Update – managing patients with medically unexplained symptoms

Since writing my ‘Outsider’s Observation’ piece about Medically Unexplained Symptoms in General Practice for GP View at the end of 2016, there seems to have been a remarkable proliferation of articles, and medical CPD events, around the issues of managing patients with medically unexplained symptoms.  Of course these will all have been in the pipeline for many months or longer.

The most notable of the articles has been:

  1. BMJ article How should we manage adults with persistent unexplained physical symptoms February 2017 
  2. BMC Family Practice Medically unexplained symptoms and symptom disorders in primary care: prognosis-based recognition and classification February 2017
  3. BJGP March 2017 article Medically unexplained symptoms: continuing challenges for primary care

 

These have made for illuminating and alarming reading.  I and some courageous patients have contributed rapid responses and e-letters (where it has been possible for non-doctors to do so) and several of these contributions have been published. It has been very noticeable that there has been almost no reaction, response, acknowledgement, challenge or whatever to what we have written.

I was especially alarmed by the BMC Family Practice article (above no.2), which describes Bodily Distress Syndrome (BDS) – more severe MUS – thus: 

Recent studies on BDS suggest that central sensitisation not only results in multiple symptoms; it may also prompt several specific symptom patterns described by arousal and/or exhaustion symptoms. These symptoms cluster in four groups: 1) cardiopulmonary/autonomic arousal symptoms (palpitations/heart pounding, precordial discomfort, breathlessness without exertion, hyperventilation, hot or cold sweats, dry mouth), 2) gastrointestinal arousal symptoms (abdominal pains, frequent loose bowel movements, feeling bloated/full of gas/distended, regurgitations, diarrhoea, nausea, burning sensation in chest or epigastrium), 3) musculoskeletal tension symptoms (pains in arms or legs, muscular aches or pains, pains in the joints, feelings of paresis or localized weakness, backache, pain moving from one place to another, unpleasant numbness or tingling sensations), and 4) general symptoms (concentration difficulties, impairment of memory, excessive fatigue, headache, dizziness).

The same article goes on to recommend that:

Taking a prognostic approach, while remaining agnostic about aetiology, is likely to be acceptable for both doctors and patients. 

This is frankly astonishing.  I very much doubt whether remaining ‘agnostic about aetiology’ of such extreme bodily distress is indeed acceptable to GPs or patients?

The pertinent and very informative blog What’s the harm in taking an antidepressant by Kelly Brogan MD, summarising very clearly for GPs the research about antidepressants by Carvalho et al published in 2016 , points to a clear overlap with many of the BDS symptoms described above.  I know of many people who have direct experience of this terrible suffering – due directly to effects of antidepressants and/or benzodiazepines and other psychiatric medicines which have been taken as prescribed by their doctors.

Surely the medical establishment cannot continue to turn a blind eye to what seems to be happening all around us?

In March we (I, on behalf of a patient self-help group Recovery and Renewal) launched a public petition to the Scottish Parliament Petitions Committee, PE01651 ‘Prescribed drug dependence and withdrawal’. This is currently making its way through the Scottish Parliament Petitions process and gathering formal written statements as these become published online.  A Scottish GP has written BJGP Bad Medicine: The medical untouchables supporting our petition. Now a similar public petition has also been launched with the Welsh Assembly Petitions Committee .

In Scotland our Chief Medical Officer, Catherine Calderwood, is promoting the impressive ‘Realistic Medicine’ initiative which was begun in 2016 and has now developed into ‘Realising Realistic Medicine’.  I attended the Realistic Medicine conference in Edinburgh on 24 August, where some 70% of attendees were doctors. The conference was themed around improving communication between all parties and ‘listening to patients’. The speakers championed honesty around adverse events and the principles of the Duty of Candour.  There was a relevant workshop about SIGN (Scottish Intercollegiate Guideline Network) guidelines and mention of ‘patient-centred outcome measures’ and patient surveys and aiming to ‘reduce harm and waste’. There was also a lot of discussion on the problems of ‘long-term conditions’, dementia and work with Alliance Scotland (such as ‘House of Care’) as well as end-of-life care difficulties and dilemmas. As our petition shows, many cases of long-term conditions may indeed be caused or exacerbated by over-use of prescribed antidepressants and benzodiazepines.  We are calling on the Scottish Government to put their stated Realistic Medicine commitments into practice.

There are serious ethical issues that need to be taken into consideration, by all of us, which are set out starkly in the 2016 paper by Peter Breggin in his ‘Rational Principles of Psychopharmacology’ where he says:

“Psychologists, counselors, and social workers have been trained that it is their duty to refer their more distressed clients for psychiatric drugs.  A growing, well-documented literature continues to describe the tragic results of this. Therapists and healthcare providers have an ethical duty to provide scientific information about the real effects of psychiatric drugs.”    

“Psychologists, therapists and other healthcare providers who read this article will have a more accurate understanding of drug effects than the vast majority of prescribers.”

Peter Breggin’s paper makes for sobering reading.


Author: Marion Brown

 

13 Comments
  • Fiona French
    Posted at 12:46h, 25 September Reply

    I am fully supportive of Marion Brown’s valiant efforts to bring the subject of prescribed drug dependence and withdrawal into the public and political domain. Having consumed a benzodiazepine and various antidepressants for 40 years, I find myself physically and cognitively disabled as a result of withdrawal. I have endured suffering beyond anything that I could ever possibly have imagined and have spent 3.5 years in bed.

    I consulted four GPs and two consultants. All denied that drug withdrawal was a factor or said they did not know what was wrong with me. A psychiatrist told me to “think of it as chronic fatigue syndrome”. Yet there is ample information about benzodiazepine withdrawal on the internet. In desperation I consulted a GP privately in Ireland who had no difficulty diagnosing my classic symptoms of benzodiazepine withdrawal. It was my first meaningful conversation with a doctor since being advised to withdraw from Nitrazepam. I have known since early 2014 what is wrong with me, despite having no medical training.

    A few weeks ago, a second neurological consultation finally resulted in an acknowledgment that my neurological symptoms are most likely due to the shock of coming off Nitrazepam. However, the neurologist then wrote in his letter to my GP that I had suffered from chronic fatigue syndrome for three years. This is factually incorrect. No doctor in Scotland has been prepared to have an open and honest discussion with me about the toxic effects of the drugs I have consumed for 40 years on the advice of my many doctors. I am now waiting to be referred to the Substance Misuse Service as I am assured by my Health Board that I will find the relevant expertise there. I would like to know which part of this is morally and ethically acceptable. The behaviour of my doctors over the past few years have served to cause me more distress than I could bear given the fragile state of my central nervous system. How can this ever be justified?

  • Greg Crowhurst
    Posted at 12:15h, 26 September Reply

    This is such a welcome article Marion. I have cared full time for my wife, who is diagnosed with very severe ME, for the last 25 years. The depth of physical suffering she undergoes is probably unimaginable to most people. Yet all this time, the influence of a powerful school of UK psychiatry, heavily promoting the myth that ME is a “somatoform disorder”, with the “medically unexplained symptoms”, best treated by CBT and GET, to cure “maladative sickness beliefs”, has denied her basic respect, investigation, treatment and any hope of a cure. The politics behind the neglect are complex; I have outlined some of them here: http://www.stonebird.co.uk

  • Alyne Duthie
    Posted at 01:49h, 28 September Reply

    I readily identify with the issues raised by Marion Brown regarding the diagnosis of Medically Unexplained Symptoms. Many of the side effects I experienced whilst taking antidepressants for over 30 years could easily be categorised under the heading MUS – abdominal pains, dry mouth, excessive fatigue sit familiarly alongside forgetfulness, sweating, photosensitivity, hives, constipation alternating with loose bowel movements, blurred vision and fluttering heartbeats, all of which plagued me during my time on antidepressants. Equally, Bodily Distress Syndrome could be a model for what I suffered coming off Venlafaxine and most especially the benzodiazepine, Diazepam. Dizziness, pains in the joints, concentration difficulties, impairment of memory, hyperventilation, regurgitation, nausea, hot and cold sweats are very familiar to me as withdrawal symptoms but I have had to deal with much, much more. Symptoms such as tinnitus, insomnia, excessive anxiety, anhedonia, agitation, rubber legs, sensitivities to noise, light, touch and smell, jerking movements, and most devastatingly, suicidal ideation.

    I have had one terrible time getting off antidepressants and benzodiazepines, something I was completely unprepared for and to add to my distress has been the attitude of the medical professionals I have consulted who will not accept my withdrawal problems have any direct connection with prescribed psychotropic drugs. I cannot express too strongly how important it is that patients’ voices be heard and side effects and withdrawal symptoms given full recognition for what they are. Coming off antidepressants and latterly benzodiazepines was my attempt to liberate myself from years of chronic ill health instead I came close to losing my life and my health is still adversely affected to this day. I would hope that by telling something of my story here GPs will question whether their patients are suffering from MUS or as is more likely the consequences of taking or withdrawing from their prescribed psychotropic medication.

  • Annie Codie
    Posted at 15:08h, 28 September Reply

    I am like Marion ,Fiona, and Alyne staggered that the Establishment and Powers that be still in 2017 seem to be in the dark RE The potential appalling side effects of taking and becoming chronically dependent on benzodiazepines and or anti-depressants The 6,000. plus words on the warning leaflet certainly lists extensive side effects. These side effects are quoted by Marion Brown above, where she highlights her alarm, which I share, over the four categories for BDS and Or MUS. As I know to my cost these symptoms, and more besides ,including genital numbing when taking anti-depressants are also prevalent when trying to taper or withdrawal from prescription drugs. For the last 5 years various GPs have suggested I come off especially diazepam but not one has suggested how to safely withdrawal or show any empathy when I expressed anxiety over coming off a medication I had been taking for over 30 years. One Newly qualified Dr said ‘You talk just like an addict.’, So feeling shamed, anxious scared and tearful 2 years ago I took to Dr Google. I found online support and was euphoric to realise the dizziness, the shaking, the dry mouth, the insomnia, the lapse of memory the lack of libido was not in my head but very much a somatic experience. More to the point I had symptoms similar to hundreds of others both in the Uk and further afield ( Benzo buddies Surviving Anti-depressants but two of the enormous information and online support available…….All peer led. Sadly no GP seemed interested in what I had to say RE Information I had found Online so I resolved to taper according to the advice I saw online…..Something called the Ashton Manual seemed a good starting point. Coming off diazepam in the last two years has been incredibly hard as I have been on them for over 30 years. Like wise I have been on Anti-depressants for 15 years. I cannot stress enough how devastating it is to realise that hardly anyone outside of the brave, heroic, informed online community seem to give a damn. about any of these serious issues which are causing heartbreak day in day out for thousands of people of all ages. Far too few people seem to have any urgency about the huge issue of Prescribed Drug Dependence. I too like Fiona French desperately would love a Dr to give me a hearing, reliable information that ensures my safety in withdrawal and above all hope that this 3o year nightmare will end. I live in Wales and totally welcome the Welsh Assembly petition. Prescribed drug dependence and withdrawal, as currently in Wales, a Country with a population of over 3 million, people, there are no facilities what so ever to inform, support and above all give hope to those stuck on or trying to come off medications which have appalling side effects and are extremely difficult to safely come off. I urge all medical practioners to ask some pertinent questions of people before assuming it is all in the head or BDS or MUS

  • P A W.
    Posted at 18:29h, 28 September Reply

    I thank Marion Brown for the issues she raises regarding prescribed dependence and the so called MUS, as I too can fully identify with the medical difficulties caused. I have almost 4 decades experience of these medications with their harmful side effects and symptoms. I have found and as others here have already clarified in their posts, most patients suffer such similar experiences and prescription history.and judgement While each story is unique, mine too is due to ongoing and distinct misunderstandings caused by the attitude of certain doctors, regarding what are medically listed and long recognised prescription side-effects. Over.36 years ago I was initially prescribed valium as a muscle relaxant for a specific neck injury. Unknown to me – as the listed side effects of my medication increased, so did prescribing. Over time and in trying to alleviate my increasing suffering (of what were the known side-effects of the repeated medication) – my GPs also prescribed c100 different medications, most by one GP, who boasted that he’d now tried me on every drug listed; he then recorded – nothing prescribed has ever helped and noone she’s been referred to has ever helped. My doctors insisted that I/my thinking was the problem and that I had a chemical imbalance, which would need treated for the rest of my life. Yet each new chemical prescribed had only ever added to the severity of my side-effect suffering. After the seizure in 2o09 I later discovered that psychiatric referral since the mid 80s stated that I was suffering the side effects of the medications and they should be withdrawn and stopped completely; also that I never had “true” anxiety or depression. Therefore my only problem was the medication. That advice and expertise had been repeatedly ignored. After 27 years of repeated yoyo prescribing, with dosages prescribed up and down, with courses on and off medication, all resulted in my becoming increasingly rigid and bedbound, somatic and in fact toxic. I had seemingly inexplicable physical symptoms, anxiety and insomnia. My GP was most adamant that I stop the medication completely, this time cold turkey and stay off; insisting Id been on it far too long and my reason for prescription was well healed and long passed. I was given no choice. Overall the long-terrm effects of taking this prescription were entirely bad and destructive for me, every aspect of my life and naturally had deeply effected my family too . I trusted my doctor and to get my life back I now clung to this repeated instruction. Muscle rigidity quickly eased and anxiety etc soon dissapated but after many months without any help or support and alarmed by the new and increasingly severe head pains and electric zaps, I learned through the internet these were withdrawal symptoms and I contacted the expert Prof C Heather Ashton. She kindly contacted my new GP who quickly informed her of my history and some of the other medications previously prescribed. Prof Ashton wrote and explained how the host of medications had only complicated the changes and damage caused to my brain, by the introduction and withdrawal method of each new medication. She also warned of the dangers of cold turkey seizures and sent information for both my GP and neurologist.. As my withdrawal symtoms became very much worse I went to hospital and suffered a massive and life-changing seizure event, causing a tear between my spinal cord and brainstem, with serious loss of CSF, complete paralysis and a locked-in-type-syndrome, also a constant and very distinct cycle since of progressing “sinister” deterioration. No doctors knew of nor recognised the possible physiological damage caused by benzodiazepines. Expert information presented by my family was dismissed and expert contact refused. While it was plain to see that suddenly and dramatically I was very obviously damaged and physically changed, the MUS were recorded as psychological. Doctors since insist it must all be anxiety and not the fault or consequence of benzodiazepines, but an unhealthy online obsession. I was sent home in a wheelchair 2 weeks later, unable to hold my head up or walk. Since the extensive seizure damage I’d been lying flat in the hospital’s electric bed unable to move and on occasion propped up or held, while it was changed and I was washed. I couldnt even swallow or talk properly and my vision was a field of either fireworks or blackness. I couldn’t cry or show any emotion. Insisting I must go home and behave, the clothes I’d worn in dropped to the ground as Id suddenly lost almost 3 stone weight. Since the seizure Id lost control of everything, every muscle particularly from the waist down and fluid poured from me. My husband managed to get me home and I “lived” downstairs in a recliner chair. I had to teach myself how to do everything ! My father said it was as if I had a massive stroke but with the added sudden and serious weight loss and the extreme tightness of tge wrinkled skin now covering my face and bones. To date neither the effects of Benzodiazepine dependence nor physiological harm have ever been addressed. Very evidently I suffered much damage and functional loss at that time. Nothing has ever worked /functioned or felt right since. Due to the sinister progressing deterioration Ive been admitted to hospital on 8 occasions since that seizure event with further episodes of worsening paralysis from the waist down. I have been left with significant physical and cognitlve disabilities and a constant hellish condition that has only deteriorated since. Athough I’ve had repeated written expert diagnosis of benzodiazepine damage and my neurologist has talked to me (&my husband & a friend) on numerous occasions of the damage caused by my previous benzodiazepine prescription, with its’ ongoing and obvious physical deterioration – to date and since that specific life-changing event, for over 8.6years the repeatedly recorded diagnosis is psychological. For almost 40 years doctors have kept repeating to me and my family “I dont know”. By refusing expertise and prefering to record the truthful facts as medically unexplained symptons, all must be psychological, therefore it appears my GP surgery continues to refuse any home visit to see me. They dont want to learn of my constant and increasing hellish suffering with its’ 8 .6 years year cycle of deterioration, nor the increasing weekly episodes of paralysis, etc. Not even about the 8 neurology admittances with significant stays, nor the increasingly painful effects following the neurologists blood patch in my spinal cord last September, to try and help /correct the established CSF problem. Nor why a 2nd blood patch was not allowed by a hospital 2nd opinion in March, as benzodiazepine damage was said to be the problem, but not recorded. With all the truthful facts now established It appears that all my suffering since that initial prescription with its side effects, have been medically induced. Specifically since that life-changing seizure event I have been very effectively medically abandoned and left without any proper or working diagnosis, help or support. Significant abnormalities on a SPECT scan, relating to.my dysfunctions and losses are also ignored. Physiological dependence and damage are still dismissed and ridiculed each time I present at hospital. Evidentally having a repeated psychological mis-diagnosis means that I continue to be left without any help or support from my doctor at all.

  • Ellie Jasper
    Posted at 01:24h, 30 September Reply

    This is probably not the correct forum to ask this question but I’m asking it anyway. I’ve was in very high doses of antipsychotics, antidepressants, mood stabilisers, benzodiazepines for over 20 years. Clozapine 575mg and Olanzapine 20mg plus benzos about once a month when in crisis to give the example of just one year. Largactel Aripiprazole Risperidone Venlafaxine Citalapram Prozac, I reckon you get the over medicated idea.

    About 2 or 2.5 years ago I started getting MUS not to bad at first but it down to titration off Aripiprazole and cold turkeying off Citalopram which I know was silly.

    Severe pain, complete stroke symptoms and knowledge of all 5 terms doctors use to describe psychosomatic conditions. I have had zero treatment and minimal tests but I’ve got really good at ignoring pain, putting on a brave face and trying my best. I have a positive forward looking disposition and have accepted that all illnesses have a psychosomatic element (stress lowers the immune system) and that I’ll probably never be diagnosed with anything phyisical even if my symptoms are physical not mental in origin.

    So just for curiosity really although I now suspect the answer, it’s not psychosomatic it’s all the high doses of multiple neuroleptic medications isn’t it?

  • susanne stevens
    Posted at 17:55h, 30 September Reply

    Since Marion wrote this article the RxISK team has decided not to wait any longer for the medial establishment to actually do something to find a cure for the horrendous adverse effects of anti depressant s which effects so many people who took them in good faith – that trust has been betrayed – most were not given honest information about the possible adverse effects and did not give informed consent – they are ridiculed and disbelieved by medics who are still uninformed about these drugs. There is no need to waste time and funding on collecting more data – it available already – the time has come to put funds into finding a cure for those who have been harmed, Hopefully their time will come sooner than for other groups who are now take collective action for the known harms of other prescription drugs

    • Ellie Jasper
      Posted at 03:46h, 01 October Reply

      The way I have been treated by the medical establishment due to the symptoms caused by past psychiatric medications does constitute abuse. I won’t go into details here but I’m very lucky and extremely glad to still be alive.
      The reason I’m replying is to ask if anyone can provide me with URL links to citable resources I can use as evidence of harm these drugs do. Any suggestions on a legal front would also be greatly appreciated. I have a meeting with 2 senior managers of my MH Trust to discuss my complaints. Unreasonable and worrying restrictions have suddenly been put in place for this meeting. If I’m allowed to still have the meeting I need evidence-based information to use in my defense.
      I’d greatly appreciate any more help that you can provide.
      I especially like to thank Marrion Brown for writing this article, it’s provided me with hope and reassurance that I’m not mentally disordered and not alone. Thank you

  • Henn
    Posted at 09:09h, 01 October Reply

    Since tapering off antidepressant I used for a decade my life has been a nightmare. I developed insomnia I has never ever had as bad which I was prescribed benzos for too long time. When I stopped them, the nightmare began. Doctor stopped benzos CT and prescribed more drugs for sleep. I developed anxiety and restlessness (akathisia) so bad, I wanted to go to psych ward. My insomnia got even worse after benzos. There I was polydrugged with every class of psych drugs and started to have so many weird somatic symptoms I have never ever experienced. I was denied that my condition was due to drugs For two years I was in polypharmacy hell, deteriorating. My dose was upped when I felt worse, some drugs were stopped too fast, new drugs were started and I was given taking benzos every single day to be able to fall asleep and one point I was prescribed them to take them three times a day. I became dependent on benzos..My insomnia was really bad.

    I knew I can’t continue taking the drugs because I felt miserable taking them. I stopped them. What I only use now is small dose of benzo which I am tapering off taking smaller and smaller dose. It is really difficult because I can’t fall asleep without a benzo. At all. But I hope there will be a day, I am benzo free and sleep returns.

    Many symptoms I was prescribed drugs for went away when I stopped polypharmacy. But I have been really sick after taking the drugs. I am left with symptoms that mimic chronic fatigue syndrome. I lost my ability to work. Before all of this I had work I loved.

    This is list of symptoms I struggle with every single day or often:
    – brain fog, memory problems
    – intolerance to exercise. If I exercise too much or do things to much I am gonna be bed bound and exhausted. My life is now all about fearing I overdo things that leads me to be bed bound and to have really bad fatigue.
    – headaches, migraines (I did not know what was migraine before) I was not able to see neurologist I believe because of my headaches are thought to be depression or mental condition. My GP tried to get me to neurologist in public healthcare)
    – burning sensations in my body and head. Very weird. Came after benzos.
    – paresthesia
    – polyuria that keeps my awake
    – inner restlessness, restless legs syndrome that keeps me awake (never had before)
    – sensitivity to sounds, light
    – temperature dysregulation
    – worst anxiety I have ever experienced
    – insomnia, waking up multiple times a night feeling tired in the morning
    – sexual dysfunction
    – pain all over my body
    – dizziness

    When I say that I believe my symptoms are due to meds, I am not believed in most of the cases.

  • Marion Brown
    Posted at 10:29h, 01 October Reply

    Thank you so much for writing these comments.
    I am aware just how desperate affected people and families are – and that the ‘patient confidentiality’ and ‘clinical judgement’ (and of course Doctors’ fear of being sued – as mentioned in Dr Zoe Norris’s View ‘Practicing in a climate of fear’ http://gpview.co.uk/practicing-in-a-climate-of-fear/) are providing apparently insurmountable barriers to negotiate.

    Thank you very much to Greg Crowhurst for providing the Stonebird link. It is clear that the damage from the prescribed drugs results in ME/CFS neurological and cellular damage and we have much to share.
    Ellie Jasper – it is hard to know where to start! Peter Breggin’s website is here – with much more information
    https://breggin.com/rational-principles-of-psychopharmacology/
    Joanna Moncrieff is based in uk : https://joannamoncrieff.com/
    The Council for evidence-based Psychiatry has published ‘Unrecognised Facts’ http://cepuk.org/unrecognised-facts/
    Also Rxisk mentioned above by Suzanne Stevens: https://rxisk.org/

    That is for ‘starters’!

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