Whats best way forward with Fibromyalgia

[Sarah2014]

Help... diagnosed with Fibromyalgia..... where do you turn for help and understanding. I feel like people dont understand the condition and believe how to help you... how do u explain it to family to help??

any information on it would be great.... am lost?

just want help xx

[Mdaisy]

Hello Sarah2014,

Welcome to the AFMCG community!

I have been diagnosed now for over 8 years however I can still remember being newly diagnosed. I wanted you to know we understand & you can come here to chat anytime and we will try our best to answer any questions.

Firstly if I could provide links to the UK Fibro charities presuming you are in Britain that is. Here they all have information leaflet you can read & usually download and print too. This should provide you with the information about Fibro & you can show your friends & family too.

FibroAction

fibroaction.org

FMA UK

fmauk.org/

UK Fibromyalgia

ukfibromyalgia.com/

You can contact any one of these for more information or any other queries, also FibroAction have a community on HU too!

Another post you may find useful to explain Fibro to others is provided below;

healthunlocked.com/afmcguk/...

I hope this is helpful to begin with as we don't want to overwhelm you with information to read. I would like to wish you well & hope Fibro isn't playing up too much today

Best Wishes

Emma

AFMCG

[Hidden]

Hi, I think you've come to the right place. I was diagnosed in November though I think I've had FMS for a very long time. I live alone so I have no-one close to turn to and everyone is preoccupied with their own problems, but don't be afraid to just tell people. My family and friends listen and mostly they understand though I have one pal who is a bit sceptical but be honest with people about your condition. I think FMS is one of those 'it takes one to know one' problems, so writing on forums like this is probably the best place to start. There is loads of info online about FMS. My physiotherapist gave me some information about a local FMS Group maybe there's one in your area and your GP might know how to contact them. There are books on Amazon that are very good. Read, read, read...often I can't do much else when I'm so tired. I find that yoga helps and meditation too. I'm also taking magnesium supplements, well, it's worth a try. Good luck. Try to stay cheerful and remember, you are not alone.

[Sarah2014 in reply to Hidden]

Thanks so much for replying.

I heard that epsom salt baths are a better way to get magnesium into ur body. So i have just started with that. Have u given that a try before ???

As for friends and family they don't really understand it abd i don't think they will. Like u say takes one to know one.

There a local group but I didn't feel comfortable going. My consultant arranging for these educational class at hospital in groups so I probably try that but I haven't had info yet.

I just get so stressed on how am going to try making my life better. Can't see it happening. Makes me so sad. X

[Hidden in reply to Sarah2014]

I would try the bath thing but I also have a skin complaint and I'm not supposed to have baths, just quick showers. I used to love baths, way back when, and nowadays it would be lovely to soak my aches and pains in a nice warm bath.

Maybe you could try printing off some info to give to your family to read and inwardly digest, then they might get a better idea of what you're facing. The problem with FMS is that the symptoms vary in severity and one day you'll seem fairly ok while the next you're completely zonked out. I keep forgetting that bit myself and when I have a good day I'll get a bit carried away and then I'll pay for it for 3 or 4 days afterwards....must learn to pace myself.

I haven't been to any group meetings. Like you, I probably wouldn't feel comfy with that but there is always someone around to talk to, like you and I are now. Hey, at least, you've been referred to a consultant. Maybe the hospital group will help you to cope. My GP just gave me a couple of website addresses, sent me off to physio via the pharmacy for a selection of anti-depressants. I gave up on the pills after 5 days because I was living in a haze and couldn't function...my brain is foggy enough these days without taking pills that make it worse. After several visits to my GP we eventually agreed that I'd just take co-codomol for the pain.

FMS is a really frustrating problem but please try not to feel down or things will seem so much worse. Do what you can and try not worry about the things you can't. It puts me in mind of the Serenity Prayer - 'God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.' I should learn to listen to my own advice, because I'm the world's worst for overdoing things.

Gotta go, I've got two dogs desperate for their walk...they keep me going too, if it wasn't for them I'd probably just stay in the house and vegetate.

Have a good day x