Chronic Pain Thoughts
 

Hi, just want to say some things to whomever will listen. Over the past 5 years or so I have had quite a few experiences when it comes to losing the people around me, due to chronic pain. Even though it seems fairly common it makes me wonder why it has to happen. I can say for myself, that having chronic pain has made me clearly see the flaws in other people. For me it's always a friend or a family member seeing me in pain that automatically sets off a red flag to distance themselves or run away. Each time it happens, it hurts more than the last. My original injury was on my left ankle, when I fell down the basement stairs. That was when I was around 15, and I have been in pain ever since. About three months ago, I finally received a diagnosis and the recogniton of having RSD/CRPS. The pain has changed everything, and took a lot away from me. I never had a normal highschool experience, and I have missed a lot of opportunities. I wasn't even able to graduate since I could not to earn the credits for the physical activity portion. Since I have been left out of the loop all these years, I often feel like an outsider within my own age group. Making friends isn't difficult, it's keeping them around when they realize that the pain I experience gets in the way of what they want. If only I could make them see how blind they all are. The things that seem so important now will mean nothing to them in a few years. Although I would never wish any sort of chronic pain upon anyone, I always wonder how the 'critics' I have met would react to feeling this sort of pain, whether that ends up being friends, family or even doctors.

There have been way too many but the most hurtful people that won't accept what I am going through have to be my grandparents, and my best friend...which I have known my whole life. I had been forced into thinking that if I can't even trust those people, there really must be something wrong with me. In addition to bone related pain the burning, stabbing, consuming pain with extreme sensitivity has now spread all the way up my left leg, into my hip and across my lower back. I also have the same pain all through my left hand and arm, down my left shoulder blade and up the left side of my neck. Since getting up and standing at the counter to brush my teeth can be difficult in itself I use a wheelchair when I need to go out. The shame I feel from that is crippling. I am by character very stubborn and independant, add that with the sense that I always need be doing something useful, and my emotions are a riot. I have been through many medical procedures and medications, none which seem to stop the vicious spread. On top of the RSD, I have a few other medical conditions that seem to have worsened, including a full body ache that I can only relate to severe anemia and migraines every few days with headaches pretty much everyday. The only treatment that has proved the slightest bit helpful with the RSD pain is a nerve block with an epidural a few hours later. When my entire lower body was numbed and feeling frozen, the greatest thing about it was that I was able to sleep from 5PM that night until 8AM the next morning. I usually have a very hard time getting to sleep.

Just these past three weeks I have been reaching out to someone from my past, who has recently come back into my life. Since we went our separate ways on good terms I didn't see the harm in being open and honest with him. We were very close and he brought me a lot of happiness. We have been talking online since we are currently in different locations. At first it seemed like he hadn't changed at all, but I was stupid to think that he would be the same guy. Where he was warm and caring and good natured before, he is now a little cold, sometimes insensitive and he has a lot of shadows. I understand that people grow up and change but I wasn't prepared for it to be this drastic. He is convinced that he knows what will help me, and he has no problem being blunt about it. At first I thought I saw what he was trying to do...helping me by being tough, caring but feeling that kindness wouldn't help. Downright cruel sometimes, but with random moments of the old kindness. I am not sure about anything anymore and I could use some advice on what to do, because honestly I have no one else to turn to, despite his confusing attitude. Was it right for him to tell me I am causing my own pain? Am I wrong to continue talking to a guy who can't grasp the effects constant pain has on a person? To a guy who has no idea what chronic pain is or why I act differently sometimes? How do you make a person realize that I don't do this to myself and it's not easy to just get up and 'do' everything that I want to do. I have a fairly positive attitude most days but I am afraid that he has already seen the 'red flag' and will be just end up another disappearance. And I will have ruined the image he had of me before. Am I wrong to assume that he is ending up like the other people what were in my life? Or is it safe to say this influence isn't what my pain needs right now.

Hi Emily ~ I'm sorry to say that he's just another of the ignorant uneducated people that we deal with every day of our lives. It's his loss. Like you, I'm so tired of people telling me what "will help me" ~ as if I've NEVER tried this before, or the doctor as never heard of it before!! Good God, where do they think we live, under a rock??? :rolleyes: We read newspapers too, and I'm sure the doctors read medical journal also. It really gets tiresome, and somewhat insulting! I know people are trying to "help" but if they'd stop and think, they might think how stupid it really sounds.

And yes, I've lost many many friends. I've only got one friend from my original group of school friends left. This friend I've known since I was 4 yrs old, so she's a real true friend. The others are online friends who are also chronic pain sufferers, but we've never met. But we're very close, as they understand what I'm going thru, and vice/versa.

I've come to the conclusion that I'll never again have the face-to-face friends anymore, because i can't do what they want to do. And since i don't drink, I wouldn't fit in with them anyway. So what good am I??? LOL. I will NOT go into a bar ~ I'm a recovering alcoholic, so that's not a good place for me. What friend would want to sit in a coffee house all evening? LOL. So, I stay home and watch TV, do crosswords, and sometimes crochet. Fun, huh? But going out is too painful anyway as I have to lay down quite often and you can't do that out in the public. They kind of frown on that and think you're drunk. :D Then they'd do a blood test on me and find drugs in my system! LOL I'd get arrested for having pain meds in me. LOL. What a fiasco. Just my luck ~ getting pinched for taking my daily meds. :p

Ya gotta laugh. If we don't laugh a bit, we'll cry. But seriously, I know where you're coming from. I don't think this guy is what you need right now. He doesn't sound supportive at all. You need someone to pep you up, not pull you down. God bless dearheart. Hugs, Lee

Thank you, for making me smile. You have described things exactly as they are. I also liked hearing about you. I probably shouldn't have brought my friend up, but right now he seems to have the most influence on me. It's not always good but it's more than anyone else has done. I don't know where he thinks he is coming from, but it's not supportive. When it comes to dealing with pain a person needs to be surrounded by the right people, and I don't have much choice face-to-face or online. I know that the best thing would probably be to distance myself from him, until I am -hopefully- well enough to act more like he wants me to. I just get really lonely :(

Cronic
 

I don't know alot about replying to people. I am new to this site today. I am in pain like you are too. I have lost most of my friends due to pain issues as well. My two grown children have not been a comfort and ignor me for the most part. Unless someone is in pain themselves, they cannot imagin it, therefor cannot sympathise with you. I am sorry you hurt, and please tap back to me too if you care to. Pain is no fun at all, and it is very difficult to live with. ginnie

Hi Emily ~ I know how lonely it does get. But don't settle, Emily. You're better than that. He's making very insensitive comment, which makes me think that he has absolutely NO concept of chronic pain at all, and doesn't seem to want to learn. If he made the incredibily stupid comment that you are causing your OWN PAIN, then he sounds like a lost cause. :rolleyes: I cannot believe anyone would make such a crass and insensitive statement to someone they don't know very well anymore. That was cruel.

Yes, it does get lonely, but I think i'd raother be lonely than have to deal with a jerk. LOL. Maybe you can bring him around. Maybe he'll be willing to read up on chronic pain and all it entails ~ who knows? I hope so for your sake.

I'm sure I'm alot older than you, and I'm not willing to start "training" anyone. I'm a widow, and I'm perfectly willing to stay single at this point in my life. So I think I'll just sit back in my rocking chair, put on my shawl, get my crocheting out, and rock and rock to my old heart's content. Trouble is, I have a hard time getting out of that darned rocker. :mad: I'll have to install a rope on the wall so i can yank myself out. LOL. Have a great day. Hugs, Lee ;)

Virginia - You did just fine with the reply. To me replies in themselves show that a person took the time to relate, and that's what matters. Even though we seem to have different conditions pain is pain. Same as losing people that should care. It's good to know people who know what it's like, and to be understood. You can post more about yourself if you want to get it out.

Leena - Oddly enough calling him a crass, insensitive, cruel jerk makes me feel so much better. Of course I know he has been, but it's so much better hearing it from someone else. I am sure that I have done everything that I can to make him understand...it's up to him to come around or not. And besides, if I have to force it, then he's probably not meant to understand. It stings a little but that's life.

By the way, for me ages do not really change who I talk with, and I may be really young compared to both of you but hopefully my troubles aren't sounding too immature. Ill listen to anyone with the maturity of being through a lot more than anyone would expect.

Hi Virginia and WELCOME ~ I'm sorry you have the need for this site, but I'm glad you found us! You're right in that chronic pain is a lonely disease. Most of our friends leave us, because we can't do things with them anymore, and our family doesn't understand what it's like. Many times our family even criticizes the fact that we have to take pain medications ~ some families have even demanded that their family member STOP taking their pain meds. How insensitive!!! :eek: Just like you said, unless they've lived in our shoes for a day or two, they have no idea what it's like. Chronic pain robs us of not only our mobility, but many times our self-esteem, and adds to it a deep seated depression.

I'm glad you're here, as you'll find some very nice people who will understand. Please keep coming back and venting any time you need. Or just to "talk" too. God bless, and again, welcome. Hugs, Lee ;)

Hi Emily ~ I'm glad you're not upset with me, cause I got to thinking that maybe I was a little too outspoken about that guy, and perhaps hurt your feelings. I certainly did NOT want to do that!!! I just didn't want to see YOU get hurt, and this guy sure sounds like the kind of guy who would do that. I've been round the block a few times, and have met a few dorks who don't care what they say to who! :rolleyes: Somehow, they've gotten a very high opinion of themselves, and figure everyone else does too. :p Who knows, maybe he's been hurt alot in the past several years, and decides he has to do the hurting first, before anyone can get to him. :confused:

And for heavens' sake NO, your problems don't sound immature!!! if I wasn't so darned tired, I might be lamenting the same thing! Hugs, Lee

I actually prefer people being outspoken instead of sugarcoating their opinions. Unless of course that person acts like my friend does. The difference here is that I know you mean well, and besides you have this guy's personality pretty much figured out. Since I knew him from before I know that he isn't a completely bad person, he is just really misguided and ignorant in the way that he deals with me. No excuse for being a dork but still. I haven't spoken to him in a little over a week, and I feel just fine. If he stresses me out, and stress makes chronic pain feel worse then he basically ends up adding pain...and I have more than enough as it is.

I need to vent about a few things that happened today but I am too tired to type out much more. The dentist today mentioned that my RSD might have flared up in my face, since they could not find a source for the pain in my jaw and it's following the pattern of only the left side....lovely. :(

Hi Emily..I have been on this site...let's see now...5 MINUTES! I read your posts and the responses you got...I think we were separated at birth! I have the exact same pain...left hip across the back, down the leg. But I also have right foot pain...talk about crab walking...lol. I have a heel spur, tendonitis. bursitis and some other thing I can't remember...I kinda got tired of listening to the list. I also have Chiari Malformation and my migraines have been wicked lately. I could make a ton of money pedicting the weather, and I am more accurate than the meteorologists...lol.
I replied because something you said really struck me. I can't offer much more that the other posters, but when you mentioned the wheelchair and your stubborn independence......that really struck a cord...not a spinal cord...but a cord none the less....hehehe....at the risk of sounding like every other idiot that gives you advice, try looking at the chair as a device to help you maintain your independence. You can use it to get around and go places. Without it you would be totally reliant on someone to get you places. Heck, dress it up like a chariot and start ordering people around...lol
I truly hope you can find relief. I haven't and it's been YEARS. I look forward to talking to ya' Debbie:hug:

I found you all!
 

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! :eek: 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 !