I have no clue why my work and friends at work dont understand what I am going thru. I am to the point where I just want to cry. They dont understand that I physically can't be here all day right now. I just wish they would read what I give them in reference to my RSD. But I see them open the email and close it. They think it is too long to read or think that I am lying.

I know what you mean, Dana. Because we don't always have casts, slings, bandages, and other dramatic outward signs of severe pain, people tend to dismiss the reality.

I forwarded a very well-written article to a good friend once, and she actually wrote back "WOW! Is that what you are going through?" But, for the most part, it doesn't seem to happen that way.

Don't blame those people. I don't think thay are deliberately trying to minimize us. It's just that they see someone who "appears" to be able to function (all four limbs intact, for instance) and tend to forget that pain is not always visible. I think it part of human nature and also our fast-paced society. Attention spans can be very short. You explain it to someone, and next week, since they don't have that big bandage as a clue, they will have forgotten.

Hang in.

Mike

Dana,

I have tried for years to get my husband, kids, my mom and others, but they just don't get it. I've given them information, asked them to go to Drs. appt. but no one will go. The printed material has never been read. The worst part for me is the comments." Why do you take so many drugs?" "You can't put up with any pain can you". If they would just learn about RSD, i would be so happy. Thats why I love this site. Everyone is so nice and they do understand. Take care.

Sue

Dear Bronco4586,
I hear ya on the workplace problem. I have said this before "No one knows our pain until they have gone through it themselves." I have a doctor tell me that when he was a child around 8 years old his father ran his foot over with a car and he is fine. I told him he was blessed by not having to go through the pain I am in now. [I had a car driveover and sit on my foot over two years ago and I've had full-body RSD along with Fibro, Rheum. Arth., and Osteoporosis to go along with the fun.

The worst part of my workplace problem, which was only a problem for one person in my whole company which was my boss. He was terrible to me, made fun of me by limping in front of other coworkers saying he was me and the worst thing is he is my brother-in-law!!! So, this has affected all relationships within my family and caused me alot of pain. Some members of my family were believing him when he told everyone basically that I was faking it and they didn't know better until they saw the pain I was in and still didn't understand it and thought I should just will the pain away [yeah right]. Well, here we are over two years later and I am completely disabled and in severe pain and have been using crutches for two years now and have a wheelchair too. They all can't handle it but I am the one in pain. Yeah, I cried the first year and sent them all RSD books, emails, etc. and they really don't understand it all. So, I decided that I am only taking care of me, my son, and my kitty. I have outside help that has kept me going for over a year now and I order on the internet too. I think you need to forget about them and concentrate on you!!! Pray for them and forgive them for being ignorant. It helps me out alot when I get down and depressed. Take care and I hope this helps you out.
kathy d.

Hi Dana, Gosh, I am so sorry that your friends at work don't understand what your going through. I too feel like no one really cares. I hurt so much lastnight, that I was up and on all night long. My husband comes into our bedroom and says, "Get up.. our son's are here with our grand kids". I said, Bill, you know I was up all night. he says, take a pill and 'cmon outside for another cook out.(we had one yesterday also) ok.. I take a pain pill, comb my hair and go outside and put on a pretend happy face. As I sat there listening to them all chat away, I'm thinking.. WAIT!! This is crazy.. I don't want to be told what to do!! I said, excuse me, Bill.. "You know that I was up all night.. I drag my butt out of bed.. you know I am in pain all the time!! I then tell my sons and their spouses, look.. I am sorry that I really can't sit here today and chit chat but you all don't have any idea what I am going through! I hurt, I'm tired(from the neurotin, pain pills) and I have my good and bad days and today is a really bad day. I don't want pity, I want understanding. This beast I have RSD is not nice!! my sons hugged me, and said ;"Mom, I am sorry that your going through so much!! my oldest turned to his dad and said, dad, don't make mom do anything that she doesn't feel like doing, we're not in her shoes!) wow!! I was shocked he said that, yet pleased that they both know what I go through. Don't keep quiet, tell them, you have no idea what I go through with this pain and if you really want some information on this disease, I'll be happy to give ya some to read. don't hide what your feeling, Dana.. just be up front with what your feeling. You don't need anyone's approval.. if they are true friend's they would read some info on this, if not, "oh well, that's their problem, Im done being a people pleaser! sending you gentle loving hugs Dana Love, Desi

i, too, understand exactly how you feel. my shoulder problem started early last fall and didn't get bad until Christmas day. then i went to therapy BEFORE getting a referral to an orthopod who then ordered an MRI and found the problem. surgery in march, onset of RSD in april... my husband, friends and family have heard me complain about how bad my arm has hurt for months. and this was months before RSD when it REALLY became unbearable. i can understand the fact that nobody likes to hear whiners 24/7. i get it. BUT! when you hurt so bad day after day after day with RSD pain which is so horrendous, it's hard NOT to be consumed. i mean, it has consumed my life to the point where i am apologizing to people because i keep talking about the pain. and every day it's something new for me. i have thrush again for the second time in 2 weeks. my body is so broken out from the massive amounts of steroids being pumped into my body. i ache. i have a fever. i'm just exhausted...

i'm sorry that you are going thru such a tough time. you just have to know that you have a safe place to turn to to talk about all this stuff.

shalom,
angie

Hi Bronco,

I know exactly what your talking about and I'm sorry it's that way for you. I work from home doing transcription seven days a week and while I hardly ever leave home, I also hardly ever leave work. I guess my family could be considered my co-workers. It just doesn't stop.

They can't understand, because they have only experienced it as outsiders. While sometimes it seems (to me) like they don't give a rat's ***, it's really not fair for me to make that assumption. It's like when I go to the grocery store and see a down's syndrome gentleman bagging my groceries and I notice he has a cast on his leg, I think wow, double whammy! While I feel for him, there is no way I could truly ever comprehend what a day in his shoes feels like; it isn't because I don't care, but just simply because that's not what I'm dealing with firsthand. Also on the other side of the spectrum, I don't know how it feels to be say a 15-year-old spoiled man child (my son) who barely does chores, gets everything his heart desires, makes his own rules, etc. From my point of view, his life isn't too rough at all (safe for an upcoming knee surgery on Friday). But there again, I don't really know, because I am not experiencing his life firsthand. For him, life probably can and does really suck. I remember that I hated being a teenager when I was one and all of the silly crap that went along with it. As far as adult family members and friends... It must be really hard for them to find the courage to take a deeper look into our suffering. If they really, really knew what it was like, I don't think they could cope with it. I am crying right now just thinking about what it would be like for me if I saw one of my family members or friends going through what I am going through, knowing what I know. There, I just made a pact with my creator where I will take three times the suffering to spare them all! I think if they really knew what it was like, they would really end up having thoughts from time to time such as "It would be okay if I didn't wake tomorrow." or "I wonder if 35 Vicodin would do it." or "God oh merciful God, if I have to do one more errand this week that involves leaving the house, let my car implode with only me in it and let there be no survivor." I wouldn't wish that on anybody, it sucks enough that we all have to live it.

Keep hanging in there.

Lisa

If someone had told me about this condition ten years ago, I wouldn't have believed it. Even close friends don't seem to understand much of the time.

I'm so tired of being told that it's just age.

I also have a hard time with people believing me. They just dont want to listen or read long explainations.

Cant say I blame most folks, as I can remember a time when you would have gotten a motivational tude from me

One day was thinking about how we used to make investor videos for movie makers. The video had to tell about the story, who was starring, where it was going to be filmed, directed yadda yadda yadda. But, It had to all be said in no more than 12 minutes or the investors were checking their watches, and thinking about other things. That is when the realization set in that was why nobody wanted to learn about RSD because we couldnt put it in simple terms.

I put a link to a PSA that tells it short and sweet, just a disorder where the body is registering immense pain. If you have time and a printer this little picture works real well.

http://www.freepowerboards.com/crps/...t.php?cat_id=3

Most can identify real fast with the pains listed on the McGill Pain index.
If this doesnt get them, nothin will.

Heya,

not being understood with this is really hard. I guess that with me my RSD is very obvious (wheelchair, carers, etc) and I have never not been believed - but there have been many times when I have been misunderstood.

I gave up trying to explain what is wrong with me to people - it get's too frustrating. Unless they are your best mates then they won't be overly interested in the specifics. I tend to not even mention I'm in pain most of the time because it's just not worth it. I just say that I was in an accident that set off a disease in my central nervous system which means I can't move properly anymore.

However my best mates know and though they cannot understand the pain they have learnt through experience what makes it worse and what makes it better (I'm VERY stubborn and generally do things that I know will kill the RSD just because I hate letting "it" win!

I wish there was a suggestion I had for letting co-workers know and I don't think there is one. This disease is too complicated to explain - watch there faces - when they start to switch off shut up and change the subject!

Take care!! Love

Frogga xxxxxxxxxxxxx