In response to several requests for a bit of a discussion on Fibromyalgia Syndrome, (hereby referred to as FMS) I would like this opportunity to acknowledge Mardy Ross, a fellow Occupational Therapy Practitioner, and individual who also has experience with both ME/CFS and FMS, who has collaborated with me on this post. I have also added a link below to a website run by Mardy, named Lumigrate.com, which may be of interest to some people, and aims to equip individuals with the knowledge they require to be an active and central figure of their medical team. Us Occupational Therapists tend to be strong proponents of education and individual empowerment, regardless of whether we hail from Colorado, USA, or Dunedin New Zealand :)
This post is going to be a brief overview of FMS signs, symptoms, but this blog will return to FMS from time to time, most specifically in the near future to look at the potential impact of the recent XMRV findings by the Whittemore Peterson Institute, and how these may impact FMS, and to look at management strategies suggested by different FMS advocacy and education groups.
It is interesting to both compare and contrast FMS with ME/CFS as it is a comorbid disease that affects many individuals with ME/CFS, but also because there are a number of symptom similarities. There are different schools of thought as to whether FMS and ME/CFS are separate illnesses, however, this blog is going to address FMS as a separate condition to ME/CFS, with a different set of signs and symptoms. It would be helpful at this point to refer back to the post dated 03 January 2010 to the ME/CFS diagnostic criteria, as to rewrite them here may cause some confusion.
For the purposes of continuity, this post will refer to the Canadian Consensus Document of Clinical Guidelines for FMS (http://sacfs.asn.au/download/consensus_overview_fms.pdf ) to list some of the signs and symptoms ascribed to FMS. The reason that this post is referring to the Canadian Consensus Document of Clinical Guidelines for FMS, is that it provides an in depth and comprehensive understanding of Fibromyalgia which would be very beneficial for people who live despite FMS, as well as practitioners.
Some of the criteria for a diagnosis of FMS is adopted from the American College of Rheumatology 1990 Criteria, which can be found here: http://www.rheumatology.org/publications/classification/fibromyalgia/fibro.asp
Remember again, a sign is the objective, observable or measurable evidence of disease, and a symptom is the subjective experience of the individual.
Criteria for a diagnosis of FMS:
1. It is compulsory that there is a history of widespread pain. Widespread pain is 'global' pain which has occurred for no less than three months. Global pain means bilateral - both sides of the body and above and below the waistline, and the occurrence of what is called 'axial skeletal' pain. (your axial skeleton is your upper and lower spine). The pain may be burning, throbbing, sharp, deep, 'aching bones', shooting, searing or 'feeling bruised', cramping, stiffness, and headaches.
2. It is compulsory that there is pain on 'palpation' (when the physician applies pressure) at 11 or more of 18 tender point sites:
- The Occiput (2 sites, left and right): at the base of the back of your head - just above and to the outside of where the top of the spine meets the skull
- Low cervical (2 sites, left and right): towards the side of the neck in relation to the spine
Trapezius (2 sites, left and right): on each side of the spine about midway down the scapular (shoulder blade)
- Supraspinatus (2 sites, left and right): at approximately the mid point above the scapula
Second rib (2 sites, left and right): Just below the clavicle (collarbone) at approximately the mid point
- Lateral epicondyle (2 sites, left and right): the bony prominence of the wrist
- Gluteal (2 sites, left and right): In the upper and outer areas of the bottom
- Greater trochanter (2 sites, left and right): the bony prominence of the hip
- Knee (2 sites, left and right): On the inner side of the knee
Please refer to page 2 of the Canadian Consensus Document of Clinical Guidelines for FMS (http://sacfs.asn.au/download/consensus_overview_fms.pdf ) for a diagram and further details of these sites.
3. Additional signs and symptoms which often present in FMS, but it is rare that they are ALL present.
- There may be a presence of neurological manifestations; dysfunction involving muscles, asymmetry of musculo-skeletal structure, which may affect balance or gait; abnormal muscle twitching, muscular cramping, muscle weakness. Sensory overload phenomena also often occur
- There is often a presence of neurocognitive manifestations; impaired concentration, impaired short term memory, difficulty multitasking, or easy distractibility.
There is a persistent, REACTIVE fatigue, which may impair physical and mental stamina, which often interferes with a patient’s ability to exercise.
- Many people with FMS experience non refreshing sleep, awaking during the night, insomnia, restless leg syndrome.
- There are also autonomic and/or neuroendocrine manifestations, such as cardiac arrhythmias, hypotension, vertigo, temperature instability and/or intolerance, respiratory disturbances, intestinal and bladder motility disturbances with or without irritable bowel or bladder dysfunction, dysmenorrhea, loss of adaptability and tolerance for stress, emotional flattening, lability, and/or reactive depression.
So what do we do with this information? As suggested in earlier blog entries, print off copies of this document and familiarise yourself with the parts that you think may affect you. As with ME/CFS, and all other diseases and disabilities, you are the key person in your medical team. There may also be a requirement for you to be a source of education to the medical professionals whom you have 'nominated' to work with you towards maintaining a level of health and wellbeing. As much as possible, try not to be a passive observer in your health management. Take a copy of this document with you next time you visit your doctor or medical professional and ask for an opportunity to discuss it. Ask your doctor to support you to draw up a plan of how you aim to manage this disease, with reference to some of the different areas discussed in the Canadian Consensus Document. This will provide you with a level of 'control' over symptom management and treatment, and allows you the opportunity to coordinate the different interventions you may choose to use, such as homeopathy or natropathy, physical therapy, orthodox medicine, and even dental care.
Please feel free to contact me if you have any suggestions, if you have something you want to see added to this blog, or, of course, changed. I am also looking for other people who may wish to write a bit here also (remember, all of us have different perspectives, expeiences or things we are interested in learning more about - unfortunatly, I don't always have the answers or the information!!). Also, share this blog, or the information within it (provided you reference resources appropriately). The more we can continue to educate ouselves and unite as a group of individuals promoting awareness of CFS/ME (and other invisible diseases), the closer we get to appropriate healthcare management and treatment.