Every day I see more fibromyalgia sufferers on sites, were all so desperate too, because, it is almost an unknown illness, and because it's so complex, and as far as I'm aware it's a lot to do with our brains. Another part of everything we really do not have a clue about, I wish I had the wherewithal to promote our illness, because I am almost certain that many of you are frustrated that so little is known. I know there are fact packs available for us to give to our GPS, but even most of our GP' s, if they would actually admit it, don't have a clue, I have had only one in 24 of my GPS admitted to going on a course for Fibromyalgia. They don't know how to treat guidelines like RLS, complex migraines, and the nausea etc. Although I have found a lovely specialist nurse, he hadn't a clue about Rotigotine patches for RLS. And then of course there's the dredded fibromyalgia fog, That seems to attack us when we need it least. To have it is to know it !
What can we do to make this illness more people aware, Look. I am, as I said a gobby Yorkshire lass, but I don't want to be alone on this. Life hasn't quite squashed me yet. I am sick of sitting here and doing nothing to help US! I have spent almost 6 years stuck inside four walls, because of my illness. I'm sick of it, I just want to do something for us all and future sufferers. And. I'm absolutely scared to death, but someone has to do something. I need lots of back up and ideas. We aren't stupid people, most of us are just peed off.
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Katyloo
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Katyloo, I think your feeling the frustration that most fibro sufferers start to feel at some stage.
Part of it is anger and frustration that little to nothing is being done,, part of it is the limited understanding both from the medics and the world at large.
I think that is part of the reason many of us look in here 100 times a perhaps we can be of value or use to someone that is perhaps new to fibromyalgia and haveing a really hard time.
Medcine has a way of leaving you high and dry,, uninformed and feeing very frightened and unsure,, they tell you nothing and over the years you sort of have to try and work out whats happening in your body.
It is a constant sourse of stress for many and the situation is atrocious.
One of the things that is really anoyoing today is the A4 leaflets printed for every condition known to man. How they can tell you anything about fibro I don't know.
I my self have had fibro for about 18+ years and I am still learning,, in that time I have read many books and shared my experiance with many.
I find the viseral pain in the we small hours still to be the most disturbing of all.
I do however agree GP's seem to be very inadiquitly equiped knowledge wise for fibro,, I really thing specialist fibro centers have to be set up the world over.
It is not good enough to be handed a label and one antidepressant and a sigh of relief as you close the door in the hope that you won't bother comming back.
As you say we are not stupid people and I couldn't agree more I think most of us are Peed Off and then some.
Oh Ray, your so right, I cannot get rid of the anger and shear frustration of this abominable illness. My 8 yr old granddaughter got it right. "Grandma wants to dance, but her body doesn't" and the RLS, Its the other way around. Clever girl
It's an absolute nightmare!! I , like many others on here have multiple conditions causing pain. I have an hour or less sleep per night due to pain.A GP at my surgery was in awe of how I keep going as are my family and friends. We just have to. My son said to me , how do you keep smiling and I say, well moping around won't change anything. He has Crohn's disease diagnosed when he was 12 and copes so well, our other son has bowel issues and also copes well!! Very proud of them. Hubby says he's the only normal one 😂. Sorry I digressed then. Hope you all manage to have a good Christmas. Love and hugs to you all Lynne xxxx
Good morning katyloo here's wishing you a very warm welcome to our group.
May I just give you the heads up if I may on why you may want to lock your posts to this community only.
We take all our members privacy very seriously here at FMAUK. I see you have not locked any of your posts which contain a lot of private and very personal information. If your posts are left open they can and will be picked up by the big search engines like Google, FB etc and can be seen and read by anyone on the Internet.
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I agree with all of your points in a well written post. I myself have been told by the six doctors and two nurses at my surgery (never get to see the same one in succession) that I “might” have fibromyalgia, lupus, RA, ME etc etc etc.
Have been referred to a cardiologist for months now. Have to wait till that is done before being referred to a rheumatologist. Why wait I wonder.. no answer. So in all this time I’ve been off work five months (respect to those who have suffered for years). My bosses even came to my house obviously doubting my undiagnosed condition. Stress levels shot through the roof .
Your absolutely right we need answers. I think we get short changed by the medical profession. My first drs visit I was told I had a mild chest infection. I’m sure they care but unless you go in with a clearly visible symptom they are looking for a needle in a haystack . Of course a five minute consultation is only useful for someone with a cold etc. I know the nhs is under strain but surely we deserve better.
Thank you to this site. I am so pleased to be able to offload and to hear about others who feel the same.
When you've been through 18 years of being put on waiting lists and pushed through dept after dept,,, poked, prodded, ignored or demeaned by attitude word or deed.
You start to realise there is a problem that is much larger than fibromyalgia!
I hear you. I’m not young but with this latest bad “do” I’ve realised that I’ve had a variety of flare ups throughout my life but everyone has just said oh your like a sponge soaking everything up. When the whole time I was actually I’ll. I just lived with it going to the drs with the individual ailments not actually joining them up. Let’s hope one day we get to the heart of it.
Hello katyloo i can say that im with you on this and a Yorkshire lass myself ive got many issues and have to take each day has it comes which im sure we all do
I read a post on here and she said it was like peeling back layers and i feel like that just wondering what is up with me today and can i cope just like all the people on here i get a lot of info from here which helps tremendously so im with you hugsx
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Do no how much more I can take 😢😢😢😢😢😢
Some more concepts from Social Anthropology
Finally only a few more days update
More a statement than a question
Cannot take much more
