HAS FIBROMYALGIA HAD A NAME CHANGE.

[michaelf43]

He all, hope all had a great xmas.

Just a quick question . I seen a new pain management dr today. This is an appointment i have been waiting for for months since i had an assessment in july. I seen a dr doger who sat me down the first thing he said was the name fibromyalgia is not used no more it is now changed to {chronic widespread pain}. I was told to have a glass of wine tonight and watch lady gaga documentary . He told me to stay on the medication im on. There is no cure for this. Only do the exercise i am comfortable with as i suffer with fatigue. I asked what about the nausia i get regularly and the coldness i consently feel . His answer was its all apart of (fibromyalgia). He did admit he doesnt know much about it but gonna get me to see there phychologist to speak to as stress has alot to do with it. He himself dont need to see me again. I was in there no more than 5 minutes. He already had my notes from the assessment in july so said he doesnt need to examin me. That was it.

Im totally at a loss of all this . And since when did the name change from fibromyalgia to chronic widespread pain. Just thought i would ask.

EDIT by Admin: changing from all uppercase. Considered shouting but also harder to read.

[rosewine]

As they say a rose by any other name will smell as sweet. Chronic widespread pain (CWP) includes fibromyalgia. I think it is a very apt description of it.

I just wondered if you had tried things like hydrotherapy or acupuncture as they can help quite a few people. There are so many different symptoms with fibro and feeling nauseous and having that horrible cold feeling despite wearing warm clothes and turning the heat up are quite common ones. Yes stress can make matters worse and of course many of us who never felt particularly stressed before get stressed now because of the unremitting natural if the illness. Hope that the psychologist can help you. Let us know how you get on.x

[michaelf43 in reply to rosewine]

Hi Rose wine.

I have had hydrotherapy which helped for the time of doing it but was totally fatigued the next day. I haven't tried acupuncture but intend to. Since I was made redundant from being a postman on ill health grounds I have managed the pain but not the fatigue or the coldness and nausea so well. So I couldn't understand how he could say it was now called chronic widespread pain as the new term for fibromyalgia when nausea and fatigue and coldness is not pain. How you have a good day.

[desquinn Partner Volunteer FMAUK Trustee]

your doctor may be confusing the British pain society care pathway for CWP including fibro. We participated in the care pathway development. Link to an article is given below but this does not mean CWP = fibromyalgia but there is overlap so the treatment pathway is similar.

academic.oup.com/bja/articl...

[Hidden in reply to desquinn]

Fibromyalgia has further reaching issues than just pain as pain is just an end result just like diarrhoea is the end result of likes of food poisoning.

As those that live with Fibro know about tiredness/sleep issues/bladder/bowels/eyes&ear issues and much more one being mouth as my dentist said last week has quite a few Fibro clients having mouth issues

[michaelf43 in reply to Hidden]

Hope Oscar bravo.

I agree how they can label everything as same as chronic widespread pain I don't know. I think because I was last to be seen here just wanted to see me quickly and go. He never evenexamined me. He was looking at previous assessment and notes and said no need to assess me as got notes there.Hope you have a good day.

[CheshireKatz in reply to Hidden]

Also appearing as MUS = medically unexplained symptoms that psychiatrists will have us believe are a mental health condition rcpsych.ac.uk/healthadvice/... many health authorities are taking up this name change as a cost cutting measure.

[desquinn Partner Volunteer FMAUK Trustee in reply to CheshireKatz]

MUS is valid until they have a medical test that is 80%+ reliable and the underlying physicality of the condition is understood. A lot of conditions are MUS until they are explained.

techniques like CBT, mindfulness and antidepressants can help people with fibro so psychiatrists have tools to bring to the fibro party and discussion.

In that link it says "But – to say that a bodily symptom is not just physical is not the same as saying they are all in the mind. Medically unexplained symptoms aren't “all in the mind”, but neither are they all in the body. To understand them we have to think about how the mind and the body work together. "

These health professionals are trying to improve the life of people with fibro through their expertise just like rheumis and neurologists are trying to help.

Saying it is a name change is not correct through, as it is a categorisation and there are many organisations that will look at conditions in different ways and the discussion over fibro is ongoing.

Phantom pain is an example of where things get complicated in trying to categorise things. An amputee will experience real and life affecting pain in a limb that is no longer there. I would not be dismissing them for their distress.

[Hidden]

I agree with desquinn hun doesnt matter what label is stuck to the illness WE all know what we suffer, after nearly 18 years and trial and error I ve stuck with Aqua aerobcis and mostly hydrotherapy, I did have acupuncture, it was good but it needs repeating after a while, all these things need a good qualified medic with you so that you dont over due it.. During the festive and other bank hols I go to local pool and use the jacuzzi, I sit in there for a good hour whilst my daughter goes for a swim and a massage, I couldnt stand the massage my muscles scream at being touched on my back. In my nursing days Ive nursed Phantom pain sufferers after limb amputation. there was a great programme on TV at Hedley Court where our injured troups go, the method of using a mirror between their legs really helped to stop the pain. CBT is very useful if you can get referred, with all the NHS cutbacks in general practice you will need a good gp who might refer you... Try and get as much as you can, you will then decide what works for you best.