REMEDY : BNSSG referral pathways

Fibromyalgia

Checked: 14-11-2018 by vicky.ryan Next Review: 24-10-2019

Overview

Fibromyalgia is responsible for 25% referrals to rheumatology clinics locally. In addition 18% of referrals to NBT pain clinic are for fibromyalgia.

Patients are often passed from specialist to specialist, undergoing exhaustive investigations, prescriptions of multiple drugs, delays in diagnosis, increasing disability and increased healthcare resource utilization.

One study shows fibromyalgia may take > 2 years to diagnose with patients seeing on average 3.7 different specialists

In the majority of cases a diagnosis of fibromyalgia can be made in primary care using self help and community services (see sections below). GPs sometimes feel that they have to get a second opinion to rubber stamp the diagnosis but local consultants feel that this is not necessary unless there are red flags. The rheumatology departments no longer have access to specialist physiotherapy or psychological therapy for patients with Fibromyalgia.

Local rheumatology consultants advise that they get the following types of referrals from GPs:

1. 'This looks like fibromyalgia. Bloods and xrays are all normal and there is no synovitis on examination but we’d like the diagnosis to be confirmed by rheumatology.'

2. 'This patient has had fibromyalgia diagnosed before but is struggling, please can you see and advise on further management.'

3. 'We are concerned about an inflammatory arthritis as there are some red flags, although fibromyalgia could be an alternative diagnosis, so would like this checked by rheumatology.' 

4. 'The patient has high levels of distress, is unaccepting of the diagnosis, needs time and a second opinion.'

Patients in groups 1 or 2 could be safely managed in primary care or referred directly to a pain self- management programme. Patients in group 3 where there are red flags or that could be inflammatory arthritis should be referred to rheumatology, as well as patients in group 4 where there is significant patient (and GP!) distress.  

Diagnosis

History

Local specialists advise the use of a diagnostic tool such as the American College Of Rheumatology diagnostic criteria for fibromyalgia.They are happy for a diagnosis to be made in primary care.

This Fibromyalgia questionnaire can also be used to aid diagnosis.

 At least 3 months of:

  • Very widespread pain (usually above and below the waist, and on both sides of the body, as well as in the spine)
  • Waking unrefreshed
  • Cognitive symptoms ‘brain fog’
  • Many other somatic symptoms including irritable bowel, headaches, dizziness, dyspepsia, urinary symptoms, insomnia, numbness and tingling.
  • There is often significant psychological distress, low mood, pain behaviour, crying during consultation, and a dramatic reduction in activity. Symptoms are often worse with stress, and sleep is frequently disturbed.

Examination

At the first appointment this is usually to try and assess for joint inflammation/synovitis, any muscle weakness and any systems dependent on red flags.

Investigation

Investigations are usually normal, and are carried out to exclude other potential causes of pain and fatigue. There will shortly be a panel on ICE with some guidance.

Minimal blood tests:

  • FBC, ESR, CRP, U&Es, LFTs, Calcium, CK, TFTs, coeliac screen, HbA1C, Vit D

Bloods to consider depending on Hx:

  • ANA (for lupus), anti-CCP (for RA), rheumatoid factor: if you suspect inflammatory arthritis, but this is mostly on history and joint inflammation signs, neither test is diagnostic.
  • HLA-B27 (if suspect ankylosing spondylitis, but not diagnostic)
  • Myeloma screen (if over 50)
  • B12 if suspect neuropathy.
  • Lyme (note there is a lot of controversy about chronic Lyme disease).

 

If you think your patient may fulfil the FMS criteria, consider giving them this diagnostic sheet to fill in (link to be added) and bring back to the next appointment to help you with diagnosis, and refer them to the Arthritis Research UK  Fibromyalgia booklet for patients to see if they feel the diagnosis fits their symptoms.

Other diagnoses to consider:

Widespread osteoarthritis

Joint hypermobility

Inflammatory Arthritis

Endocrine (diabetes, thyroid, hyperparathyroid)

Systemic vasculitis

Myopathies

Multiple sclerosis

Myasthenia gravis

Motor neurone disease

Connective Tissue Disorders, eg Lupus - Lupus is a disease which can present in many different ways, rarely do two people have exactly the same symptoms. Common symptoms of lupus include:

  • Arthralgia – affecting two or more joints, causing stiffness and pain
  • Extreme fatigue/feeling weak
  • Malar (butterfly) rash over the cheeks – often photosensitive, (though a photosensitive rash may occur anywhere exposed to sunlight)
  • Oral/nasal ulcers
  • Hair loss
  • Flu-like symptoms and/or night sweats
  • Inflammation of the tissues covering the internal organs (serositis) with associated chest and/or abdominal pain
  • Haematological disorders including anaemia
  • Kidney problems, often first seen as proteinuria
  • Seizures, mental illness or other cerebral problems
  • Headaches, migraine 

 

Giant Cell Arteritis (rare under the age of 50yrs). Symptoms include:

  • Headaches – sudden or gradual on one or both sides, mainly at the temples
  • Tenderness of the scalp area over the temples
  • Blood vessels at the temples may look or feel prominent
  • Pain in the jaw or tongue when chewing or talking
  • Blurred or double vision or temporary sudden loss of vision
  • People may also experience:
  • Fatigue and/or depression
  • Night sweats and/or fever
  • Loss of appetite and/or weights loss

 

Polymyalgia Rheumatica (rare under the age of 50yrs) symptoms include:

  • Stiffness, pain, aching, and tenderness in the
  • muscles around the shoulders, pelvis, and neck
  • Worse early in the morning but easing during the day
  • Difficulty getting out of bed, reaching and rising
  • Inflammation and swelling in other areas, i.e. tendons, hands, feet, and joints
  • Fatigue and/or depression
  • Sweats and/or fever
  • Loss of appetite and/or weight loss

 

Scleroderma - common symptoms of scleroderma include: 

  • Hardened or thickened skin that looks shiny and smooth. It’s most common on the hands and face
  • Cold fingers or toes that turn blue, white or red (Raynaud’s phenomenon).
  • Ulcers or sores on the fingertips
  • Puffy, swollen or painful fingers and/or toes
  • Painful or swollen joints
  • Muscle weakness and fatigue

At follow up appointment:

  • Patient feels the diagnosis fits?
  • Normal bloods?
  • Normal joints?
  • Normal neurological exam?
  • No red flags?Then you can safely diagnose fibromyalgia and do not need to refer to rheumatology. If they develop any red flag symptoms in the future then diagnosis can be reconsidered. Management options are given below.

Red Flags

The ACR criteria list the following red flags:

  • Abnormal neurological signs present (including muscle abnormalities) (eg proximal muscle weakness may indicate myositis)
  • Visual disturbance/change (?temporal arteritis with headache).
  • Swollen joints (synovitis: a boggy feeling around the joints)
  • MTP/MCP joint tenderness (or pain on squeeze test)
  • Morning joint stiffness (lasting over 30 minutes) (This is age-related: only 10 minutes of early morning stiffness is abnormal in a 20 year old, for example)
  • Unexplained rise in inflammatory markers (ESR, CRP)
  • Unexplained blood/protein on urine dipstick
  • Unintentional Weight loss
  • Fever
  • Lymphadenopathy
  • Recent onset Raynaud’s phenomenon
  • Skin rashes (eg butterfly rash of lupus, psoriatic plaques)
  • Dry eyes and mouth (Sjogrens?)

Management - evidence base

The EULAR revised recommendations for the management of fibromyalgia 2016 give comprehensive guidelines and are a useful review of the evidence base for management strategies both non-pharmacological and pharmacological.

Optimal management requires prompt diagnosis and consistent messages about function and psychosocial aspects of pain. Over investigation or referral should be avoided if possible. Initial management should focus on self help and non- pharmacological therapies, particularly graded exercise program, before considering other treatments such as CBT or medication.

Non-Pharmacological Therapies:

  • Aerobic and strengthening exercise - strong evidence for improvement in pain and function.

  • Cognitive behavioural therapies - weak evidence for improvement in pain and disability.

  • Acupuncture - weak evidence for improvement in pain.

  • Hydrotherapy - weak evidence for improvement in pain.

  • Meditative movement therapies (e.g yoga, tai chi, qigong) and mindfulness based stress reduction - weak evidence for improvement in sleep and fatigue.

Pharmacological Therapies  (Please note - local pain teams are now only advising use of amitriptyline in fibromyalgia and that other medications should be avoided):

  • Amitriptyline -weak evidence for improvement in pain and fatigue at low dose - (Local clinicians suggest start at 10mg at 8pm, and titrate up every 2 weeks to a maximum of 50mg daily. The aim is a full, refreshing night’s sleep, with no hang-over effect. If Amitriptyline is too sedating, Nortriptyline (10-50mg) or Lofepramine (70mg) are alternatives to try).

  • Duloxetine - weak evidence for improvement of pain - at doses of 60-120mg.

  • Tramadol - weak evidence for improvement in pain (avoid if possible).

  • Pregabalin - weak evidence for improvement of pain and fatigue.

Pharmacological therapies not currently recommended due to lack of evidence for and /or potential harm:

  • NSAIDs (although local clinicians advise that topical NSAID gel can be tried)

  • Gabapentin (further research needed)

  • Corticosteroids

  • Cannabinoids

  • Opiates

  • Anti-psychotics

  • Capsaicin

  • Sodium oxybate

Management - Self Help

Patients should be encouraged to look at self help to manage symptoms.

GPs are advised to print off and provide the locally produced Patient leaflet for people with Fibromyalgia when they diagnose a patient. Feedback from patient groups, highlighted the importance of self-management for fibromyalgia and agreed that having the information contained in this leaflet would have really helped when they were first diagnosed.

Arthritis Research UK produce a Fibromyalgia booklet for patients.

The NHS choices website has patient information on management of chronic pain.

The Pain Toolkit website has downloadable information and links to courses.

Local pain specialists recommend a website developed in Plymouth called Body Reprogramming which some patients may find useful. It has useful links to videos and a patient guide. (please note that the body reprogramming course is not currently available locally).

Fibromyalgia support groups are available locally and nationally and you can find a list here.

Further ideas for local self help are available here.

Referral Guidance

Referral should be reserved for patients who have red flags or when self help or other management options in primary care have been completed.  A fibromyalgia pathway is currently under development and will focus on setting up group patient self management sessions.

At present the options for referral include the following:

  • Rheumatology - as mentioned in the introduction, rheumatology referrals should be reserved for patients with possible inflammatory arthritis or other red flags and should be sent via e-referral. Referrals will be triaged by the Bristol Referral Service and may be returned if referral criteria are not met.

  • Exercise on Referral - click on link to download referral form.

  • Talking therapies (CBT) can be helpful for patients particularly if there is coexisting anxiety/ depression. See link to local IAPT services.

  • Fibromyalgia Self Management Programme at NBT - direct referrals can be made to the clinical psychologists. Please note that courses run for 12 weeks during working hours and therefore patients should be aware of this commitment required prior to referral and be ready to engage in a  rehabilative approach. See link for full referral criteria. Send referrals to:

    Dr N Ambler
    The Lodge, Cossham Hospital,
    Kingswood, Bristol BS15 1LF.

 

  • Fibromyalgia Self-management Programme (FSMP) run at RUH Bath and they accept referrals through E-Referral or direct from GP. The FSMP is intended for patients who have a diagnosis of fibromyalgia and are struggling to manage the condition. Patients attending the programme must be willing to make personal health behaviour and lifestyle changes, as part of a personal shift towards self-management. The programme is not appropriate for patients with highly complex needs who require significant psychological support. Where this is identified during assessment, patients will be advised of more appropriate services to meet their individual needs.

 

  • Pain Clinic - referrals can be made to UBHT or NBT pain clinics via e-referral but please check pain guidelines and use their referral proforma.  Referrals may be triaged by the BNSSG Referral Service and may be returned if referral criteria are not met.