Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 Some interesting posts recently, particularly regarding other people's perceptions of our wretched disease. I've just this morning returned from an appointment with my rheumatologist, who tells me that (thank goodness) my arthritis seems to be in remission, despite weaning me off methotrexate and sulfasalzine -- the bad news, however, is that the fibromyalgia is considerably worse, and he has no proven remedy to offer for the discomfort that that brings. When I got home, it struck me yet again what a poor name " Psoriatic Arthritis " is for our condition. At the moment, I am often quite disabled by the symptoms of fibromyalgia, extreme fatigue and brain fog, but have very little psoriasis or arthritis-- yet it's still called Psoriatic Arthritis! No wonder people have problems understanding what's happening to us. Some years ago, when I first joined this group, I suggested that we would get more attention, and more understanding, if the disease had another name -- one that better reflected the whole bundle of symptoms that comes with it ... psoriasis, arthritis, fibromyalgia, tendonitis, iritis, fatigue, cognitive fog etc etc etc. I've found telling friends that I have " a chronic auto-immune disease " has more effect than mentioning PA. When I brought this up with the group before, I foolishly suggested adopting the name of a high profile PA sufferer, Dennis Potter (writer of The Singing Detective), but " Potter's Syndrome " brought images of Harry rather than Dennis, or a repetitive strain in the ceramics industry, to most people's minds. Any ideas, anybody? Best wishes to all Marcus Quote Link to comment Share on other sites More sharing options...
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