ME(CFS) & Lupus: Hi all, Do you have any... - LUPUS UK

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ME(CFS) & Lupus

Hi all,

Do you have any information about the similarities or cross over between Lupus fatigue and the fatigue experienced by CFS/ME individuals. I've finished a documentary and our fatigue flares (or constant for some) seem almost identical. I can say this for other AI diseases as well.

Is immune system fatigue perhaps more universal that our docs say?

If there is a place where i can read about the differences, please link me to it. Trying to understand and also freaking out a little because the people I am seeing in this film I can relate to 100%, but I was never diagnosed with ME. Again, maybe all severe AI illnesses have an overlap.

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Well Said‼️. GOOD ?s‼️

In the early 1980s when the media first started going on about the “yuppie flu” aka ME aka CFS, i couldn’t get over the similarities between the nightmare that was my life & this mysterious complaint.

Over the decades i’ve closely followed progress understanding ME. And i’ve had friends + family diagnosed with ME. And i agree with your comments. These media announcements re ME this week have me flying Over the Moon.

I don’t know the detail, but my gut instinct is that lab tests run on ME patients do not indicate the sort of diagnostic levels of inflammatory markers, antibodies etc more “commonly” seen in relatively “typical” immune dysfunction patients. And I can’t wait to read what others have to say in response to your ?s‼️

Knowing how the health system struggles even to diagnose relatively “representative” cases of lupus & lupus-like conditions, let alone representative cases of other AID conditions (Sjogrens, Crohns, erythromelalgia, hypothyroid etc etc), am not surprised understanding ME has taken ages...so HURRAH for this week’s news

For what it’s worth, here are the links to NICE & NHS info re ME/CFS diagnosis:

nice.org.uk/guidance/cg53/i...

nhs.uk/conditions/chronic-f...

And: having been officially diagnosed with the primaries infant onset SLE + hEDS + PID Antibody Deficiency Disease, and having been told my 65 year old “case” is an interesting example of a relatively unrepresentative version of immune dysfunction + connective tissue disorders, boy do i know this has posed loads of diagnostic challenges probs for both the medical establishment & the health system...so am not surprised this week’s news re ME has been such a long time coming...and that there still seem to be no official diagnostic immunologic lab tests for ME/CFS

THANKS for posting katidid: oh boy will following your discussion be FASCINATING‼️

🎄❤️🍀💐🥂🍾 Coco

PS have just endured and more or less survived the ordeal of prepping for and undergoing another run of 3 v constructive & intensive tertiary clinic appts in only just over a week (gastroenterology + immunology at Addenbrookes + immunology ENT in London) + 1 eye-opening GP review, i’m TOTALLY wound up & ZONKED...and AMAZED by the insights coming from my consultants + GP, by what’s happening in my case generally to my peculiar bod AND by this 🌟🌟🌟🌟🌟 news re ME,,,,and am now even more aware than ever that THE BEST medics are the ones who acknowledge how little science actually truly understands about our type of health stuff...my feeling is that these advances in researching ME are going to help our medics help us all even more...eventually 😉

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Hi Coco XOX GREAT to hear from you, and hoping you can relax a little after an incredibly intense few months with consultants.

I'm missed the ME news, but here's the link:

bbc.co.uk/news/health-46570494

The article linked below says: 'More recently, studies have shown that inflammatory markers can accurately distinguish ME/CFS from depression or sickness behaviors.'

At work, my colleagues told me I had yuppie flu... xxx

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There you go...this is pretty much what my work colleagues & GPs told me for 30 years...they said you’ve got: Yuppie flu + spinal injury 🤷🏼‍♀️.

Thanks: am trying to relax, but this wizardly (is this a word) London immunology ENT consultant is running me ragged (emergency CT yesterday etc) and wants to see me again with his surgeon in early january...40 years is a long time to wait for this calibre of care...i know you know EXACTLY what i mean...🍀❤️

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DELIGHTED they are getting there! Everything crossed that soon you will have some respite from all the appts and have the chance of focusing on some bounce-back! 🤗 😍 😗 xxx

PS an appt with an ENT is never an apt wasted in my experience! 🤩

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Thanks....well, i’m glad for you, but i’ve had nothing but disappointing ENT experiences over the decades, from childhood care in the USA to my small local NHS hosp, to my current huge univ hosp in cambridge...it’s my GP + rheumatologist + immunologist who have always stood up to REALLY help with that stuff...all ENT has done is run lab tests & imaging studies. But now i’m learning that’s typical of most ENT depts where the implications of our sort of chronic ENT stuff tend not to be appreciated...eg, i’ve been thinking of you while prepping for this london consultation by reading this comprehensive clinic review on kindle: it’s 🌟🌟🌟🌟🌟...you probably know it already ❤️🍀❤️🍀

amazon.co.uk/gp/product/B00...

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Its good to know you colleagues had it covered ? xx

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I had hypochondria and other insults too...BUT I did include my line manager in my employment tribunal claim, because he was telling one and all it was all lies about illness (I went through 18-month diagnostics in that job), which was so-o-o-o-o-o-o satisfying...he must have been wearing brown trousers for the year it took to settle! 🤣 🤣 🤣 xxx

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Well done to you. xxx I had family members shouting at me that I had nothing wrong with me. Their medical speciality being ignorance. xx

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Yes, it's idiocy in mine...you can pick your friends, but not your family! 🤗 xxx

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😭😭😭❤️❤️

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Yes we were a bit unluckly to be caught up in the eighties yuppie stuff. I think it took the focus off looking into Ai for a while, easier too. Now I feel its turning towards a more positive future for many. So much being done re immunology etc . Doesn't take away how much suffering and damage went down but inwards we go. Lou xx

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As ALWAYS thanks so much for your informative replies!! I'll check out the latest news and am going to connect with a close friend suffering from ME who now, bless her heart, just tested positive for RA. And, agreed the more the medics understand about the truly evasive ones, I think that will spill over to other AI illnesses that are "less" of a mystery but yet still so murky. I through Lupus into this, because let's be honest, it's still not really understood if you look at as the spectrum it is.

Best to you and happy holidays! Remember to rest up :)

xoxo

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Am glad when anything helps! You’ve given us a GREAT pre-christmas gift via your post! Thanks again..and Merry+HAPPY to you+yours XOXO

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Hi katidid: 'Some researchers now consider ME/CFS to be a neuroimmune or neuroendocrineimmune disease.'...from this article updated in September:

verywellhealth.com/inflamma...

It contains lots of references to research and some tasty sound-bites xxx

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😯 YUMYUM! I just added the official NICE & NHS links re ME/CFS diagnosis to my reply above..your link gives the sort of BANG UP TO DATE info we need to take a more “rounded” view on this 👍👍👍👍

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This is a great article. I'm not even finished reading it and am already sending it to my ME friends. Specifically, those that are recently diagnosed with AI diseases that involve TNFs. I had an OMG when I read that part. That means it's *possible* for my friend who has ME and was recently Dx's with RA, that if she goes on a TNF inhibitor the fatigue of the ME might improve. #gamechanger

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Deliciously simple words in the article to describe very complicated processes, and dosed with optimism about new research into molecular causes of autoimmunity! There IS progress!!! 🤗 🤩 xxx

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I have wondered the same thing. if CFS is ME can I have CFS lupus? or am I just tired? the descriptions sound the same to me.

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I’m pondering this too, suzannah....before i discovered your reply, i’d just tapped some thoughts on this in my reply, below, to Tynemouth...

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When I ask all my docs, they say that the fatigue is part an parcel of Lupus, which is why it's among the diagnostic criteria. But I guess the question is fatigue vs chronic fatigue. I don't know about you all, but I am fatigued 80% and it doesn't not follow my personal Lupus flare pattern. It just gets worse with a flare. My docs kind of sidestep that, except one who said: Of course fatigue will always be there - your (meaning mine) system is waging a constant war. For people w/cross over or multiple AI, I think it's reasonable to expect that will will always have to deal with tiredness and fatigue. Our bodies are working overtime constantly.

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Should clarify: my @nd Dx is SpA and fatigue is one of the criteria as well. That's probably why my fatigue does not appear in a flare pattern. SpA is (mostly) not a flare-based AI. Some folks maybe, but not when it fully presents. Just a sidebar :)

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I'd say I was tired about 80% of the time too. I can feel fine one minute and the next i'm asleep. no knowing when it will hit and I just droop.

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My neurologist said, a few weeks ago, that all these conditions have fatigue as a characteristic when I was trying to explain to her that my fatigue isn’t a characteristic of functional overlay as she had stated in her clinical letter. I have pondered on sending her this link but decided against since it’s experience rather than science-based. I think it’s pretty much applicable to all autoimmune fatigue though. info.sjogrens.org/conquerin...

The most distinguishing feature apparently relating to Sjögren’s, very commonly misdiagnosed as ME, is the extent of blood viscosity/ ESR which apparently isn’t related to diseases activity as it is with Lupus and RA. It’s to do the intense concentration of antibodies and immunoglobulins in our blood, making it uniquely viscose. I’m fairly sure my doctors, who have told me this, get it directly from the SS pages of ARUK/ Versus but I’ve found it simultaneously very helpful to know and very annoying because they now tell me all my high inflammatory markers are just my normal - which I am sure they are not!

However i think Fatigue is Fatigue just as Arthralgia is Arthralgia. So I’m of the firm opinion that, once we are diagnosed with any connective tissue disease - these kind of overlay diagnoses such as ME and Fibromyalgia are unnecessary, and actually hinder research into the inflammatory fatigue of autoimmunity. I know many who believe they have both as distinct entities so this is just my personal opinion of course. But it can become a bit like a case of “my fatigue pain or is worse than yours because I have ME and Fibro as well as Lupus/Sjögren’s/ CTD”.

Individuals notching up the diagnostics can become a thing.. even some patient organisations such as the Sjögren’s Syndrome Foundation of US seem to do it. I find it very frustrating because it means assumptions are then made when we speak about trying to manage our diseases to PIP assessors, health professionals, friends and family. It should just be recognised as a hallmark of each disease rather than separated out into the functional overlay stuff.

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I think we need to be careful assuming that fatigue means active disease when there is evidence that its not always the case.

Fibromyalgia is a distinct diagnosis that can co exist with auto immune Inflamatory disease. It’s importnat to distinguish between active SLE and fibromyalgia, for example, as fibromyalgia doesn’t need treated with immunosuppressants. There are dangers associated with overtreatment as well as undertreatment.

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I agree although the blood is sometimes negative for certain individuals even when there is active inflammation so this can lead to assumptions as well.

I also wonder if some doctors are inclined to blame fatigue for heightening our sensitivity to pain rather than realising that it’s the other way round and chronic pain of an underlying inflammatory disease process will inevitably cause fatigue. It’s such a complex balancing act and I think the additional term now being used by neurologists, functional overlay, might simply be better described as Lupus of Sjögren’s or Vasculitis overlay - rather than distinguishing as separate conditions. Overlay here means that our brains have adopted unhelpful coping strategies which linger on despite disease being inactive.

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All functional means is that there is a problem with the software not the hardware, it’s not necessarily a negative term.

Is it a problem on an individual level or a disease level, I don’t think we know the answer to that.

There is no doubt that “ functional “ symptoms do exist, seizures are a case in point and I have seen many “functional “ seizures that are indistinguishable from conventional ones. Part of the problem is getting people to accept that Non epileptic seizures exist and can be treated, just not with anti convulsants.

It’s a complex issue, the biggest issue is professionals making judgements and patients feeling judged/ fobbed off. There is ongoing research into RMD’s and fatigue etc, Neil Basu has done some. The problem is if no one wants to research it then funders can’t fund it.

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There is a deal of research funding going into Professor Jon Stone’s neurology department at the Western General, Edinburgh, for researching functional movement disorders and functional neurological disorders (FMD & FND - neurosymptoms.org/

My neuro physio and neurologist are both strong supporters of the research. But I have serious reservations - even misgivings.

When we don’t have a centre of excellence for rheumatic diseases here in Scotland - the temptation is for neurologists to assume that any symptoms not relating to a primary neurological condition such as MS or MND are functional. And then people do get completely stranded if the standard reconditioning therapies for FND are unsuccessful. There is a high risk that they might give up reporting ongoing symptoms to their doctors for fear of the reinforcing of a conversion disorder label.

But then they can’t access an out of area second opinion anymore on whether they might actually have a rare rheumatic disease.

If the expertise and diagnostic testing methods aren’t here anymore and people can’t access centres of excellence without going privately - then it seems to me to be unethical for neurologists to diagnose symptoms FND?

This is why I’m not keen at all on the term functional - although I do agree that many of us will have overlaying symptoms that aren’t necessarily related to disease activity.

And I know that targeted exercises can be helpful in managing fatigue for some - although it isn’t helping me at all and this is frustrating for my OT and physio as well as me.

The temptation for me is to say to myself “oh pull yourself together! this is just functional and I won’t give in to the bad habits that my brain has formed!” So it’s a counterproductive term to use psychologically and practically for some like me because I end up fighting fatigue and becoming accustomed to pain and then feeling like a failure for lack of improvement in these.

Basically I think this is because the term functional doesn’t actually apply to me. A label is only as useful as what it brings with it after all.

Personally I would so much rather that the research funding went towards fatigue studies and the relationship between fatigue and inflammatory pathways rather than into trying to find the scientific evidence to support diagnosing functional disorders.

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Quantify a great deal of research funding, that concept is meaningless unless compared to the funding given to other neurological research.

I try to understand what you are saying and totally accept the way you feel about FND. The problem may be that you are looking at it with your rare Rheumatic disease hat on, that doesn’t mean that Prof Stone hasn’t helped a lot of patients with neurological disease understand the basis of their symptoms which can then lead to effective treatment.

No one that understands FND would say it’s a case of “ pulling yourself together “, my understanding of FND is that it is as much a disease as any other neurological ones and we need evidence based treatment for it as well.

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I will have to leave you to do the maths because I don’t know how to find out the sums - only that my neurologist and others have told me they have received a very large sum. I guess this is relative to competing funding appeals?

And yes I’m seeing it in the context of rare rheumatic diseases of course. But surely an ethical diagnosis of exclusion can only be made if viewed in context of all rare conditions?

However if you care to do your own research you could join and read posts on FND Hope HU - which may show you that there appear to be many diagnosed with FND who then can’t access follow up treatment/ targeted physio or any other kind of monitoring and are just discharged back to their GPs.

As I say a label is only as useful as what it accesses. However valid a diagnosis you feel FND might be for some (and Stone et al point out that the misdiagnosis rate is only 5% same as other neurological conditions) - it still carries Freud’s conversion disorder with attending uncertainty and stigma in reality.

This may change as it has for ME but it is still far from being a helpful diagnosis for most just now from all that I’ve read.

I suspect the misdiagnosis rates provided by Stone are actually very misleading. I was told by a rheumatologist that centres of excellence for Lupus have been diagnosing seronegative Lupus in order to keep numbers up for research funding purposes. So I am suspicious that this is actually happening the other way round with FND, and people with seronegative rheumatic diseases are being misdiagnosed with somatisation disorders which are then very hard to overturn.

But personally I think PTSD, EDS, Viral Encephalitis, some rare vestibular disorders, MCAS and the lesser understood/ hard to diagnose autoimmunity autoimmune diseases such as Sjögren’s and Vasculitis, need to be prioritised before we support clinical research into what are essentially conversion disorders.

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and yes 50 % of psa sufferers will be esr and crp negative, so some consultants will leave you hanging while the disease takes you down and into an emergency situation. Somatising all the way. xx

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Yes sometimes esr etc not helpful xx

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Really interesting. You’re so correct about the brain changes!

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Thanks. Although I am sorry if we have taken over your very interesting post with some disagreement here.

I admit that my personal experiences of all these meds has influenced the way I view them and the various conditions they are prescribed for.

In fact, after days and night of pain and related fatigue, I finally plucked up the courage to start my last of the epilepsy meds, Carbamazapine, last night.

My neurologist has prescribed this, starting at 100mg, at my request and so far no mind altering changes have occurred. But then the dose is the lowest possible and I’ve only tried one pill so far. It’s the prospect of coming off it again that frightens me after previous experiences.

But Trigeminal and Pudendal Neuralgia with small fibre neuropathy as a combination are no joke. As it happens I would far rather be going back on Mycophenolate because at least I was closely monitored on it and I think it helped more than my doctors ever realised. But my rheum took me off it in February because she felt the benefits were too uncertain.

I think this is because her knowledge and understanding of Sjögren’s is not extensive enough to include rarer presentations such as mine.

No doctor has even suggested I make follow up appointment to discuss whether Carbamazapine is helping or causing me side effects. And I do find this very troubling I must say.

Anyway, thanks for a great post, take care and happy Christmas! 😊

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Yes I quite agree. On the flip side when a patient has AI and not fibro it needs diagnosing correctly . Years of drugs for fibro did not work for me because I did not have that. A lazy diaganosis at the time. xx

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Yes. As awful as fibromyalgia and chronic fatigue syndrome are, there does not appear to be damage to organs and nerves as in autoimmune disease. In no way does that diminish the toll it takes on people’s lives. But giving toxic medications when not indicated would be a pretty bad thing to do. So many come on this site and are angry that their symptoms of fatigue and joint pain are given the diagnosis of fibromyalgia and not lupus. What if doctors gave you a diagnosis of esophageal cancer because you had difficulty swallowing and felt tired? From their point of view, it is about that negligent.

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That’s a great point. I have often said that if the treatment for Vasculitis etc was take 2 paracetamol then it would probably be easier to diagnose!

Pred and other immunosuppressants can be wonder drugs but they aren’t benign. Someone needs to be very sure of the diagnosis before prescribing them. That of course doesn’t excuse diagnostic delay, Consultants should phone a friend more often or refer onto tertiary centres to make the diagnosis.

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The true nature of diagnostic delay is not really known. Patients switch doctors and may not have complete medical records, which makes seeing a picture difficult. Complex cases should be referred to tertiary care centers, I agree. The Rheumatology Associations set standards for what patients should be referred to them. In general, don’t you think the serious diseases require the serious medications with the bad side effects?

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I think it’s unfortunately true that with life and organ threatening disease the treatment can carry great risk.

The 1 and 5 year survival rates for ANCA associated Vasculitis are worse than the 1 and 5 year survival rates for breast and prostate cancer. Some of that mortality is severe infection caused by the treatment ( high dose Prednisolone and IV Chemo ).

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KayHimm and Tynemouth - doctors hand out powerful drugs all the time for ME and Fibro!! What about Gabapentin and Amitriptyline, PPIs and NSAIDs?? These aren’t just benign, therapeutic agents - they are potentially as dangerous as steroids and DMARDs - but not usually nearly as well monitored.

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I had to re read your comment to be clear that you are equating highly toxic, CONSULTANT only medications with drugs that are available over the counter. What’s next, self diagnosis and Methotrexate to be re classified as an OTC medication?

Dr’s are responsible for their acts and omissions, overdiagnosis as well as underdiagnosis and for the medications they prescribe. They are then held to account for their actions.

Biologics knock out whole pathways in the immune system, Methotrexate is a weak form of chemo etc, to compare them to NSAIDS and PPI’s is naive in the extreme.

All of us on here have a back story of delayed diagnosis, poor treatment and the like which has affected us profoundly. Comments equating PPI’s with Biologic drugs don’t help.

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Of course I’m not equating Methotrexate or Biologics to over the counter medications!?!!!

Although actually I think I’m paying a pretty serious price for being left on Ibuprofen and Naproxen for up to a year. And I must point out that belittling the impact of long term NSAID use is just wrong!

As I think you know, I have tried 5 DMARDs and have suffered pretty devastating effects to several - so I don’t minimise these at all! But at least we are closely monitored on them.

And actually none of the drugs I referred to as potentially dangerous are available over the counter in UK. All are prescription only apart from Ibuprofen and Aspirin. I believe both Pregabalin and Gabapentin are both now classed as controlled drugs, as are many of the drugs used for pain relief.

One of the reasons many of us are put on drugs like Hydroxichloraquine and even Methotrexate is because our consultants don’t want us relying on OTC or prescription pain medications for too long. Certainly that was the case for me.

So I think my point about the dangers inherent in presuming functional conditions still stands in this context and I make it entirely from lived experience.

And for purposes of complete clarity about my meaning here - being left undiagnosed and untreated is one thing that of course affects many of us including the both of us. And it’s often not anyone’s fault.

But being misdiagnosed with a functional disorder, of questionable scientific validity, often carries a significant burden in terms of our long term mental and physical wellbeing and in terms of inappropriate and potentially harmful pharmaceuticals too. The impact of this should not be minimised!!!

If consultants can’t diagnose something due to lack of positive signs and symptoms then they should at least call a spade a spade. They can explain that they aren’t happy to treat what they don’t yet recognise or understand.

They should not label a person with a functional disorder, recommend powerful antidepressants or anti convalescents or make a person feel that it’s all in their heads! If it is all of the mind then there are consultant psychiatrists trained to diagnose these psychiatric conditions. Or there is physiotherapy for bad habits our brains sometimes adopt. Referring patients for these kind of non drug therapies is good practice - leaving people taking NSAIDS, PPIs, antidepressants and opioids unmonitored, is not.

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Nowhere did I belittle the impact of long term NSAIDS.

PPI’s are available over the counter.

My comments were in relation to your comments “ they are potentially as dangerous as steroids and DMARDS “

None of my comments were in relation to FND, unsure why you have introduced that into your reply?

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I’m referring to you and KayHimm saying that a functional diagnosis is safer than putting someone on Methotrexate or steroids. KayHimm was agreeing with you and saying that misdiagnosing ME in the absence of compelling symptoms is safer than misdiagnosing someone with a rheumatic disease and putting them on drugs like Methotrexate.

I’ve experienced both types of misdiagnosis and the functional disorder medications were more harmful to me personally than the Methotrexate, Azathioprine, etc etc.

If I sound defensive it’s because you keep querying the validity of my comments here and elsewhere. But I’m not given to gross generalisations and so I make all my comments advisedly ie from personal experience ie what consultants have told me or from drug reactions I’ve suffered and research - as I’m sure you do too.

The question here was about ME v Lupus/CTD and I think what Louise and I have both said was that, from hard experience, misdiagnosing either can be equally destructive.

I’ve only ever been prescribed PPIs so I didn’t know they were available OTC. So I stand corrected on this.

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I didn’t say a functional diagnosis was “ safer “ just that Dr’s feel they need to be sure of a diagnosis before prescribing the like of MTX and steroids. Everyone deserves an accurate diagnosis and evidence based treatment regardless of what their diagnosis is.

You have made a lot of statements about the validity or otherwise of a functional diagnosis and are absolutely entitled to. I do think the Line is crossed when implying that some of it is due to attracting research grants funds etc if you can’t actually back that up.

I don’t think there is any evidence to support medications for FND and there is mounting evidence on the harms associated with the likes of Gabapentin.

Of course misdiagnosis causes great harm but so does innapropriate use of potentially toxic drugs such as DMARDS etc. Harm is a relative concept and in many ways only makes sense on an individual level. I don’t think it’s useful to try and quantify 1 persons harm as worse than another’s, underdiagnosis, overdiagnosis, undertreatment and overtreatment are all harmful!

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Yes I believe they are equally harmful -this is exactly my point!

But I didn’t state as fact that getting FND numbers up to attract research funding was an issue. I merely pointed out that a rheumatologist had said this to me and my husband, in relation to seronegative Lupus during a consultation, so this idea was planted by him.

And as someone who tried to get research funding for a PhD myself at one stage - I feel that this speculation is actually quite legitimate. After all the rheumatologist who said something similarly provocative to me is the one who crossed a line because he clearly couldn’t back this up.

So I’m not crossing a line just by raising this as a possible incentive for diagnosing people with so-called functional disorders.

In fact I don’t think I’ve said very much at all as a statement of fact. I have merely stated my opinion that the lack of access to diagnostic testing for Sjögren’s or expertise on my disease, particularly here in Scotland where referrals for lip biopsies are increasingly being rejected by dental and ENT surgeons for example (a fact), makes diagnosing anyone with so called FND, ethically dubious. Possibly the same applies to ME and Fibro.

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Actually, what I was referring to was the importance of distinguishing between fibromyalgia and chronic fatigue syndrome and autoimmune disease because neither is understood to be autoimmune. They have tried steroids on both, I think, and they do not work. And, yes, if a person has early symptoms of lupus like fatigue and achy joins but no signs of inflammation or organ involvement, they have to be watched until the diagnosis is clear. It is the nature of autoimmune disease. I am only stating this because I do think it is not realistic to think doctors are going to catch early, mild autoimmune disease with current testing. Yes, some will be diagnosed with fibromyalgia, some with a virus, and some with chronic fatigue initially. I am not sure what the alternative is.

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The alternative isn’t clear to me either. But putting far more research funding into disorders such as MACS and EDS and the rarer rheumatic diseases would be a great start wouldn’t it?

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How countries apportion their research dollars is not something I know much about. You will be pleased to know I saw an immunologist whose lab is actively searching for better markers for MCAD. At least in the U.S., a lot of research goes into all aspects of autoimmunity. There is hope.

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I’m glad of this of course. But whether the results of US research ever filter their way here in time for me is very doubtful.

For example when I asked the young neuro physiologist whether it was possible to get the testing done for dysautonomia including thermal testing etc she said not in Scotland.

She thought it still possible to get this testing privately in London - but then said it seemed pointless when there are no treatments anyway.

I said I believed that Mayo and John Hopkins were making great progress with understanding the relationship between MCAS, EDS and autoimmune diseases but she sniggered and commented “ah the US - well they will throw research funding at anything there of course - real science or otherwise!” I can’t tell you how depressing I found this attitude but it’s still the prevailing one here I’m afraid.

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Well, I was referring to an immunologist who has over thirty N.I.H. grants. I doubt anyone would view those as “not real science.” I have read we have put a lot of money in alternative medicine research, which is producing nothing and depriving researchers of money for potentially important stuff. Not a subject I understand, though. Other countries do benefit from all the research we do. That is why you should hope we never move to national health care. Our private system also drives innovation.

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I’m only beginning to understand it a little myself KH due to having a place to do a PhD myself - so I’ve attended several research funder presentations. However I quit my place recently when I realised that my poor health wouldn’t permit the kind of doggedness required to even apply for funding!

Since then I’ve put my energies into my own work as a self employed artist and writer. I am a great believer in improved wellbeing through the arts - but not a believer in functional medicine. In the US I think the line between both is probably much finer because mainstream and alternative medicine both have to be paid for by the recipient at the point of delivery. Here in UK we mostly have to pay out of our own pockets for alternative medicine.

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I am not sure of the alternative either but I do know that Ai conditions are missed way passed the mild stadge. Often when bloods are not helpful and the rheumy switched off ages ago. Lou xx

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That is very unfortunate when this happens. I have only heard of cases in which the patient was clearly sick and the inflammation was noted in organs but the diagnosis was unclear. Your situation would be different. Maybe the doctors were missing some signs?

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Yes that is correct, missing the signs. Then a vasculitis expert saw, listened and explained . I am grateful to him and those who have come on board ., I have vast experience on how life is as a patient who is struggling , very unwell and not diagnosed correctly. These sites are very important and I have learnt so much here. Long may we try to help and support all those who visit . I have great respect for each and every one, Lou xx

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Yes, I, too, have learned a great deal. One thing I have learned is how unusual I was to have been diagnosed with a new label of UCTD within a year and half despite having mild disease. I did have very good doctors, and I was never told there was “nothing wrong.” It sounds like you were much sicker and yet undiagnosed for a long time. It takes a toll psychologically. Hoping you are finally on the right track! K

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Yes this year has been the best re getting my treatment plan correct. I have to say immunology have been amazing re globulins being low and a huge learning curve on that one for me. I have to thank Coco for helping me so much. She is a font of knowledge on the condition, suffering herself. It is pleasing to hear you were diagnosed early . Are you in the Uk ? , as it appears to be much rarer to get a mild diagnosis there. lOU X

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You and Coco seem to have complicated conditions that were particularly difficult to diagnose even though you were more severe than I. My only guess is that although I had no organ involvement, I had a slightly raised ESR and anemia — probably anemia of chronic disease — and that made them suspicious early on of something inflammatory. I am not sure the diagnostic process is much different here in the U.S. But we can be sent to a rheumatologist at the GP’s discretion. In the U.K. there are very strict guidelines regarding referrals, testing and the like. So happy this year is the best for you. May 2019 be even better!

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Thank you. I find it amazing that although we all share the same conditions or similar we all have such different journeys to diagnosis and treatment. This can be very difficult for some as seen on this forum. My feeling is there is still so much to learn and hopefully not in the to distant future. Here in the UK some parts have different rules , funding etc , adding to issues. Making Gp's, consultants and patients frustrated . It is always good to read of an early diagnosis and mild. Wishing you a good Christmas. x

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All you have to do is have reason to see patients in a critical care unit to understand the variation in medication toxicity. In my years, I saw countless children suffering the effects of necessary medical treatment, mostly from steroids and chemotherapy. I agree with Tynemouth that we have to understand what a large responsibility the prescribing of medication is. All medications have side effects. But they are not equal. It is important to recognize that trying to control a patient’s mild neurological symptoms with Effexor or Gabapentin is different from steroids or immunosuppressants.

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We obviously share a similar work history!

Have nursed many patients in ITU with severe sepsis causing multi organ failure secondary to steroids etc.

Personal experience like that necessarily gives you a different outlook. I am and have been very critical of Dr’s etc but I hope it’s tempered with an understanding of these sorts of issues.

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Yes, you definitely have a different perspective! Message me so that we can share experiences.

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Clearly neither of you have shared my experience of spending a week as an inpatient in a bay full of people who had all deliberately or inadvertently self harmed by taking drugs such as Gabapentin and Diazepam. All four people, aged from 16 to 70, had wound up critically ill in ICU after taking drugs prescribed for depression or chronic pain or both. Two had been diagnosed with Fibromyalgia.

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Your point is? Do you know how many people are harmed by paracetamol each year either deliberatedly or inadvertently? Your experience is anecdotal, it could easily have been any other drug.

All drugs have the potential to cause harm but that doesn’t mean that all drugs cause harm equally.

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All experiences related here, are anecdotal including your professional ones. You aren’t here as a retired nurse you are here as Tynemouth and your experiences and opinions are equally valid rather than more valid than mine.

However my point was for KayHimm who said that Gabapentin was relatively innocuous compared to immunesuppression. This point of view has not been in keeping with my own experience.

You were both speaking of your unique shared experiences of treating people in ITU who have had severe reactions to steroids.

My own experiences of what I saw while an inpatient are just as valid and equally relevant. I have had personal experience of psychosis from steroids but also from trying to get off Duloxetine. The Duloxetine was far worse and my doctors had no understanding of this at all.

I have experienced severe double vision from taking Gabapentin and a friend who took his life while newly on Pregabalin for back pain - having never shown any previous tendencies towards depression. How do you quantify the harm these drugs can and do cause?

I have had personal experience of pancreatitis from Azathioprine and anaphylaxis from Sulfasalazine. If I was offered a choice between Methotrexate - which for me was rather toxic - and Gabapentin - then I’d feel safer going back on Methotrexate any day because the cytotoxicity is monitored and the side effects are very well acknowledged.

Whereas Gabapentin messed with my brain pathways and this is much harder to evidence than other side effects I’ve suffered to DMARDs and nor could I just stop taking it as the GP directed me to. To me this makes it much scarier.

I am my own evidence and I will challenge any assumption that this family of anticonvulsant drugs is safer to take than steroids or immunesuppression.

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I’m sorry KH but I’m going to have to strongly disagree with you that Gabapentin is safer than immunesuppression or steroids. There is now much evidence to support that Pregabalin and Gabapentin are both potentially addictive and lethal: independent.co.uk/news/heal...

pharmaceutical-journal.com/...

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Yes, when abused or mixed with other recreational drugs! The point here is that steroids and immunosuppressants can cause harm when taken as prescribed due to their inherent toxicity. Pregablin and Gabapentin are potentially dangerous when not taken properly or abused. You are comparing apples with pears.

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No this is not so. I took all of these anti depressant and anti convulsants drugs we are talking about properly - but I suffered appalling side effects - and it was incredibly hard to get off them. Many only discover how dependent they have become on drugs like Duloxetine when they try to withdraw.

There are whole websites and forums dedicated to advising people about how best to get off them and how devastating the side effects can be. I know because I had to use one of these forums to get off Duloxetine. And it was a terrifying experience for me.

And this does not just apply to those who abuse them at all. I’m a sensible and intelligent person just as you are and I am explaining this as sensibly and intelligently as I am able. These drugs can be innately dangerous and harmful and can and do tip mentally robust people over the edge even when taken properly on their own.

I’ve also experienced more side effects to drugs than most people have so I’m speaking from experience.

Many people here take steroids and immunesuppression with no problems at all. Same goes for anti depressants and anti convulsants. But, unlike immunesuppression, the nerve gating agents only gate nerve pain at best, they don’t modify the disease and aren’t monitored by GPs. And they can only ever mask pain, which is also potentially dangerous. I’m therefore comparing pears with pears,

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So true KayHmm: and don’t i know it:

I am a DES Daughter, born in 1953 with classic DES internal reproductive organ birth birth defects, adenosis, infertility & endometriosis. My consultants think 5 months of daily inutero DES exposure tipped my familial predispositions (hEDS + suspected MCAD) over into infant onset simultaneous autoimmunity + immunodeficiency....

You probably know DES is the internationally notorious endocrine disrupting artificial oestrogen diethylstilboesterol:

en.m.wikipedia.org/wiki/Die...

AND my “moderate” SLE went inadequately medicated until 2011...so multi-system damage progressed uncurbed for decades while bewildered medics dosed me long term with prescrip NSAIDs + PPPIs + opiate & benodiazepine analgesics ALL of which have aggravated my mouth to exit GI tract issues and speeded up the onset of Intestinal Failure (i’m on prescrip Enteral Nutrition, unable to tolerate or digest food by mouth)

My Rheumatology & immunology chiefs have cautiously & gradually added meds to my daily therapeutic intake and i have responded vvvv positively to each addition....feels FANTASTIC to gradually get some stamina + resilience + comprehension back after decades of debilitation...to have less persistent multisystem infections...less rashes etc... but of course a significant degree of damage has been done so am still more 95 than 65

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You have really suffered from having a complicated illness with unusual presentation and negative antibodies. It is really unfortunate that they could not diagnose you earlier and treat you. You must feel betrayed by the medical profession since they missed your diagnosis for so long. The fact that your mother was given a drug that has had such side effects in the children makes it even more frustrating. I am glad you have found a team that is helping you finally get on your feet. I know it is still not easy.

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Thanks KayHimm...well, i’ve had a lot of decades to get used to being so unwell with medics telling me all my manifestations (inc septicaemia) are normal...i’m of the earlier generations before the internet who tended to be trusting...and in my case with good reason: the NHS saved my life several times in emergencies despite not spotting my immune dysfunction!

ALSO my husband & his sister have severe early onset crohns...i was their carer and felt constant ADMIRATION for the care the system provided them. But, yes, i did develop MPTSD due to the inconsistency between the general poorly nature of my condition ‘globally’ & of the system assuring me it was all normal over & over.

Believe it or not, I survived by pretending i was a soldier at war...which wasn’t too hard to do because i grew up in a deeply dysfunctional unstable family with mental illness & addictions & abuse. I figured that if i survived that i could survive anything.

By the time the multisystem damage my immune dysfunction had caused had become visually unmistakable in 2010, my husband was off pred after 30 years, with his adrenal function fine & his crohns miraculously in remission...and since when he has become my carer! An extraordinary symmetry!

AND i am now in the WONDERFUL care of several extraordinary tertiary NHS clinics, mainly at a world famous univ hospital in the next NHS catchment area, but also 2 at my own little local hospital.

So, i know the health system well from pretty much all sides now...and realise its +s & -s well: i have no illusions, i take everythng 1 step at a time, i try to put my best foot forward doing everything i can to help the system help me, but i don’t waste time with medics who who scoff at my manifestations...and they still do eg at fracture clinic recently a nurse told me lupus was “nothing” and that her friend with lupus was climbing in the himalayas...this sort of thing makes my blood boil, but i’m too worn out & weary to waste energy on it...so i just “move on” to the next appt, hoping to encounter someone more “in the know”.

the wizardly tertiary immunology/ENT consultant i travelled to see in london last monday told me i must remember that science simply knew next to nothing about immune dysfunction until now...and now we’re only beginning to know a bit more. I do know this is true.

But i don’t feel this justifies the dreadful suffering i’ve witnessed here day to day over the past 7 years as this forum’s membership has “grown like topsy”...i feel it’s high time GPs, nurses etc & average consultants in secondary care were enrolled in “ongoing further education” courses to ensure they are at least more immune dysfunction & connective tissue disorder AWARE + open minded...cause clearly we are on the edge with a tidal wave of patients heading their way...society generally is going to sorely feel the loss of these patients’ “functionality” and the expense of caring for the deterioration they experience due to establishment ignorance, postponed diagnosis etc etc...and some of these drs & nurses will find THEY/those close to them also have our sort of illness....thank goodness Lupus UK and other great support groups are lobbying hard to raise awareness!

APOLOGIES for going on & on...but this subject is close to my heart... and this week my degree of chronic cognitive impairment is a bit lower than it has been for months...and i’m making the most of being able to “find” words to tap into replies

Thanks for your part in this BRILLIANT discussion and for ALL your kind words...i get the impression you maybe were/are a health professional...if you were/are I feel sure your patients loved you

XOXOXO

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I got tears in my eyes reading about your struggle. There is only one thing worse than being very sick and that is being very sick but told we are fine. I do think autoimmune diseases are both the most misunderstood and yet life-altering of all the big disease categories. I can assure you that in-patient staff in a hospital would never have made such an insensitive and absurd comment to you about lupus. It does hurt when you are struggling to get through the day and someone compares you to a mountain climber! That was a reflection of her ignorance, for sure. Like you, I find it rewarding to see that many people who have been affected not only by their disease but by the long diagnostic process can share their experiences here. You were and are a soldier, but now you know who your enemy is.

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Oh gosh...your wise, deeply thoughtful reply is THE perfect bedtime read...i suspect the nurse got her cue from the fracture clinic lead hand ortho surgeon who REALLY seemed the scoffing type but was more tight lipped.... THANK YOU (again)....am vvvvv glad you’re here. Good night...and Good luck XOXO

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Yes Amitriptlyline can cause memory lose for example, Lou xx

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Yes! I actually loved Amitriptyline but sadly it made my eyes more scarily dry and after 3 years on ever increasing doses, alongside MTX and others, I found it was the cause of my severe heart palpitations - so had to stop. X

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Gives me the munchies .... I get into the sweets in the middle of the night ;)

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Not being given medication for AI disease in time has left me with some awful damage to parts of my body. So its strange but the fibro label was actutally dangerous for me. XX

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I think it’s dangerous to diagnose anyone with a functional disorder for exactly this reason Lou. Much better to say “we can’t diagnose or treat this set of symptoms yet but we can at least try some non drug related therapies and see if they help you”.

If these do help/ sort out a person’s symptoms then this would be more useful and also more diagnostic of non disease related symptoms surely?

It’s all very well saying that we don’t diagnose and treat reflux as oesophageal cancer so we shouldn’t assume autoimmunity for anyone with symptoms. Of course autoimmunity should be properly diagnosed.

But in reality doctors hand out NSAIDs, anti-emetics, PPIs, anti depressants and anti convulsants for ME and Fibro all the time.

And these are very powerful and potentially dangerous medications too!!

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Yes Twitchy you are spot on with these comments. xx

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Thanks Lou. As you know it’s something I feel very passionate about! X

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Yes me too. xxxx

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Increasingly now ME is viewed, particularly by more enlightened sectors the medical community ie those at the forefront of medical research, as being on the autoimmune spectrum.

After all not so long ago Ulcerative Colitis was viewed by doctors as functional/ IBS. Now it is known to be IBD. So these distinctions can and do change over time.

And I think your point about distinguishing between functional and autoimmune, comparing this with diagnosing oesophageal cancer - is too simplistic to be honest.

The unique relationship between a doctor and their patient shouldn’t be underestimated and thankfully some doctors choose to trust their patients, to give them the benefit of the doubt.

Diagnosing Cancer is a much more clear cut business usually than diagnosing autoimmunity. So a health professional coming new to a case might feel doubt or pick up on the cynicism of a doubting doctor and treat patients with ???? accordingly.

Where the consultant who has diagnosed and treated this same patient with autoimmune disease, as opposed to diagnosing something functional, would have only done so with great thought, knowledge and experience of their specialism and not on whim, or based on their bloods alone.

The patient may then improve just through feeling believed by their rheumatologist and only require a relatively short time on DMARDs or steroids. Whereas the patient who feels their symptoms are being misdiagnosed as benign generally won’t flourish.

They may, for example, take recourse to questionable practitioners or take higher doses over the counter or shop online for medication at advice of non medical peers. Or they may accept powerful mind altering medications and become over reliant on these, only to find they did have an autoimmune disease after all and it’s damaged their joints or internal organs irreparably.

People have died from ME, often disbelieved and treated badly by nurses and doctors, even by friends and family.

The distinctions aren’t like the ones between cancer and non cancer - in fact they are often very subtle indeed. The brave specialist who has learnt to trust their own and their patient’s instincts are in my opinion, usually the ones who are very good, courageous doctors.

Too many these days are quick to put patients on drugs such as anti depressants and anti convulsants due to over reliance on negative blood results or not taking time to listen or do their homework.

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🌟🌟🌟🌟🌟👏👏👏👏👏

Well Said Dear Twitchy 🍀❤️🍀❤️🍀❤️

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Yes, it certainly is important for doctors to work hard to arrive at a diagnosis. Maybe the process could be explained to patients better. I was being simplistic with the cancer analogy to illustrate how I imagine doctors think about systemic autoimmune disease. You do not diagnose an illness that is known to damage the body without some certainty. On the other hand, people are told they have a virus, fibromyalgia, dermatitis or chronic fatigue all the time. For people with chronic fatigue and fibromyalgia, the diagnosis is particularly sad because they can be debilitating but are not understood and not effectively treated. As far as functional symptoms go, my impression is that this can mean a lot of things. Many of us have migraines and other neurological issues that I think may be considered functional but be caused by low level CNS involvement. As one member described it here, “the software is not working, not the hardware.” In the end, there is a lot doctors do not know. People will look back one day and be amazed that a doctor could not diagnose lupus or chronic fatigue with one blood test on one visit.

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Some fibro drugs do effect the memory or so ive read. So they need to consider this also. Lou x

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Hiya and as always, thanks for your great insights and personal story! Quick thought about what you said: "my normal". I've been thinking about this alot lately, especially as I have to track my tests and keep them aggregated b/c the docs always seem to be unable to push one button that gives them the historical graph ... I definitely agree we all have our normals that are useful but also our normals aren't. Weird sentence, sorry! The former: my WBC "normal" is low because I have chronic leukopenia. So, when it goes above 5 I keep and eye on it. In July, it hit 9.5 which is still in range. However, I knew that was not my normal so even though it was not flagged by the lab AND the doctor missed it, I didn't. I reported it and sure enough I have a deadly infection. No joke. However, there's the other side of it as well. I have a weird ratio of MPV to TPC...but I don't show any signs, nor have any of the associated diseases. In the case my normal is clinically insignificant whereas someone else might be be diagnosed with bone cancer. Food for thoght..

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Oh heck - food for thought undeed as your “not normal” sounded very scary.

My equivalent is my body temperature which is always low (Hypothyroidism I think) so even a slightly elevated temperature can be a really bad sign for me eg pancreatitis or sepsis. Also my CRP and PV are always elevated but if they are higher than my mildly elevated average then this isn’t just my normal as the doctors always assume.

When I lived up north on island the one thing the hospital doctors always did was ask me what my normal CRP and ESR were. This was so much better an approach than applying a generic normal.

I have found my new doctors rely on ARUK’s Sjögren’s pages to make decisions about my disease activity score - which is hopeless as I have my own baseline and unique scoring system, just as we all do. It’s no good then telling me my blood is inately viscose so is irrelevant to my picture. It is viscose but I can usually recognise and identify systemic inflammation on top.

So they need to ask if I feel this is my normal or your normal and trust us to know. I mean there will always be plenty of people who don’t know of course. But, with belleagured healthcare systems around the world - the default position should be inclusion rather than paternalism if they want to keep us up chronic people up and out of their hospital wards X

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The big difference is that fatigue associated with auto immune Rheumatic diseases responds to pacing/ graded exercise whereas graded exercise has been disastrous for people with ME.

Fatigue is a common component of most chronic disease regardless of underlying diagnosis unfortunately. It can persist despite good treatment of the disease and doesn’t necessarily mean that the underlying disease is active.

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Exactly, but aren’t there always exceptions or variations, eg:

my infant onset lupus diagnoses was lost when i moved to the UK at 21. I went without systemic lupus meds until i was in my 50s (Long story).

During the decades before my lupus diagnosis was recovered & treatment begun, i conscientiously & resourcefully concentrated on self help, lifestyle techniques inc pacing & graded exercise, nutrition etc etc. Even so, the severity of my version of inflammatory process + characteristic intractable fatigue & physical debilitation progressed relentlessly until i became mainly housebound

Now rheumatology & immunology think the consistently pos response (more resilience & stamina than i’ve had since my teens) i’ve been getting over these past 10 years on daily combined therapy meds for “moderate” lupus is because my version of chronic fatigue is partly due to my collection of chronic overlapping immune dysfunction & connective tissue disorder-related neuro cerebral issues (these are inflammatory + typically complex & progressive, and affect my whole body)

But: maybe i do have ME overlapping with all my other conditions...and maybe some ME patients will eventually be found to respond pos to pred + myco (of all my daily meds, these 2 help most to damp down the inflammatory process underlying my fatigue)....i’m on the edge of my seat, hoping to be around long enough to see what happens next

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You went untreated for decades, of course that will have an impact. It’s totally different from having well treated disease yet still having problems with fatigue etc.

I think we need more open mindedness all round, from both patients and Consultants. Behind the scenes there is a lot of research going on into bio markers etc that we don’t measure at the moment. Part of the problem may be how we categorise “ remission “, ESR, CRP and the various auto antibodies are a blunt tool, we need to get more sophisticated. On a personal level my disease ( I don’t have SLE ) was judged to be well controlled by both me and my Consultant yet I developed some subtle symptoms, shortness of breath on exertion and chest pain. 18 months later I have a diagnosis of microvascular angina, my underlying disease has affected the very small blood vessels in my heart, I have no underlying cardiac risk factors. It’s very scary thinking about the damage that sub clinical inflamation is doing and that I have no way to measure that until the damage is done and manifests itself as symptoms.

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Yes, it is very scary, indeed. I think doctors know that we do not yet have the tools to measure disease activity or treat autoimmune conditions with much sophistication. Even if we accept that some damage is being done, the drugs are so toxic that they would not think they warrant the risk. It is all pretty primitive. You really had an unusual and serious situation with the inflammation in your arteries. What did they do for that? How are you now?

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Primitive is right! Yesterday a rather grand Immunology ENT consultant told me science is now really beginning to get a relatively more sophisticated grip on immune dysfunctions & connective tissue disorders...he was trying to help me feel good! I never stop feeling like a lab animal....which i feel is ok so long as my medics learn enough from managing my case to help them help others....AND so long as i do get a decent degree of pos effects, as i am now from ALL my treatment plans....

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You are living proof dear Coco. xx

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Hi Kay,

I am experimenting with various cardiac meds to help open up the small blood vessels and stop them going into spasm and giving me the angina pain. I have a naturally low pulse and BP so it’s proving a bit challenging!

I am on maximum treatment for my underlying disease ( Methotrexate and Infliximab infusions ). In many ways my symptoms are so much better than when I was untreated that I am reluctant to rock the boat and try other immunosuppressants, especially as there is a lack of evidence base. My disease is a mixture of both the rare and atypical, I have some large vessel involvement as well.

I suspect I am like many on here, we do the best we can, with the symptoms we have and the medications that are available!

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That sounds complicated and challenging to treat. I can understand why you would want to stay on the medications that are working — very glad they are — and not want to try things for which there is not sufficient evidence. I did read an article that was more of a dialogue among rheumatologists that sounded optimistic about getting better studies related to effectiveness of medications on specific symptoms and also new medications coming out in the future. Hoping it will help you!

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Yes we do the best w can. I think when rare stuff kicks such as for you and I can be a challenge, Good luck xx

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HEAR HEAR! I love the way you’re looking at this...your comments ring true in my experience + are very encouraging...eg: am still “processing”, but this is more or less what the London Immunology ENT consultant my immunology chief said me to said yesterday:

It is possible to have persistent AID inflammation + entrenched infections in an area, eg sinuses, that can then spawn infections elsewhere (especially in my case because i have simultanous primary immunodeficiency & autoimmunity and am diagnosed with chronic persistent pockets of bacteria-driven sepsis in several body systems).

Because sinus mucus membranes are so interconnected with gut as well as facial structure/ tissue, it's easy for bacteria to travel and set up new pockets of infection elsewhere, ie in my jawbone, stomach etc. In the course of the life of a hEDS+early onset SLE+PID patient, these pockets of persistent bacteria driven sinus septic infection would often rotate dominant bacteria as different antibiotics were used and poor blood supply to the sinuses meant that the bugs would establish biofilms and resist treatments.

At least this helps me come to terms with having Intestinal Failure & being stuck on Enteral Nutrition....it’s ALL connected

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So true. I have spent decades saying feels like a grumbling infection constantly and then would become acute. Antibiotcs by the mass for decades . Now low igs on treatement. My areas same as yours so very very intesting xx

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Yes graded exercise only works when the correct diagnosis is made. When fibro misdiagnosed I could not grade exercise, now its MCDT ,vasculitis, low igs etc and on correct treatment I can indeed pace my excercise. A long time coming off the back of a sero neagative stuff and got dangerous as missed for so long.xx

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Similarly depression, some neuro symptoms and pain. This is why I personally feel that exclusion diagnostics, where there are pre-existing conditions, are better described by doctors as “overlay”.

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This is such an interesting question and one I have pondered for several years. I was originally diagnosed with M.E. This was on the basis of basic bloods being normal, bar having lymphopenia, and symptoms. Then, after a massive medical emergency and surgery several years back, I was finally properly investigated. So I now know that I have Lupus, APS, a genetic condition, a form of dysautonomia, plus other things. Under the 'other things' there are some, indeed many, 'mystery' symptoms i.e. that medicine cannot currently satisfactorily explain.

So, do I still have M.E. (my 'fatigue' is actually post exertional malaise, a term almost universally used in the M.E. community and which encompasses many of these 'mystery' symptoms), whatever that actually is? (because, of course, post exertional malaise, whilst not a term I have heard used by those in the Lupus community, certainly describes what some people experience. Plus delayed onset to over activity - which has, to date, been taken as a hallmark of M.E. ) One specialist suggests not, and that M.E. is in fact just other complex and/or rarer illnesses that have not been uncovered due to patients not being fully investigated. Under such a stance, one would be able to argue that delayed onset post exertional malaise i.e. not just fatigue, but increased sleep difficulties, brain fog, headaches, weakness, pain, etc, etc, etc, is not a phenomenon unique to one particular illness. However current knowledge of Lupus, APS, etc, doesn't explain all my symptoms. But then knowledge of Lupus, APS, etc, is still evolving e.g. its effect on the central nervous system, blood perfusion within the brain, etc. Then another of my specialists does believe that M.E. is a a novel or novel entities; which medicine cannot currently properly explain, and that maybe my 'mystery' symptoms may prove to fall under the M.E. banner. My own thoughts? Well, M.E. research is undercovering all manner of abnormalities, all pertinent to fatigue - one intriguing current line of research is to do with mitochondrial dysfunction. And, for example, malfunction of the HPA axis and the prevalence of dysautonomia are now widely accepted by those involved with those diagnosed with M.E. And, a real biggie, is the work of Americans such as Nancy Klimas - she appears to have demonstrated a unique physiological response in M.E. patients to exercise. This, up to now, has been seen as a unique marker to M.E. not shared by other illnesses; but is it?

So, where am I heading with all this? Well, for me, I think a key next step is for fatigue in chronic conditions to get proper funding and be thoroughly investigated. By this I mean an across the board effort involving researchers, patients and medics in illnesses where the mechanisms of disabling fatigue, and an increase in other shared symptoms after activity, is still really not understood. Perhaps joining the dots here requires a combined effort/pooling of expertise. I would be unsurprised, were such research to occur and eventually bear fruit, to learn that there are at least some common links/processes.

Do I still consider myself to have M.E. in addition to the later diagnoses I was given? At present, yes, I think so. Certainly I am following the research and still feel that I have a foot in the M.E. community.

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WOW: The Voice of Experience! SO GLAD you’re here today MrsMouse, THANK YOU for every detail!!!!!!

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Thanks, that's kind of you! I'm glad to be here today; I had another gastroscopy this morning and thought I'd be out of it from the sedation. But, happily, not enough to keep me from wittering on! Also happily - the fundic gland polyp that was being re-investigated after an autumn biopsy showed a slight cell change has disappeared. I was too far gone earlier to ask the consultant how this happens; I am only disappointed that I didn't get to pass, clean and then put it under my pillow. There must surely be a Polyp Fairy?? (generous by nature...) XX

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UGH: these procedures take so much out of us. Well Done! Am so glad you’ve had good news too! Am all for Polyp Fairies! XOXO

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That is a great summary of my own sense of this. It seems to point to the fact that many of the disease entities that are definitively labelled and catalogued in the directories of diagnostics are in fact not separate entities at all. And that the labels are actually little more than descriptions of symptoms ("post exertional malaise" perhaps being an example of a raw symptom that is being treated as if it were a specific disease entity). However, these labels may be more properly seen as reflecting professional divisions. For example, my rheumy refused to consider my adrenal function as a factor in my fatigue because I had a "normal" cortisol level in a test done one afternoon. After I had paid for further endo function tests, he had to agree that I had adrenal insufficiency. Likewise, my endo has had no communication with sleep specialist who my cardiologist had referred me to! For the endo, the disease entity "adrenal insufficiency" had only a tangential relationship to my insomnia ("It's because you have been taking steroids, so try adjusting your hydrocortisone dosing" was his only input - whereas to me it is clear that the HPA axis functioning is bboth a function and a central modulator of many other systems, including all the other systems that run on circadian cycles).

If only our bodies would recognise these professional boundaries! x

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This "post exertional malaise" occurs in some patients with PMR - but we don't bother creating big phrases. Do too much and you feel crap...

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You put it so well! I do wonder to what extent many of these things are actually separate entities. We are all encouraged to work within 'boxes'/labels, as this is how medicine currently thinks and treats. But maybe in a few decades - wouldn't it be great if sooner?! - we will have a very different understanding.

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The fatigue of autoimmune disease is pretty much universal - although I do get the impression that most people seem to think it is specific to "their label"

Have you seen this

info.sjogrens.org/conquerin...

Everyone I have spoken to with PMR/GCA who has seen this says "That's me..."

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Great article tahnk you. Goes to great detail to really try and explain all the different levels of fatigue. It has always been my understanding that is someone is ill they will be suffering levels of fatigue. I have never found having them linked to specifics like ME helpful in the least. I very much welcome the finding that with ME it has now been linked to an overactive immune system. So then one step further and find the AI disease too. xx

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trying to read all your comments has left me feeling more confused. my tired brain can't cope with all your technical words. As I understand it "chronic" means long lasting so if I am tired all the time surely I have chronic fatigue. so why is it only ME that has chronic fatigue? I need a nap

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hello suzannah: This sort of thing makes me need a nap too! Especially when i’m more unwell than usual...but at the mo i seem to be just beginning to feel a bit less out of it

My reply will probably also send you off to ZZZZ, but it’s early in the day when my brain is a bit more active, so here goes...

Yes chronic means long-lasting/persistent/recurring. Chronic fatigue is typically listed as one of the symptoms of many many diseases.

So i agree: it is confusing that the medical establishment refers to ME (Myalgic Encephalomyelitis) as CFS (Chronic Fatigue Syndrome - I guess the term “Syndrome” is how science tries to differentiate ME/CFS from the sort of chronic fatigue many of us get as a symptom of lupus (and of other immune dysfunction diseases & connective tissue disorders))...

am relating to your reply A LOT cause i often simply can’t read/understand discussions here, or emails, or pretty much anything at all complicated, especially if there are technical terms (eg instruction leaflets for meds, electrical gadgets, whatever), eg, my lupus started flaring after i fractured a bone in my hand early last October, and this also triggered my spine conditions flaring. flaring illness always makes my brain function even worse - making reading, understanding and responding to the correspondence & documents in a big long term project i’m meant to be part of IMPOSSIBLE...likewise i haven’t been able to participate here on forum.

I’m used to this pattern now. It happens when i’m undermedicated or flaring...so i just feel too mentally & physically “tired” and out of it to cope with stuff

Take care & good luck XOXO Coco

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thanks that was easy to understand. I don't know how to define a flare either. I just feel tired all the time and have pain all the time both can be mild through to really bad at any time as they seem to come and go through the day. I just try and push through the pain barrier or try not to sleep, it would be so easy to give I to it all and just stay in bed. I guess a lot of the time it's down to will power.

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It’s really tough...but, yes, my experience is that i do best to try & push through, JUST as long as i also let myself get extra ZZZZ in: eg during my worst years, i’d regularly spent 10 hours sleeping overnight + another 3-4 during the day....once my consultants had spent 3 years getting me on a truly effective daily combined therapy pharmaceuticals treatment plan my stamina + resilence + comprehension increased like magic...and i do still flare, but usually all i need do is slow down, do less of everything + increase the time i devote to ZZZZ...i HOPE your team help you find the right treatment plan SOON! XOXO

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Quick answer: In the US, chronic is anything that persists longer than 3 months. Say you have a flare and you experience it for 2 weeks. Then, you are fatigued but according the med system, generally speaking you are not chronically fatigued. Same applies to pain.

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seems logical.

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Yes huge overlap, great post . Thank you xx

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Wow, such responses! Thanks all. I'm in a bad flare so have to read them a little bit at a time, but just wanted to say thanks for sharing your stories and info. This is a hot topic. I'm off to the Rheumy today, so I will bring it up. My fatigue has improved but ONLY because I begged for a specific medication. I live in LA and on two occassions "fatigued out" in the middle of traffic. Scary and dangerous. I don't want anyone to get hurt.

Curious: I have fatigue that lingers (days mostly in bed) but I also have what I saw in the documentary where is slams me out of nowhere and have suffered many falls and sudden increases in pain. It's been a few years, thank heavens, but my gosh it was hard to watch as that was me. I still fatigued out quicky sometimes, but since I am mostly homebound, I can get to a couch or bed quickly. I call it that because it happens within seconds. It's bizarre and freaky.

I am lucky however. Unlike my ME peers, my rash will let me know that it's prob gonna be a bad day. Kind of related, I firmly believe that if you have a mostly permanent rash, that it is an indicator beyond UV exposure. Kind of like auras for seizures.

Love to you all. I'll let you know what the doc says!!

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Hope the rheumy appt went well katidid! Hope you’re ok - do consultations tend to leave your flares even worse?

I forget: are you diagnosed on the hypermobile spectrum? Have you been investigated re dysautonomia (i ask cause some of us on the hEDS spectrum suffer more or less the sort of “dips” you’re describing...which can be related to our dysautonomia...and usually are for me)

Take care XOXO Coco

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Funny you should ask! I now find going to any doctor stressful, so I do tend to get an uptick in pain and fatigue. It's the internalized stress of it as well as the travel. For a 30 min appt it takes me at least 3 hours round trip plus expenses. Blech.

So my diagnosis is technically "Lupus with Spondylitis Overlap Syndrome" ... with CNS involvement. It sounds fancy until you look it up and realize there's nothing on it. From what I've been told, before me there were only 9 documented cases of in all of English medical literature. I'm #10. I doubt that's reality - I'm positive there are more out there that are just misdiagnosed or not diagnosed as is usually the case. Still, it's ridiculously rare. To make it more obnoxious, my Spondylitis is not typical (although I doubt this as so many patients and docs don't even know the current classification system!!).

I laugh when I say this (and write it), but here's the *actual* breakdown. This is just the Dx, not the symptoms. Imagine how ridiculous I sound when I have to tell a non-Rheumy this list. They are like a deer caught in headlights LOL

(1) SLE Lupus with CNS involvement (temporal & frontal lobe epilepsy)

(2) Spondyloarthropathy (SpA)

- Axial and Peripheral Spondyloarthritis - early stage Ankylosing Spondylitis

- Bilateral sacroiliitis with encroachment into pelvic bone and spinae muscles

- Body wide enthesitis (18 locations)

- Psoriatic arthritis

That's the Dx. I have a notebook that I keep all symptoms and test results in. It's comically long. While my body is mostly destroying it's connective tissues, it's also started to attack organs, namely my brain, lungs, heart and gut. However, we just learned this past summe4r I have C. Diff so my gut will be much better once we get that resolved permanently.

Regarding the dips - I think you mean the crashes I mentioned? The first couple years are hazy. It's like they came out of nowhere. And, honestly I was too busy crying and screaming to log what came before. Now that they are milder, I am almost confident that they are stress related. That could be emotional or physical stress, sometimes both.

That being said, I've had a few that really stand out as strange but when I brought them up with my Rheumy he all but dismissed them. Instead of being overtaken in total, I had these weird ones where it felt like only my shoulders, arms and legs were fatiguing out. No pain, they just felt like they weighed a thousand pounds and then plop! I'm on the ground. I looked into myocitis (?) but it didn't match that.

The dysautonomia that you mention. I just looked it up and it's not super clear to me what it is symptom-wise. However, I have had instance where it was DEFINITELY my ANS and not my CNS driving the boat. Sudden slow breathing, extremely low blood pressure and "fading out" mentally. Not at all like a seizure, but it's like I just couldn't move, talk or react to anything. Honestly, scared the living bejebus out of me. Especially the slow breathing and not being able to move to get help.

Ideas?

May I say, I love your posts and thanks so much for this discourse!

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Myclonus? If yes, our cases seem to have quite a few similarities....eg chronic neuro cerebral manifestations inc myclonus s, chronic spine stuff etc etc...MANY THANKS for this BRILL discussion + EVERY detail in your fascinating reply...am too zonked after tapping that reply above to KayHimm just now...but would love to go into this a bit more with you if you feel like it & can bear with me cause i’m a v unreliable participant now due mainly to a lot of unpredictable health-related stuff having me under its thumb for the past 5 years ongoing...will TRY to get back to you asap...but am sure you’re aware that this forum is FULL of ultra experienced & knowledgeable folk who understand ALL this much better than me, THANK GOODNESS...cause otherwise i know i wouldn’t have been capable of becoming a less naive, submissive, and a more proactive patient who can keep try hard to help the health system help me. Thanks too for your kind words: these mean a great deal to me XOXOXO

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Looked up more on Dysautonomia. Yeah, I would say I have all but 2 symptoms based on this list. Interesting...

medicalnewstoday.com/articl...

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This is a great thread. I’m reading everyone’s comments with great interest. Thank you for all your contributions.

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This is a great thread. The comments below the BBC article are very interesting. I’ll have to come back to it when I’ve got over the cataract surgery which is rattling my brain ( during recovery I’ve been told no housework 😂 I nodded obediently at that because I’ve done bog all for ages).

All I can think of is way back when I first had blood tests at the rheumy clinic and I was ANA+ and Scl70+ my GP described the whole caboodle as “some kind of auto immune type thingy” I suppose he might/might not have brushed me off with ME/CFS (or Fibro as I was in pain) if I hadn’t had some magic markers.

I may be totally off subject here, but I’m too tired to think. Nudge me in a couple of days chaps x

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Good luck with your eye op

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great comments, good luck with your recovery . xx

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Hoping the surgery recovery is going well, and you can get back to the hoovering! 😂 xxx

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What is this “hoover” contraption? I feel I once knew the word, but, alas, have forgotten. Is it the plug in sucky uppy thing? I used to have one, must be here somewhere 😂

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Ah, sighthounds don't shed! 🤗 🤩 xxx

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I do and my knitting does though. I cannot tell a lie. It is three years since I hoovered. Those things weigh a ton!

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Sigh, I've been shedding dramatically and no vacuum device will lift the hair...timber floors may be the answer 🤔 xxx

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Yes it is. The hair and fluff can work its way between the boards ( mind you, mine are old). I call it extra insulation rather than being an idle slut 😂

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Draughtproofing between old boards! Genius! 🤗 🤩 xxx

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Great discussion! I have “chronic fatigue” as opposed to “cfs/me or fibro” listed on my current problems list and have had to correct several medical providers who skimmed my records. They also skipped over the parts of misdiagnosis etc. I now hate to get any doctor that is outside of my normal team of specialists currently working on my case. I would rather not go and die than go in and have to explain my medical history to some dimwad with a short attention span! 🔫🔪 . I really hope some quality research can be done and distinguish the differences so the medics can be educated.

D🏃🏽‍♀️

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