Praying that with the perm implant, this too, shall pass and all will be well with you. Your family and friends will see a new you, a revived you, a return of the one whom they knew before pain if all goes as it has for me.

Mark56

I know EXACTLY what you are describing! I think alot of this frustration we face is because of the fact that somehow 'THIS' has become our 'Identity'....
and I for one do NOT recall signing up for this @#$%^&!! :eek
I had much higher ambitions in life......
I tend to default to going off to be by myself.....I guess so my significant others won't have to see me with that 'look' on my face. That 'look' that spells out 'PAIN'! I have become so much more NON-sociable than I used to be......it actually gets to a point that it 'erks' me if a friend pops by my house unannounced saying 'HEY! Let's go do lunch or something!'......
One would think this would be a wonderful thing....but NO, not to ME. They just don't understand that I simply can NOT jump up at a moments notice and bounce happily out the door. And more times than not, I am NOT up for chatting on the phone either.

The flip side of this is......I really believe that we must hang on to SOME form of Hope....we must believe within our hearts that things WILL improve eventually..... Or at the very least, we can learn how to make the most out of the 'good' days when they roll around.

I like to start my days with 2 cups of coffee while I watch my favorite commedian's monologue in which I have recorded on my DVR from the night before. That gives me a good enough dose of 'humor' to get the day going.

Thank you for that input Tinkster.....it is so 'spot on' with how I feel many times.

Rae

Isnt it amazing how we can all relate to one another when it comes to our moods and how we cope with our family and friends.

I too hate being labelled 'my sister, you know the one with the back problem,' or 'my friend, you know the lady with the back problem' its really annoys me!!!! Because before this 'back problem' I was known as JACKIE...AND IM STILL JACKIE>.........

My family do tend to treat me a bit with kid gloves......they know that Im in pain and they know my limitations. But Ive now gotten to the point that IM sick of talking about my pain with them. They just dont understand. Its not the same as coming on here and sharing how we feel and what mood we are in etc.

So Tinkster you have certainly come to the right place and you have certainly hit the nail on the head. Its like reading my own story as well as Rae!!!! we all have so much in common when it comes to this dreaded chronic pain syndrome!!!!!!

We all speak in unison on how we feel!

Sometimes I get 'peeved' thinking about how, considering my closest friends have been in my life for about 30 years and my family even longer than THAT....if they TRULY wanted to 'understand' what we are dealing with, WHY don't they get on Google and read up on what this is that we battle.....
In my case, I've repeatedly said, "I HAVE PERIPHERAL NEUROPATHY IN BOTH LEGS"........ok, I'm pretty sure that if the tables were turned and a friend of mine was down and out and provided ME with a point blank diagnosis such as this, I would take it upon myself to READ UP on this and TRY to understand EXACTLY what my 'loved one' is dealing with!

Nobody does this!! Instead, I get 'blank stares' when I expound upon this subject. This is part of the reason I choose to 'bow out' of the social scene if it means having to talk about "ME and my PROBLEM" constantly!

Right??

My god Rae you have took the words right out of my mouth!! today on the phone i got a call from my sis in law wanting info about something for 'her' when she had the info she said how are you? i replied busy getting everything sorted before surgery this week.. did she ask me why i was having surgery? 'hell no!'! . i think the same as rae why cant people google what you say you have if they have any heart or even cared about you to start with!! my father was quite worried about me having this scs surgery which i only found out a few days before my trial but yes he used his brain and googled RSD and scs and spoke to a few people about it and after spending the day after the trial with me he has become one of my strongest supports and cant wait for me to get my scs!!
I can understand why Rae you opt out of social occasions i have been doing this a lot lately and will continue as could not be bothered to explainor feel i have to explain away my pain. when i had the cast on my leg this summer people could see the cast and understand there is something wrong but when its pain no one understands they just think you should be over it at this stage and have no time for u.
The above is why this forum is becoming more important each day to me as everyone here understands where each person is coming from! big hugs to you all

The question I get time and again. Sure, the back was among the original car wreck injuries, my head, my arms, 28 surgeries later, I am doing better, but it is the PN in both legs which is the bummer, nerve pain, numbness, and "how's your back" Aw heck, I just tell them "doing better"........ legs still messed up...... stim works...... what a blessing......

Yeah,
Mark56

Thank you for that, Rae. Sometimes you just really need to hear that you are not alone out there. Not that you would wish this on anyone my gosh no! I dont recall being on any forums since my back surgery in 2007 and I have realized how much I miss the support and understanding that comes from others that are on a journey much like your own.

I remember that this year has been particually difficult for me. I do have a terrific pm doctor. However, he was trying epidural steriod injections for both my back and my leg and I just was not getting any relief. My mother has been fighting kidney cancer for four years now, she had two strokes and had to temporarily be placed in nursing home. But prior to the nursing home she was very very ill and we were in fear that God would call her home. Now I may joke about her and her phone calls but she is truly my dear and best friend. Praise God she rallied again and came through, she is home now and doing pretty good. Then around May of this year we had to put my basset hound to sleep, he was ten years old and I had him since he was an eight week old puppy. Things just seemed to continue to crop out, the car broke down, I was in some of the worst pain I had ever been in, I got a diagnosis of FIbromaligia in the summer. One day I had just had it I was soo very upset and I cried out saying there was NO GOD, none, it was a lie, and big fat farce and if by some miracle there really was a God he hated me and was screwing with my life for sport. I promptly went to bed and had a good cry.
Suffice to say after that outburst I was better, things looked brighter the next day as they often do, you remember your blessings, the good things in your life and go from there. i had a long talk with God too.

For whatever reason this is the life I have, pain and all. Maybe its to make me the person I am, doesnt mean I won't go for the SCS and try to make it much better but maybe those of us that live in chronic daily pain are the ones that are very special people indeed.

Thanks again for such a warm welcome from some really nice people.

Tinkster, I know just how you feel, and everyone else on here a well! I have RSD/CRPS. Had a SCS implanted in Feb, it failed, revision surgery in June, it seems to be failing as well. My mother in law (on our drive home from the doc) turned to me and said, "I just thought you would get this stiumlator and that would be it, RSD would be out of our lives. I guess its not that easy huh?" REALLY?!?!?!?!?!?!
As everyone has said it would be so nice if people would take the time to understand our illness before trying to discuss them. Just hurts sometimes.

There is actually a medical study that found that for chronic pain patients, the worst people to be around was family & close friends, the more time-the worse arguements.
For example, I got pain at 16 and had to scream at fam, who denied andminimized my pain..

During my withdrawal from Oxycodone .. and believe me, it was HELL .. I threw my eldest daughter out. It was the hardest decision I've ever had to make, and made me really ill with panic attacks and anxiety. All I had needed was peace in the house and she had once again taken something from our younger daughter's room and I just snapped. At 23 she should have known better.

In saying this .. it's the best thing I did as she is living with her boyfriend and they are really happy together ...