Hi

I am in the same situation as everyone here. It takes a lot out of a family, but at the same time I'm trying really hard to see how blessed I am that my family is here, they help with everything I can no longer do.

I no longer can get in the vehicle and drive, going shopping, go for my daily 2 mile walks, etc...

For some reason we are all being tested by this "monster" called RSD/CRPS.

I'm not on here much because I have trouble sitting any length of time and my focus....well it's not there like it use to be...

This is a great place to share your feelings, many people here have helped me and still do even though I'm not on as much as I once was.

Hang in there, it has helped me to know I am not alone and please know you are not alone.

Smile....

First I want to say I'm so sorry for being away so long, I haven't been feeling well at all and Thank you all for the support you all give and It great to have a place to come that understands how I feel. I'm here for you all if you ever need me. Shandi

Hi,

This is Kate's husband Steve to tell you how RSD has effected our family life.

Hello, everyone...

What I feel the most is just unending frustration. We never know from one day to the next how Kate will be feeling and it makes it very difficult to make any kind of long-range, or even short-term plans. The things that we do take much longer than they used to simply because Kate's energy level is much lower than it used to be. It is an emotionally draining feeling because there is no end in sight, and it often seems that the whole problem itself is very hard to define.

I often feel that with RSD the doctors are chasing after something that they can't really find, and it drives me crazy. I want them to FIX IT and they don't offer a lot of hope.

Kate can be quite sensitive to touch, sometimes even a light touch can cause pain. This can really limit our closeness, depending on how she is feeling on any particular day. We had to buy a lot of new clothes for her, things that are looser, more comfortable, like sleeveless shirts.

I try to be supportive as much as possible because she often feels sad and frustrated. Sometimes she just wants a hug or needs to have a good cry. I try to be there at those times. I'd like to be around the house more, but I have to work.

I worry about my own health...I'm working to keep up the medical insurance, and I feel the burden all comes down to me; I fear what will happen if I suffer from some health problems.

I guess if I had to summarize everything, it is just not knowing the future and where this is all going that I feel is most troublesome. I am determined to hang in there. I've faced worse, and I'm still here.

Steve, You are a very loving and devoted Husband and My Husband worries about the samething, If He suffered from a health problem also or loses healthcare covarage with the way things are going with our economy. I wish my husband would open up and let some of the stress out like you because I'm worried he will start to become so overwelmed on what to do and what the future holds .Only if He would join the forum and chat with the other spouses that are going through the same. I think about what affect it has on our spouses all the time, Having to adjust their schedule to see how we are feeling before we can plan a day with our family and how long can we stay. That is alot on a person to take in and Thankgoodness for the fine loving people you are to take care and help us or we would have no were to turn. Now Days with all the stress some men give up on and can't take it. Most Husband always know they can fix things when it is broken and that's why my husband ask the same, Why can't it be fixed.

Shandi: You are very lucky that you are not facing this alone. I have had RSD for over eight years now and I am now a single mom of three grown boys. However they were younger when I first had this ugly dx thrown upon me. I know that someown else said on this post that (I think it was there,children or family) Did not even want to understand what RSD is all about? Well that is what my three boys have done. It just rips my heart out! I thought after they got older this would all change and maybe they would have some different thoughts about what I was going thru. Even my oldest who has my only grandson is the worst one. He will not even call me,I have to see my grandson thru his wife. Shandi-just never let a day go by that you do not hold,love,encouraged and share your dreams with your children! All of us have a secret self that needs to be encouraged and shared with those we love. You will do fine just smile and be your self! Love To Your Family... Breezy55

Breezy that just rips my heart! I am so lucky my wife is completely understanding. I can't imagine having your oldest child not being there for you. God bless you.

Breezy,
I have two grown children a well, and I know that there is often awkwardness as sometimes they are not sure how to respond or comment, or even talk about the RSD. They are loving and sensitive and I have always been a strong influence in their lives.
I think it's just hard for them to absorb that I have RSD and will not be able to do the things we used to share, (outdoor stuff, hike, etc)

Some friends no longer call because they just don't know what to say..It's almost as though I am a different person to them now...and in some ways I am..
I can't share many of the things we used to do together, along with the spontaneity.

I bring this up as it might be that your sons simply don't know how to put into words how they feel, and therefore don't communicate at all...
Would it help if you wrote them a letter explaining how you feel.....
Take good care,
Hope4thebest xo

Hope4thebest: I did write a letter to my oldest son about all of my feelings. Also why was he not welcoming me into his life? His wife then told me that my letter never did come? I know that my son read the letter than thru it away. He than told his wife that my letter never did come to there house! Also I sent an e-mail to his wife that had everything on it that was on my letter to my son. I sent it to her because my son never opens my e-mail to him! The big ? is I do not know what it is that I ever did wrong to make him so upset with me? I do not think it has anything to do with me having RSD.However how does one know anything when the other will not talk? One of his big time promblems is he has been handed down so much money from my first husband and his grandmother,that he is so into himself. I could go on and on about that side of the family! However it will not change things right now. I am very blessed with many friends! Maybe in time things will changes. Love to all.. Breezy55

My family just witnessed a huge meltdown from me today. I haven't been this bad in a long time. It all started when I went with my elderly parents to their doctor appt. It was soooooo cold in the office that instantly both of my legs and my right arm started acting up. I cannot take the cold at all! Then we went shopping I should have gotten a scooter, but I didn't. I pushed myself too hard after the cold waiting room and now tonight I just could not take any kind of stress and just had a major crying meltdown because I hurt so bad.

My mother bought me the greatest blanket today and I am using it as security blanket. My dear hubby went and got it for me out of the car, because he didn't know what to do. It's just so hard to explain to anyone what this evil disorder can feel like. I call it "having 10 different conversations in my body at the same time." That's the only way I can describe it. I'm better now because I have my blankie and my 2 lab dogs are giving me kisses as I type. They seem to understand how I feel and always make me feel better. My family just feels helpless at times like these.Maybe one day they can under stand.

Shandi, I know exactly how you feel. I know it affects my entire family, but I think it’s especially hard on the younger ones. My youngest son, he’s 7, he calls me his ‘best friend’. For being only 7, he’s very aware of my leg/foot being in pain all the time. When he draws pictures in school he draws me either laying down or with a cane in my hands, I guess this bothers me more than it does him. One day he asked me how come I can’t be like other dads?... able to play ball or go to a function at his school (innocently pulling my heart strings...). A few weeks ago he was upset, we have a picture frame hanging on the wall with pictures from Disney World from about 15 years ago, he told me that he won’t be able to go because I can’t go because of my leg(ugh…….). And to top it off, he pointed to one of the Disney pictures & said ‘I want you the be the same’ I lost it…. The ‘mental pain’, a lot of times, is harder to deal with than the physical pain. Enough about me, hope everyone else is having a better day than me. Pain free days to ALL.