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Author Topic: Fibromyalgia  (Read 7676 times)
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neptuno
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I'm a CFS sufferer...


« on: May 22, 2014, 12:30:56 PM »

Saw GP today to get repeat amitryptiline script. During consultation doc said patients with ME/CFS nearly always also have fibromyalgia.  have you been told this ?
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Slow_Leopard
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« Reply #1 on: May 22, 2014, 12:38:35 PM »

They are all labels.

Terms to describe symptoms not a specific cause.

Technically by the NHS documentation I saw, Fibromyalgia seemed to be a subset of CFS symptoms.  It generally meant you were a CFS sufferer where pain was more prominent than fatigue, or at least as prominent.  Headaches/migraines were also more common as was IBS  (another label).

I also, in pretty much every post I make here now, encourage people not just to accept that all of their problems are because of CFS/ME/Fibrowhatever.  A couple of specific physical problems went untreated with me for a long time because of my CFS/Fibro diagnosis.

I am in no way suggesting the CFS/Fibro symptoms are not real, exhausting and painful.
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Talen
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« Reply #2 on: May 22, 2014, 05:51:23 PM »

My specialist never mentioned fibromyalgia despite me telling her how severe my pain was prior to starting gabapentin.

Fibromyalgia basically means pain in muscles due to fibrosis.  Fibrosis is something you can see and diagnose, such as in pulmonary fibrosis or cystic fibrosis.  In chronic fatigue illness muscles become deconditioned and atrophy. I don't think they become fibrosed as fibrosis is irreversible which would mean no one would get better from it.

I think it is the same with myalgic encephalomyelitis.  Encephalomylitis means inflammation of the brain and spinal cord.  This too is visible and can be diagnosed with CT, MRI and PET scans.  I think a lot in the scientific community are moving away from the term ME in favour of CFS.  Many people think CFS belittles their illness but objectively it defines the illness accurately ie an illness caused by a collection of symptoms (syndrome) were chronic fatigue is the dominant symptom.

I have read that many GPs will diagnose on the dominant symptom ie. pain means fibromyalgia and fatigue means chronic fatigue syndrome.  There is no scientific evidence, as far as I am aware, to support this.
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neptuno
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« Reply #3 on: May 22, 2014, 06:33:09 PM »

SL, I've had several major health issues branded by CFS which I've chronicled over the last year or so. Being labelled with ME/CFS seems to make me invisible, however, describing muscle pain as fibromyalgia does convey the painful symptoms to others in a way that is more easily understood - so I think in this instance it may be useful !  I never thought of it like this before ..?? Huh?
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neptuno
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I'm a CFS sufferer...


« Reply #4 on: June 08, 2014, 09:24:33 AM »

Is physio useful for Fibro ? Does it help you ?
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Anne56
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« Reply #5 on: October 19, 2015, 11:38:22 AM »

I have recently been diagnosed with Fibromyalgia. My pain was getting worse so I looked into the symptoms of Fibro. All the symptoms are the same as CFS the only difference is that for ME/CFS the main symptom is extreme fatigue and for Fibro the main symptom is pain. My gp said that ME/CFS and Fibro often go together so what puzzles me is why they are not both under the one umbrella. My gp has given me Nortriptyline to help with the pain.
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Talen
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« Reply #6 on: October 19, 2015, 06:10:38 PM »

Hi Anne,

Since my relapse in February I developed tactile and auditory hypersensitivity which my specialist diagnosed as allodynia.  After reading up on allodynia I discovered it is only occurs with fibromyalgia not CFS.  Have you checked the fibromyalgia pressure points?  I was positive to most of them.
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Anne56
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« Reply #7 on: October 19, 2015, 06:31:27 PM »

I have checked the pressur points myself and they are very tender. I read on another forum that gps don't use that method for diagnosis anymore. My gp didn't check them. She asked me where I have the pain and I just described it to her.
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agapanthus
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I'm a CFS sufferer...


« Reply #8 on: October 19, 2015, 07:36:06 PM »

I mentioned rheumatologists on another thread. My friend who has Fibro was diagnosed via the pressure points via a rheumatologist, and my thoughts are that they are more likely to do so than a GP who doesn't have the experience or knowledge.
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