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August 21 ME-CFS compared to FMME-CFS compared to FM A simple way of comparing the reality of two illnesses is that with ME-CFS, fatigue is the primary symptom, and with FM, pain is the primary symptom. Other than this difference in what is the main symptom, symptoms tend to be the same (although they do of course vary from patient to patient). Many people will argue that the two illnesses are very different and part of their argument is often that while ME is classified by the WHO as a “Disease of the “Nervous system. Other disorders of brain”1, FM is classified as an “Other soft tissue disorders, not elsewhere classified. Rheumatism, unspecified.”1 2 However, this is out of date, because: 1. Research in recent years has proved the neurological changes present in Fibromyalgia patients. It is clear that FM is not simply a musculoskeletal or pain disorder, but a disorder of some kind of the central nervous system3 4 5. It isn’t a condition in the joints or connective tissue, therefore it is not a rheumatological condition at all. 2. The WHO considers ME to be benign Myalgic Encephalomyelitis1, the original meaning of ME and a condition with definite inflammation in the brain or spinal cord, following a viral infection, that can occur in epidemics. ME is now more often used to stand for Myalgic Encephalopathy, the inference to inflammation having been taken out when it became clear that many people suffering from ME do not have any sign of this inflammation, whether or not they may have possibly had inflammation at one time.6 7 8 FM and CFS (now known as ME-CFS) are considered by some experts to both be types of Central Sensitivity Syndromes34. Although it is ME that is officially known as a neurological disease, there has been more research done into the actual neurological changes in people with FM, not ME, especially in recent years. It has been found that people with FM have: · accelerated Grey Brain Matter loss.9. · reduced levels of biogenic amines4 5, including serotonin, norepinephrine and dopamine7. · increased concentrations of excitatory neurotransmitters, including substance P, the chemical which transmits pain signals.4 13 14 · dysregulation of the hypothalamic-pituitary-adrenal axis.4 5 · abnormal blood flow within the brain.11 12 · and that there is a subset of people with Fibromyalgia who have a growth hormone deficiency. 5 15 Although the causes of FM and ME/CFS may be different, certainly between subsets of the illnesses, how they present in patients is very similar. When you compare lists of symptoms for both illnesses, the similarities are obvious. ME-CFS symptoms include 16: · Fatigue. · Pain, including flu-like aching and nerve pain. · Sleep disturbances, including non-restorative, unrefreshing sleep, insomnia, sleep reversal and hypersomnia. · Cognitive difficulties, including reduced attention span, memory problems, trouble with words and speaking, poor concentration and mood changes, including irritability. · Irritable Bowel Syndrome. · Headaches and migraines. · Hypersensitivity to light and sound, among other stimuli. · Autonomic dysfunction, which includes many of the symptoms mentioned here, but also includes the “classic” Dysautonomia symptoms of NCS (Neuro-Cardiogenic Syncope – fainting) and POTS (Postural Orthostatic Syndrome – when your heart races when you stand up, among other times). · Heart problems. · Loss of co-ordination. · Allergies and intolerances. · Poor temperature regulation, including chills and hot sweats for no reason. · Exercise intolerance, including a delayed reaction to overdoing it, muscle weakness and poor stamina, unrelated to fitness levels. · Susceptibility to infection, especially viral, and slow recovery from illness or injury. · Swollen glands, sore throat and nasal drip. · Muscle twitches and tremors. · Anxiety and depression. FM symptoms include 17 18: · Pain. This can be joint, muscle or nerve pain. Achiness similar to that you get with flu is a classic symptom. Hypersensitivity to pain stimuli is part of this – what would be merely uncomfortable to a healthy person is agony to a person with FM. Pain levels are also affected by hypersensitivity to other stimuli, such as the weather and noise. · Fatigue is present as a major symptom in almost all FM patients. · Sleep disturbances – FM patients tend to not get enough deep sleep and so wake feeling unrefreshed. Insomnia can also be a problem. · Cognitive difficulties. These include poor memory, brain fog, trouble with words and speaking (asphasia), poor concentration, confusional states and mood changes, including irritability and the tendency to cry easily. · Irritable Bowel Syndrome is present in most FM patients. Linked to this is reflux disease. · Irritable Bladder. · Headaches and migraines. · Hypersensitivity to any stimuli, including noise, cold, hot, light and chemicals. Linked with this is sensory overload, when the brain effectively shuts down because of too many sensory stimuli. · Autonomic dysfunction, which includes many of the symptoms mentioned here, but also includes the “classic” Dysautonomia symptoms of NCS (Neuro-Cardiogenic Syncope – fainting) and POTS (Postural Orthostatic Syndrome – when your heart races when you stand up among other times). · Mitral Valve Prolapse. · Loss of co-ordination. · Allergies and intolerances. · Poor temperature regulation, including chills and hot sweats for no reason. Lower than standard temperature as normal and low-grade fevers are part of this. · Exercise intolerance, including a delayed reaction to overdoing it, muscle weakness and poor stamina, unrelated to fitness levels. · Susceptibility to infection, especially viral, and slow recovery from illness or injury. · Swollen glands, sore throat and nasal drip. · Muscle twitches and tremors. · Myoclonus. · Problems with the menstrual cycle in women. · Tinnitus. · Anxiety and depression.
References: 1: http://www.who.int/classifications/apps/icd/icd10online/ 2: http://www.who.int/classifications/help/icdfaq/en/ 3: http://fibroresearch.blogspot.com/2007/03/fibromyalgia-and-concept-of-central.html quoting an article in Seminars in Arthritis and Rheumatism (2007 Mar 10). 4: http://www.fmaware.org/site/News2?page=NewsArticle&id=5690 showing the abstract of ‘Fibromyalgia syndrome: review of clinical presentation, pathogenesis, outcome measures, and treatment.’ from J Rheumatol Suppl. 2005 Aug;75:6-21. 5: http://www.emedicine.com/PMR/topic47.htm - WebMD/eMedicine article on Fibromyalgia by Regina P Gilliland, MD. 6: http://www.nervecentre.org.uk/Myalgic%20Encephalopathy%20(ME).htm 7: http://www.ncf-net.org/library/goudsmit.html 8: http://www.meassociation.org.uk/ 9: http://fibroresearch.blogspot.com/2007/04/study-finds-greatly-accelerated-brain.html quoting an article in Journal of Neuroscience (2007 Apr 11). 10: Wood, J. Patterson II, J. Sunderland, K. Tainter, M. Glabus, D. Lilien ‘Reduced Presynaptic Dopamine Activity in Fibromyalgia Syndrome Demonstrated With Positron Emission Tomography: A Pilot Study.’ The Journal of Pain, Volume 8, Issue 1, Pages 51-58 P. 11: Kwiatek R, Barnden L, Tedman R, et al. ‘Regional cerebral blood flow in fibromyalgia: single- photon-emission computed tomography evidence of reduction in the pontine tegmentum and thalami. Arthritis Rheum 2000;43:2823-2833.
12: Mountz JM, Bradley LA, Modell JG, et al. ‘Fibromyalgia in women. Abnormalities of regional cerebral blood flow in the thalamus and the caudate nucleus are associated with low pain threshold levels. Arthritis Rheum 1995;38:926-938.
13: Henriksson KG, Mense S. ‘Pain and nociception in fibromyalgia: clinical and neurobiological considerations on aetiology and pathogenesis.’ Pain Rev 1994;1:245-260.
14: Vaeroy H, Helle R, Forre O, et al. ‘Elevated CSF levels of substance P and high incidence of Raynaud phenomenon in patients with fibromyalgia: new features for diagnosis.’ Pain 1988;32:21-26.
15: http://fibroresearch.blogspot.com/2007/02/growth-hormone-deficiency-in.html quoting an article in Growth Hormone IGF Research, 2007 Feb 5. 16: ‘All About ME’ from Action for ME http://www.afme.org.uk/res/img/resources/All%20about%20ME.pdf 17: ‘Devin’s Diagnostic’ by Devin Starlanyl, adapted from "The Fibromyalgia Advocate" http://www.sover.net/~devstar/phsympt.htm 18: Symptoms of Fibromyalgia as described by the US National Fibromyalgia Association http://www.fmaware.org/site/PageServer?pagename=fibromyalgia#symptoms May 02 Migraine researchThere is so much confusing and damn near conflicting research coming out on migraines at the moment. First there was the brain damage study, from researchers at the University of Rochester Medical Center. This was an animal study published in Nature Neuroscience, suggesting that, during a migraine, brain cells become starved of oxygen - similar to damage that takes place after a concussion or stroke. It may be that giving oxygen during an attack may help stop the bad effects - like that'll happen!
And then there was another study, published in Neurology on April 24th, that showed there was less cognitive decline in migraine sufferers compared to the general population. The study followed 1448 people (mostly middle aged to start with) over 12 years, who were given regular tests, such as word tests, to monitor their cognitive decline. And it turns out that migraine sufferers don't decline as fast as everyone else, and those people with migraine aura did significantly better than their non-migraine counterparts. Woot! It's weird as migraine sufferers are often otherwise healthy people. It's even weirder as during a migraine attack, many people (including me) suffer from siginificant cognitive problems. For more information on the first study, read Headaches may act like tiny transient strokes. Read more about the second study in Migraine sufferers have less cognitive decline: Study. Thanks to The Headache & Migraine News Blog for the concise info. April 30 Psychobabble and CFSA BYDLS member recently brought an article on the American National CFIDS Foundation to my attention: 'The Tower of Psychobabble: CDC and CAA'. It highlights the problems associated with CBT (Cognitive Behavioural Therapy) being majorly promoted as a treatment - not a coping technique - for CFIDS and the IMO pretty corrupt links between the American Centre for Disease Control and Prevention (CDC) and the CFIDS Association of America.
The only currently approved treatment for CFIDS is CBT and GET (Graded Exercise Therapy). Despite CFIDS/CFS being recognised as being a neurological condition. Despite the very nature of CBT being coping techniques. Despite results that have shown GET can be dangerous with CFS patients.
This is why, if I am helping a patient whose doc is umming and ahhing between a Fibro and a CFS dx or if they want to take a suggestion to their doc, I always say, lean towards Fibro not CFS. If you get just a CFS dx then you are not likely to get any proper treatment - like meds for the underlying neurological issues! April 19 Fibromyalgia Update For Doctors & PatientsThe American Fibro specialist, Daniel J. Clauw MD, who is the director of the Chronic Pain and Fatigue Research
Center, at the University of Michigan has written an article that basically lays out the modern approach to Fibromyalgia. Apparently, it was initially intended to be an educational ‘Grand Rounds’ presentation for fellows in Rheumatology at Chicago's Rush University Medical Center, but was subsequently published in the April 2007 issue of the Journal of Clinical Rheumatology. The article 'Fibromyalgia: Update on Mechanisms and Management' is also available online. The article discusses the good and the bad of the ACR (American College of Rheumatology) criteria for diagnosing Fibromyalgia including the pointlessness of using the 11 out of 18 tender points as a key factor in diagnosis - something I've been trying to educate doctors and other patients about for ages! The modern view of the mechanisms of Fibro are gone into, discussing what has been learnt since 1990 when the ACR criteria was written. There's a whole section on the relationships between Neurobiological Factors and Psychological, Cognitive and Behavioural Factors that makes interesting reading. And there is a summary of some treatment options, although this is limited to the very widely recognised therapies and doesn't include more experimental stuff (like my Pramipexole!). And all this plus over 30 citations! All in all, it's a great article, long overdue. I'm considering printing it out for my GP and it would be great if you had a doc that tried to tell you "depression causes Fibro" or "you can't have Fibro without 11+ tender points".
Thanks to the Fibro Research Blog for the heads up. April 04 Patient QoL QuestionnaireThe UK Fibromyalgia Association recently helped complete a survey on patient quality of life (click here for the resulting PDF) and they have just let me know that the same organisations (the company PatientView for the QALYity project) are now doing a survey for individual patients on the on the subject of the quality of life of patients/people with a disability. The more notice that is taken of the need to address patient's QoL, the better, so if you have a disability or chronic illness, please take the time (not long!) to fill this in.
Oh and if you're curious, my answer to the one single definition listed that stands out as the most important of all in improving quality of life was "Being satisfied with the medical treatment/care that I am receiving"!
March 01 Perfectionism and IBSResearchers at Southampton Uni (article here) have found that pushing yourself when you have tummy bug puts you at greater risk of developing IBS. Hmmm....I wonder why I got it?
If you get sick people, REST! That's an order, okay? February 22 Interesting....Something I've been saying all along is that I am pretty active, despite what people think. I may not be anywhere near as active as I used to be, but compared to somone working in an office, say, I think I'm pretty active. I may have to rest occasionally when I walk and I may have very severe limits on what I can do, but generally, I'm pretty active. It has always bugged me that people with Fibromyalgia are often automatically seen as inactive...I'm bloody well not!
Anyway, I found an article about a study by researchers at the University of Michigan Health System that found out that although if you question fibromyalgia patients about their activity levels they will report a lower function than almost any other group, when monitored round-the-clock their average level of activity was about the same as someone who didn't have fibromyalgia. Yes! Fibromites are often former overacheivers who used to rush around at top speed and be very active, so activity levels seems like nothing compared to their old levels - but compared to normals, they're normal!
Here's the article... I hate the spin they put on it that this means people with fibromyalgia can be more active without pain - that's not what the results said! January 17 More chocolate, please!I found the Fibromyalgia Research Blog today and have been reading through the posts. One from December caught my eye.... "Chocolate: A Cure for Chronic Fatigue?"
Woot! |
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