I can relate with some of my family. I feel especially though when this is a living with someone situation. A few thoughts is to tell your husband how he can help you and what he is doing to not help you. Even if he does not change I think speaking up can help a person to at least speak up. It did for me. I agree about therapy together as well. Do you have other supports? I know it does not take away the fact that a close person does not understand but it can help in other ways. Would he read a book on rsd or articles? I am sorry for everyone who faces people who don't seem to understand or have compassion. For me I was talking about this with my psychiatrist and was saying for some people in my life I don't expect them to understand but I do expect them to not judge or make comments that are unkind.

Mike, So well put. I think the only thing that saves me from total lack of understanding by my husband is that he has had 2 back surgeries and I think he understands a little more. But we always worked as a team when the kids where growing up, we are not the nanny or daycare type so it did get difficult at times and at one point I did stay home for 10 years which almost ruined us financially.When I think of it I don't know how we did it, oh I remember both of our parents helped us to be honest .

It's a tough balance.

Gabbycakes

Going to counseling has helped both of us deal better with this. We go individually to the same counselor.

Also, my husband attends an RSD support group with me. Seeing others with RSD and hearing what others go through seems to make it more real for him and validates my issues.

Hi bigsav, I've been thinking about your question since I answered, and thought it might help for you or your partner to look up rsdhope.org McGill Pain Index. The McGill Pain Index ranges from 1-50 and lists causlgia or RSD as 42-above childbirth and amputation of a limb.
There is also some good information on RSDSA-the national organization of RSD. The fact that there is a high number of suicides of RSD patients is evidence to me of the overwhelming pain and hopelessness some feel. Just why psychotherapy is important for us and the support of our family and friends.
Like Daniella mentioned, the importance of expressing how we feel. One of the best books on learning skills for doing this is called' Adult Children of Alcoholics by Janet Wolitz. An excellent source of learning skills to express our feelings and how to ask for what we need. And to ask our mate what we can do to fill their needs.
The pain of 42 on the McGill Pain Index shocks many people except those of us with RSD.
One thing that is so very important is to get restorative sleep. It's when my Dr. put me on a trial study along with 200 people, did I start sleeping consistantly 10 hours a night. It has helped with lowering my pain level.
Take care, your new friends, loretta

I wish I could say that I understand where you are coming from but then I would be lying...at least a little. My boyfriend does not know what I go through on a daily basis with this condition...no way he could not having this condition...but he has been SO good to me since I got hurt.

He DID go through a 2 year rehab with his ankle when he was in college so he could definitely understand my frustrations with the immobility and the long term rehab with physical therapy and the struggle to regain function. It's the constant, never ending pain that he cannot even begin to understand. But then...I hope he never has to. I wouldn't wish this on the people I hate most in this world...it's just too horrible.

And sometimes I get SO angry with my boyfriend because it seems like he just doesn't care...but it's not that he doesn't care. He does all these little things without me ever having asked, has taken over the grocery shopping because I can't push the frigging cart, is understanding about limits when it comes to physical intimacy, etc. What he does for me is so much more priceless though...he treats me like I'm normal. Day to day interactions are not about my pain...they're just normal. His support when I need it, his annoying pushing when I couldn't push myself, and his treating me normal are all things that...well...I can't really put into words what they mean to me.

I wish you the best of luck with your partner. It's those relationships that can make it or break it when it comes to dealing with this awful condition.

Bless your heart...I have been where you are and what happened to make them understand is making them WATCH me take my scripts and i took them to doctors appts. Just because you don't look sick doesn't mean you're not. I started taking pictures of my leg and it freaked people out when they saw how swollen it gets during a flare. Now I have huge knots that come out on my skin right before a flare...they are much better after living with me like this for 2 years. I used to have 2 jobs and dedicated my as an autism mentor and I had to give it up for this stupid disorder, but I am so blessed that my husband has finally started to understand. My mother turned out to be my greatest alli...she went to all my neuro appts with me and spoke up for me.

So hang in there and in the meantime here is a great site for you http://www.butyoudontlooksick.com/

It is a very frustrating process when our partners can't be supportive....for whatever reason. I ignored my bad marriage for years......busy with kids and careers, figured we'd find time for couples time sometime in the future. Losing control of my body with this rsd beast made me want to address what was in my control.....fixing my marriage, unfortunately, it didn't work out so well.

If you want this relationship to last, you've got to work on it. Share how you are feeling and try to educate your partner. Leting your resentment build makes it harder to fix the problem.

Good advice. I've never thought much of counselors as I thought most were all just Paid Listeners. Fortunately we found a kind lady that helps both of us in individual sessions.

I'm not much of a talker/sharer when it comes to deep, hard-to-talk about subjects. I don't like getting out of my comfort zone and will avoid those talks then become the passive-aggressive type. But gradually I'm sharing more and he's learning more and together we're getting better.

I've always felt that once one becomes seriously ill..That is only the beginning of their concerns..So incredibly sad as our disease affects us, our husbands/wives, children, familys and friends..all who know us differently..esp our loved ones.. but then I have also said I would never ever want anyone else to have to live as I do..with incredible constant pain... my husband does have some trouble with my being ill.. although he trys to be supportive as possible..and yes, it has placed a big twist on 'our' life... I think out of his love for me it is really crushing him inside..Although he does try to bear the pain of his heart..he has taken on the shopping and cleaning on and on duties I am no longer able to do.. but I can see this really saddens and angers him all at once.. Just as we miss our old selves they miss us too..But as a family...we have to unite and work together..He has yet to go or accompany me to conseling..and as I have come to appreciate the smaller more simplier things in life..he has gradually done the same.. I know it takes time for us all to accept this and then live with it... I post the articles on the refrigerator as well as protect he and our children from the stagering progression of my RSD... I feel very bad for all of our loved ones as I know how devestating our RSD affects us...I honestly would hate it if I had to watch my loved one have to suffer with it..

Great thread....

Hugz, Kathy