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Fibromyalgia - who cares? - Page 3 - Carers UK Forum

Fibromyalgia - who cares?

For issues related to specific conditions and disabilities.
Hi everyone

my husband has FM, basicaly the medical professionals are not helping him at all and are saying everything is in his head which is a load of bleep.

It doesn't help that over here FM is not seen as a real illness, there needs to be more awareness made and more research into FM because it is real and the pain FM suffers have is real.

sorry to rant but whenever you say FM to most people they think it's nothing.

thanks guys and i will check that link and put it on my blog. Image


ME is just an old name for Chronic Fatigue Syndrome, they are the same thing - like Manic Depression is now Bipolar Disorder, for example.
With respect, and in the kindest way possible, Myalgic Encephalomyelitis (ME) isn't synonymous with Chronic Fatigue Syndrome (CFS), neither is the same as "Chronic Fatigue" without the s word tacked on, and I wish that people bright enough to know better would stop behaving as if it were.

Check http://www.meaction.org.uk if you want more information on the subject than you can probably handle right now (written by experts for laypersons). A whole industry has been made & nurtured out of the distinction between ME & CFS.
Hi Catja, also with respect, it depends on who you ask, and that includes the professionals, which does not help at all. You could spend weeks trawling the Internet, reading the information that is out there, and end up none-the-wiser. Nobody seems to know what causes this horrible condition, most probably there are several causes but since there is so little money allocated for research I shall probably be dead before we know more, so making a distinction between ME or CFS or even FMS is, in my opinion, splitting hairs - it divides the sufferers and just distracts from the real problem. My daughter was diagnosed with CFS and FMS by a rheumatologist but it doesn't really matter because so far any attempts to get her treated have failed (yes, the usual "it's in her head") and she is getting worse. Even if she was accepted by a CFS clinic now I am not sure she could cope with the regime. As long as the Simon Wesselys and Peter Whites hog the power in this field in this country people will suffer and will be refused treatment.

(BTW, there was no need to be condescening - I could have done the same to you but I know better. We need to keep our energies to fight the bad guys, not each other. If you use the words "with respect", the contents of what you say should reflect that, otherwise they are just words.)
I to my diagnosis of fibromyalgia last week and ME i was taken seriously by the specialist and my gp
Darling wife has FM as one of her conditions, daughter has just been told she has it, she is 25.
To me it is not only the pain of FM that people don't understand it is all the other things that go with it, such as, heightened senses, such as smell, hearing, taste or feeling the cold much more than others, unable to sleep. How viruses have a much longer affect on a FM sufferer the never knowing from one day to the next how it will effect you.

Even hospitals don't understand, last year the local pain clinic set up A FM support group, good idea, however as my wife was in too much pain; and she had a prolapsed disc in her neck; to attend the first setting up meeting, she was told she was not allowed to attend any other meeting! does that make any sense?

She will never give into FM as she never lets it control her, I call it being stubborn sometimes but hey I am just carer right what would we know? (Only joking) Image
My husband has Fibromyalgia, and also ME/CFS.. I write it that way because his doctors all refer to it as one or the other.
The pain he suffers is unreal, one of his consultants referred to his pain receptor system as "incredibly complex and interesting"...
They are both invisible illnesses, although my husband now uses a wheelchair/sticks, but before people would say he looked fine. Even our families don't understand what he goes through on a daily basis.
He was referred to a CFS clinic, which was 45 minutes away. In the end he was discharged because he couldn't keep making the journey, it was too much for him, pain and fatigue wise.
As you may have experienced, trying to keep any appointment is a massive challenge. I am constantly phoning hospitals and rearranging appts at the last minute.
My step mum has Fibro and is also being investigated for ME/CFS, do they seem to go hand in hand?
I will have a look at your website.
Thank you
Saw specialist for a treatment plan and she stated both fibromyalgia is the same as ME fibro is more pain and ME is more tiredness so someone else told me
Good tracie, Im glad something is being done