Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness


Jan 31, 2016 1:57 PM

I have had CRPS for almost three years now and I'm still so frustrated that I can't do all the normal things I used to before getting full body CRPS.

Me and a friend went out for lunch the other day and watch a movie at my house afterwards and I fainted because that was too much for my body to handle.

My parents get mad at my for not washing dishes or cleaning up after myself when my body hurts so much just doing regular things is a huge challenge every day! I'm so frustrated because I feel like I'm not explaining what's going on well enough to them for anyone to realize the severity of this disease.

My sister come in town for a couple hours tomorrow! Hopefully I don't faint!

Jan 31, 2016 2:04 PM

Megablondie, I'm sorry you're going through this. I know what you feel.. I have that too. Fortunately it's been a while since I've fainted but I have a bit of a tolerance that I won't let myself if i can help it. Didn't your parents see you faint?? How could they not see how hard it is for you? Maybe your Sister can have a chat with them with you. Hang in there.. {{{Hugs}}}💕🙏🏻🌻

Jan 31, 2016 2:22 PM

Thank you Alwayzinpain! My parents were upstairs and I was downstairs when it happened. Maybe I will try to get her to talk to them. I know they really want me to get better and they are trying to help me live happily but I feel like I can't meet their standards because they are always asking more from me than I have. I barely see or talk to my friends because I have to keep everything tidy at home and keep my parents happy.

Jan 31, 2016 2:31 PM

Sweetie, the only standards that you have to live up to are YOURS. You will figure it out, I promise you will. There are many folks here that will help you along and you'll find it a bit easier to get through the bad times. Keep a journal of your triggers and what exhausts you, what food triggers you, where your pain is and what makes it better. Whether resting or taking brakes when you need to. Don't necessarily "plan" things, it takes the pressure off of you. This is your life Hun, you will find your way through it. If you keep an open, calm communication with your parents and explain to them that you know it hurts them to see you like that, but unfortunately I have what I have and it's not going away any time soon. (All though if I could wave a wand, I'd take it from you). Tell them that you will do the best you can but they need to really HEAR you and try to understand even though it's very, very difficult. I'm sending you great big (but gentle) hugs and prayers that all works out. Good luck and keep me posted. I'm here if you need me. 💕🙏🏻🌻

Jan 31, 2016 2:50 PM

Meagan I'm with u.. My mom does not get it either ..she went back and forth with what to do for lunch...she finally decided to go get something so I get up to dress right when in get done she comes in and say never mind I got pissed ..she has no idea how much it takes just to out my clothes on ..and she gonna say never mind..oh my....

Jan 31, 2016 2:56 PM

Hi mega blonde - I don't have the same physical issues, but I DO understand your living situation! I'm 48 and had to move back in with my mom and am going through very similar things. My mom doesn't understand ,she feels like I should be helping her clean/cook, and helping whenever she think I need to. Needless to say I can, I had to move in with her because I couldn't do it on my own anymore (single mom with a son still at home). From my experience- I have had to stand up for myself and try to explain, even though I feel like that is winning and I hate not being able to handle it. Try to explain (even though I know you have no energy) to your parents that you understand what your responsibilities are you are finding in difficult to maintain your even simple chores and you not just being lazy! You will have to try and claim taking care of yourself!
I wish you the best luck, strength and prayers!

Jan 31, 2016 3:07 PM

I agree with boho...although in my case I still do the things my mom puts on me to the best of my ability.. It hurts so bad. And most times I go untik I crash... It's hard when u have to move home again.. I did and I hate it. But like so many its all I have right now.
Redefining the boundaries is tough. Your parents see u as ther child not the adult who is sick and needs help.
I basically cook all the meal for a family of five i also do the shopping. Which as u know breaks me down. I've for limited movement in my arm and all the other fibromayalgia pains and fog.
Prime example today I actually managed to sleep but mom wanted to talk..so she woke me up and told me to make gravy and potatoes by the time she got home from church. I was so sleep all I heard was gravy..ha...she got home no potatoes made..but I was like I was sleeping what do u expect..ha.. But see she thinks she is speaking to her child.
It's all a process.. But we r here for u.

Ready to start relieving your pain?

Join Community