Hi, my name is Retnefel! Looking for support for fibromyalgia and fatigue.

Retnefel

I'm new here and not quite sure how this all works! I'm looking for support groups for fibromyalgia or related symptoms like chronic pain and fatigue. I feel really alone in this illness and I'm struggling to cope, and also having a hard time with people in my life who don't understand

Kimmy87

As a fellow sufferer (ME), I do emphasise.

https://meassociation.org.uk/local-support-groups/

https://www.fmauk.org/contactsmenu/supportgroups

A couple of links which might help ☺️

Rachel_Scope

Hi @Retnefel and welcome to the community 😊 I struggle with fibromyalgia and rheumatoid arthritis and can empathise with feeling fatigued. We're a community of members with all different disabilities and we try to support each other as best we can. There will be lots of members here who can understand your situation. Who do you have at home with you?

Retnefel

Thank you. I live at home with my mother and it's quite difficult. While I'm managing somewhat okay, she says she understands and wants to support me but as soon as I have a proper flare-up and end up bed bound, she just complains and doesn't do anything to help around the house. I don't have any expectations on her taking care of me, but I do when it comes to household chores and looking after the animals because we share that responsibility

Rachel_Scope

It sounds like a difficult situation @Retnefel. Do you have a wider support network or mental health support in place?

Retnefel

My partner is hugely supportive and he's really kind and patient. We're long distance at the moment, so I feel like I miss the physical comfort of having someone, but in every other way he is amazing. I don't like to turn to him too much though, because I've had issues with co-dependency, so I'm trying to find the balance wanting support/comfort and not turning to someone as a 'fixer'.

I'm also still in contact with the person who was sponsoring me when I was in a 12 step fellowship. I've moved to a different recovery path, but we've remained really good friends. She has a lot going on at the moment and is really struggling, so again, I don't want to turn to her and add anymore stress or worry.

Aside from that, it's just me. I don't have close friends anymore because they think I don't put any effort in to keep in touch or get annoyed when I cancel. I had to cut ties with my sister because she was extremely toxic and pretty much bullying me for my illness. She said at one point that I 'need to stop being a lazy c*** and just get off the sofa'. After years of abuse from her, that was the final straw for me.

Sorry for such a long response, it's all just coming out

Jimm_Scope

Hey, you don't need to apologise @Retnefel. I get it, sometimes when I bottle such feelings up for quite some time and when you finally start talking about them it all just starts flowing out.

I do think it's incredibly difficult for people to understand what being chronically fatigued is like. They know what being tired is like, but being tired to them is temporary, a bit of rest and they're all fine. I think people really struggle with being able to contemplate what it's like being tired literally all the time. However, that doesn't mean it's impossible for them to have some empathy and compassion. I'm sorry about what happened with your sister, it honestly sounds like you are far better off without her in your life.

Your partner sounds like a pretty amazing person 🙂 I hope you eventually get to close that distance. I also find that, once things are more solid, you find that keeping in touch with people becomes easier. It can be very difficult maintaining friendships with fatigue. Especially the mental fatigue that many conditions can cause.