Fibromyalgia on the BBC - invisible illness, chro... - LUPUS UK
Fibromyalgia on the BBC - invisible illness, chronic pain and the effects of misdiagnosis eloquently described - thanks, & to Kirsty Young x
Next time I'll read posts before posting 😂 Well, must be good if two of us linked it!
👍👍👍 It's beautifully graphic way of giving insight to those with no understanding of invisible illness, whichever one it might be! 👏👏👏
That the Professor describes pain as differences in the brain is all the better! 👌 👌 👌 xxx
Great video LK thanks for sharing. I don’t have Fibro but I believe I do have ME- CFS as part of my autoimmunity - which is really a sister condition I think.
Certainly I felt this was what the neurologist was trying to explain to me the other day. Although I still hate the term functional though because it’s so clearly dysfunctional to have a heightened sensitivity to pain or to be constantly fatigued. Xx
I was thinking that Twitchy after your report of your neurologist about the relationship between functional and dysfunctional. Are the dysfunctional things we have a part of functional disorders too? I’ve had cognitive dysfunction, autonomic dysfunction, menstrual dysfunction and complement dysfunction this year (well forever with complement dysfunction) but as there’s nothing structural wrong in any of these areas, is it (or some of it) functional in the same way your neuro said fatigue was? Not in the way you and I find offensive and lack of scientific explanation and being fobbed off with all in your head but in a just not functioning properly way because of the autoimmunity? Whether that’s the same as an actual functional disorder though I’m not sure but I feel a bit more open minded about it after your neurologist and that neurologist on eekts video explained it so well. I do think the medical profession need a lesson on how to explain these things in an acceptable manner as it makes such a difference to acceptance and presumably therefore chance of recovery.
I still think they’ll find some organic process for most of these fibro, ME etc things though but if we can help ourselves with some things in the meantime that can only be a good thing. My son’s paediatrician was brilliant about the difficulties he and I were both having with cardio autonomic dysfunction and said there’s some special Indian guru breathing techniques that can regulate heart rate and blood pressure. He showed me on google but I forgot the name and link (maybe next time he’ll help with cognitive dysfunction too so I remember the link 🙄😂)
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I'll read this when my brain is working! 🤪 xxx
😂 I don’t really know what I mean either! 🙄😂
Occult (diseases) - that’s the medical term I was looking for re the opposite of “functional”. But in what way is chronic pain ever going to be useful or practical?!
“functional adjective (USEFUL)
B2 designed to be practical and useful rather than attractive:
functional clothing”
I think the clinicians use the term ‘organic’ to differentiate from functional but also it’s increasing recognised that it’s not as black and white as some of them presume - and the poor people with diseases considered wholly functional are often given no help x
Yes I agree (it is my research optician who uses the term occult) - but in that case they should simply be called non-organic (as yet) or even idiopathic rather than functional. Functional implies that the sufferer is perfectly capable of functioning if only they would get off their backsides and stop being hypochondriacs X
Very true! And it’s even more offensive if we add in your earlier definition - hypochondriac and unattractive 😱😂
X
Very true! And it’s even more offensive if we add in your earlier definition - hypochondriac and unattractive 😱😂
X
I am still too zonked and addled to get my head around this business of functional v dysfunctional properly either Mel.
But I think what I mean is that the term functional should cease to be applied to health because if a person can’t function well for any reason whatsoever, then the condition affecting them cannot be logically be described as functional? This includes any kind of pain, sensory impairment or fatigue because pain and fatigue inevitably impact negatively on our wellbeing. Well-being is necessary in order for us to fully function. For example is it functional when someone has so much pain that they are contemplating taking their own lives? Of course not!
They should therefore ban the term functional from medical jargon and leave it to be applied to the arts ie functional versus decorative - i.e kettles versus fine art?! X
That’s fantastic logic and great idea! Love the way you’ve combined your medical knowledge with your artistic knowledge! I think banning the term is a good idea as it’s too often used as a fobbing off tool
Are you feeling a bit less sore?
Xx
Thanks Mel glad you like it. I’m feeling a bit militant just now - maybe it’s the new pain on top of the autoimmunity I’m not sure.
Thanks for asking. The rib pain does seem to improve for stretches - usually when I’ve made myself walk (only flat surfaces - today along the hard sand of a long flat beach). The spasms are easing up a bit with the 3 meds at max regularly but staggered. But they still take me by storm at regular intervals, particularly if I breathe deeply or twist slightly or stand or lie in the wrong position. X
I think we need to be militant sometimes! I felt very militant today when my GPs/ pharmacy gave me my months worth of methotrexate but had substituted my nice automated injecting pen and brand I’m used to for a clearly cheap dodgy version! A proper needle sticking out and said only to be given by a professional. I very stroppily said I wouldn’t accept it and they admitted they were trying to save money - which is fair enough but not in people who react to change in meds and have just reached a more stable phase. Will have to go back to rheumy to get him to insist but really didn’t want to bother him as he’s breathed a sigh of relief I’m less time consuming now! 😬
That’s good the pain improves at times, don’t forget to breathe deeply when you can, last thing you need is a chest infection. From memory, I think my ribs took about 5 weeks to feel a great deal better but even several months later I got the occasional stabbing/ pulling sensation on activity (but much much better than the first week which you’ve nearly got through now so definitely been through the worst)
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My white matter had been functioning well since early hours 😜 so while I have a window of opportunity, here goes: I took the Professor to mean that 'functional' was in the sense of having no apparent mechanical/biological cause but not discounting the possibility of finding one in the future (eg the functionality of MS, not known until 20?? years ago). Though some docs seem to use the word when they haven't a clue and can't be bothered...🤷♀️ xxx
Very interesting video - thanks very much for sharing! X
