World-renowned EDS expert, rheumatologist Professor Rodney Grahame (University College London) points out that, in America, almost 650,000 cases of EDS are missed ANNUALLY, based on studies that suggest almost 95% of cases presenting to clinics are missed, most often diagnosed with other things (Fibro/ME/csf, etc.).
Monday, 30 September 2013
Saturday, 21 September 2013
In some cases, brain fog is mild. For some, however, it can be severe and quite scary — especially in professionals who otherwise function at a very high level. Though standard testing will often not pick up the problem, in these cases the brain fog can make it difficult or even impossible to continue one's job. It may even leave you concerned that you are developing Alzheimer's. But you're not.
Tuesday, 17 September 2013
One of the things that annoys me the most about having an invisible illness is when strangers come up to me and tell me I don’t need my wheelchair because they just saw me stand up or walk to my chair from the car. Too many times to count, I have been called a fraud or told I’m faking it just because I’m not paralyzed.
As part of Invisible Illness Awareness Week, I would like to raise awareness of wheelchair users who have an invisible illness, like I do, and to point out some of the challenges we come across.
Some wheelchair users can walk.
Is there a relationship between poor bowel function and the symptoms of fibromyalgia? According to one medical study, some chemicals found in everyday foods may exacerbate fibromyalgia symptoms. This suggests that there is a strong link between bowel function and the pain associated with fibromyalgia.
Myalgic encephalomyelitis/chronic fatigue syndrome and encephalomyelitis disseminata/multiple sclerosis show remarkable levels of similarity in phenomenology and neuroimmune characteristics
In summary, patients with ME/CFS and MS both experience severe levels of disabling fatigue and a worsening of symptoms following exercise and resort to energy conservation strategies in an attempt to meet the energy demands of day-to-day living. Debilitating autonomic symptoms are experienced by people with both illnesses. Diminished cardiac responses to exercise are a common finding as are reports of orthostatic intolerance and postural hypotension. It appears, however, that ME/CFS patients may be more sensitive to physical or cognitive activities than patients with MS.
BMC Medicine | Full text | Myalgic encephalomyelitis/chronic fatigue syndrome and encephalomyelitis disseminata/multiple sclerosis show remarkable levels of similarity in phenomenology and neuroimmune characteristics
Friday, 13 September 2013
A lot of people seem to think they can look at a person and tell whether they're sick or disabled. They don't realize that the lack of a wheelchair, oxygen, runny nose, or grimace of pain is irrelevant - most illness is invisible.
To make more people aware of that fact, this is Invisible Illness Awareness Week. Awareness like this is important to those of us with fibromyalgia and chronic fatigue syndrome, and also to millions of other people who, like us, look healthy.
Monday, 2 September 2013
When you have fibromyalgia or chronic fatigue syndrome, you generally can still use your legs. It might hurt, and it might wear you out, but you're able to walk and we're all conditioned by society to think that mobility aids are for people with paralysis or severe injuries. Same goes for handicapped parking spaces - if you're not in a wheelchair or on oxygen, most people will say you shouldn't be parking there.
Society's image of what "disabled" means is really messed up. Those of us living with chronic, disabling illnesses need to recognize that and move beyond it.
A SUFFERER of chronic fatigue has said the poor air quality in St Austell is making her condition harder to live with, as a consultation is launched by Cornwall Council on pollution levels.
Doctors are charging sick and disabled people up to £130 for medical evidence to appeal decisions about their fitness to work, The Independent has learnt.
NHS GPs are telling patients they will only provide the necessary details to challenge controversial Work Capability Assessments if they pay. Others are refusing to help at all.
Dystopian sci-fi visions in fiction have long imagined two-tier societies where an underclass serves a master race – from Metropolis and Brave New World to Elysium – but we seem to have entered a non-fictional version of our own, with the poor forced to perform like PG Tips monkeys for the benefit of the rich.
Remind yourself of this the next time you feel weak for not being able to do something, and remember that at times you do put a smile on your face and keep moving forward, in spite of the torture. These techniques are used to bring down some of the toughest and best-trained people out there, and you deal with them every day. Who seems tough now?
Drinking wine in moderation may be associated with a lower risk of developing depression, according to research published in Biomed Central's open access journal BMC Medicine. The reported findings by the PREDIMED research Network suggest that the moderate amounts of alcohol consumed may have similar protective effects on depression to those that have been observed for coronary heart disease.
NB: Clearly, I'm not drinking it often enough! :)