between pain suffering and all the treament sessions and drs appts, and nobody to really understand you here it sure gets lonely, I post in other sites and have done so often but still not the same as a warmblooded person in the room whom understands. i am surrounded by love and always have someone around(four kids you know) but still not the same.. in fact it makes me feel more alone.. how to beat that????still trying

Dear Painman 2009,

Your words say it all.... Our lives have so many new dimensions and none are very nice when it comes to RSD.... This is such a dark illness... Many don't understand our pain nor or present and future... We have a loaded deck to live with on a daily basis... My thoughts are to try and counter act your sadness and loneliness with somehow happy.. Happy events, happy hobbies, happy people
or happy distractions... Even for just for a short time as to break up our relentless sadness and despair. I have began painting.. I enjoy that as it fills my void and finally I have a final product, a gift I can proudly give to someone else...and that brings my heart joy. No doubt our lives have taken a turn of which we did not chose but try to mix in some up beat happy stuff in your life to counteract the sad things...if even spending time with those you can laugh and have an enjoyable visit with.....


You have us....

Hugz, Kathy

Hello

i am so glad you are here to post how you feel. we understand you and welcome you on good days and bad. i posted the article below a few months ago. you may not have seen it. Maybe it would help if you printed it out and gave it to our loved ones so they might understand how you feel a little bit more. i didnt write it..i dont know who did. Just sharing it from me to everyone here that can use it.

hugs and blessings
Lori

Living with RSD or Other Chronic Pain Conditions

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I probably don't seem like much fun to be with, but I'm still me - stuck inside of this body. I still worry about school, my family, my friends, and most of the time I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time. In fact, I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say "Oh, you're sounding better!" or "But you look so healthy!" I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please respect the above paragraph substituting "sitting", "walking", "thinking", "concentrating", "being sociable", and so on ... it applies to everything. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible (for many, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the next room. Please don't attack me when I'm ill by saying, "but you did it before!" or "Oh, come on, I know you can do this!” If you want me to do something, then ask if I can.

In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are -- to be physically able to do all of the things that you can do.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. You don't know what I go through or how I suffer in my own private time. Telling me that I need to exercise or do some things to get my mind off of it may frustrate me to tears, and is not correct if I was capable of doing some things any or all of the time, don't you know that I would?

Another statement that hurts is "you just need to push yourself more, try harder ... “Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short or a long period of time can cause more physical pain than you could ever imagine.

Not to mention the recovery time, which can be intense. You can't always read it on my face or in my body language.

Please understand that if I say I have to sit down/lie down/stay in bed/or take these pills now, that probably means that I do have to do it right now - it can't be put off or forgotten just because I'm somewhere, or am right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If I seem touchy, it's probably because I am. It's not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating.

Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability. I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out ...

Sometimes I need you to help me with the shopping, cooking, or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening. It really does mean a lot.

-Author unknown.

hey thanx i copied it. i thim=nk i will print it an engrave it into a wooden clock and when finished i will hang it in my dining room.. it will help shut some people up...boy you look good tdy.. Its all about mood not pain..some days i can better cope(same pain )just a different frame of mind. why cant people get it...hoping you all have less pain days .god speed

My mood tends to be all over the place as well. I see a psychiatrist and am on meds. Have you thought of that or therapy? I have limited people in my life but even when I am around others I feel alone. There is an inner sense of sadness,confusion,fear. I try to find ways to comfort myself within. In terms of people understanding in life some will to a degree and some will never. So I try to focus on the ones that try. I reach out for support in ways I can and try to find ways to cope with myself. Hang in there

Hi Daniella,
I feel like you too...even though you can be in a room of people they all just don't understand what it takes for us to even get through the day let alone just get out of bed in the morning. I have tried to surround myself with positive supportive people and have limited what I say to those who are negative or who just can't handle it. I had to laugh...tonight someone said they had such a bad day and began to tell me they were mad at their husband last night and today it just spilled over into work blah blah blah. So I said oh wow what a shame to her but inside I started to laugh and thought to myself "Gosh, I would be thrilled with a day like she had!!" I almost seem to laugh at people (at least inside my mind I do) when they tell me about their "bad" day. If I told them what I went through (and I have) they would be really depressed haha. I guess we with rsd do have to have a good sense of humor and be really strong people so we can handle the rest of the world. THis site is the best place for real support and understanding that I found. Good luck and stay positive.
kathy d

Hi Painman

just thought i would check in on you and see how your feeling.
this stupid illness is like a rollercoaster ride for physical and mental health...but its never real good...its just not as bad...you know what i mean
heres hoping that this is a not so bad day for you!
Blessings
Lori

yeah i have limited my interaction with people to texting ..aside from wife and kids. it makes it easier to control my mood, i have been trying to see a shrink but as i have no medical now and comp hasnt okd it yet i must wait.
thanx ..hope you are well today

I hope you can get into therapy or psychiatrist soon.
I think for me I do isolate myself a lot due to the pain and limits. In the long run though I think it makes me feel worse and over time it has become even harder to be around people. It is a bad cycle. I am in a bad flare right now so am trying to just get through the day but if I do get to a better place again I need to think of doing more. Like a group or class?
Sending warm thoughts

People who don't have RSD can't understand and I've come to accept that. Fortunately my family accepts it at face value but I know they can't get it. I know I'd have never understood if someone had told me. I'd have been dismissive in fact.

I don't really get what's going on myself. How could anyone else?