I found where these converstions are now. Thank you for replying to me, I am so happy that I found you all. I posted this a.m. I joined just two days before, as I was waiting for my CT scan, and I was worried to the max. as posted it didn't turn out well at all. I haven't called the neuro, I'm a rabbit in the headlights and am crying, can't stop, I new it was bad but this really is.I don't want to call the physician until I know more in advance of what he might want to do. My pain specialist and Pmd ordered new CT and it is bad. I am 6yrs post cervical C-6-7 fussion and plate. I have DDD and DJD and things have gotten bad in the last 6yrs of pain and meds, and doctors, sometimes I dont want to do anyting, I'm not doing good emotionally at all very very frightened how does chat work? can anyone chat with me? or do i answer posts? need someone right now I am not good at navagation on the pc

Virginia, I feel sadness for you and I want to help. I don't have anything near as horrible as what you are going through, but you can talk to me and I will listen. You can post here, or you can have my email. There is a messenger that you can download easily and responses are instant. Or if you would rather relate more closely to someone I am sure Leesa will be perfect for that, since you both have back pain. Let me know, I will help if I can.

Debbie - Thanks so much for your reply. Your advice is the first that I have received of that kind, so it's extra special. Part of my grudge against the wheelchair is that with or without it am still relying on someone, and I clearly can't go without. My left arm is also pretty messed up, so I can't even take myself places. It does seem odd that we have pain in many of the same areas, and we both have killer migraines. I actually feel one coming on now...so in about five minutes it will be a dark room with my usual tried and true method of migraine pain relief. I hope that we will have a chance to talk soon.

Emily,

I have suffered from RSD for 6 years now and it took Drs 4 1/2 years to diagnose. Mine started with a torn Achillies tendon surgery that went awry from a BAD Dr.! I had 4 surgeries to repair the achillies with 11 tears and horrible pain to follow.

I had "friends" tell me I was just looking for drugs, seeking attention and Dr's tell me, "don't worry, you won't loose your leg today" (when I fought like hell to keep my leg attached from MRSA infection.

My pain was so bad, for so long, that I was actually starting to contimplate amputation! NO JOKE!!! I didn't sleep more than 2 hours at a time and was trying to raise my 2 children.

I was on crutches so long, that I now have permanent nerve damage in both arms, carpal tunnel and thoracic outlet syndrome in my right arm. I can never use crutches or a cane again and am on permant dissability. I was at the end of my ropes and yet doing everything I could to keep a smile on my face and pretend all was well.

Then I went to a wonderful Neurologist who looked at me and said, "you are not insane, you are in pain". I cried and hugged him. Music to my ears. I began sympathetic nerve shots and went into remission only to have a BOZO t-bone my car in May and send me back into RSD and give me severe whiplash.

I understand your frusteration and pain, and am soooooo sorry for what you are going thru, but you are not alone!!! There are people who understand!

I would suggest getting a good nuerologist, pain management doc and yes, even a good therapist. NOT because you are crazy, but because chronic pain affects us in ways that is so hard. It is very important that we don't overlook our mental state of mind during these difficult times.

God Bless!!!
Renee'

I hope I am not interupting, though I also am a new member this early am. I can relate with everything that was said. I agree being alone is sometimes much better than being with people that seem to know how to fix me and my problems. Well if the doctors can't, I know my supposedly friends can't either, so I often distance myself, I often wonder if that is a good thing or bad, cause depression seems to take over and I feel like some of the other posts I have read tonight concerning the extreme pain of RSD. I know what its like cause I have had it over15 years now, anyway I just wanted to comment on what you have said here and I believe if one doesn't understand, than that isn't someone you want around you. Peace Love and a whole lot of FAITH

Hi Emily,

Your experiences/feelings/questions are common among people with chronic conditions. I can't and won't suggest what you should do; I will pass along some things that I have learned on my own journey.

Alienation is one of the most common stigmas experienced by people with chronic health conditions. We patients/sufferers want friends & family members to understand our feelings and the ways chronic pain affects us. They cannot. Not any more than a person blind from birth can understand a sunset, or a person born deaf can understand a symphony. They can get parts - a sense - but not a true appreciation/understanding. At the same time, due to the self-absorbing effects/nature of chronic illness, we painees are often ignorant of the thoughts and feelings of those around us, and the effects our chronic pain has on them.

When I noticed that my friends & family were bailing on me like rats from a burning ship, I asked myself many of the same questions you're asking now. I thought about what all those people had in common that would make them all abandon me like that. The common factor was me. Or rather, how I behaved around them. All I ever talked about anymore was the pain, how it hampered and destroyed my life, how miserable I was, yadda, yadda, yadda...

Talking about our pain and how it affects our day-to-day lives is fine when talking with a doctor or health care professional - or in a support group. That's what we're supposed to tell them - accurately and in detail. But our friends & families aren't doctors or support groups. (If they were, we wouldn't need places like this.) To them we can sound like a broken record. What's more we scare them, and out of fear (and frustration - I believe that they truly do have the best of intentions) they have no idea what to say or do. And as people in fear tend to do, they act/speak reflexively - without thinking. They say stupid and insensitive things like your friend said to you (and like things that have been said to all of us) because deep down inside they're hoping that we are causing our own pain, or that we're exaggerating, or faking, or any of the dozen or so other stupid insensitive things people say, because if they're correct, then that means something can be done about it; that there is hope or a cure. But if they're wrong, and everything we've told them is true, it terrifies them, because one day it could/might happen to them - with no hope or cure - and that is just too terrible for them to contemplate.

I firmly believe in the Japanese adage, "Fix the problem - not the blame". IOW, I don't blame the people around me, and I don't blame myself. I can't fix my pain, but I can do something about my comportment. I had/have to learn to adapt and compensate in many different ways, and the way I conduct myself and communicate with people who can't possibly understand is just another way. In perspective, it's not that big a deal; it's a relatively minor change.

I am not saying that we're supposed to suffer in silence; I'm only saying that tolerance and understanding go both ways.

Now when I'm in a social setting, I'll talk about anything & everything I used to talk about before chronic pain - except my pain and how it affects me. I learned the hard way that when people ask, "How are you?" or "How ya doin'?" it's just a form of greeting - they don't really want to know (I was naïve enough to think that they did, and I told them. Big mistake.) If they specifically ask about my health because they are generally concerned, I keep it brief and on-topic, and let it go at that. Sure, I put on a bit of a front at times, but I've smiled in the face of adversity before. And y'know what? They've stopped bailing, and despite my limitations (which I don't have to go into great detail about with them) I'm socializing more than I did, and everyone is enjoying it more.

Rarely, we do meet individuals - normies - with whom we can share our pain - in depth, at length, or whatever we may need, but these people are very special, few and far between. I am fortunate to have two such friends, and I hope that each of us will have, and that they will inspire others. But in the meantime I do not blame the rest of my friends and family for being human.

I don't know if any of this will apply to your situation or make sense to you. It may not. I hope there's something there that may help.

Doc Smith (IANAMD)
"Oh, the pain... THE PAIN...."

Well Said Dr Smith !

I'm just having a real issue with your screen name because I HATED Dr Smith sooooooo much ! All the trouble he got them into !

Danger, danger Will Robinson !