From Heart Sink to Stout-Heartedness Ten top tips from the Fibromyalgia Clinic. Jeremy Jones The Fibromyalgia Doctor. Stout- Heartedness.

Transcription

1 From Heart Sink to Stout-Heartedness Ten top tips from the Fibromyalgia Clinic Jeremy Jones The Fibromyalgia Doctor Heart Sink Stout- Heartedness

2 TENDER POINTS OF THE 1990 AMERICAN COLLEGE OF RHEUMATOLOGY CRITERIA FOR THE CLASSIFICATION OF FIBROMYALGIA 1. History of widespread pain - present in all 4 quadrants of body. 2. Pain in 11of 18 tender point sites on digital palpation performed with an approximate force of 4Kg. 3. Aches/pains steady or intermittent for at least 3 months. (Wolfe et al, 1990)

3 Epidemiology 4% female population; less than 1% male Family doctor 8% Specialist practice 10% Hospital ward 20% Rheumatology clinic 30% Neumann L, Buskila D. Curr Pain Headache Rep 2003;7: Wolfe F, Ross K, Anderson J, et al. Arthritis Rheum 1995;38: Carmona L, Ballina J, Gabriel R, et al. Ann Rheum Dis 2001;60: White KP, Speechley M, Harth M, et al. J Rheumatol 1999;26:

4 FMS in rheumatic and other disease 20% RA patients have FMS 50% Lupus patients have FMS 50% Sjorgrens syndrome have FMS 30% HIV pts have FMS 27% Inflammatory bowel disease pts have FMS Littlejohn G BSR 2010

5 The typical patient with FMS Hosts of symptoms; Come with lists Smiles are rare; anguish and tears are frequent Talk for long periods about themselves Severely disturbed sleep; can t sleep Fatigue Fibro fog Long history aches and pains, diffuse tenderness Tender spots Side effects ++++ from drugs Pain behaviours common Sensitive, caring, perfectionist personality Previous psycho/physical trauma

6 Why the FMS sufferer causes heart sink Almost invariably cries The pain is often a means of imparting their distress See my distress/pain/anguish Give elaborate descriptions of their complaints* Pt attempt to control the consultation by means of lengthy but vague descriptions of their somatic complaints* The patient with FMS uses dramatic language to say how dire all their symptoms, there are no appropriate facial expressions** *IASP Clinical Update June 2010 * *Kirsch et al Psychopatholgy ; 203

7 Why the FMS sufferer causes heart sink Masters at negation *** (Cont) The resulting difficult doctor/patients relationship is said to be diagnostic** This difficult interaction pattern makes pt seem isolated from their doctors who they find difficult to convince they have a real disease* Those driven by the medical model respond in a somatic way (ie blood test, scan, physio, referral to other provider) *IASP Clinical Update June 2010 * *Kirsch et al Psychopathology ; 203. ***Ring et al. BMJ 2004; 328:

8 Heart Sink Stout Heartedness

9 Ten top tips 1. FMS is not a waste paper basket diagnosis 2. Diagnosing FMS; a cross road in your patient s life 3. I have a little list. 4. The Fibromyalgic personality 5. Sleep is of the essence 6. Symptoms? You name it - they ve got it! 7. The six blind professors 8. Response to pills; placebo or nocebo? 9. How to explain FMS 10. Do you want to change?

10 Ten top tips 1. Fibromyalgia is not a wastepaper basket diagnosis

11 Sometimes fibromyalgia is a wastepaper basket for the diagnostically destitute clinician

12 Why fibromyalgia becomes a wastepaper basket diagnosis Lack of knowledge of the condition Lack of time When the medical model fails to explain musculoskeletal symptoms the reflex response is to call it fibromyalgia The rheumatology patient is crying; therefore it must be fibromyalgia Difficulty sorting out soft symptoms like; disturbed sleep muscle pains fatigue or lots of different symptoms Need to explain unexplainiable symptoms

13 Not a wastepaper basket Sleep Apnoea Cervical myelopathy Rheumatoid arthritis Polymyalgia rheumatica Polymyositis Glycogen storage diseases Mitochondrial myopathies Myotonia dystrophica Motor neurone disease Multiple sclerosis Lyme disease Ankylosing spondylitis Autoimmune thyroiditis Depression Malingering

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16 Plea When dealing with fibromyalgia use your waste paper basket as a receptacle for the patient s tissues; not for your dodgy diagnoses YES NO

17 Ten Top Tips 2. Diagnosing Fibromyalgia; a cross road in your patient s life.

18 Diagnosing FMS; a crossroads in life SICK ROLE BAD LIFE ON BENEFIT YES INVALIDITY Aches and pains FMS? GOOD EXPLANATION CERTAINTY BAD UNCERTAINTY NO GOOD SAVED FROM LIFE OF GLOOM AND MISETY

19 2. Diagnosing Fibromyalgia; a cross road in your patient s life. Crossroads The diagnosis carries a stigma When seeing other doctors With benefits agencies With insurance companies In society Patient will look on internet and meet all the bitter unhappy doom and gloom merchants and be infected by their victimhood and misinformation etc

20 Ten top tips 3. I have a little list

21 3. I have a little list Many patients with FMS bring a list of all their symptoms This is strong diagnostic evidence of FMS Often carefully typed. Long list of often catastrophic symptoms delivered in a matter of fact way Record is 65 different complaints!

22 3. I have a little list Why? Want/need for every single thing to be heard. Cognitive dysfunction What to do? Be careful to be seen reading everything Ask the odd question File carefully in the notes Result The patient will feel she has been heard You have been saved a lot of documentation

23 Ten top tips 4. The fibromyalgia personality

24 4. The fibromyalgia personality Very caring Creative Pathological perfectionism* Action proneness* Over active life style* *(Van Houdenhove et al, 2001)

25 The Fibromyalgia Personality Over-active Poor personal boundaries Perfectionists Sensitive FMS Personality Overresponsibility Caring Expressive Creative/ imaginative Kirkham A PhD thesis 2010

26 4. The fibromyalgic personality Almost every FMS patient has been the subject of a traumatic event (s)

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30 Ten top tips 5. Sleep is of the essence in FMS

31 5. Sleep is of the essence in FMS Sleep laboratory Restorative REM sleep Loss of 24 hour clock Moldofsky et al. Psychosom Med 1975;37:341-51; Lentz et al. J Rheumatol 1999;26(7): : Older et al. J Rheumatol 1998;25(6):1180-6; Onen et al. J Sleep Res 2001;10(1):35-42; Korszun. Curr Rheumatol Rep 2000 Apr;2(2):124-30

32 5. Sleep is of the essence in FMS Needs structured day and night Save sleep for the night Amitriptyline Works! but only for sleep Take THREE hours before retiring

33 Ten top tips 6. Symptoms? You name it - they ve got it!

34 6. Symptoms? You name it, they ve got it! Multitude of symptoms Symptoms check list +/- 90 out of 20 Why? Low pain threshold Loss of inhibition of peripheral afferent input

35 Pain studies in FMS compared with controls (after Gracely et al Arthritis and Rheumatism May 2004) Roughly! red is FMS; green is subjective pain control and yellow are overlapping areas.

36 Main fmri abnormality is in inhibitory area of brain We all have continuous sensory impulses from the periphery flowing up to our brains These are normally inhibited and so are subconscious In FMS the inhibitory area is not working So all these impulses reach consciousness Hence all the complaints Hence all the side effects from drugs Schweinhardt et al. Fibromyalgia: a disorder of the brain? Neuroscientist 2008; 14: 415

37 6. Symptoms? You name it - they ve got it! Thus, FMS is An abnormality of central pain processing This explains: Why people with FMS have so many symptoms Why it is not worth investigating them all Why people with FMS have so many side effects with tablets

38 Ten top tips 7. The six blind professors

39 7. The six blind professors

40 7.The six blind professors Rheumatologist Fibromyalgia Neurologist Tension headache Gastroenterologist Irritable bowel ENT TMJ dysfunction Cardiologist atypical chest pain Gynaecologist pelvic pain Orthopod OA hip/knee Psychiatrist PTSD, depression Resp. Physician Hyperventilation syndrome

41 Ten Top Tips 8. Response to pills; placebo or nocebo?

42 8. Response to pillsplacebo or nocebo? People with FMS are very sensitive to side effects of pills. Reduced inhibition of afferent messages Fear of disengagement of their doctor Exhibition of their distress

43 REVIEW ARTICLE; Nocebo in fibromyalgia: meta-analysis of placebocontrolled clinical trials and implications for practice. D. D. Mitsikostasa, et al European Journal of Neurology 2011 doi: /j RCT of drugs in pts with FMS with placebo arm 2026 patients in total 67% reported at least one side effect 10% discontinued trial because of side effects There was no difference in side effects and withdrawals when placebo arms were compared with patients in the active arms.

44 8. Response to pillsplacebo or nocebo? Drugs in FMS Trials have numerous drop outs Show weak effect for duloxetine, pregabalin, gabapentin Trials show moderate effect for amitryptyline No beneficial effect for opioids- only side effects If the pain is indeed distress, it would not respond to analgesia Drugs don t really work Biopsychosocial approach much logical

45 Ten top tips 9. How to explain FMS

46 9. How to explain FMS Sleep experiments show importance of sleep Low pain threshold experiment fmri Experiments explain multiple symptoms Sensitive caring personality can t deal with traumatic event (s) Perfectionism mean guilt if everything not done Thousands of people have it It is not a mystery

47 10. Do you want to change? NO Many people with FMS are happy or stuck in their life situation; sick role, benefit trapped. They say they live one day at a time and have no long term goals Attempts at rehab will be futile

48 10. Do you want to change? YES Explain what has happened (no mystery) Self management Talk of goals for future Bereave the old you. Allow a week or so to think about what has been said

49 Hoping to regain premorbid personality Premorbid persona TIME Change of status Change of identity Change of lifestyle Post-morbid persona future Values Beliefs Capabilities Identity Provoking incident New values New Beliefs New capabilities New identity

50 10. Do you want to change? Suggest Rehab plan which might include: Dealing with issues, Lifestyle Sleep/Structure to day/week Increase activity physically, mentally and socially. Goals/plans for future

51 Ten top tips 1. FMS is not a waste paper basket diagnosis 2. Diagnosing FMS; a cross road in your patient s life 3. I have a little list. 4. The Fibromyalgic personality 5. Sleep is of the essence 6. Symptoms? You name it - they ve got it! 7. The six blind professors 8. Response to pills; placebo or nocebo? 9. How to explain FMS 10. Do you want to change?

52 Stout Heart Sink Hearted