I need some advice. I have RSD in both my hands but it is worse in the one. It is so bad that I cannot get my own food or beverages. Even though the pain is subsiding a bit, I still do not have the strength nor relief enough to prepare food or drinks for myself. How do I stop myself from feeling like a burden to my family? I hate having to ask for this and that every 10 minutes. I have to make sure I drink a lot of fluids due to the dry mouth from my meds, and it makes it that much harder. I don't know what to do. I need help not feeling like a burden. How do I get past that, what can I do to help myself. I am not depressed which I am greatful for, but I can't get past the "I am a burden on my family" stage. It is almost 8 years and I am still stuck in this stage.

Sue,
I think you have a very good question because I feel like a burden to my family and I also feel like our financial situation is my fault. I keep dwelling on the If I never got hurt at work this never would have happened. I feel like I am the reason for almost all my family problems. I am not sure that I have advice right now. The only thing I can ask you is are you seeing a therapist or counselor? If not you should. I have had rsd for almost 7 years and am going through some more changes with my body right now meaning that I am trying to find out since I have started with rsd in my left hand why my right hand is giving me trouble as well as my knees, calves and feet. I am very scared to hear the answer. I was referred from my pain doc to see an orthopedic specialist which I did. The ortho thinks that there is a good chance that it is rsd but said he couldn't give me the final diagnosis because that is not in his field so he highly recommends that I see a neurosurgeon asap. He got his dictation over to my pain doc and now I am waiting for my pain doc to refer me over to a neurosurgeon to verify what is really going on. I just hope it doesn't take them as long to diagnose it as it did with my left hand. It took them 3 years to finally diagnose what I had. I don't mean to ramble on but my advice is to continue talking on here as well as seeing a therapist . I am seeing a therapist so I can talk because I have so much that I need to get out that it does me some good to talk.

Sincerely,
Tracy(Screwballpookie)

I just wanted to say thanks for the advice. I really appreciate it and am glad I am not the only one out there with the same feelings.

I'm not sure that I can give advice as everyone's family situation and relationships are different, but you and I are in the same boat sister! When we had our second child, we decided that my husband would stay at home (he is a paramedic) and I would work like a fiend (I am an RN) since he makes about 1/3 of my salary. This was working, tight, but working. Know my elective knee surgery has blossomed into RSD. Now we live on my STD, Aflac, and his work. The problem is that I am like another child myself. I fall, can't walk without crutches, so I cannot carry anything that I want to someplace else, and cannot do stairs (laundry). It's hellish. We actually have to find a "babysitter" while he works the hours that he can because the meds I am on make me incredibly forgetful, sleepy, and unstable. My mother drives from an hour away (she's 75 and it snows here) or my mother-in-law does the weekends. It's a horrible rut to be in. Again, I promised no advice, but know that this happens to everyone that has some kind of incapcitating thing happen. I still cry when I look at my wedding pictures and tell my husband "This isn't what you signed up for, is it?" But he feels very differently. And I'll bet your family does too. Show them that your are trying with any therapy, PT, etc, and focus on anything you can do. The only way they will feel your are a burden is if your are trying to the best of your ability to get better. Even if it's been 8 years, don't give up! Get a big old insulated straw cup and do that PT. This may be more your feeling than theirs. Sending hugs
Lori Lee

Thanks Lori Lee, I needed to hear that. Sue

Sue, my sweety feels the same way, and speaking as someone on the other end, we do not feel that our RSD sweethearts are burdens. I tell Reed constantly that I want to do things for him.. if it were me, he would take care of me and help me too. No, it isn't what I thought it would be, but it's not for him either. That's life, and we take as it comes. I feel like the best thing I can do for him is to support him, love him, push him to not give up, and yes, kick his butt every now and then when he gets into a funk. Please don't feel as if you're a burden, you are still the same person , and your family loves you. I tell Reed that he's just a little "higher maintenance" than I expected. That always gets a little laugh from him. For what it's worth, he's still my Superman, and always will be..regardless of what he can or can't do physically.

This is one subject that I really struggled with. I feel like I have dragged my family down with me. It has been a long hard road to travel.

One day I was letting my wife in on my unspoken feelings, and she tells me that if anyone was gonna leave, they would have already left, and you would do the same for me I know you would.

She was totally right, I would. It took the weight off me some, and as what she said sunk in, it gave me a feeling of security I hadnt felt in a loooong time.

I still know that if I was healthy things would be different, but I dont torture myself with these thoughts anymore because I am secure in the knowledge that im not alone.

I have my family, and I have my NT family. How could I ever go wrong

I totally understand what you are saying as I have gone (and still are) through this myself also.

I was 12 years old when I developed RSD in my left leg and right arm and I really felt like I was a burden to my mum. At that point, I was practically wheelchair bound and my mum had to carry me everywhere. I knew my mum cared about me and would do anything for me but I still felt that somehow, I was holding her back and she wasn't able to do all of the things that she wanted to do like go to work, go out and have some fun etc. I have spoken to my mum about this several times and she says that non of this is my fault - it's not my fault i'm ill and that I can't do some of the things that normal teenagers would do. She reassured me that everything was going to be OK and that if she didn't care about me - she wouldn't be looking after me as a caregiver.

One thing that has really helped my mum was talking to the doctors and also to a Psychologist. The Psychologist really explained things well to her and made her understand how I am feeling etc - that may be something to look into if you haven't already done so.

I wish you the very best and hope that you get things sorted soon - please know though that if your family didn't care about you, they wouldn't be looking after you right now.

Alison.

Well, I first would like to say hello and I think I have finally figured out how to reply to someone on this "NeuroTalk" site just now... You can check out my profile (which I still need to type up my bios, etc.)
Long, long story I suppose. As I'm sure everyone else's is in here as well. Listen, I will be the first to admit I will never claim to know what ANYONE else is feeling but myself, ever. Just to clear that one first, how could I do that possibly? We we're all made unique, one of a kinds, each with their own DNA strand, their own mind and thoughts, dreams, actions, choices, and much else. So, when we say no one understands us, what we're really saying is most definetly the truth! As it is for everyone who lives.
As for you being a burden to your family, friends, or yourself (just incase that thought has even crossed your mind once or twice), you could'nt be more off the target kiddo! See, in cases like us (RSD-or whatever other ugly disease likes to flex its muscles and show itself) what was only intended for bad, is now actually gradually being used to generate good in this crazy world believe it or not! Kind of like the good samaritian in the Bible story. An injured person left laying unattended to in the road actually got to watch more than one "Good Person" (self proclaimed) pass right on by them not to even lift a finger to help! It was'nt until the Samaritian stopped and assisted which if you read the story (the injured, Samaritian, and city they were in) did not allow the two of these type of folk associate with one another... Anyways, not even batting an eye at this thought, the Samaritian naturally gave of himself to help out another in need which only seemed like the natural thing to do in his heart at the time...
So see, its real easy for all of us to hang out with the healthy, rich, beautiful, powerful, or even intellegent of the world. But, when one of them or us gets hit with a suprise attack of disease, bankruptcy, old age, stripped of our physical independancy, or even memories-concentration-etc. Well, then, where did everyone go? Where's the party man. Is it just me or has Elvis left the building? (I just thought that one might sound funny).
Truth is, we all soon find out in trials and tribulation who and just what LOVE really is don't we? Love is an "Action" word. And we our selves can also keep putting it to work every day of our lives just by doing this very thing here. Or helping your neighbor who also is sick (who better to understand them but one of us?) You can't take someone through something you have'nt already been through yourself!
So you my friend... Priceless. Not only in your families eyes and friends, but in The One who created you.
It seems there are alot of knowledgeable people in this community, and I will thank God for that! Keep up with your awareness of "RSD". We don't need to fear it, but keep learning from it, and communicate in detail with all our doctors as much as possible every visit. Document your symptoms, bring it with you. They will copy them and add to file. Then bring the same ones to your other specialists and they will do the same. We have only ourselves to blame if these docs keep continually scratching their heads. They can only go by what we tell them. Make them listen. No one is exempt from this disease. Even our doctors could get it. So remember, there just man also searching for an answer to yet another mystery waiting to be solved.
I have a theory. They can do all the lab work and testing they want, but if the lab rat does'nt speak to them not muck will result in the end...
God Bless,
PS. I've talked to much since birth!
Traci