RSD/CRPS

I have rsd for more than 20years, but I can't get my family to understand that I hurt all the time. What do I do?

I have rsd for more than 20years, but I can't get my family to understand that I hurt all the time. What do I do?

I have rsd for more than 20years, but I can't get my family to understand that I hurt all the time. What do I do?

Hi there @plakermike88, glad you found us here! You are definitely not alone in your struggles, and I can say that because I am wearing a similar pair of shoes. If you have any questions, I'd be glad to answer any that I can and also provide some encouragement! As far as your initial question goes, it is not physically possible to get your family to fully understand your battles, only for the sheer fact that they are not facing what you are. However, getting them onto your support team is key! There are ways to get them on board and achieve sensitivity toward your illness. For me, talking was my first step. Be 100% open on a day-to-day basis, they are not mind readers. Share your struggles, achievements, goals, NEEDS, expectations etc. You have to voice those things. Once they know, it is highly likely that their sense of awareness will greatly increase. You will find they will step into help without even asking, or start a conversation about how you are really doing that day. That alone brings great encouragement because it allows others to bear your burden, even if only from an emotional standpoint. You took another big step, and landed here. There's a loving community of us out here ready to help others in need. Another big point I'd encourage you with (and you probably already know) is to be your own advocate. That was my greatest tool, it really helped me with my motivation and endurance in life. "Nothing will change til something changes." Do research, study your illness, talk to others for suggestions, trial new things that may help, but don't get frustrated if something doesn't work at first. That's just one step closer to finding relief. And, talk with your doctor(s) about YOUR needs. Let them know specifically the agenda you have. For me, right now that's solely pain management. A lot of times they have no clue what that looks like, so always try to be a few steps ahead of them if possible so you can voice specific things. I hope this helps you, I'll apologize now if anything I've written has come off in a harsh tone etc, that is definitely not my intention. I just know how it feels to feel isolated, like you're walking around with an invisible illness in a world that only recognizes visible disabilities. Because you are, and it sucks lol. It's tough, but each day is fresh and new, and brings new moments! Always look for that flower in the room or rainbow in the sky. They're there, but you may have to search some. 🙂 Wishing you all the pain free days possible!

Hi there @plakermike88, glad you found us here! You are definitely not alone in your struggles, and I can say that because I am wearing a similar pair of shoes. If you have any questions, I'd be glad to answer any that I can and also provide some encouragement! As far as your initial question goes, it is not physically possible to get your family to fully understand your battles, only for the sheer fact that they are not facing what you are. However, getting them onto your support team is key! There are ways to get them on board and achieve sensitivity toward your illness. For me, talking was my first step. Be 100% open on a day-to-day basis, they are not mind readers. Share your struggles, achievements, goals, NEEDS, expectations etc. You have to voice those things. Once they know, it is highly likely that their sense of awareness will greatly increase. You will find they will step into help without even asking, or start a conversation about how you are really doing that day. That alone brings great encouragement because it allows others to bear your burden, even if only from an emotional standpoint. You took another big step, and landed here. There's a loving community of us out here ready to help others in need. Another big point I'd encourage you with (and you probably already know) is to be your own advocate. That was my greatest tool, it really helped me with my motivation and endurance in life. "Nothing will change til something changes." Do research, study your illness, talk to others for suggestions, trial new things that may help, but don't get frustrated if something doesn't work at first. That's just one step closer to finding relief. And, talk with your doctor(s) about YOUR needs. Let them know specifically the agenda you have. For me, right now that's solely pain management. A lot of times they have no clue what that looks like, so always try to be a few steps ahead of them if possible so you can voice specific things. I hope this helps you, I'll apologize now if anything I've written has come off in a harsh tone etc, that is definitely not my intention. I just know how it feels to feel isolated, like you're walking around with an invisible illness in a world that only recognizes visible disabilities. Because you are, and it sucks lol. It's tough, but each day is fresh and new, and brings new moments! Always look for that flower in the room or rainbow in the sky. They're there, but you may have to search some. 🙂 Wishing you all the pain free days possible!

Hi,@rivermaya34 I was wanted ask your opinion on this situation. I talked to some of my family and most of them were very supportive, don't understand it, but supportive. Then I have a few of them that think I am making it more than it is. It's very frustrating , all I want to do is scream. How do you handle this kind of stuff? I know I am being a bother I just needed to ask someone who is going through this as well. Thank you for listening to me and I hope you are having a painless day.

@plakermike88 Hey there! Being a "bother" is only your perception of the situation. Let me clarify - what I mean, is unless they actually verbalize that to you, then don't fall under that assumption. It will only dampen your spirits and won't affect them. An example is forgiveness, right? When we hold a grudge, we are only hurting ourselves, not the other party. When we forgive or let go, it releases us from holding onto fears, anger, bitterness, hurt etc etc. I'd encourage you to not give up - keep gently reminding those who are skeptical that your battles are real, and unless they are really inside your body, they can't really know. They simply have to trust you and that is that. You can't force trust, you have to earn it and sometimes it takes longer than we want. But, I promise you the patience and grace you show them will pay off in the long run. My own life is a testament to that. Just keep talking and persevering, and don't let your mind wander into the "unknowns" or the "what ifs". Our minds can play dirty tricks on us, including forming thoughts about others that possibly aren't true. Let the little stuff go and move on. Keep living your life and seeking out joy. I promise your mindset will change and you'll experience overwhelming peace. The pain is very real, I won't lie, as we both know. When you get down or frustrated, jump on here and reach out to us! There is almost always someone on here 24/7 ready to listen and provide support, and even moreso bear your burdens. We're all in this together, never forget that. Another thing you can do, is show them the research or let them talk to a doctor directly. Better yet, encourage them to join a support group for "family of" or "caregivers" (not saying you're disabled, but sometimes the groups can become blended is all). And remind them that you are not alone, there are many others of us out here experiencing high levels of antagonizing and frustrating pain that create many challenges. But we adapt and live. I'd be glad to be a point of contact for you, if anyone in your family wants to talk to someone else about it (privately, of course and not breaching your privacy). But, I can share with them my own story and I'd be surprised if their views didn't soften. 🙂 Keep at it, and best of luck! You're doing great and taking big strides! Your story is encouraging to the rest of us, just voicing that to you. Thanks for the pain-free wishes!

@plakermike88 Hey there! Being a "bother" is only your perception of the situation. Let me clarify - what I mean, is unless they actually verbalize that to you, then don't fall under that assumption. It will only dampen your spirits and won't affect them. An example is forgiveness, right? When we hold a grudge, we are only hurting ourselves, not the other party. When we forgive or let go, it releases us from holding onto fears, anger, bitterness, hurt etc etc. I'd encourage you to not give up - keep gently reminding those who are skeptical that your battles are real, and unless they are really inside your body, they can't really know. They simply have to trust you and that is that. You can't force trust, you have to earn it and sometimes it takes longer than we want. But, I promise you the patience and grace you show them will pay off in the long run. My own life is a testament to that. Just keep talking and persevering, and don't let your mind wander into the "unknowns" or the "what ifs". Our minds can play dirty tricks on us, including forming thoughts about others that possibly aren't true. Let the little stuff go and move on. Keep living your life and seeking out joy. I promise your mindset will change and you'll experience overwhelming peace. The pain is very real, I won't lie, as we both know. When you get down or frustrated, jump on here and reach out to us! There is almost always someone on here 24/7 ready to listen and provide support, and even moreso bear your burdens. We're all in this together, never forget that. Another thing you can do, is show them the research or let them talk to a doctor directly. Better yet, encourage them to join a support group for "family of" or "caregivers" (not saying you're disabled, but sometimes the groups can become blended is all). And remind them that you are not alone, there are many others of us out here experiencing high levels of antagonizing and frustrating pain that create many challenges. But we adapt and live. I'd be glad to be a point of contact for you, if anyone in your family wants to talk to someone else about it (privately, of course and not breaching your privacy). But, I can share with them my own story and I'd be surprised if their views didn't soften. 🙂 Keep at it, and best of luck! You're doing great and taking big strides! Your story is encouraging to the rest of us, just voicing that to you. Thanks for the pain-free wishes!

Anyone out there with RSD/CRPS?

I am having a flair up, and it gets harder every time. Does anyone out there have any suggestions or feel like I do? Thank you for listening to me and I everybody is having a better day than I am.