Hi I have just joined, to be honest I have been thinking of doing this for a while. I have fibromyalgia and I genuinely thought I was going mad, but after reading some of the posts I am amazed how many of you are struggling daily with the same things, and you are still strong enough to support others.
It is currently 2.47am another sleepless night and I am am so pleased that I have joined. I look forward to chatting with you soon 😊
Thank you for your message, it is so true about friends. I have a friend who I have been pretty much best friends with for over 20 years and she is also a nurse. She just doesn't get it and tells me again and again that it is in my head and I am destroying my life and I should just get on with it and get back to work.
It does isolate you and makes you feel as if you are mad when you are repeatedly told it's all in your head.
Hi Rosimadd, and a very warm welcome to the forum. You will find a lot of support here. If you would like to have a look at our mother site you can find it at fmauk.org where you will find a lot of very useful information. x
I am 4 years into the fibro journey and am still learning to understand my body. It takes a while to recognise the start of flare. Just recently had one and remembered I had a migraine, I now know that this is a sign of the start of a flare. I should have taken notice and rested but we battle on, dont we?
We all think we were going mad but this forum reassures that it is not psychosomatic. It is a complex condition but you are not alone. Welcome and much love to you. Xx
Thank you for your lovely messages, it's great to know that there is support out there. I had my first PIP assessment phone call last week and saying things out loud gets you thinking about all the things that we put up with on a daily basis, and the assessment was hard and I kept thinking why do I have to keep explaining myself all the time. The energy you waste every day just trying to act that everything is fine.
I am sorry to hear that you lost your job due to this horrible illness. I am at that crossroads now. If I work I have no quality of life at home but if I don't I can do more things with my family, my husband is amazing and supports me all the time.
Thanks again love and hugs to you all xx
I’m so sorry you lost your job to fibromyalgia. This also happened to me. I was getting confused and making mistakes so they sacked me.
It’s very unfair but such is life.
I was diagnosed 3 years ago. It took many years, as no one seemed to know what was wrong?
I Saw many consultants and eventually I was diagnosed with fibromyalgia but had never heard of it.
Hello and welcome, yes sleepless nights are horrid as can effect you the next day, I know if I have a bad one it’s a no go in the mornings, I have tried having a bath with some scented lavender Epsom salts, and use a headache balm with essentials oils on my temples . I do get up and make a hot chocolate sometimes having a warm drink can help me drift off anything’s worth a try. Yes reading posts and having a chat does help I used to think I was the only one until I joined and realised just how many thousands suffer, take care xxx
Hi yes welcome to the club 😊 this is nice for advice and the get things off your chest.
I’m up early and really hoping for a good day today 🤞
Keep well xx
Hi Rosimadd, welcome to the site, I don't get on as often as I would like but everybody is so supportive especially if you are having a bad flare up. I have had fibromyalgia for 44 years now and have always been determined that it won't beat me, but I am 69 now and I must say the worse thing for me is the exhaustion and I would give a kings Ransome for a day without pain, but we could have worse conditions, I hope you are coping and speak to you again soon x
Agree with everything you say, had it many years, and single so no choice but to work thro it. Busy responsible job it was hard, crones and copd to boot. You just have to try when you can and otherwise rest. 11 weeks in lockdown not helping at the moment. Day at a time Roinmadd. Hugs to you a nd everyone else on this sote 😊🤗
Good morning and welcome. I find this group very helpful reading posts and finding that I am not alone in my suffering. It's a great help. xx
Yes I can already tell that this is going to be a real help to me going forward. Thanks for replying xx
Hi Rosimadd, welcome to this great site. Lots of friendly people who give amazing support and advice. Sorry your having trouble sleeping, lavender epsom salts helps me to relax. I bought a massive bag on Amazon. I have my fingers crossed for your PIP results, I went through the assessment recently, so stressful but I managed to get it ☺️. Take care, sending a hug 🤗 x
So glad to hear that you got PIP. Was it without appeal? I am worried that I am going to have to appeal as all I hear is that no-one gets it first time.
How long did it take you?
I was really suprised to get it tbh Rosimadd, as even my Doctor said don’t worry about as I will be turned down and she will then write a letter when I appeal. So you can imagine it was a welcome suprise. Took about 8 weeks in total from the time they received my application. Let me lnow when you get your answer, hope its soon x
I sent my forms back in December so it has taken about 6 months to get the assessment!!!
Oh thats such a long time. I live South Wales and Capita was my assessor. Have you rung them? If not may be worth a call just to see where they at!! x
I had the assessment last week and was told it could take up to 8 weeks to get the results. Somerset council is obviously slower than Wales.
I will let you know as soon as I hear anything 😊
Well Rosimadd, Nobody else appears to want to support us, so we do it ourselves!
Welcome to the Forum, Have you signed up to the Fibro and ME site, yet? Plenty of us Fibromites there!
Fibromyalgia; the club nobody wants to join! ;)!
Cheers, Midori
So true the club no one wants to join. It is nice to hear that I am definitely not alone and everyone has been so friendly on here. Also that my symptoms are quite normal!!!!!!
Hi Rosimadd
What I’ve learnt is to take each day has it comes - every morning I’m in pain and stiff the first step out of bed is the worst but it gradually gets easier - I have 3 close friends whom once I told them my diagnosis looked up information about it and are all supportive (I’m very lucky- they couldn’t understand how I had gone from the party animal to the stay at home not wanting to see or talk to anyone person I’d become )
I’d never suffered from headaches before but now for me that’s a sign of a flare up Coming on so I have to listen to my body - which at first I kept trying to prove wrong - and rest
I take sertarline in the morning and amitriptyline at night - most of the time this means I only wake up in pain 4/5 times a night - which for me is good
I’ve just dropped hours at work to try and cope better - full work life = no home life
Even though it’s not the diagnosis you want at least you know your not going mad once you have been diagnosed ( every cloud lol)
The hardest part for me was accepting the diagnosis- I’m now at one with it - I’ve realised that it’s a different way of living and to make the most of my good days and accept the bad ones
Take care x
Insomnia and not being able to switch off is one of most annoying things as well as pain. Fell asleep easily in day though
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