hi aj822,
Thanks for writing to me. Sorry I didn,t get back to you right away. I have lost interest in so many things. I need to stop that and get back on this site.
This is the only place that we are understood. I spent the weekened at my grandaughters birthday party. It was so hardd and painful. Of course my kids thought that I should have been able to handle it. My husband told me to deal with it and was upset that I only made it half of the day. They just don't get it. Last night he told me that I just eat the pills because they are there. He thinks I get high off of them. I wish I did. Sometimes he is good about how I feel and then he hits me with words like that. I,ve had RSD for 10 yrs now. I got it from a hip replacement. They don't understand that it isn't just the pain. Its what I've lost. Little things like wearing flip flops, going barefoot, cooking the big meals for my family, playing with my grandkids. It seems like small stuff, but to me its huge. Please tell me your story. I hope that you are having a somewhat painfree day.

Sue K

Hi Sue, my wife has RSD, I do not, and you're correct, no one but those who have it really understand it. I will never understand the full impact of RSD and it took a few years to sink in what she really is going thru, even though she tried to hide it from me, it got so bad that she couldn't anymore. She hid the pain and condition for sometime because she thought I'd leave her. She's a shy one and just didn't want to inconvenience anyone. I've known her for 30 years and never will leave her and now take everything she says seriously. But I do lose it sometimes for many reasons because RSD effects the whole family and the stress takes over sometimes. Your husband is most likely blowing off steam. I'm sure he cares for you very much.

amen, sista, 2 the "little" things!! take care....

Hi Sue K,
We do experience so many different losses with RSD. When my girlfriend and her husband came to visit this spring, She said'You are losing time, huge blocks of time or Time is passing you by. Those words really hit home, the amount of living we lose is huge. Everything takes longer, right? If we are going anywhere, it just takes longer to get ready. Most of us are on pain drugs, so we have to wait so many hours before we can drive. our time painful words. Verbal abuse stays with us, it hurts to the core. It shows lack of empathy and compassion by the other person. Perhaps we can say,? When you say,'=============' it makes me feel sad,bad,not understood,whatever. You could write out something you want the other person to grasp. If fact, writing in a card is helpful because they can read and re-read the card. I'm falling asleep at the wheel (typewriter) Take care, loretta

thank you for sharing i am new i havnt had this for a year yet.i know the pain and miss understanding my father said the other day when am i going to stop what i am doing and go back 2 work.i just said when the doc gives ok.i bit my tounge but he dont get it i have started working when i was 12 .and at 48 they say i am done. i have a torn tenate in my arm that they wont touch.some days i just would like 2 sleep all nite and go to work and feel no pain. iam in ma also so u arent alone keep smileing and rite if you want

It is very difficult to deal with RSD, on a daily basis, as a patient. More so, it is even more difficult to have to justify, as a RSD patient,why one can't work, or even play..without someone questioning..WHY?

People close to an RSD patient may get frustrated with the change in lifestyle and this could be the loss of their interaction, with the patient, that once was a reality. Coping skills need to be integrated into the loved ones thought process, as the harm that is vented only impacts the RSD patient in a negative manner.

Promoting awareness of this harsh reality can only be shared by communication with the uninformed loved one. Continual badgering of this subject matter on the RSD patient is spiritual and emotional abuse, that needs to be addressed.

You have friends here,

Dew