Bearing in mind that the medical profession have (mis)appropriated the word functional to mean no organic cause has been found - do we think that the fatigue of Sjögren’s is functional?
Personally I feel the term functional should only be applied to things that are practical and useful (see Oxford Dictionary definition). And I can’t see how chronic fatigue or non acute pain can ever be useful and practical?
But if we accept the medical context of the word “functional” then can we also accept that certain symptoms triggered by chronic fatigue, such as twitching, tremors, sensory ataxia and small fibre neuropathy - are what my new neurologist calls “functional overlay”?
What I mean is that if we have a diagnosis of Sjögren’s as an organic autoimmune disease then isn’t the fatigue that so many of us suffer with it also organic- i.e part of a systemic inflammatory process?
Hello Twitchy,I completely agree I have life changing fatigue I have sjogrens syndrome, vasculitis and primary billiary cholangitis.The liver disease was diagnosed first and is associated with fatigue.I found the article below early on and I cried when I read it as I recognized myself so much in the article.The fatigues like wading in treacle it's physical. I was part of an exercise trial for pbc where l the doctors have found measurable biochemical differences in patients with pbc fatigue and I think this applies to other autoimmune conditions too. bmj.com/content/345/bmj.e7004
That’s interesting to read about PBC and fatigue Jane. I have longstanding Hashimoto’s and as a child I struggled with fatigue and other autoimmunity. I’m a terrible sleeper - waking at regular intervals throughouttge night feeling as if I’ve stopped breathing.
My arms and legs feel leaden and sometimes almost paralysed. But as soon as my brain wakes up and I force myself to move them the spell is broken and they galvanise into action. But I always feel panic initially that if I need to get out of bed or a chair fast then I can’t because they don’t respond to brain signals initially.
Most recently I’ve had widespread tremors when this happens and muscle spasms and a feeling of vertigo. My new neurologist explained that all this can be part of severe fatigue. I can absolutely grasp that fatigue is the main enemy but worry when it’s described as functional. For example I can now work out when I’m flaring by how leaden my arms are and how much I’m tremoring and these symptoms directly correspond with high inflammation markers in my blood. Therefore I feel that they can’t accurately be described as “functional overlay” because they are clearly part of the systemic process of an organic autoimmune disease.
For some reason it really bothers me that there’s an implication that my fatigue is merely functional rather than part of an organic process? I don’t know why it matters so much to me because I don’t long for further pharma treatment or anything - but it just does!
I would agree that functional is not a good way to describe these symptoms.I think the fact that they are invisible makes it especially hard I feel I constantly battle with myself about just how much I can manage am I doing as much as I could.But in fact I recently found I was under reporting my symptoms as I had become so used too feeling this way, and my rheumatologist (the fifth and finally one who can help!) Said that this is very common, people become so used to symptoms they don't realize.Sadly I have found very few rheumatologists have the insight to realize this, that patients don't overplay their symptoms rather much more likely to minimize them.I sufferred at least 3 years unnecessary, probably up to 10 years really bring told I had Fibomyalgia with no treatment until I became really ill with vasculitis and sjogrens. Now on immunosuppressants I am a lot better although still have fatigue, now I realize just how ill I was and am very angry about just how much I and many others are left to suffer due to inadequate doctors.Sorry about the essay you hit a nerve! Jane
Not an essay at all - just a very insightful comment. I think my problem is that my neurologists have all made me feel that, because my symptoms aren’t CNS of the type they see with MS or MND or MG patients, I’m making too much of them.
Apart from rheumy no.2 - all my rheumatologists have been more aware of the role that systemic inflammation plays with me because they see my high inflammatory blood results on the screen in front of them. And increasingly I’m convincing them that I have some underlying form of small vessel Vasculitis with Sjögren’s.
But as you say many doctors fail to take into account how much we adapt and become used to many longstanding symptoms such as the dryness. So when my rheum asked me if I struggle to swallow I said no and my husband came in with “of course you do! You need a large glass of water with every meal and sip between each mouthful?!” But I was thinking she meant swallowing when I’m not eating or drinking - which has been an issue for me in the past sometimes. In fact far from heightened sensitivity to pain I think we often fail to even identify a symptom as a type of pain!
Wow, what a great article, I didn't think anyone was taking the debilitating fatigue seriously. Hope their work continues & it benefits all with autoimmune/inflammatory fatigue.
Thank you, another great article that I hadn't read. The last sentence about the flu is bang on, it's similar to how I describe it to people. I wish these types of fatigue were understood by the medical profession & everyone else!!
Sorry we have been getting our house ready for selling and now have it on the market, so I haven’t had much of a chance to respond to something as DEEP as this posting - hehe!
I agree Twitchytoes. It's a bit like the argument that many people with Sjögren's also have Fibromyalgia. NO. Isn't it more likely that Sjógren's Syndrome CAN have many of those same allied symptoms that Fibromyalgia also has but they are really uniquely SjS? Maybe these symptoms, in some patients, are a forerunner of other more specific SjS symptoms, but are NOT fibromyalgia
In the same vein as 'functional overlay’ sometimes doctors terminology eludes me!!
For instance, I have an adrenal gland condition for which the particular genetic mutation I have, renders me only 1-2% enzymatic function. However instead of saying that I have a partial ‘efficiency' they say I have a partial ‘deficiency’. Well in my book 1-2% function constitutes only partial EFFICIENCY whereas for example, 79% enzymatic activity may be more like a partial DEFICIENCY.
Whatd'yathink? Aussie-speak for 'your opinion please' oh fair Scottish one!
Oops forgot to explain this rib injury here of course!
Basically I woke up half asleep and went to mop a dog pee up with cloth but slipped on route on corner of bath mat on our shiny ceramic bathroom floor and fell very hard on the side of the toilet bowl as I landed (awkwardly as our bathroom is small) nearly 6 weeks ago now.
After a day of barely being able to breathe in or out for pain my husband took me to A&E. The two doctors who saw the emerging bruise and swelling were pretty horrified I’d not come straight in! But as you and I agree, we Sjogies are made of “stern stuff” (as my late mum used to say). None of this “heightened sense of pain” thingy for me!
So they x-rayed immediately to check I hadn’t punctured lung or ruptured spleen and then declared it “just a rib fracture - with large heamatoma”- possibly 2 as they can’t see rib fractures on x-rats unless the bone actually has visibly come loose/ sticks out. I knew I’d broken them because it was same noise as you hear when you smash glass or pottery when I landed on toilet bowl.
But now it’s okay mostly only once in bed the pain returns, or if I sneeze or cough. Lots of strange pain meds have been lavished on me because the unfurling bruise was so stunning that no GP would let me leave thetir office without another prescription for something!
There - that’s what a visible, proper injury does - it gets us believed and all my GPs can breathe an audible sigh of relief that they can feel proper sympathy for me because they can see and touch the proper pain with their own proper eyes and bare hands!! X
PS will post a pretty pic on this now on the basis that “seeing is believing” - whereas, what ever flannel they try to feed us, a functional diagnosis is doctors choosing not to believe.
Last paragraph......absolutely true. ‘They’ can see something, they're happy. Not like what invisible illnesses do to those of us who have them. Denied. Ignored. Blamed.
And yes the low pain threshold argument.....I love it when we can prove them wrong! Black and blue but still hanging in there. Lol.
The clinical letter I extracted a copy of from my GP last week has nearly-neurologist deciding that I have an invisible and imaginary condition called Functional Neurological Disorder. I nearly fell off my chair (to give myself further visibility of course - after all I have a conversion disorder on top of confirmed Sjögren’s don’t I?!) when I read this?!
But then I recalled that my neuro physiotherapist told me there’s a lead neurologist in nearby Edinburgh who did a funded PhD (I couldn’t get funding this year to do mine on Seeing is Believing ironically!) on functional disorders. So this quack has a whole team of disciples telling just about every patient in the region who doesn’t have visible evidence of brain trauma, nerve trauma or some misbehaving hormone like dopamine - that they have this “real” rubbish. “It doesn’t mean we don’t believe your problems are real” they say to the poor sap in their wheelchair who can barely function due to spasms and legs giving way etc.
But of course we know (and most people know) that it does mean precisely this - because the neurologists are being handsomely paid and have had years of funded training to be right about how our minds and bodies work - or fail to work as it happens - due to being sad little beings who merely want attention or who are stressed out by being unemployable or exhausted by overthinking.
And even more cynically I will add to my rant - that it suits the governments - both regional and national - and it therefore suits NHS management or your Aus equivalent to feed us poor saps this functional/ conversion guff.
Because otherwise they might have to purchase and maintain equipment and skills in testing us all for small fibre neuropathy and Sjögren’s. And if we already are diagnosed with Lupus or Sjögren’s etc then its an absolute delight for them to be able to foist us all (mainly middle aged or older women of course) with additional crap rather than actually have to fund investigations and trial incredibly expensive treatments such as IViG on us?!
So what if my plasma viscocity/ sed rate is now in 60s,70s or 80s and my CRP is somewhere between 15 and 30? So what it fluctuates with nerve pain and comes down to normal only on steroids? Neurologists don’t have to think about this kind of stuff. But rheumatologists do so I just have to hope like crazy that mine has the nouse to stick up for me. She is after all a consultant and this ambitious young neuro isn’t quite one yet. X
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