Fibromyalgia - who cares?

For issues related to specific conditions and disabilities.
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Hi Gordon

ME is just an old name for Chronic Fatigue Syndrome, they are the same thing - like Manic Depression is now Bipolar Disorder, for example.

CFS was probably mentioned because some of its symptoms overlap with Fibromyalgia's ones. Depending on which expert you are talking to, they will either say that CFS and FMS are the same thing or that they are two different illnesses. Patients seem to be diagnosed with FMS if they have a lot of physical pain, while CFS seems to be diagnosed if fatigue and brain fog are the main problems. That said, people with physical pain can get a CFS diagnosis as well. Since the treatment for both is very similar, it doesn't matter that much what label is used, IMO, as long as the person gets help.

Hope this helps. Image
Hello Websi - I also have fibro - it's a horrid condition which is still not diagnosed very quickly. The problem is that the criteria for having it is a bit hit and miss. CFS goes along with Fibro, as due to the essence of the condition, Chronic fatigue comes about.
Best of luck with your website xxx
welcome to the site- although i dont know anyting about this lots of people do on this site, but sending u hugs and like everyone else on this site- we all support each other and learn from each others experiences
Hi
I am a full time carer to my wife for 11 years, she was diagnosed with Fibromyalgia and has severe mobility problems.
I too have fibromyalgia although not as bad.
We get little help and support and understanding, Fibo what whats that, chronic pain, oh yes I have a sore shoulder say friends.
They just don't understand the concept of chronic pain, pain all the time.
Anyway hi to everyone who has posted.
The hard part with conditions like fibromyalgia is that the pain is so unrelenting: my understanding is that often, pain-free days are a thing of the long-distant past. But people can't see pain, and can't imagine what it is like to never be free of pain, or understand how debilitating that can be.
people can't see pain, and can't imagine what it is like to never be free of pain, or understand how debilitating that can be.
Tell me about it Image Image Image

Even after all these years, my husband's parents still can't understand that even after he's taken his painkillers & anti-inflammatory and they've had time to start working, he's still in pain.

As explained to them umpteen times before, unless you're dying it's often better not to take opiates/opiods at a dose which wipes out all pain. Take the edge off the pain and all the opiate/opiod latches onto pain receptors. Wipe out all the pain and you risk having excess opiate/opiod latching onto the brain's pleasure receptors instead, leading to addiction.

Nor do people realise (let alone remember) that "just pain" can make you feel dizzy, sick, faint, confused, and/or physically tired.
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.
Hello
I saw your post on the Carrers website.
I registered as I am an appointee for my daughter who is profoundly deaf.
I was diagnosed with fibromyalgia in 2009 but I think I had it before then. The doctor who diagnosed it was very understanding and helpful, but a month later he emerigrated to Canada. I was sent to a rheumatologist who said I had got it and gave me a leaflet about pains in your neck had no Information on fibromyalgia at all, what I found out was from I googled.
To cut a long story short,I changed my doctors which went for bad to worse was told I was malagaring with the symptoms I had and was all in my head, was giving tablets for depression when it is not depression, I saw different consultants,had lots of tests, was told to see a psychologist as it was all in my head, I made a complaint about my treatment but didn't get anywhere.i changed my doctors again and it's even worse then before as not taking serious at all.one of the consultants said I was like a computer, sometimes it works sometimes it doesn't. I had a type of seizure last year said it was psychology help i needed as the EEG came back clear, that was from the neurologist.
I now have osteoporosis of the spine that was diagnosed in June,I haven't had any real help for that either apart from walking aids.
I am 53 and before this I was physical fit I worked and went to the gym, now I have hardly any life and at home all day, I really don't understand how any doctor can think I want to be like this as I don't at all, would love to have my life back again but this is how it is.
I would like to make people more aware of what we go through every day as in Northumberland people just don't understand at all.
Thank you
Mrs eckersley
Hello Jan

So sorry to hear you are going through this. I have not got Fibro or ME but have a very good friend who has it, he is only in his mid thirties and is now no longer able to work.
Having conversed with him when he is ill I am aware of just how awful the pain can be and also just how much it is misunderstood-some still think it is "all in the mind".

You have my sympathy x
still trying to get fibromyalgia diagnosis for myself