Charliebear1234

[Charliebear1234]

No one knows how bad fibromyalgia is only the people that have it do and I could not cope without pain relief, I would literally end up 6 foot under because I am only just coping now with the pain relief I'm on and that just takes the edge off , I have a friend who has lung disease and I have exactly the same pain in my ribs as she has so this is how bad fibromyalgia really is 😞

[PenelopeClearwater]

Hi CharlieBear - love that name 🥰

I’m sorry you’re in so much pain. Although I don’t know how your pain feels, I can relate to that feeling of relentless pain and it being a drag.

Sometimes I feel incredibly low and it feels like things will never be good again. But then, I get a message from a friend, or I wake up and feel more myself, or any one of a million little things will just turn my thinking back to the positives.

It is a very hard thing to do and I certainly don’t find it easy myself (I hope it doesn’t read like I’m suggesting you turn that frown upside down 😅)

Often when I’m low and in so much pain, I make myself come on here, like you have and I find the responses filled with support and love to be a wonderful medicine.

I think it was on the Facebook page of FMAUK that I recently saw a post from a fibro warrior who had chosen to leave her job as she was in too much pain. She was sad, but she said that she had decided to move onto “smaller and better things”. That line really touched me, because the world tends to focus on everyone’s next BIG plan or adventure, but I’m beginning to realise that it really isn’t the big things that make life good, it’s the small things.

I hope you find something to make you smile today and look forward to doing lots of fabulous smaller and better things 🥰💙

[Charliebear1234 in reply to PenelopeClearwater]

Thankyou Penelope Clearwater , I won't tell you how IV been as it's not good IV just found out I'm on the change as I went to see doc bout how I'm feeling along with depression IV got to dig myself out of this hole of suicide, but thankyou for your lovely words of help and understanding xxx

[desquinn Partner Volunteer FMAUK Trustee in reply to Charliebear1234]

Hi Charliebear1234 ,

I am so sorry to hear that you're feeling so low. Think you're getting some good support here, but also wanted to let you know about other ways to get real-life support. These are not just for when crisis hits but to get some time to talk about things.

The Samaritans are there for you to talk to at any time and about anything that's troubling you. Please give them a call on 116 123 or email [e-mail].

Shout is a free and confidential text messaging support service for anyone who is struggling to cope. Just text SHOUT to 85258 to get in touch. The service is available 24/7 to people in the UK.

For further help see our webpage at sh.fmauk.org/furtherhelp.

Really hope things start to get a bit easier for you soon.

[Charliebear1234 in reply to desquinn]

Thankyou desquinn🥲

[Hazel_Angelstar Administrator FMA UK Staff]

Like yourself, those of us for whom medication helps often only get a limited amount of benefit - and often people without chronic pain just assume if we are taking pain medication then we are not in pain (understandably because their experience is probably that if you take pain relief for a headache or other acute pain, the it helps to ease the pain)

For me education around self management and learning how to live with chronic/persistent pain was a key part to managing my symptoms. Pacing, exercise/activity, mindfulness, heat, distraction etc are all part of my toolkit along with my medication

[Yassytina FMA UK Volunteer]

It differently is a horrid condition to cope with and yes your right the people here really do understand how hard it can be day to day, I think any pain relief that works for someone to have some quality of life has too be a bonus, sending a gentle wrap around hug x

[rosewine]

It must be difficult for people to truly understand what we go through on a daily basis but people on this site even though everyone's story is slightly different can empathise . Like you I take pain medication about it never completely takes it away just as you say takes the edge off.

I had to give up a job I loved because of the pain and brain fog but slowly learnt to find some joy in life again. It isn't the life I was hoping for but the enforced slower pace of life has let me smell the roses more and I try to take joy in smaller things. Thinking of you.x