Fibromyalgia sufferers who claim ESA are not Lady Gaga – which is why the DWP can abuse them

Lady Gaga details her condition in the Netflix documentary Gaga: Five Foot Two [Image: Netflix].

Fibromyalgia is, of course, one of the conditions affecting This Writer’s own partner (known here as Mrs Mike).

Mrs Mike was diagnosed with the condition at around the same age as Lady Gaga and still has it now, a number of years (no, I won’t tell you how many) later.

I can confirm that the symptoms in the article below are correct, and that nobody knows what causes it. The suggestion that it is a disorder in the brain is unattractive to me; the brain certainly receives amplified pain messages but whether they are magnified in the brain itself or by the nerves sending the messages is unclear.

It seems to me that pain receptors around the source of the discomfort are also triggered, despite having no pain to register, making it more uncomfortable for the sufferer. That would suggest a physiological, rather than a psychological problem – or so it seems to me.

I have omitted the paragraph on treatment because it doesn’t ring true. None of the methods mentioned – exercise, physiotherapy, adjustments in the workplace, counselling and stress management – have worked for Mrs Mike. They merely got her hopes up, only to be dashed when they failed to deliver any improvement.

There is no mention of the toll the illness takes on a sufferer’s mental health.

Most importantly, while it is welcome that Lady Gaga is willing to discuss her illness and raise awareness of it, we should all remember that she is a wealthy pop star. Most sufferers of fibromyalgia are not in that position.

Here in the UK, many are at the mercy of the Department for Work and Pensions and its fiendish Work Capability Assessment for Employment and Support Allowance.

Mrs Mike was put in the Work-Related Activity Group of this benefit’s recipients at first, which means the government expected her to get better within a year of first receiving the benefit. That was utterly unrealistic and she was told so by the first advisor who discussed her condition with her.

When she appealed, the DWP ignored her and a note was put on her file not to contact her. We only discovered this when her benefit was cut off at the end of her year in the WRAG.

I had to contact the DWP and cause all kinds of trouble before Mrs Mike was put on income-related ESA, and then into the support group where she belonged in the first place.

Other people with the condition don’t have carers like me. They struggle to make their condition understood.

And we all know what happens to people who cannot get the DWP to understand.

They end up getting slung off the benefit and into debt, despair and destitution.

Many thousands have died.

Those are the facts of fibromyalgia in 21st century Britain.

On Monday it was announced that Lady Gaga has cancelled her European tour, due to begin next week, because of “severe physical pain that has impacted her ability to perform”. She has fibromyalgia, and has made a Netflix documentary, Gaga: Five Foot Two, to raise awareness about this long-term condition. A statement says: “She plans to spend the next seven weeks proactively working with her doctors to heal from this and past traumas that still affect her daily life and result in severe physical pain in her body. She wants to give her fans the best version of the show she built for them when the tour resumes.”

We’ve all heard of Lady Gaga, but fibromyalgia syndrome (FMS) may be more of a mystery. It is a condition that is hard to diagnose, explain or treat. And many people with the condition say they struggle to get medical professionals to take their symptoms seriously. FMS is a long-term condition that causes widespread pain. Its debilitating symptoms include extreme tiredness, muscle aches, difficulty sleeping and concentrating; headaches and bloating are also common. In Lady Gaga’s case, it is easy to see how she may have initially put these problems down to touring and performing. But the fatigue and pains persist even when you rest, and can be far more draining than normal tiredness.

People with FMS often notice that a fairly innocuous injury, such as stubbing a toe, hurts more intensely and for longer than it should. And even a light touch that shouldn’t hurt at all can be experienced as an unpleasantly painful sensation. The fatigue means you need to sleep a lot but wake up feeling groggy, stiff and achy. Even mental processes feel sluggish, so it becomes a huge effort to concentrate or learn anything new, and your speech may sound slow and a bit muddled. Patients call this “fibro-fog”.

FMS is typically diagnosed in people just like Lady Gaga: female and aged 30-50 (she is 31). It may affect as many as one in 20 people, but there is no definitive test, so it is hard to estimate numbers.

No one knows what causes FMS.

There is no specific cure… Many people do get better over time. However, you cannot predict how long recovery may take, or whether symptoms will recur, so it is hard to know when she might feel ready to commit to touring again.

Source: Fibromyalgia: the chronic pain that thwarted Lady Gaga’s tour | Life and style | The Guardian

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15 thoughts on “Fibromyalgia sufferers who claim ESA are not Lady Gaga – which is why the DWP can abuse them

  1. PJB

    I’ve had fibromyalgia for 25 years and I ran a support group for 11 years and it still gets ignored by the powers that be, sleep loss/deprivation is Big part of the fibromyalgia.

  2. derestrained

    Thanks Mike my partner suffers from ME and had to go to court to overturn the DWP decision when she had brain fog, was very distressing for her and if i hadn’t been there i dare not think how she would have gotten on. Thanks again for the article.

  3. Barry Davies

    As a sufferer of M.E. one of the conditions like fibromyalgia dumped into the chronic fatigue syndrome heading, I can relate entirely to Mrs Mike. The idea that a physical condition can be treated by talking therapy, as claimed by Dr Wellesely, is ridiculous he may have improved a few people who had fatigue not due to fibromyalgia ME, or post viral conditions but due to being a symptom of depression. The idea of forcing people to exercise when they get fatigued very quickly just by doing everyday activities such s eating to going to the toilet and has been shown to exacerbate the conditions is also ridiculous, but until these false ideas of these approaches somehow being a cure are used time after time to prevent sufferers gaining access to any real help. My regards to Mrs Mike, and I hope the pain is at least being kept under control.

  4. Brian

    Theories abound about the cause of fibromyalgia, mine is that it’s a central nervous disorder brought on by a life of excessive strenuous effort, and takes over after a bout of illness or injury, either that or a environmental toxin yet unidentified. Anyone who suffers from this will understand this description. My sympathy with Mrs Mike.

  5. Val

    Maybe a rickettsia screen for your lady. Also ehrlichia. I was diagnosed with fibro 2015. Used London lab for private tests in 2017 and am positive for both. Have been walking around with typhus for over 6 years. Getting treated is another hurdle.

  6. Kristen

    She isnt the only well known person with it. Morgan Freeman has talked about it, he developed it since a car crash he was in that has paralysed his left hand ( you’ll notice in films he never uses his left hand, it’s often in his pocket.
    But yeah i have it too aswell as other conditions. Famous people are in a good position to raise more awareness of it and show that it IS a real condition. But they will get far better treatment than the average person would. Ive had to fight tooth and nail to get the ESA im on and im in the Work group even through appeal even though work would make me far worse…:(

  7. It's Me

    Do you mean neurological, I don’t know, its damn frustrating having something you can’t cure, and you desperately want it to be gone.

  8. julieanneda

    I have fibromyalgia, hEDS, OA and other comorbities…which is totally debilitating. I have to use precious energy fighting the DWP and my local hospital as hEDS is fairly rarely diagnosed and the main specialists on NHS are way oversubscribed.
    It is genetic: a fault in my collagen. It will not get better. Trying to explain that AND get any relief is incredibly soul destroying yet twice now I’ve had my DLA, and more recently my PIP taken away. The DLA was reinstated after reconsideration. The PIP by Tribunal. Why do those of us who genuinely can’t be fixed have to fight so hard to have our conditions recognised? I worked full time as a teacher for 16yrs, then when that got too much I retrained as a counsellor and managed that for 8yrs. It’s not a lifestyle choice that I have made…my DNA did that for me.

  9. katythenightowl

    The worst thing about Fibro, here in the UK, and especially if you live in the USA, is that the big health insurance firms got it classified as a problem of the mind, purely to stop the claims on their insurance that so many americans suffering from Fibro where making. Unfortunately for us in the UK, one of those same companies advised our government in the same way, hence the fallacy of it being a syndrome of the mind.
    It isn’t!
    I’ve lived with fibro for too many years to mention now – along with a host of other auto-immune problems, which is where Fibro should actually be labeled – and the only way it’s in my mind, is, like Mrs Mike, in the way it affects my mental health, having to cope with the rotten thing 🙁
    I, too, went through the hoops of various treatment regimes, promoted by the government as the fail-safe way of curing us of Fibromyalgia (yeah – right!), and which made me 10 times worse, exacerbating many of my other health problems to the point that it’s made me almost entirely bed-bound. The exercise regimes, like the other advice, was given by those same US health insurance firms – says it all, really, doesn’t it? 🙁

  10. weemeeblog

    I was DX with Fibro in Dec’16..after asking my GP to get me checked for it . 2 years before I had major breast 6th op since 2012. I hit the wall then. I had been great through BC treatment. Now Consultant tells me it is common for women who go through BC to end up with Fibro. handed me leaflet for Arthritis UK website…and that was it. No advice, no medication. Now I feel as if folk think I am malingering in the ‘cancer’ zone! Wishing Mrs Mike rest relief…& decent sleeps xx

  11. LilacWhispers

    I have had fibromyalgia since I was about 12 years old but it was only diagnosed by a rheumatologist when I was 28. I am now 70. My present rheumatologist has been doing some tests on athletes (members of the British Olympic cycling team), and found that when they were deprived of sleep by being woken numerous times each night, after three or four days, they all began to suffer many of the symptoms of fibromyalgia patients, especially acute muscle pain and stiffness, and even what we call ‘fibro-fog’ i.e. being unable to concentrate or remember things properly. He has thus tentatively diagnosed FMS primarily as a sleep disorder. He thinks that most FMS sufferers and arthritic patients start to get a flare up of pain the day before it rains because of the drop in barometric pressure which heralds the approaching ‘bad weather’. As the pressure drops, the membrane which covers all the bones in your body and which is pervaded with nerves and blood vessels, starts ever so slightly to bulge outwards, and this triggers an inflammatory reaction around some or many of those nerves, causing the classic FMS nerve pain within the tendons, ligaments and muscles attached to the membrane. At present I am taking 200mg of Celecoxib which is is a non-steroidal anti-inflammatory drug (NSAID) used to treat pain and inflammation, 600mg of Gabapentin, 20mg of Amitriptyline, both of which treat the nerve pain, and regular paracetamol throughout the day. These, combined with soothing heat (electric blanket/hot water bottles/heat pads), usually damped down the attacks.

    I do hope that some of this information is of help to Mrs Mike.

  12. Ron Moule

    Not sure if the Lady Gaga article is if any help. It links Fibro to “other trauma” and suggests there is a cure only if you look hard enough or “work” hard enough.
    It also fails to give statistics, saying for instance that “many recover” without giving any data. That could prove harmful to any analysis.

    I am sure that Mr/s Mike could provide much more relevant information about the specific condition.
    Suggesting that “thousands have died” is again unsubstantiated. There have been relatively few cases where a coroner has declared that treatment or failure of prompt decisions by the DWP has “caused” or contributed to death, even in cases if suicide.
    There was a huge increase, in comparison, in the number of disabled activists who declared that disabled people had been “killed” by government policy. This was amplified by the refusal of the Government to releas related statistics until forced to do so.
    Quite simply, there is no proven evidence of causation in the majority of cases. This does not mean that their treatment and despair was not a component factor but tbat is a matter of conjecture rather than proof.

    1. Mike Sivier Post author

      We know thousands have died because I submitted a Freedom of Information request to the government and – after two years – got back an answer showing that thousands have died.
      So don’t tell me that information is unsubstantiated. It’s a matter of public record – check the newspapers on or around August 27, 2015.

  13. Pat Sheehan

    I was diagnosed with Fibromyalgia (Neuro-Plasticity) way back in 1997 following recurring lumbar and sacral disc prolapse and claimed Incapacity Benefit for many years: I could make no progress. This was my reward for several decades of hard work in the construction industry.

    Then along came ‘New Labour’ and then the ‘Neo-Conservatives’. First I was told by staff at the Job Centre that ‘soon’ all disabled people were going to have to go back to work. Then came the Work Capability Assessment and I was told to “get in your wheelchair and get back to the Job Centre and sign on for work”. That was in 2012.
    Benefit was terminated of course and I appealed against the decision of course and eventually after about a year came face to face with a very hostile female Judge and a young male Doctor. They wouldn’t give me a verdict there and then but posted it days later.

    The DWP decision was upheld and the verdict was thus. “This man MIGHT be able to get some light office work part time”. That was it . No Benefit.

    I’ve never been able to work since: not in any meaningful ’employable’ sense: I’ve just had to struggle on as best I could but the laugh is this. New Consultant – new diagnosis. The Fibromyalgia I had had for fifteen years or more just disappeared. What I had was now called ‘Chronic Pain Syndrome’, not Fibromyalgia at all. But my symptoms were just the same only slowly and gradually getting worse.

    This is the deadly, tragic farce of a blustering, blundering medical profession coupled with the ignorance, incompetence and downright viciousness of ‘benefits system managers’ in the sixth richest country in the world in the 21st century.

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