daniella, over the years I've talked to her about her family and she just brushes it off like its nothing but I know better. I seen her face brighten when a relatives popped in twice in 4 years. She's the silent type. I've posed the question several times over the years, in a matter of fact way, if she'd like to see a therapist just to have someone talk to who deals with people who are in pain 24-7. Or to teach you relaxing techniques etc. She does move around and walks in the park and does a ton of gardening at her own pace. She has always been shy and having RSD just made her withdraw a bit more. If I was to ask her if she'd like to talk with someone who has RSD she'd shy away. But I'm working on her to open up more and that is why I've joined this site and many others and joined 2 pain organizations. I just think it will take time.


"I pulled away from people a few years back to try to lessen their pain if I killed myself but have since decided it wasn't fair to them or me so just quit it. Perhaps your wife has a hand in this separation or perhaps her family is just angry with her. I might try getting together with them individually after consulting the wife about it.
There are people who react very poorly to sickness or disability but it's hard to imagine her whole family would be this way."

Imahotep, For two years my wife kept secret from me that she was diagnosed with RSD, fearing the worst, fearing I'd leave her. She is very independent and shy. She never liked doctors much and I swear she only went to the docs twice as far as I know in 25 years. I do believe she pulled back for the same reason you did and her family may have gotten angry over it because, I think, like many, don't think much of RSD and that its mostly in my wife's head. I've talked to each family member and also given them printed material pertaining to RSD and it's effects. One sister does keep in contact with her and one brother once in a while.

"I wanted to say that is awesome of you to be there for her....you are doing what you can, but don't forget it may be her insecurity for getting rejected from others talking not just how she thinks about you. Plus I think as a caregiver and supporter is is just as important for you think to think about getting yourself maybe some counseling for coping with her and give yourself a break too. You are doing more than many husbands to for their wives and I think that is wonderful....it would be great if we could all have someone like that in our lives. Even if it is hard to keep reassuring it seems like that is what she needs to hear from her so try not to get frustrated, it is not her thinking you are not doing enough but fear and her knowing she can say that and you won't go away. Every woman needs regular reassurance whether it be about if their but is big or if you still love them. You are doing great, don't forget to take care of yourself at the sametime!"

I wanted to say that is awesome of you to be there for her....you are doing what you can, but don't forget it may be her insecurity for getting rejected from others talking not just how she thinks about you. Plus I think as a caregiver and supporter is is just as important for you think to think about getting yourself maybe some counseling for coping with her and give yourself a break too. You are doing more than many husbands to for their wives and I think that is wonderful....it would be great if we could all have someone like that in our lives. Even if it is hard to keep reassuring it seems like that is what she needs to hear from her so try not to get frustrated, it is not her thinking you are not doing enough but fear and her knowing she can say that and you won't go away. Every woman needs regular reassurance whether it be about if their but is big or if you still love them. You are doing great, don't forget to take care of yourself at the sametime!

Jennelle, Thanks! One subject that gets my wife to softly cry is her rejection she received from her former employers. She worked for a very large company in their benefits department for several years. When she developed RSD and told her boss the company appeared to find ways to dump her and gave her assignments that increased her pain such as lifting boxes, moving office equipment etc. and doing this more so than her administration duties over time. I have thought of getting some counseling but hesitate because of cost. I pay out of pocket for group health insurance close to $1000 a month plus I paid over $5000 in copays in this past year for her so adding more copays may take food out of our mouths. Yes, one thing about men is they forget to regularly reassure support and to express their love over and over again. I keep forgetting that sometimes.

"She might need more time to get to a better place where she can be around people. I think for me it was about 9 years. I was a mess.
Be patient and just hang in there. It does get better."

Ada, This is what I'm hoping and praying for! Did I read your post correctly, did you lose your husband?


"My grandad said that he was sorry and that he didn't realise that he had upset me as much as he had and that from there on in, he would try and be better and listen to me. The day later, he had a massive heart attack and passed away. I will never forget the argument my dad had with them and still, after nearly 6 months, I blame myself and wish that I never told my dad to go and say anything to them. My dad never saw my grandad the few weeks before he passed away and for so long, he blamed me and it was the hardest thing to deal with. I guess he just felt angry but it upset me and I felt as though it was my fault, even though I hadn't really done anything wrong."

ali12 Nice talking to you ali12. I've read many of your posts and pray for a cure so that one as young and wise as you can live without pain. Yes, I do believe a cure or a very good treatment for this disease will happen in the next 10-15 years or sooner! Many research projects are being conducted now on the humans' nervous system that may connect the dots and get this painful disease into remission at all levels of RSD. In the 7 years I've known of RSD, it has gotten much more needed international attention and hopefully more to follow. I was very close to my Grandfather so I understand your anguish. You should feel no remorse in what led to the incident that happened, none at all. It was no coincidence your Grandfather had the time to say he was sorry. He really was and was able to tell you before he left. Have a great day ali!


"I had to laugh at this post (or else I would cry). I have been going through the same thing with my family for over 4 years now and they do not change. I recently sent a note to all family members and my close friends about how I am feeling and what not to say to me or to people suffering from chronic pain and I never heard a word from my family but heard from all three friends immediately. Amazing. I told them I spoke my thoughts and then was not going to say anything again because it was over 4 years and I am tired of it all. It really amazes me too how family could be like this. I just don't get it. At least I know I am not the only one out there with this problem. I had my mom look at me the other day as I was wheeling my wheelchair to the curb "Oh what's this? You mean you have to take this with you? You never use it? (I used it the day before when she was not around me). She told me that someone told her from the door entrance to the room we needed to go in was a short distance. Yes, short to them but a long walk for me. It was a mess. THen, I had a hard time sitting in regular chairs and was in alot of pain the whole time only to have another family member say to me "Oh you look so good." I wanted to slide down the chair under the table!!"

Kathy, I'm absolutely convinced the rarity of RSD leads to this kind of treatment from ordinary people and even doctors. If you had cancer or MS etc. people would treat you differently, for sure. I'm even a little guilty of it myself during the early years dealing with my wife. I really had to do my homework and kind of analysis my wife's behavior and put 2+2 together to truly understand or attempted to understand what exactly it is she is going through, because she was having a hard time talking and or articulating her feelings both mental and physical because of RSD. Many times I had to read between the lines.


"I wish I had a magic answer, if anyone does, pass it along?
I've BEGGED people , my children, just to give me a call.
Nope.
I'm too "needy" now or something, I have no idea..
I wish it weren't this way.
But, you and all like you and us, are in my prayers."

AintSoBad, Sorry ASB for this to happen to you. I really don't get it myself but could be the "needy" thing that moves people away even though you don't ask for anything. Maybe it's our modern western ways perhaps. I surely hope that your kids give you a call!