Fibromyalgia Action UK
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what is the difference between Fibro and CFS

I was diagnosed with fibro a year ago however I am just inquisitive as I read on here about CFS and just want to know the difference between the two.

thanks

Belinda

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Hi there

I am sorry to read that you have this dreaded illness and I sincerely hope that you are not suffering too much because of it. I am sorry that I do not know the answer to your question but I hope that somebody can come on and let us both know the difference.

Take care

Ken

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thanks ken

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Thankyou Ken..I'm just in so much pain with this Fibromyalgia.. some days the pain can be excruciating. .I wish you well Ken...

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Hi Bbstport , I'm sorry to hear that you have been diagnosed with Fibro, I am not an expert but I was initially diagnosed with CFS and then years later diagnosed with Fibro. I think the main difference is that CFS is all about chronic tiredness and feeling unwell and unable to function in life properly due to this excessive tiredness. Fibro can cause extreme fatigue too but is more the chronic pain that is the main symptom if Fibro. The pain can be anywhere in the body and is a muscular deep pain which can be agony. There is a problem with how Fibro sufferers bodies interpret pain. It is a fault with this interpretation which causes extreme pain which is often not treatable with medication although many do help some. I'm not sure if this helps you to understand the difference. Fibro, CFS, and Lupus are very similar symptoms and it's not easy for docs to diagnose.

Take care

April

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Thank you moonstonebright. I have just been diagnosed with Fibromyalgia and have yet to go to see my doctor having just come out of hospital. The letter came while I was in hospital from the Rheumatologist. . I had my left hip replaced this time and have had my right hip replaced and then had a revision as the first op went wrong. I was the unlucky one. You have explained Fibro so well and when I do go to my Doctor, (he says when I am more mobile) I will have a little understanding before I go. Obviously I am in extreme pain now because of the op and feel it really badly. He says that he will revise my medication. I just knew there was something more than just chronic pain and it is a relief to have a name put to it.

Take care

Lizzie

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thanks for that april. at present I am taking 30+ tablets a day along with inhalers and oramorph.

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well I feel a bit better about the 18 I take per day now. I hope that your meds are helping you

best wishes

April

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thanks april

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You are like me April - I was diagnosed 20 years ago with M.E and then diagnosed with Fibro in 2012, although rheumatologist said I have probably had the fibro for years as a lot of the symptoms of the 2 illnesses crossover. She did try to explain but I was having a really 'foggy' day! With the M.E I had the extreme fatigue and feeling unwell with bad flu like symptoms, and memory and concentration problems, headaches, pins and needles, dizziness, tinnitus, etc,etc (you know all the usual symptoms!). Then in 2009 (and even before in hindsight, but I just put it down to the M.E and prolapsed discs in my neck and lower back) I started getting more extreme pain and in 2012 the fibro was diagnosed. Like you say the 2 conditions have similar symptoms and it is so hard for the doctors, especially when there is no definitive test.

look after yourself

Nicola

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Hi moonstonebright.

I hope that you are as well as can be? I want to say a big thank you for that, I had said to bbstport that I didn't know the answer but would be interested in finding out, so thank you. As a matter of interest, I was sent for a blood test for lupus 12 months prior to my Fibro diagnosis, so that is quite interesting.

Take care

Ken x

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Hi again Lizzie, I hope you recover from your surgery soon, I had my gall bladder removed just before Christmas and am still quite sore, possibly more so than normal due to my Fibro although I'm worried I've got a hernia or something as it's got more sore the last few days and there's a hard lump which is very painful! I hope you can get some help with medications etc. I was lucky enough to be referred to a chronic pain clinic. They ran a course on management of chronic pain and a nurse helps me manage my pain meds etc. it could be worth asking your GP if there's a clinic in your area that you could be referred to it would be really helpful! I'm always here if you need a chat.

Take care

April x

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Hello Bbstport,

From my personal knowledge (with no FibroAction hat on but a little help from there website tho') and with help from information on the internet about M.E I hope to explain my thoughts on the difference between Fibro & M.E.

It is difficult for people living with Fibro and/or M.E as the symptoms for the two conditions can be synonymous and therefore appear to be the same condition.

Perhaps if we start with whats the condition's and what they mean;

Fibro-my-algia

Fibro relates to the Fibrosis Tissue it affects, my means muscle algia means pain, ache etc.

My-algic Encephalo-myel-itis

My means Muscle algic pain, ache etc Encephalo relating to the Central Nervous System(CNS) /Brain myel Spinal Cord itis Inflammation

'Fibromyalgia has been found to have the following key findings;

• Increased levels of the pain-transmitting chemicals substance P and nerve growth factor in the spine

• An extreme response to pain in the brain with a functional MRI scan, the parts of the brain that deal with pain are seen to light up from a significantly smaller pain stimuli in people with Fibro compared to healthy people

• Disrupted stage 4 (deep) sleep, meaning that sleep is non-restorative, even if the person with Fibro sleeps through the night16. Two studies have shown that artificially disrupting stage 4 sleep in a similar fashion for 3 or more nights in a row will lead to Fibro-like symptoms developing in healthy people

• Reduced availability of opioid receptors, explaining why opioid medications are less effective in people with Fibro

• A subset of people with Fibro have been shown to have positional cervical cord compression, meaning that the spinal cord in their neck is compressed when they lean their head backwards. This finding is still being studied, but this positional cervical cord compression could be a reason for the autonomic nervous system to be disrupted. People with Fibro who have this particular abnormality may benefit from a specific physical rehabilitation program to stabilise the neck, but it is still relatively early days in this area of research

• Accelerated brain grey matter loss

• Abnormalities in the dopamine systems of the brain, including a reduced dopamine response to pain. As dopamine is thought to act as the brain's "filter", these findings could help explain the autonomic dysfunction and central sensitisation of Fibro. A few medications that boost dopamine in the brain are used as treatments for Fibro (pramipexole/Mirapexin and nefopam/Acupan) and some people do very well with these.

• Changes to the Hippocampus, a part of the brain involved in many processes, including pain perception and memory formation

• Dysregulation of the HPA (hypothalamic-pituitary-adrenal) axis, which is a complex set of interactions between the hypothalamus, the pituitary gland, and the adrenal gland. The HPA axis controls reactions to stress and regulates various body processes including digestion, the immune system, mood, and energy usage

• Dysfunction of the Autonomic Nervous System

• Altered blood flow in the brain'(Lindsey Middlemiss 2009, Founder of FibroAction Trustee)

fibroaction.org/Pages/What-...

None of the above has been found to be the case in M.E as far as I am aware and we have known medication which helps in the treatment of Fibro. For instance, the wording in bold above discusses Dopamine levels and you can take Parkinson medication which help with Dopamine levels that can also be used in the treatment of Fibro, please passage below & link;

'Dopamine agonists mimic the action of dopamine in the brain, fooling the body into thinking that it has more dopamine available than it actually has. Dopamine agonists were originally used for the treatment of Parkinsons Disease, but are also recognised as being a treatment for Restless Leg Syndrome. Their use in the treatment of Fibro is still being studied, but they have proved promising in trials so far. Pramipexole (Mirapexin) is recommended for by the EULAR Guidelines for the Management of Fibro because it reduces pain, but it can be problematic for some people because of side effects'(Lindsey Middlemiss 2009 founder of FibroAction and Trustee)

fibroaction.org/Pages/Neuro...

For more information about Myalgic Encephalomyelitis(M.E) please see below;

meassociation.org.uk/about/...

Currently I believe there are no key findings that are available for Myalgic Encephalomyelitis, cure or any universal ME treatments,

I think the short answer is although having similiar symptoms as both Neurological, in my personal opinion Fibro & M.E affect the brain and CNS in different ways physiologically.

Please note this is my own opinion and I have only surmised this from what I have read on M.E. Research continues..........

I hope this information helps

Best Wishes

Emma :)

FibroAction Administrator

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Wow Emma you are truly wonderful and have an amazing knowledge of M.E and fibro! I have saved this page as a favourite and will refer to it often as I have both M.E and Fibro!

Thanks again

Nicola x

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Hello Molly,

Sorry, I cannot take credit for the main knowledge as I have put the links to the FibroAction website, I have added the author now which I thought I had done already but must have been tired after my no sleep the night before.

The main information is from the FibroAction website and before our Founder Lindsey Middlemiss stepped down as chair to be on the board she was in charge of all the information and research.

This is her work which can be found on the website via the links in my comment or can also be found below;

fibroaction.org/Pages/About...

I have however been reading research since finding out I have Fibro as being n ex nurse you cannot help yourself. I also run outr local group as a volunteer which is for Fibro & M.E, so there is a bit a knowledge rattling around in there somewhere!! But Lindsey is extremely knowledgable having founded FibroAction.

I volunteered for FibroAction because of Lindsey's work and the evidenced based information they supply. I believe in their aim's, mission and vision I'm happy to be making a small contribution to the work of the charity as a whole

FibroAction is one of the organisations that have the Information Standard Certificate (as does the NHS) to ensure that the information we produce is clear, accurate, balanced, evidence-based and up-to-date.

I hope this has explained a little bit about the differences that I believe to be correct from what I have read. However research is ongoing into both conditions as there is still much to know about the complexity of these syndromes and the fact the symptoms are very synonymous, hence I founded a support group for both conditions.

Very interesting post

Thank You for your comment

Emma:)

FibroAction Administrator

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Thanks Emma your post is truly informative and you work extremely hard helping so many people with your advice, so thank you so much from us all! Lindsey sounds like an amazing person also so thanks to her (and you of course) we at least have more knowledge on these horrible conditions.

Keep up all your good work it is much appreciated x

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Hi - Thank you for this, I found it extremely interesting and informative. I was particularly interested as I have been sent for blood tests for lupus and a couple of other things, and another MRI, so thank you.

Ken x

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thanks for that emma and thanks to all of you for your replies

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Thank You! so much Emma, I too am going to save this for further reference. xx

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Hi Emma, thanks for all this information, it's really interesting, I only described it from my own experience which isn't very detailed or medical. Thankyou also to Molly and TheAuthor for your support and comments.

Thankyou! Best Wishes

April

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