Psychology of Pain: Fibromyalgia can no longer be called the 'invisible' syndrome

Psychology of Pain: Fibromyalgia can no longer be called the 'invisible' syndrome Using single photon emission computed tomography (SPECT), researchers in France were able to detect functional abnormalities in certain regions in the brains of patients diagnosed with fibromyalgia, reinforcing the idea that symptoms of the disorder are related to a dysfunction in those parts of the brain where pain is processed. "Fibromyalgia is frequently considered an 'invisible syndrome' since musculoskeletal imaging is negative," said Eric Guedj, M.D., and lead author of the study. "Past imaging studies of patients with the syndrome, however, have shown above-normal cerebral blood flow (brain perfusion) in some areas of the brain and below-normal in other areas. After performing whole-brain scans on the participants, we used a statistical analysis to study the relationship between functional activity in even the smallest area of the brain and various parameters related to pain, disability and anxiety/depression." In the study, which was reported in the November issue of The Journal of Nuclear Medicine, 20 women diagnosed with fibromyalgia and 10 healthy women as a control group responded to questionnaires to determine levels of pain, disability, anxiety and depression. SPECT was then performed, and positive and negative correlations were determined. The researchers confirmed that patients with the syndrome exhibited brain perfusion abnormalities in comparison to the healthy subjects. Further, these abnormalities were found to be directly correlated with the severity of the disease. An increase in perfusion (hyperperfusion) was found in that region of the brain known to discriminate pain intensity, and a decrease (hypoperfusion) was found within those areas thought to be involved in emotional responses to pain. In the past, some researchers have thought that the pain reported by fibromyalgia patients was the result of depression rather than symptoms of a disorder. "Interestingly, we found that these functional abnormalities were independent of anxiety and depression status," Guedj said.

Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale

Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale From comments: "Best article yet on why ME/CFS patients distrust the Center for Disease Control. The author has taken a very complex situation and nailed it. If only everyone in the ME/CFS community unstood the overall situation as well. Please stay with us Mr. Tuller as we need more to understand what's been happening, and to move forward with the equally complex research misunderstandings. This is a truly fine piece of reporting!" I agree with the commentator

Treatment Breakthrough (and Paradigm Shift) For CFS? Rituximab Trial Promises Hope

Chronic Fatigue Syndrome (ME/CFS) News From Phoenix Rising - Treatment Breakthrough (and Paradigm Shift?): Rituximab Trial Works Hope and pray that this time there is indeed a breakthrough and paradigm shift

i wish...please sign, share and spread as far as you can.... UK Government e-petitions need to secure at least 100,000 signatures before they are debated in Parliament. Two notable debates secured through e-petitions were the recent one calling for the release of all public papers relating to the 1989 Hillsborough football club disaster and this week's highly controversial debate on a European Union referendum The Government to apologise for its treatment of ME / CFS patients - e-petitions

Just search for UK Fibromyalgia Awareness Raising

Please join the group to help raise awareness about Fibromyalgia - with particular emphasis on our annual awareness week every September. We also run a closed group for fibromyalgia where only group members see postings: https://www.facebook.com/groups/UKFibromyalgia/169265079831907/?notif_t=group_activity#!/groups/UKFibromyalgia/169265079831907/?notif_t=group_activity

Norway's Directorate of Health Apologises for Treatment of ME Patients

European ME Alliance - Norway's Directorate of Health Apologises to ME Patients for Poor Treatment A statement from the Norwegian Directorate of Health has been received where they apologise for not having provided the necessary and proper health services to persons with ME. Such a public apology from a governmental health agency has never occurred before. Bjørn Guldvog, Deputy Director General of theNorwegian Directorate of Health made the following statement "Jeg tror at vi, i for liten grad, har klart å møte menneskene som har kronisk utmattelsessyndrom på en god nok måte. Jeg tror at det er riktig å si at vi ikke har utviklet en god nok helsetjeneste for disse, og det beklager jeg." "I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that." Can you see similar happening in the UK?

Mitochondria, not hypochondria - M.E.

Central Government Issue 21 - Mitochondria, not hypochondria - Public Service University of Hull Professor of Psychology Rhona Johnston argues against the widespread belief that ME/chronic fatigue is a psychological condition…

Low Dose Naltrexone

ITV's Dr Chris Steele supporting the use of Low Dose Naltrexone (LDN) After some quality recomendations I mentioned this to my GP...the response...but that is only for heroin addicts!

An average day with fibromyalgia and M.E.

Recently I realised that I am very wary of talking about my illness and how it affects when a family member asked for the umpteenth time what is wrong with me so i sent her the following description of my symptoms on just one day last week plus leaflets for Fibromyalgia and Myalgic Encephalomyelitis (M.E.) / Chronic fatigue syndrome (CFS) Thank you for wanting to know more, I am perhaps a little reluctant to talk about it all for a number of reasons, they are complex chronic illnesses with such a variety of symptoms that knowing where to start is a problem in itself and it would probably be incredibly boring for you plus it gets me down to dwell on it all too much. For example, if you were to ask how I am today… the honest answer is shattered as I have been awake since 2am, insomnia has returned recently as part of a more generalised flare up, after a fairly long period of sleeping better due to my GP prescribing nortryptaline after consulting a rheumatologist at the Friarage… Today I also have lower back pain which has been getting worse over the past week and cramps that had me doubled up this morning, probably due to my irritable bowel syndrome (IBS) which was diagnosed when I was about 22. The doctor recently changed my prescription for IBS as I was soiling myself, hope that settles down. I cannot take any anti imflammatories for the back pain as I was advised to stop them while I have symptoms of gastroesophagal reflux disease (GERDS) – the camera to have a look at my upper digestive tract next week is to check this out. I am thankful that it does not seem to be as bad as a previous period of digestive tract inflammation during which it was inflamed from mouth to bottom, a terrible time. Today the GERDS is tolerable with plenty of gaviscon. The dry eye syndrome is also annoying today but not as bad as it can get – in cold wind my eyes turn bright red and stream tears because they lack the natural oily lubrication….Plenty of neck pain too today plus a fuzzy headache, though again I am thankful it is not worse, as I also get visual migraines which affect my vision so I cannot read or watch TV nor drive.. Basically, I never know how I am going to feel one day to the next, I did rest last Friday as we were looking forward to meeting up at the Village Inn but was still too tired and out of sorts to get ready and had to give up half way through doing my hair. I will stop there and let you read the leaflets, as to try to list all the symptoms I enjoy at different times would wear us both out. Hope all that helps explain a little, but if you want to ask me anything about M.E. or Fibro or managing these chronic conditions, fire away, by email is often easier for me especially if I have brain fog which can leave me feeling totally moronic,.. Take care Love Jennie 30th August 2011

Seven genomic subtypes of chronic fatigue syndrome/myalgic encephalomyelitis

Seven genomic subtypes of chronic fatigue syndrome/myalgic encephalomyelitis: a detailed analysis of gene networks and clinical phenotypes -- Kerr et al. 61 (6): 730 -- Journal of Clinical Pathology

subtype 7 (pain, infectious, musculoskeletal, sleep, neurological, gastrointestinal, neurocognitive, anxiety/depression).

Conclusion: It was particularly interesting that in the seven genomically derived subtypes there were distinct clinical syndromes, and that those which were most severe were also those with anxiety/depression, as would be expected in a disease with a biological basis.

Subtype 7 sounds all too familiar although I manage ( Lord knows how) to keep depression at bay although I do get exceedingly tetchy at times....

Positive move to a new diagnostic, definition

The Psychologist News

Experts from five continents have agreed upon on a new set of 'International Consensus Criteria' for myalgic encephalomyelitis (ME; also referred to as chronic fatigue syndrome or CFS), which they hope will improve clinical diagnosis and research into the condition.

Writing in the Journal of Internal Medicine in July (tinyurl.com/44tvs6v), the 25 co-authors said: 'The primary goal of this consensus report is to establish a more selective set of clinical criteria that would identify patients who have neuroimmune exhaustion with a pathological low-threshold of fatigability and symptom flare in response to exertion. This will enable like patients to be diagnosed and enrolled in research studies internationally under a case definition that is acceptable to physicians and researchers around the world.'

The new criteria are the latest in a series of attempts to nail down the hallmarks of ME/CFS. For example, last year saw a revision to narrow down the Canadian Case Definition, originally published in 2003, which has proved popular with many researchers. Bruce Carruthers, a psychiatrist in private practice in Vancouver, who was lead author on those 2003 criteria is also co-editor of the new International Consensus Criteria.

A key departure from its forerunners by the new International Criteria is that symptoms and signs need not have been present for six months before a diagnosis can be made. 'No other disease criteria require that diagnoses be withheld until after the patient has suffered with the affliction for six months,' the authors said.

However, the cardinal symptom remains 'Post-Exertional Neuroimmune Exhaustion' - a profound loss of energy following exertion, and impaired recovery. Also, the patient must have at least one symptom in each of the following categories: neurocognitive impairments (e.g. pain); immune, gastro-intestinal and genito-urinary impairments (e.g. food sensitivities); and energy production/ transportation impairments (e.g. laboured breathing).

The new criteria also urge that the CFS label be dropped. 'Using "fatigue" as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion,' argue Carruthers and his colleagues. 'Fatigue in other conditions is usually proportional to effort or duration with a quick recovery, and will recur to the same extent with the same effort or duration that same or next day. The pathological low threshold of fatigability of ME described in the following criteria often occurs with minimal physical or mental exertion, and with reduced ability to undertake the same activity within the same or several days

Life Is Tough but Freedom Is Possible | Psychology Today

Life Is Tough but Freedom Is Possible | Psychology Today

Life is tough. We're all subject to suffering, stress, anguish, and dissatisfaction. This is the essence of the Buddha's first noble truth. Given life's uncertainty and unpredictability, how could it be otherwise?

When I first encountered this teaching (many years before I became chronically ill), I didn't feel disheartened; I felt relieved. Finally, someone was describing this life in a way that fit a good portion of my experience. What a relief to know it wasn't just me or just my life! Do you know a single person, healthy or sick, who has not experienced suffering, stress, anguish, and dissatisfaction in his or her life?

timesofmalta.com - Allies pound Libya

timesofmalta.com - Allies pound Libya

US tomahawk cruise missiles hit Libya late yesterday, the Pentagon said.

Washington has F-15 and F-16 fighter jets in Sicily, while the USS Barry and the USS Stout, both destroyers equipped with sea-to-ground Tomahawk missiles, are in the Mediterranean.

The USS Bataan, a helicopter-carrying amphibious assault ship, and two other vessels have also been deployed to relieve the USS Kearsarge and the transport docking ship USS Ponce in the Mediterranean. The Bataan was due to leave the state of Virginia last Wednesday.

The US also has three submarines in the Mediterranean capable of firing Tomahawk missiles.

The Puzzle of Chronic Fatigue Syndrome - WSJ.com

The Puzzle of Chronic Fatigue Syndrome - WSJ.com

The Puzzle of Chronic Fatigue
For 20 years, a doctor in upstate New York has been trying to prove that an outbreak of the strange syndrome in his community was caused by a virus. Now new evidence is reopening the case..

excellent article

Great research project

http://www.bond.edu.au/prod_ext/groups/public/@pub-burcs-gen/documents/genericwebdocument/bd3_016201.pdf

The International ME Research Collaboration (IMERC) confirms the strong and convincing scientific evidence of immune dysregulation in ME/CFS. Research will be encouraged into the blood-brain and other neural barriers, glial and neural cell histopathology, and neurotransmitter function including recently discovered neuropeptide function.
IMERC identified key priorities:

• The name myalgic encephalomyelitis ME would be adopted to better reflect the science and seriousness of the clinical picture in preference to the misleading label of chronic fatigue syndrome CFS.

John Falk: Chronic Fatigue Syndrome and Psychotherapy

John Falk: Chronic Fatigue Syndrome and Psychotherapy

Until now, I've told no one except a small inner-circle of family that my mysterious breakdown in health, vitality, and cognition that started the night of May 5, 2007 was not due to an exotic virus I picked up in the Congo while on assignment for National Geographic. The truth? I'm actually a textbook case of someone with CFS, a syndrome I sniffed at until it happened to me. For the sufferer CFS means a total health breakdown, like a plane that inexplicably begins tearing itself apart mid-flight. Together, all the various dysfunctions associated with it leave the patient in a state of health more debilitating than chronic obstructive pulmonary disease, heart disease, or multiple sclerosis.

There is no known cause for CFS, and most terrifying from where I sit, no cure.

I've now decided to come out of the closest -- so to speak -- because it's ultimately self-defeating living a lie. Plus, someone has to start owning this syndrome in public. The more people who fess up to having it -- and there are many more who have it than let on -- the better off we all will be in the end.

When you have CFS one of the greatest battles you fight are the ignorant smirks and expressed disbelief of those who think it's all in your head; that is, those that don't live with you and live the truth of CFS everyday. Negativity and doubt amount to an energy drain you can ill afford. It's the reason I have refused up until now to identify myself as a person with CFS.

That which medicine can't explain we tend to label psychosomatic and blame the patient, a cruel phenomenon all too familiar to those who've had MS, rheumatoid arthritis, and lupus, and a myriad of other ailments in decades past.

Overview - Chronic Fatigue - Department of Medicine - School of Medicine - Stanford Medicine

Overview - Chronic Fatigue - Department of Medicine - School of Medicine - Stanford Medicine

Has to be a positive move ( I hope)

ME CFS XMRV Expert Dr Paul Cheney - Hits Back on 'GET' Graded Exercise t...

Finally a voice of reason

Professor Hooper’s Response to the MRC PACE Trial Press Release

Professor Hooper’s Response to the MRC PACE Trial Press Release

Professor Hooper’s Initial Response to the MRC PACE Trial Press Release hosted by The Lancet



17th February 2011





1. The MRC PACE Trial used the Oxford criteria which do not define patients with ME/CFS. If used correctly, they exclude people with neurological disorders yet ME is a classified neurological disorder (WHO ICD-10 G93.3). The Trial’s “operationalised Oxford research diagnostic criteria for CFS” (Trial Protocol version 5, 2006, Section 7.2) were partly financed by the Chief Principal Investigator’s (Professor Peter White) own money (JRSM 1991:84:118-121). Professor White’s American peers have pointed out that the UK estimates (that are based on the Oxford criteria) are likely to include a high percentage of patients with psychiatric morbidity (“It is at least possible that the 2.54% to 2.6% rates in both the United States and Great Britain are due to a broadening of the case definition and possible inclusion of cases with primary psychiatric conditions. Some CFS investigators would not see this as a confounding problem because they believe that high rates of psychiatric comorbidity indicate that CFS is mainly a psychiatric disorder….Most importantly, the erroneous inclusion of people with primary psychiatric conditions in CFS samples will have detrimental consequences for both the interpretation of both epidemiological and treatment efficacy findings” (Professor Leonard Jason: Problems with the New CDC CFS Prevalence Estimates: IACFS/ME: 2007; Professor Leonard Jason: How Science can stigmatise: the case of Chronic Fatigue Syndrome. JCFS 2007:14:85-103). A Canadian psychiatrist who specialises in ME/CFS, Dr Ellie Stein, said on 25th May 2007 at the ME Research UK International Research Conference held at the Edinburgh Conference Centre, Heriot Watt University, that the Oxford criteria “could describe almost anybody. I do not believe that studies which use the Oxford criteria can be generalised to patients which most of us in this room would consider to have ME/CFS”. Indeed, on 14th July 2006 Professor White sought Ethics Committee approval to advertise his PACE Trial to GPs, asking them to refer anyone “whose main complaint is fatigue (or a synonym)”. The MRC PACE Trial entry criteria had an “open door” policy and did not identify people with ME/CFS (those supposedly under study in the PACE Trial), hence the reported results cannot be claimed to refer to ME/CFS patients.



2. The MRC PACE Trial excluded children and those who are severely affected. The results of any trial that excluded those who are severely affected cannot be taken seriously.



3. The MRC PACE Trial used no objective measures of outcome (ie. actigraphy) to show improvement or non-improvement and relies upon participants’ subjective answers to questionnaires. This is an unscientific way to gather evidence. There can be no empirical science without objective measures – objective measures are at the heart of the scientific method.



4. Professor White has claimed that CBT and GET can cure people with ME/CFS, for example, he claims that “a full recovery is possible” (Psychother Psychosom 2007:76(3):171-176) and the participants’ CBT Manual informs people that the PACE Trial therapies are curative and that “many people have successfully overcome their CFS/ME” with such behavioural interventions (“Information for relatives, partners and friends”, page 123). Moreover, in the NHS Plus Report, for which Peter White was an external assessor but failed to reveal that he was peer-reviewing his own work (Occupational Aspects of the Management of Chronic Fatigue Syndrome, October 2006), it was claimed that CBT/GET have been shown to be effective in restoring the ability to work in those who were absent from work. However, in a Statement in 2009 for the British High Court, his American peers doubted the possibility of the 23% to 25% recovery rate that Peter White claimed he had achieved (http://www.meactionuk.org.uk/JR_Statements_-_extracts.htm). Commenting on her own recently co-authored paper on CBT (C. Lopez et al, Journal of Psychosomatic Research 2011: doi: 10.1016/j.jpsychores.2010.11.010 Epub ahead of print), Professor Nancy Klimas said on the record: “Dr White challenged me in a meeting a year ago saying nothing else had been published to deny this finding. So now you have a publication, written by a psychologist and well-regarded CBT expert to use when you want to argue that CBT helps people with this illness (as it does in every chronic disease model ever tested) but does not cure the illness” (http://networkedblogs.com/dG7pU).



5. The recent drugs industry scandal concerning Avandia has resonance for ME/CFS research. The editor of the BMJ, Fiona Godlee, concluded that pharmaceutical companies could not be trusted to generate honest research in respect of their own products and that independent scientific corroboration would always be required. The same principle should apply to non-pharmaceutical research, but the only research supporting CBT/GET has been generated by those who stand to gain most in professional and financial terms from its promotion. Similar independent corroboration should be required before experimental psychological interventions are applied nationally.



6. Professor White and his co-Principal Investigators all have financial links with the health insurance industry, a matter of grave concern to the former Chairman of a House of Commons Science and Technology Select Committee and former Dean of Biology (Dr Ian Gibson MP); a member of the Home Affairs Select Committee (Ann Cryer MP); a Minister of State for the Environment (The Rt Hon Michael Meacher MP); a former President of the Royal College of Physicians (Lord Turnberg); the Deputy Speaker of the House of Lords (the Countess of Mar), and a former Health Minister and Honorary Fellow of the Royal College of Physicians (Baroness Julia Cumberledge) (Gibson Inquiry Parliamentarians’ Report, 2006). In an obvious reference to Professor White, this Report stated: “There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies, particularly the company UNUMProvident. Given the vested interest that private medical insurance companies have in ensuring CFS/ME remains classified as a psychosocial illness, there is a blatant conflictof interest here. The Group finds this to be an area for serious concern…”. In Professor White’s case, this blatant conflict of interest remains unresolved, as he is Chief Medical Officer for the insurance giant Swiss Re, and another of the PACE Trial Principal Investigators, Professor Michael Sharpe, is associated with UNUMProvident.



7. There is existing acknowledgement that there is no long-term benefit from CBT:



· Professor Simon Wessely, who directed the PACE Clinical Trial Unit, is on record stating that CBT provides no effective treatment: in his Editorial (JAMA 19th September 2001:286:11) he stated that CBT and GET are only “modestly effective” and that neither is “remotely curative”.



Wessely is also on record as stating: “It should be kept in mind that evidence from randomised trials bears no guarantee for treatment success in routine practice. In fact, many CFS patients, in specialised treatment centres and the wider world, do not benefit from these interventions” (The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Marcus JH Huibers and Simon Wessely. Psychological Medicine 2006:36: (7): 895-900).


It would surely have been better if the (more than) £5 million spent on investigating what was already known had been spent on biomedical research into this complex disorder and in helping the severely affected (for instance, by providing domestic and personal assistance) and on effective pain relief for those afflicted.


8. The Adaptive Pacing Therapy (APT) used in the PACE Trial is not the same as pacing, a common sense approach that patients find helpful. The CBT Therapists’ Manual states about APT: “Activity is therefore planned”, which indicates a structured activity regime, and the APT Therapists’ Manual lists other requirements for APT including “plan set activity in advance” (so activity must be “set activity”, not simply what the patient may be capable of doing at the time); there must be “activity analysis”; APT participants must “constantly review model, diaries and activity” and there is the requirement to “involve relatives”, which is nothing like “doing what you can when you can”. Professor White is on record as being strongly opposed to pacing: “The theoretical risk of pacing is that the patient remains trapped by their symptoms in the envelope of ill-health” (Editorial: Postgrad Med J. 2002:78:445-446), so it was unlikely that he would find pacing to be effective. This should be contrasted with his American counterparts, who promote the “energy envelope” management strategy (The impact of energy modulation on physical function and fatigue severity among patients with ME/CFS. Leonard Jason et al; Patient Educ Couns 2009:77:237-241).



9. The MRC FINE Trial (sibling of the PACE Trial) failed spectacularly. It found that “pragmatic rehabilitation” (PR, based on CBT/GET) was minimally effective in reducing fatigue and improving sleep only whilst participants were engaged in the programme and that there was no statistically significant effect at follow-up. Furthermore, pragmatic rehabilitation had no statistically significant effect on physical functioning; equally, its effect on depression had diminished at follow-up. Moreover the other intervention being tested (“supportive listening” or SL) had no effect in reducing fatigue, improving physical functioning, sleep or depression.



10. The results of the PACE Trial may mean that patients who have genuine ME as opposed to chronic “fatigue” will continue to be denied appropriate investigation and treatment; they may be deprived of State benefits necessary for survival; their insurance claims may be rejected, and they will be condemned to an even lower quality of life.



11. The results of the MRC PACE Trial were anticipated to be in favour of the interventions being studied because the Trial is but one prong of a UK Blair Government three-pronged “integrated plan” to roll out CBT and GET across the nation for those with ME/CFS (Department of Health, 2004, Statement of Information released via the Welsh Assembly Disclosure Log 2296), the other two prongs being the NICE Clinical Guideline 53 published in August 2007 and the national “Fatigue” Clinics that cost taxpayers £8.5 million to deliver an intervention known to be ineffective and to have made at least 50% of those who have undertaken it actively worse. The “integrated plan” was designed to ensure compliance, so it was never in doubt that the PACE Trial results would conform to the “integrated plan”, as indeed is the case (ie. CBT and GET are said to be safe and moderately effective treatments for everyone with ME/CFS and to be better than APT).



12. On 12th October 1996, a Lancet editorial about the Joint Royal Colleges’ Report on CFS noted that psychiatrists had monopolised the research and management of ME/CFS: “The sixteen strong committee was top heavy with psychiatric experts, so the emphasis on psychological causes and management is no surprise. Charles Shepherd, Medical Director for the ME Association, told us: ‘The committee was rigged, with dissenting voices excluded’.” Unfortunately, nothing has changed in the fifteen years since. Except apparently the Lancet editorial policy.





For a detailed analysis of the whole PACE Trial, including evidence of the in-built facility for the DWP to have unrestricted access to participants’ medical notes; the fact that participants’ data was not kept securely and was stolen but they were not informed of this; the apparent failure of the Principal Investigators to adhere to the Declaration of Helsinki; the fact that some participants were told --- against the basic rules of any clinical trial --- that the intervention they were receiving was curative; the dilution of the entry criteria after the trial had commenced (so the second and subsequent tranches of participants were less ill and thus more likely to respond favourably to the interventions); the apparent lack of clinical equipoise, and the fact that the Trial manuals describe behaviours and techniques to be used by the Trial therapists that should not --- and cannot --- be considered ethical by an independent and reasonable observer, see “Magical Medicine: how to make a disease disappear”: http://www.meactionuk.org.uk/magical-medicine.htm .



Sent on behalf of:



Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
University of Sunderland, SUNDERLAND SR2 3SD

Home:

2, Nursery Close
SUNDERLAND
SR3 1PA
Phone 0191-5285536
email: hoopersecundus@talktalk.net

YouTube - Latest WHAT ABOUT ME? teaser/trailer

YouTube - Latest WHAT ABOUT ME? teaser/trailer

a must watch....

Adapting Successfully to Long Term Illness – May Start with Dumping the Denial

Another must read for anyone struggling with pacing

Adapting Successfully to Long Term Illness – May Start with Dumping the Denial

ADAPTING TO FIBROMYALGIA

When I received the diagnosis of fibromyalgia in February of 2001, I realized I had been unknowingly living with illness and denying it most of my life.

Even as a child, I felt like my nerves were all prickly and fuzzy like static buildup. I lived with pain, stiffness, fatigue and troubled sleep. Into adulthood, weather changes, certain foods, lights, sound, the touch of my clothes, even thinking hurt. Every day was an exhausting struggle.

But the worst would pass, and I would be told how healthy I looked and that I was just out of shape and needed to push myself harder, and that there was really nothing wrong with me and I was just too sensitive.

I accepted this view of myself and lived in denial of the truth of my experience

Psychological abuse - Wikipedia, the free encyclopedia

Psychological abuse - Wikipedia, the free encyclopedia

Abusers may aim to avoid household chores or exercise total control of family finances. Abusers can be very manipulative, often recruiting friends, law officers and court officials, even the victim's family to their side, while shifting blame to the victim.[33][34]

He who cannot do what he wants must make do with what he can.

He who cannot do what he wants must make do with what he can.
- Terence

So poignant for anyone with M.E. - pacing may prevent avoid the 'boom-bust' cycle of overexertion and relapse but leads inevitably to a restricted lifestyle wherein the everyday joys of bird song or the first flowers of spring for example have to be fully appreciated or you would go stir crazy