Lived Experience Forum

[Gina2]

Hi all, 

I'm Gina2 and I guess i wanted to share my story. 

I've lived with chronic pain since 2018 and after being misdiagnosed multiple times, i was finally diagnosed with fibromyalgia in 2020 and since then have had a uphill battle to get help. 

I've been able to find community and support, and hopefully when i move to Melbourne i will be seeing a specialist. 

I'm super positive that things will get better and I have a good feeling about it. Even though the days are tough and sometimes i have days where i struggle.

Would love to hear other peoples stories,

Gina2

[Zoe7]

Hey @Gina2  I live with chronic pain too and it is so restricting at times. We have many members here (unfortunately) who live with chronic pain. It is nice to have a place we can come to get support. Welcome to the forums.

[Gina2]

Hi @Zoe7 

Thanks for your comment and thank you for welcoming me to the forums!

Gina2

[Zoe7]

How have you found the Peer Guide Program? @Gina2 

[scruffypuffball]

@Gina2 @Zoe7 

yes i was diagnosed as well.  my research into covid has led me to realise fibro is a post viral auto-immune condition.  This research is not widely accepted but they are learning more about it every day.  I follow a bunch of doctors and researchers on twitter who share covid related info every day and they have said fibro is auto immune related.  The issue is that medicine is highly political so getting the facts and getting the truth takes a long time.

Fibromyalgia likely the result of autoimmune problems | ScienceDaily

[Owlunar2]

Hi @Gina2 @Zoe7 

I have had chronic pain too - short story  - severe osteoarthritis in my left shoulder 

I know the daily struggle  - and yes - fibromyalgia is an autoimmune disorder  - something that needs to be managed  - and I am sure you will find treatment in Melbourne  - there are many pain clinics here

I can only wish you the best - inform yourself as much as possible and be proactive 

Best wishes 

Hi @Zoe7 

Owlunar 

[Zoe7]

Hi @Owlunar2 I was going to tag you here but was not sure how you were travelling - so thank you for adding your voice 😁

Hi @Gina2 @scruffypuffball 

[SallySurvivor]

Hi Gina2,

Chronic pain is exhausting and it is difficult to not let it drag you down emotionally. I am in a place now where the pain is manageable and i am on a lot less medication. Took a long while and many ups and downs. Lots of physio now and lifestyle changes but it can improve! 

[humarni]

I know that this thread has quietened down, however it is the newest thread I can find regarding chronic pain.

As a survivor of chronic pain, I would like to share this documentary called This Might Hurt on Chronic Pain. I think it is something you would all enjoy watching as it explains Chronic Pain in a new light. Unfortunately, Chronic Pain is poorly understood and many professionals can make you feel worse or in despair after a consultation. This happened to me many times and it wasn't until I found the right specialist that I was able to deal with the anxiety and trauma that intersected my Chronic Pain.

https://www.youtube.com/watch?v=LCGF0SXk50M

Enjoy.