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April 20, 2020

Support Groups Changed My Life

I have always had the best support system from the beginning of my illness and beyond. Then I found a Central Pain Syndrome support group and it changed my life.

Before the Support Group

From day one my parents, boyfriend, and friends have been behind me. They were always there for me when I needed to complain or when I was scared. They never once thought I might be faking or being dramatic. It meant the world to me especially because there were times that I felt like it was in my head.

Feeling Alone

Even with the everyone I loved on my side I still felt so alone and like the biggest failure. I kept thinking why can I not be thankful for the love and support I have around me.

I’ll tell you why. I realized even though they were with me they didn’t necessarily fully get what I was going through. They only knew what I told them and from what they could see when I was in pain.

Feeling Out of My Head

With chronic pain and invisible illness nothing is as simple as breaking your arm and having a cast. I look perfectly healthy on the outside, but on the inside I feel bruised and like I have lost the biggest fight of my life.

I constantly had these crazy symptoms like burning all over, or pins and needles. The worst of them all was the bruising easily, the goosebumps, hardly being able to wear my cute clothes. I knew it was time I needed more help.

I continuously started to do my research and came across the Central Pain Syndrome group on facebook. I knew there might just be a bright light atthe end of the tunnel.

Finding My Support

Once I came across the Central Pain Syndrome Foundation Instagram page and their Facebook page. I was so excited and started to reach out to the higher ups to see how I was able to get involved. At the time I was a few months in at my job and wanted to spread the word on what I have been going through.

My First Meet and Greet

I wrote my first post to the group where I introduced myself and talked about my diagnosis story. I had so many people commenting and welcoming me to the group. I heard many other’s stories about how they were diagnosed and found many of them to be similar to mine.

I started posting my blogs to the foundation’s website. As I continued to get more involved on the Facebook group I started to realize there were so many more out there like me.

Finding Relief Through Support

One day I was in a lot of pain and I decided it was time I ask about one of the weird symptoms I was having to see if anyone else has. Immediately members started to react and comment on what I was saying. Most of them had the same experiences or pretty similar.

I wasn’t the only one who couldn’t wear tight clothing anymore. I wasn’t the only one who bruised like it was nothing. I wasn’t the only one who had issues with cold and the shower.

I may not be able to physically fix myself, but it was surreal that I was able to actually talk to others in similar situations and know I wasn’t crazy or being a drama queen.

Continuing to Be Involved and Help Others

I have learned so much from being in a support group for chronic pain/Central Pain Syndrome. Sometimes it can be hard to find the right fit and it is all about continuing to find where you belong. It could even be as simple as finding one or two people who really make you feel comfortable and not alone.

I just want you all to know that I am here and I will always be a place of comfort for anyone who needs it.

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About Me

AvatarI am the author of With Love, Ella, and Daniel, Ever After. I am also the voice behind the blog and podcast called With Love Alexa. I created my brand after a traumatic brain injury caused me to have chronic pain and suffer in silence. I want to be the voice for those who can't advocate for themselves.

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