my family has their own life.  The reason they looked in the right direction is because I have been begging for a MRI I knew there was something wrong.  I also have fibromialga and that is from a fall I had when I was 14 (fell 9.5 feet in gymnastics)  I knew from an early age that I will get fibromialga.   Over the years I was always on crutches for about a week or two.  For me that was normal.  So when this happened I knew it was different.  I also knew that it was going to be perm.  That was the feeling that I had and no one believed me of how I felt,except for my family doctor.  She has been the best to me.  I would call her because I needed a shoulder to cry on.  It didn't matter what I needed she was there and she still is.  When I told her that something is really wrong, she believed.  My doctor did all the phoning for specialists, wanting updates etc. That is mainly the only reason that I am telling my story so that other people in the same or different problem can come together.  Sometimes all we need is to know someoone is listening 

pandas 

dear pantas,   

i'm not sure what the drastic cure is -- is it that deep brain procedure?  there is a large university where i live that has been a pioneer in that area with good results.  don't give up hope.  i am thinking about being a lab rat for a new drug therapy in rsd/crps [thalidomide, believe it or not]. 

the thing is, though, with these procedures and studies, they kinda suspend the "do no harm" directive! 

that they wouldn't do an mri angers me.  there are so many things that don't show well on plain film, or on bone scans, or on ct scans.  grrrr.  i have avascular necrosis in every major joint plus the spine, and some smaller joints.  it's best treated early but is only seen early with an mri!  to get one, you have to get rather pissy.  which i can get... 

don't give up on your friends!  did they actually say they were uncomfortable -- i know that is a lunatic question but what the heck!  i forced my friends -- admittedly just the very best ones -- to deal with me by calling them and asking for help.  this was a 2-edged sword.  i actually needed the  

help and was loathe to ask for help.  all those cabinets that i couldn't reach, all those nasty collisions with my refrigerator, the adventures of hygiene, never mind housework!  everyone said something like "if you ever need any help dot dot dot."  so i called!   

[there is a wonderful question that i am starting to use in my dialogues with myself:  what is the worst that could happen?  that weeds out a bunch of... stuff.]  

i bet your friends really are just waiting for a sign of what to do.  you are still the same person -- you are probably stronger than ever for all that you've been through.  one of the easiest ways for me to get back to friendship was/is to ask for rides to doctor's appointments.  i had a chair that broke down enough that it could fit in the trunk of a car.  they had to learn how to do that -- and they can't be thinking about how to act when they are packing heavy old batteries!  then i would take them out to coffee or lunch.  i am shutting myself off again these days because of my fear of being unintentionally harmed [a long story!]. 

your family doctor, what a great doctor!  she has probably been waiting for the diagnosis to happen, just not knowing what it would be.  having someone like that to keep the circus of specialists in line, and to LISTEN to you -- she must be great.  keep her informed about what's up with you because she obviously cares. 

the problem with your family -- you are a significant part of their life, no?  why aren't they extending themselves?  a big "pooh" on them! 

sorry for going on so long -- we've got some sort of little virus going on here and i always get hyper.  can't read, can't relax.   

please take good care of yourself!  from all that i have read about fibromyalgia and ms, getting rest and dodging stress, loving yourself first -- what is the worst that could happen?! 

prof-de-rien