I've just been told i have fibromyalgia. Ive google it so much now that im so confused and frightened..just want to talk to someone who has it because i think unless you know how this feels you dont understand..
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Hi Pinkie 6,
No need to be scared, Fibro gets us in different ways. In my case it is mainly below my waist, which makes me need a wheelchair or rollator. Some folk have a great deal of pain; I don't, although the bones and muscles ache at the end of the day and I've slowed down a lot from the previous active and sporty person I was. A lot of it is learning what your body can no longer do and making adjustments. There are more ways than one of tackling things.
I'm fortunate in that I am now retired, and don't have timetables to keep. The Spoon Theory is a good way to track your energy through the day, and some folk, (more organised than me!) can plan their days around their spoons. I try a different tack, and try to get everything done on one day of the week , leaving the rest for me to recuperate.
You may find that you can carry on fairly normally, many of us can, with other folk its very debilitating, and I feel that attitude is helpful. Many folk get depressed with Fibro and lose heart; I got Angry, which helps me cope. Sure, there are many things I can no longer do, but it has opened up other, less physical avenues to me. OK I can no longer ride, but I can still go to horse shows. I can no longer drive, but I can still go to rallies of my favourite Camper vans!
There is plenty of help and advice available here, or on the national site, from claiming benefits to employment help, crafts and pastimes; Just remember you aren't alone. Andover has quite a number of Fibromites, and, although we don't currently have a meetup, it only takes a few to get together, maybe for coffee or similar, and perhaps something could come of it.
Unfortunately, I won't be in Andover much longer; I'm moving to an adapted bungalow in Wales in a few months time, as soon as the legal stuff is complete.
As I said at the beginning, don't be scared, there are good folk around and I wish you well on your Fibro Journey.
Cheers, Midori
I understand your fear, it's a lot to take in what frightens you the most ?
I could tell you how it affects me, but everyone of experiences different pain or difficulties.
Don't panic just try to take as much as advice as you can, and take bits from that ,that will help you.
Ask anything you want ? I will be honest from my experience, hope you feel in a better place, soon.
Welcome to the AFMCG Community Hidden !
We understand how you feel and remember what it is like to be newly diagnosed, so please do keep engaging with members here. Support from those who understand by joining a local support group, using online support, and being an informed patient by reading reputable sources including charity websites all help.
Fibromyalgia seems to affect people differently from mild to severe symptoms. Reading online ie 'Dr Google' may not be the best thing to do after a diagnosis as they are many websites either with inaccurate information or offering snake oil treatments.
Fibromyalgia symptoms can be controlled using a combined approach including medications, complementary therapies, relaxation, gentle exercise, vitamins, hydrotherapy etc. Try not to be scared and now you have a name to your symptoms try to look towards finding things that help you manage your symptoms or work towards improving your life by reducing the impact of how the condition affects you 24/7.
Do visit charity websites to read the information they provide, here's a list of websites;
healthunlocked.com/afmcguk/...
If you have any questions do ask the community about your Fibromyalgia symptoms or if you need to talk do use the community as this is what we are here for, to listen as we truly understand.
As a newbie I notice your post is unlocked, usually member prefer to answer posts locked to this community only. If you wish to do this, here's a link with all the information;
healthunlocked.com/afmcguk/...
All the best
Emma
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Just saying hello 👋
New to this site
New to this help.
Struggling to work it out!