For those of you with family members that have been diagnosed

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ksturner

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How do you cope? My mother was diagnosed when I was a small child, so I've grown up dealing with the trouble it can bring. (note: I use the term dealing with very lightly)
I've never known anyone else in my personal life that had fibro. or anyone else with a family member. I'd like to hear about what it's like for you having to go through life with a close family member that is in constant pain. I know it was tough for me. Most days my mom wasn't able to get up, so I had to do a lot more than a little kid should have :)
 

kmpisces

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I have fibro. But my mom has MS and has a lot of pain. I try to do what I can to help her. My mom is a very strong lady and is an inspiration. It can be hard though to see someone you love in constant pain.
 

Trellum

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Well, my sister was diagnosed with fibro a long time ago. She also had spine issues, and had a lot surgeries. It was so scary to see her in so much pain, specially after all those surgeries. I was just a kid back then, so I didn't really know how bad the situation really was. Then I grew up, I was diagnosed with the same and finally started to understand how serious the situation was! Yup, it wasn't until I saw it reflected on me that I finally understood everything.

As for coping... well, I have a lot in my hands trying to cope with my own health issues. It still hurts to see she is in pain. She can no longer dance or move around a lot. She can no longer wear high heels shoes and has to wear extra protection for her back. It's so odd. She has it way worse than me in that sense. I mean, at least my pain isn't constant. My pain can be really tough tho, but at least it isn't constant.
 

nascarmike

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One day at a time. Days can go from great to WTF in a second it's real tuff on my family and add a lot of stress at times but for the most part they are awesome and their love is a big help to me.
 

katydid

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My mother was diagnosed with RSD, now known as CRPS.... She's had it since I was 8.. I am the oldest child and also had to take on much more responsibility than any kid should have to.... I had to do more house work.. Help take care of my younger brother... In a way, I was a motherly figure to him.. It was and still is very hard. I still have more responsibility than I should, and I now have been diagnosed officially with fibro about 2 weeks ago (have been dealing with pain issues from two car accidents 2-3 years ago.

The best advice I can offer is, do what you can. Housework, errands, and a shoulder to cry on are beyond helpful to her. One thing my mom has said for years is she is so grateful that I simply understand what she is going through and am always there to lift her spirit.. She appreciates everything so much and regrets not being able to do more. She often says that she feels like she wasn't a great mother to us because of her health issues... When she says that it really upsets me because I think she has been a wonderful mother and I give her a lot of credit for raising such amazing children and I wouldn't change anything about the past except her pain and suffering. She is my best friend and the most amazing woman I've ever met.

Just remember to pace yourself when you're doing more than necessary.... And always remember to understand what she's going through and also what you are going through. Make sure she knows your love is unconditional and that will never change. And last but not least, remember to always look on the bright side, you have your mother in your life and that in itself is a blessing.
Be good to her and YOURSELF, remember how special you are for simply being there for her because she will always remember how wonderful her daughter is to her no matter what.
 

Lardeelion

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I can relate. My mom wasn't diagnosed with all of her auto-immune garbage until relatively recently, her late 50's, early 60's. But she was never the mom that other kids had when we were growing up. Her depression was out of control and, truth be told, it messed up both my brother and me. She never joined us on family ski trips or hikes in the woods, and she was always napping. And she was always miserable.

I don't think I was consciously wounded by it, though, until I had children of my own. I couldn't understand why my mom, who lives right next door, was unable to help me. She had to rest. Well, I needed to rest - I had a newborn! I was devastated and angry for a long time. In fact, just last night I was disappointed when she didn't show up to my son's Christmas program.

But eventually I understood. I got it. And I gave her forgiveness (not that she needed it, having done nothing wrong), and understanding and empathy. I let her off the hook and told her that she didn't need to feel guilty, as she had for two decades. Now, it's my turn. I have fibro, and I worry that I'll end up with the things that plague her: Sjogrens, and Scleroderma and GERD and CFS and any other auto-immune thing you can think of. Now, not only do I understand, I am there too. So to answer your question, I didn't cope well for a long time. The fact of the matter is, you simply have to deal, so you do deal. And you offer as much love and help and empathy (not sympathy - we hate that) as you can. It sounds like you're doing everything right. Good for you!
 

MissyBea

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Jun 21, 2013
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Greetings,

My mother has fibro. I have found that she loves it when I show interest in learning more about her condition as well as what she deals with. She was so excited, when I told her I found this forum! To her, that showed how much I cared about learning more about what she has to go through. In the past, she felt guilty about telling me about her ailments, so now I let her know I am here to listen to her. I don't mind hearing about what is on her mind, which is typically is how bad she is feeling. I share my problems with her, which helps her to feel more comfortable about sharing her problems with me.
I also have found that it is very important for me to not add any stress to my mothers life. I feel she has enough to deal with and my role is to make things as easy for her as possible. So, I will help her with anything she needs, laundry, grocery shopping, or just simply a listening ear.

Best Wishes,
Missy Bea
 
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