A thought provoking article re fibromyalgia (ment... - LUPUS UK

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A thought provoking article re fibromyalgia (mentions lupus & co too)

Barnclown profile image
40 Replies

I wonder what you guys will think of this article...here is the link:

medpagetoday.com/Rheumatolo...

Happy new year to you all

🍀😘 coco

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Barnclown profile image
Barnclown
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40 Replies
BonnieSue profile image
BonnieSue

This article describes a variety of ways to consider a diagnosis of FM. It's no doubt quite true that FM is underdiagnosed when doctors simply diagnose by certain tender points in the body. I found my own rheumatologist, while recognizing that I had FM, was uncomfortable with making a diagnosis this way. This article provides more diagnostic tools for any doctor who needs them. It's in the patient's best interests to be quickly and correctly diagnosed and treated.

I find Dr. Cush's two opening paragraphs contradictory but we can simply skip over them. The bulk of his suggestions are very valuable for diagnosing FM.

Speaking as a patient, I would fall into the apparently unique categories of one who could prioritize complaints, has a high pain tolerance, who readily acknowledges she takes very many medicines per her doctors' orders whether she likes it or not, would not come to an appointment wearing a 6 week old hospital ID band, would not "fold like a $20.00 card table when you touch me", and would not be taking ADHD medications. I can't help but wonder where in the world Dr. Cush gets all of these strange female (with "psychoboobalgia") and male patients from.

In summary I believe Dr. Cush has provided the medical community a great help in diagnosing the FM patient versus misdiagnosing and delaying treatment for an indeterminate time. I wish I could say he has done the same for the reputation of females in general.

Barnclown profile image
Barnclown in reply to BonnieSue

Great reply suez 👏👏👏. I don't have FM, but I am diagnosed with several of the conditions he mentions + compares & contrasts with FM in the course of this eyebrow-raising article. I did feel this conflict between his constructive diagnostic insights & his attitude towards patients....I read the article thinking: so, I wasn't just imagining doctors react to us this way....and what a treat it is to have this insight into what a very shrewd diagnostician is thinking/feeling about patients

BonnieSue profile image
BonnieSue in reply to Barnclown

I suppose the good doctor doesn't think patients ever read articles from the magazine Rheumatology. I could send a letter to the editor and surprise him, but I suspect it wouldn't bother him all that much. We don't have much clout.

cuttysark profile image
cuttysark in reply to BonnieSue

Don't know if it is just me and I agree wholeheartedly with Susz reply above but I found this article a bit scarey .That was until I read the five comments left by readersof it , including one medic.

That gave me hope! One of them actually thought it might be a joke!!!

But they are all very scathing and alarmed that a recent article by a Rheumatlgist could trivialise the very real suffering of patients and especially women struggling to cope with this most painful disorder.

Sadly I think we have all come across this attitude in our journeys and there are overlaps of course between so many autoimmune diseases and Fibromyalgia .That does not turn all those patients falling through the diagnostic crevice into hypochondriacs.

But then it is the fault of a struggling science that has not achieved an accuracy yet , in being able to accurately identify what is wrong.

As my old and wise GP used to say. The science is not there yet. The tests are not accurate enough.Too many people are being dumped on that miserable top shelf and fibromyalgia is a handy catch all term to label them with ,when they don't really know what is wrong.

Thanks BC for posting this, it is very useful to be made aware of what is still being thought still in some parts of the medical world!!

X

Barnclown profile image
Barnclown in reply to cuttysark

OMG: am going to read those comments under the article NOW!

Barnclown profile image
Barnclown in reply to Barnclown

Just read the comments: WOW: excellent stuff!

cuttysark profile image
cuttysark

Just realised your reply coincided with mine BC.

Yes, I also have not had that particular diagnosis but have quite a few friends who have it.

I think we should all be forewarned that those attitudes still exist out there.

We have to empower ourselves against medics who think like that and I suspect they are many!!

Amethyst profile image
Amethyst

It is disappointing that such a useful and informative article is let down by flippant and denegrating remarks about the patients he claims he wishes to treat. Is it mean to hope that he develops a chronic condition and is treated by someone as supercilious as himself?

Barnclown profile image
Barnclown in reply to Amethyst

My feeling is: whenever he does deal with a considerable health issue that directly affects his well-being, I hope he is as bold in publishing his experiences & ferlings about being a patient in the System! It's always great to read doctors' descriptions of being patients....I pounce on them when I find them

in reply to Amethyst

I agree with Amethyst, cuttysark et al. This article once again confirmed that the deep divide between the establishment of Rheumatology and us, sufferers. Just imagine you did not have your Rheumy (whoever it was) who recognised your SLE, you end up with someone like him (e.g. your life in hell). At the same time, it's useful to see this article as to how your Doctors think when assessing you. We all need to know our "enemy" LOL....

Barnclown profile image
Barnclown in reply to

👏👍😘🍀

Freckle1000 profile image
Freckle1000

Hi Barnclown.

I haven't read the article yet (but i will) as I'm already pre baked angry about my ex rheumatologist who is Australia's top fibromyalgia expert. He sits world wide on panels that 'define and constuct' what fibromyalgia is - and from my own reading of his so called research articles, he is an absolute mysoginist.

He uses terms like - neurotic - going to great pains to explain what this antiquated 100 year old term means. He's also fond of calling his fibro patients 'antisocial' ( ie psychopathic ) along with some other assorted negative DSM titles. ie. We women are weak yet dangerous.

I helped put my partner through a psychology degree and understand propper use of psychological terminology and understand what accurate psychological research is.

If this Associate Professor's research was not held in such high esteem & was so dangerous, his writing would be an absolute & laughable joke.

But he go's on being an internationaly respected pioneer in the field.

ps. He diagnosed me with fibromyalgia by pressing two tender points and a magical wave of his hand.

He also came across as highly competent and quite a lovely and caring man.

To be honest, the constructs surrounding fibromyalgia terrify me.

Doctors mis used the concept of conversion disorders throughout almost the entire 20th century. eg. Institutionalised psychiatric patients suffered - literally for years with untreated broken arms, legs & other real physical illnesses - because of the theory that psychological trauma/anxiety is converted to hysterical pain.

I'm a slight history nerd (studied a little bit) along with some anthropology - including medical anthropology.

Personally I see a really creepy similarity between the sexist, facile & overly subjective & imaginative ideas used back then by psychiatrists (influenced by that great feminist - Freud) and the language used by fibromyalgia experts and by extension - Rheumatologists today.

In places the language is almost identical.

This is especially worrying for women with a double diagnosis of SLE and fibromyalgia.

I was clearly diagnosed with SLE with lupus nephritis when I became this man's patient.

God help me - I became sero - negative ! And worse - anxious in response to being really unwell and repeatededly not receiving help.

This Doctor became absolutely fixated on my anxiety to the exclusion of everything else.

He was also head of Rheumatology at one of the largest hospitals in Melbourne.

Barnclown profile image
Barnclown in reply to Freckle1000

WOW: GREAT REPLY, thanks freckle

Fantastic description of the sort of horrors so many of us have endured to some degree. He sounds like a mega ego: one of the most grandiose & awful anyone could have inflicted on them😜

I don't know the lingo, but my feeling is that experiences with medics like these results in PTSD. I know for sure they have in my case: 30-something years of dealing with medics in a similar spectrum of dysfunction as your guy...I'll never get over this, but now I have 5 years of mainly joined-up multidisciplinary treatment under my belt, I am handling PTSD stimuli better...at least my nearest & dearest say so (inc my fav GP)

I could go on & on, but it's time for my famous nap...am so glad you replied

👏👏👏👏👍👍👍👍😘😘😘😘

Freckle1000 profile image
Freckle1000 in reply to Barnclown

Your right Barnclown -

I have PTSD too. (Probably obvious from some of my posts) The type that you cant just place neatly in the past. Every visit to a Doctor for me is now a trauma trigger.

I'm getting some psychological help.

Have an excellent nap.

Freckle1000 profile image
Freckle1000 in reply to Barnclown

Hi Coco.

I just read the article and now more clearly understand how I was bought to the brink of renal failure.

Its clarified my thoughts to the point of me 'almost' deciding to take what's happened to me to the Medical ombudsman here in Australia.

God give me the strength to take on these high IQ morons.

I will be printing off this article to take to a lawyer friend so she can get a clearer idea of the culture we are up against. I'll see what she has to say. She has witnessed first hand and in bewilderment what has happened to me, so I think she will be eager to help.

The discrimination has to stop.

Thank you for finding and sharing the article.

xxox

in reply to Freckle1000

Freckle - why on earth are you under such a chauvinist **? Is some medical S* going on? LOL.... Having such a "therapeutic" relationship can be toxic.

Freckle1000 profile image
Freckle1000 in reply to

Hi coniston,

Don't worry - he is no longer my Dr. What amazed me was there was absolutely no indication from him - or my GPs (every second one of them was trained by him). That he was utterly fixated on my anxiety. They just accepted his ideas as the voice of God (he is one of the most senior Drs in the state) and me as the sub normal female. None of his thoughts were passed on to me. It wasn't until in desperation, I gutted my medical records to see what the hell was going on that the horrific reality of it all was there to see. It was like a vortex. The ideas of the specialist was added to with some additional amatuer psychology from some GPs. None of this was discussed directly with me. When interacting with GPs I was met with awkward silences and sometimes overt contempt.

This is such an insight and confirmation of how many doctor gods across the world think - fascinating and thought provoking if outrageous thanks Coco.

I am always self diagnosising with CFS or Fibro so I'm not surprised that he can diagnose hypochondria/ hysteria while not actually using the term. I say this to myself all the time!

Self stigma is as much of a problem for many with invisible illnesses as the stigma we face from the world at large. Reading this polemic I'm not surprised some of us become so overwhelmingly unconfident about trusting our instincts that something is wrong.

A GP friend told me never to let myself land a diagnosis of Fibromyalgia or ME because this was doctor speak for having anxiety/ mental health issues. This was in the days when I had a fairly clear presentation of RA in the form of swollen synovial joints and high ESR and CRP.

Now four, almost five years later I fear it's a matter of time before my new rheumy comes out with a diagnosis of Fibro - although I think he'd call it FM secondary to inflammatory arthritis, which is currently in remission. If this happens and I'm feeling as I am today (ie well!) then I think I'd accept that this was the most I will get from the medical profession for now and turn away from rheumatology until or If something emerges again more clearly. Life is too short to be constantly self-stigmatising just because of doctors who can't accept seronegativity.

I don't believe I have Fibro for one minute and I think a good doctor will concede that this is a catch all term for what the medical profession don't yet understand.

The thing I most object to is when Cush speaks of his diagnostic criteria for this chronic pain disorder as including drug intolerance . "Multiple Chemical Sensitivities: patients with several or many drug, chemical, or environmental sensitivities (this is driven by their extremely low pain thresholds)." Does this moronic man not acknowledge that some people can be highly allergic without having a low pain threshold? or are anaphylaxis and drug induced lupus and drug induced pancreatitis all just figments of the overactive imaginations of such patients - primarily women apparently?

It is a good thing that a doctor spells this incredibly arrogant attitude out in print for his professional colleagues and interested parties to see for themselves how very possible it still is for the likes of Harold Shipman to sneak up through the very large cracks! I agree this Cush should be treated as a man with a personality disorder, typical of certain over paid, self-aggrandising doctor gods!

However I loved and was reassured by all the responses - including the ones here. I will now give extra thought to how I behave and present myself to my new rheumy a week today. Having gone from autoantibody equivocal with positive rheumatoid factor to totally negative - I fear that "Fibro" is probably waiting just around the corner as my new label. I do hope I'm wrong.

Happy new year all! x

Freckle1000 profile image
Freckle1000

Hi Twitchy.

I too am extremely drug sensitive.

I also broke nearly every bone in my body in a car accident and was told repeatedly by Doctors, Nurses and people generally that I tolerated pain more than remarkably well. I think a lifetime of lupus actually made me a bit tougher and more tolerant to pain and suffering. Not the reverse.

I think Doctors equate a sensitive mind to weakness. Its the culture they are trained in.

I had a psychologist tell me that she thought some of my problems with Doctors may stem from me having an artistic/instinctive - sensitive/emotional personality, whereas Doctors have an exact opposite personality profile.

Opposites do not attract.

What do you mean about giving thought to how you behave and present yourself to your Rheumy?

oops - sorry....... my god..... I only just now read the article.

He just called us narcissistic for being thorough? Wow.

Perhaps print off the article (a lot of ink I know) and ask your rheumy what his honest opinion of it is.

Whoa. I now understand more clearly how I was bought to the brink of renal failure.

Don't let a bunch of perverts with a pee and tit fixation change your behavior.

I know. easy to say when the discrimination is real.

in reply to Freckle1000

Hi Freckle. I can't act for toffee so wasn't suggesting this at all - certainly not for me. My old podiatrist once told me, the first time he ever met me, that I'm a very likeable person on first acquaintance and I must use this to my advantage with doctors. I haven't a clue what he meant but it was consoling in the face of battering from my family members that I've always had! "You talk too much - say things in four lines that you should say in one.." "You must learn to listen and not interrupt!", "mum if I'm a bit autistic then I know where I got it from - you take everything SO literally!!" (This was from my son with Aspergers the other day with other sons and hubby nodding in amused agreement!)

Consequently I'm completely paranoid and reading the points about patients who reply in long rambling answers and bring the equivalent in notes struck and awful chord - so this man has generated paranoia alley in me!

So rather than act I have to learn to be more succinct and rock-like I think.

My last rheumy seemed to be quite fond of me after four roller coaster years but he also knew that I was working as a volunteer in a way that was useful to him and he never referred to Fibro or health anxiety to my face. I used to send him bullet point lists and the odd letter about my progress which he explained in his quite rambling clinical letters was useful.

Not sure now if he meant useful in the way that this Cush meant ie "can't prioritise, causes me pain -adds to the harassment of my busy work load - off with her head she's another Fibro woman!"?

I just felt guilty when I read most of the points he made so assume it's me he's writing about in the generic sense! And yes I'm an artist so hard, cold scientific types do render me mushy and I must be on my guard because mushy is the opposite of what I want to be in these appointments.

But rather than cool I think I'll stick to maintaining eye contact and being as succinct as I can muster. All I really want this time is for the door to my new rheumy to remain ajar so I can come back and see him if things go bottoms up again. That's what I want

today at least. A week is a long time in my little world! X

Ps and I've already sent him a letter and a list of bullet points which I've asked some of my friends from this community to read and edit first. Where would I be without this wonderful community?!

Freckle1000 profile image
Freckle1000 in reply to

Hi twitchy,

I just edited my post after 'actually' reading the Cush article coco posted.

I bring in big lists, but if the Doctor has enough intelligence and empathy to ask the right questions, I don't usually need it.

In the past, often the length of the list actually mirrored the level of helpless desperation I was in when I was not being listened to.

One of the first studies my partner did in his psychology degree was on the differences between male and female teenagers in response to exam failures. Females blame themselves, Males blame external factors. You can take these findings and apply this difference to the age old dynamic of men blaming women when things go wrong. (burning witches, etc.)

I think this Cush P*#k is projecting his own narcissism onto his patients. Its what a lot of people do. When people who are so far gone up themselves they cant see daylight, they place unacknowledged inadequacies onto the 'women' in front of them.

He accuses his patients of being narcissistic for being thorough and verbal when as far as I can tell - his patients are just not fitting in perfectly with his enlarged ego mindset. He expects his poor patients to magically understand what his priorities are? Christ on a bike ! This man is extremely grandiose, indulging in dangerous sexist fantasy and negligence. Even Lupus should be seen as neurotic ? Wow.

OK. Now having had my rant, I can understand why you have been made to feel (excuse my Australian slang) but - mind f*#?@d by this bastard.

I come from a family background of chronic psychological invalidation, a dynamic that has repeated itself with Doctors in adulthood.

To be honest, even with all my theories, on an emotional level I'm still bewildered by this life threatening invalidation from Doctors that just keeps on keeping on - and know how utterly despairing and vulnerable it can make you feel.

It sounds like being your authentic self is the best option for you. There is no such thing as a wrong communication style. I think the popularity of your posts should indicate that you're communication style is nothing but positive.

Unfortunately for me, my authentic self is an angry homicidal maniac that wants to strangle any Doctor that crosses my path.

in reply to Freckle1000

Pants about your last sentence Freckle - hoping your dark sense of humour is at play and you see the worst in yourself as well as the medical profession.

My son's friend from uni told him that his dad is a GP in a remote part of the Scottish highlands. He shares many of my symptoms and my diagnoses and lack of to date. He has self diagnosed with a multi system autoimmunity which he describes to his loved ones as a mixture of RA and MS.

His message to me via his son was quit having expectations of the medical profession and accept that you will probably never get a diagnosis you believe in because we are still so terribly behind in terms of medical science and research. Ignorance leads to arrogance and this will always supersede common sense for many doctors. Acknowledging their failure to get to the bottom of our suffering is too much for the fragile ego of many so they blame us instead.

I met him a few weeks ago at our sons' graduation ceremony. We didn't get a chance to speak but our eyes met briefly and we identified ourselves in this moment. I am certain that he would make an exception to your doctor hating rule, born of terrible experiences. I like to think there are more doctors like him out there suffering alongside their patients. These are the people we need as our doctors but as out diseases are rare then I'm making an educated guess that these doctors are like diamonds or four leafed clovers. Being undiagnosed and untreated would make the working hours of being a doctor virtually impossible too I imagine - adding to their rarity. Just knowing a few exist is heartening somehow though and stops me hating the entire profession. X

Barnclown profile image
Barnclown in reply to

FANTASTIC DISCUSSION you're all having...we've had people here overnight, so am only just catching up with this thread. Yes, I've encountered a handful of relatively good medics in the course of my lifelong lupus saga...yesterday I saw my fav GP: she is a good 'un. But even these relatively good medics let themselves down at times...I tell myself: no one is perfect. But I think the specialisation underlying establishment medicine makes it harder for medics to be as good as they could be. And when something really complicated is happening, it takes all my self discipline and moral fibre to give even a good medic the benefit of any possible doubt...a large part of me is always expecting to be let down...I call this my 'disaster complex'...and I attribute it mainly to the PTSD I mentioned earlier in this thread...but I think you guys could put a much more specific label on it....something to do with my generation of women being raised with very low self expectations etc😟

Freckle1000 profile image
Freckle1000 in reply to Barnclown

Hi barnclown.

Having PTSD myself, what you just said just rang spookily almost 100% true for me. Although you put it in terms less deranged than I would. (Yes.....I do have a theoretical understanding that there are many well meaning Doctors out there who operate in complex conditions) but I think what we face when 'some' types of Doctors don't do their job, can only be interpreted within the spectrum of a very real dark reality. OK... warning - this is probably the PTSD talking, and as twitchy just mentioned, I do have a bad habit of going strait to the Dark Side. I am chronically jaded.

ok. Ive just deleted a large paragraph because I went too far into the shadows.

Below is me trying to make up for deleted paragraph -

I think acquiring a team of good Doctors that can work co-cooperatively with each other sounds like a real solution to (my dark paragraph). If you have a team of good Doctors, it does sound like you can actually let go? I'm following advice from this support group and constructing a team of my own. It makes sense that this is a safe option. If one Dr flakes out for whatever reason, another one can fill in whatever short fall occurs.

It go's without saying I obviously hate them both but - Its possible I have a good specialist GP & Nephrologist who have demonstrated this principle already - they have a good line of communication and one makes up for the failures of the other. eg. Kidney guy will lie to my face about drug side effects, GP is brutally honest about it. Kidney guy a slight genius with preventative pathology tests (obscure emzyme, bone marrow sensitivity tests etc) and over medicating just to be sure. He actually caught me out not taking as much prednisolone as I was meant to just by looking at the pathology tests he'd done - moungrel ! Got the actual amount I was taking precisely right.

GP quite propperly impressed by his tests, (sign that he's not overly arrogant) but picked up the slack by picking up on blood pressure problems - an issue that had fallen though the cracks in the early chaotic stages of the flare, quite important when you have lupus nephritis with not so good capillary wall damage.

I actually feel a bit safe at the moment.

Of course I'm just waiting for them to fail.

I've just started to see a therapist who specializes in PTSD and trauma. She doesn't quite grasp the complicated and grinding nature of dealing with Lupus, but she did point out to me that my "lack of a safe place" kind of upbringing has caused me to not have the warm and fuzzy place in my head that other people have installed in their brain automatically by being bought up by more sane & caring parents.

Hence, instead of experiencing the 'everything will be all right' feeling that normal people seem to click into - even after disasters, I'm always expecting people to fail me and my lupus to kill me - even though theoretically I understand some people - (even Doctors) can mean well and do their best in a difficult and complicated world and my lupus is somewhat controllable.

Shes a neuro-psychologist as well and has noticed the split between the thinking part of my brain - (the bit that recognizes that some people are somewhat ok. possibly even good) and the emotional part of my brain that, as mentioned earlier - is essentially quite reptilian & full of raw primitive rage and hate. Re: very strong desire to strangle.

I don't really enjoy admitting the

hate part, but it is a part of my PTSD that she extracted from me - kicking and screaming (metaphorically) in my last session with her. I have to acknowledge its there.

Apparently these two parts of the brain/mind are better integrated in other people?

Unfortunately when you've been raised by wolves, you tend to look out for them. If you step out of a cave and see a flower and a wilder-beast. You tend to take more notice of the wilder-beast. Sorry - euphemism spasm.

I dislike labels because as used by some psychologists and Doctors) as they tend only to describe and sometimes condemn while explaining nothing. They also tend to be used as cognitive short hand and can end up being very oppressive and traumatic for those who have been labeled.

I actually knew a counselling GP who dedicated her entire practice to undoing the psychological damage done by the DSM manual.

(Don't get me started on how this manual seems structurally designed for the minds of Doctors and how they diagnose disease eg - if you suffer from this & this & this, it means you have that - or rather in the psychological field ' you are that ')

Depending on whats going on in your life, people tend to slip in and out of these label states. eg. I have a reasonably half good functioning empathy system and somewhat understand what motivates people around me. But when I'm faced with grinding trauma, I loose the capacity to understand the angles people are coming from totally. Bad case of Lizard brain.

I am quite comfortable describing myself as having Complex PTSD. It essentially means I suffered some nasty psychological abuse as a child - (on an isolated farm), and have had to face too many bewildering traumas as an adult. Thus I see the world, the people in it and mother nature in different terms than usual. I like to call it rational paranoia.

I think the term 'chronic invalidation of female' comes to mind when defining my particular PTSD. In fact what has happened to my mind developmentally is actually something that is associated way way more with women than men.

ok.

I've taken to posting via computer rather than phone, and can see some rambling long posts coming on.

Apologies.

xox.

Barnclown profile image
Barnclown in reply to Freckle1000

BRILLIANT analysis & application!

You are a 🌟

I've had enough therapy (as an individual + as a sibling in therapy with other siblings) to dare think/feel I TOTALLY can relate to ALL of this

To try for a brief explanation: My initial PTSD is due to childhood molestation by a family member. That only got sorted in my 40s..took 10+ yrs of working with a fantastic therapist who is also my Alexander teacher (fortunate coincidence of disciplines). It took another 10+ years including FINALLY developing a reasonably good medic team for me to realise my fight & flight response to medics etc was just another form of PTSD. ...and that all my PTSD stuff is actually one big mashup in me, so to speak. Yes, I'm functional, but I'm constantly managing this stuff more or less successfully. I tell myself: the main thing is self awareness + self responsibility + confidence gained via repetitive successes coping with stuff that had always seemed beyond cope-able (inc anyone (even me, haha) being human enough to make a hash of whatever) + whatever form of mindfulness works for me

You put it so well! We've been living with Wolves, and for many years. lupus-type wolves, and all the others, eg medics

I'm lucky enough to have managed some truth & reconciliation with some of my familial wolves. But the actual perpetrator is dead, so have been dealing with that individual via virtual reality + surviving family. This means the world to me....Oh how I long to be able to do some truth & reconcillation with the medics who've been the most trouble so far for me!

am wishing you every possible success in managing all this...we aren't alone....it's great these dreadful matters are being more openly discussed

Happy new year freckle! Am so glad you're here

XO😉

Freckle1000 profile image
Freckle1000 in reply to

Hello Twitchy, (Sorry coco, this one ended up in the wrong place) Please egnore.

'Pants' ? I like it, but you might have to explain this local colloquialism in more detail. : )

Don't worry - the murderous rhetoric is more just a poetic expression of anger.

It might make more sense if I provide some context- Sorry, bit of a rant.

Something in my mind did snap a little during my last flare. I literally couldn't get any help anywhere. As you know its a horrible feeling.

But what actually flicked the trigger switch in my mind was - My local GPs acted like horrific bullies in response to a quite desperate internal complaint about not getting help - and a statement that I would not pay a bill unless I did - (I would have died without help after all) The next GP I saw looked at me with a blithe psychopathic expression - sitting dead still and went really out of her way not to answer any of my questions. When I realized what was going on, I asked some more ridiculous ones, and was met wih the same blithe response. When I went out to deal with the bill, she had tripled it, and not provided a public health gap. The next GP I went to made me stand up, pressed two fibro pressure points, I was about to sit down and explain why I was there - and she walked out on me saying she had 'patients' to see. I wont go into some of the more appalling stuff. But this kind of gives you an idea. They are the only GP practice we have access to, so they have become a law unto themselves. I was actually driven out of the practice - merely because they could do it. I had to drive a 200km round trip, while careening very quickly towards renal failure on top of a long standing dodgy pancreas. I was very weak, and very psychologically vulnerable - hardly able to communicate when I did reach the other Doctors. And then at first they didn't listen because at that stage I seemed mentally ill, and I had one of the best rheumatologists in the state.

It's a hard one to get over. I've been able to recover from Drs not doing their jobs in the past, but these 'people (?) took advantage of my vulnerability and really went to work - believing I was just a fibro hysteric who they could kick at random and worse still get paid for it.

All this is still a little fresh & recent, but I do take some comfort from other local people who have made it clear to me that as a medical group, they are not at all respected by their community and Doctors from other areas -and that's actually reassuring. It gives me a glimmer of hope that one day, I may believe some Doctors have a soul.

I've heard a lot of other horror stories since. eg. I Have a non related Lupus Aunt, who was driven out of the local emergency room, even with her family by her side trying to get help for her. Driven away by the head of this GP practice. She was only falling into a coma from an infection.

She survived, but only just. In the end, she had to be flown to Melbourne and put in a Hyperbaric chamber.

So when I say all Doctors require strangling, I'm probably referring to a more local cultural problem that I hope none of you over there ever have to confront.

(sorry, I'm gunna have to learn how to reduce the size of my posts) But its actually helped just to type this out and say it out loud.

x.

in reply to

Excellent lively posts by Twitchy, Freckles 1000 over excellent Coco's thread :-)

"My son's friend from uni told him that his dad is a GP in a remote part of the Scottish highlands. He shares many of my symptoms and my diagnoses and lack of to date. He has self diagnosed with a multi system autoimmunity which he describes to his loved ones as a mixture of RA and MS. "

Twitchy: you might not care to believe this but It's the freezing cold weather, an environmental factor, which would be pushing one's autoimmune tendency to go flare: humans are not meant to be polar bears totally protected by the thick layer of body fat and a bundle of the fur coat to keep their inner core warm and boosting circulation. If someone lived in Scottish Highland long enough, anyone would end up developing RA / MS / PD sooner or later. Of course, no offense is intended. I live in this cold climate since 2012 and my decline has been noticeable.

The huge impact from the sustained extreme cold weather could be immeasurable if you have autoimmune risk genes. As I might have mentioned before, since moving to the Northern part of England, symptoms of RA (roughly 3 yrs ago) reared its ugly head whilst previously, it was all systemic (SLE) living in the Southern England. Why freezing weather is a risk factor? Firstly, our blood vessels aren't quite normal given the longstanding onslaught of immune attack on our connective tissues (blood is also a connective tissue btw). Our circulation is all time poor, cold weather wouldn't help this. Once the circulation gets so poor, your tissues start to play up and eventually become hardened. Ok, this may not sound like a "proper medicine" but you might get my point. We, people, who have autoimmune conditions, are sensitive to temperature change / seasonal change / diet change /any sort of change in fact. Anything "extreme" or harsh, our body wouldn't like it. It would have been ideal if I could migrate to a warmer climate like geese before winter sets in and come back home in Spring. As much as I adore living in the Northern England, my body decided that I could have some more symptoms of RA / worsened Raynaud's.

autoimmunemom.com/environme...

Barnclown profile image
Barnclown in reply to

WOW: great reply & great link: even goes some way to addressing why warmer climate affects me so severely. MANY THANKS coniston: all makes good sense to me! your link's website is new to me: will follow it now!

in reply to

Yes I agree entirely with you Coniston 11. I recall asking my GP up here if I could have my vitamin D levels tested and he refused. His grounds were that everyone up here would have low vitamin D levels if tested so our normal is not the same normal as someone living in London. Later that year I got myself privately tested and, despite a hot summer and as much time outside as methotrexate and my fair skin would permit - it was only 28. My sister was put on D3 by her GP with a level of 52 down in London the same month!

I've been on prescription AdCal D3 ever since and within two weeks of starting it my severe depression had all but lifted and has never returned. But they do say RA is pretty much the same distribution the world over so my thinking is that this northern climate issue applies more to neurological symptoms than to joint ones because, apart from my neck and one shoulder, my joints are fine just now despite Raynauds and nerve pain.

misty14 profile image
misty14

Hi Barnclown

Thanks for posting such an interesting, thought provoking article of two halves I feel!.

The first part very informative then Dr Cush has to spoil it with his awful comments about how he diagnoses and views women!. It's apalling that these attitudes are still alive and well high up in the medical establishment!. Means we have to be on our guard the whole time, not easy when fighting illness.

Happy And Healthy New Year to you. Looking forward to more of your great posts.

Love MistyX

Barnclown profile image
Barnclown in reply to misty14

👏👏👏👍👍👍😘😘😘❗️🍀

Freckle1000 profile image
Freckle1000

I'm so glad your'e here ! You are truly an inspirational woman. Unfortunately I have to go plonk right now. But if you want to continue on this topic later in more detail, I'd be more than happy. I think its an important one to talk about.

xoxox

Barnclown profile image
Barnclown in reply to Freckle1000

🤗😘

Have a good plonk!

Am only just getting over first UTI+pyelonephritis session of the winter...not yet in good shape, so am even more of an unreliable communicator than ever (as you've no doubt realised)...have been following your thoughts here on forum, feeling:👍👍👍👏👏👏 am so glad you're here and that we're in touch. Only wish I was less whacko blotto and more regularly able to get it together on forum etc.....am just managing to be here at the mo. Am alright, just feeling my age or something. Enough said: just please do private message me on here if you feel like continuing and try to bear with me if I'm slow

XOXO

Freckle1000 profile image
Freckle1000

Hi Barnclown,

I hope you get over your 'orrid UTI. Not fun. I undertand totally. I'm a little bit in the same boat. When i had my plonk, I woke up and had to re-plonk. Mucking around with digestive enzymes to try and figure out wether I'm secreting any at the moment. Looks like I'm not. It's frustrating when you cant do what you want to do when you want to. Bloody chronic illness ! It would be nice if you could just have a holiday from it.

Just give me a ping when you feel up to it - no time limit. If i get a message sometime next year, I'll know what its about. And only if you want to.

ps. That Lupus wolf is very symbolic for us isn't it.

xxoxox

Barnclown profile image
Barnclown in reply to Freckle1000

👍👍👍👍

The wolf is mega symbolic for us

I try hard to let the butterfly get a look in, but the wolf comes more naturally

I like these terms: plonk & re- plonk: they really hit the spot

XOXO

Freckle1000 profile image
Freckle1000

: )

May your plonks be good ones.

I wish there was a way to get the wolves out of our heads. Perhaps if I stop trying to fight them off with a useless stick and instead treat them like the unwelcome pets I have to live with, I would do better.

I will now go float - ie attempt to meditate through the medication haze.

I don't think butterflies would work for me either. Our family had a very 'huge' beautiful loyal pet malamute. (Very wolf like) I'll imagine him sitting next to me being protective - as he was.

xoxox

Barnclown profile image
Barnclown in reply to Freckle1000

👏👍❗️ GOOD thinking

But the typing out of this stuff...the venting 'out loud' of the details of these ordeals, is REALLY helpful: thank goodness for this forum: gives the howling wolf plenty of space in the very best of like-minded company

XOXO

Freckle1000 profile image
Freckle1000

Definately : )

Maya23 profile image
Maya23

What an interesting article this is - the discussion too! I've just been diagnosed with Fibromyalgia after several negative ANA's in the last 18months and low ESR's (my initial first 4 ANA tests over the space of 2 years were all strong positive). I do think the diagnosis fits with my current symptoms.

I think I've been lucky with my Rheumatologist - he's been very helpful and I didn't feel patronised. I usually bring a piece of A4 paper with me to each appointment so I can write down my test results and remember which questions I wanted to ask him. When it came to my new diagnosis, I came ready to try and convince him there was something wrong even though my tests are coming back negative. He was quick to agree and suggest FM - and told me that he believed the Lupus for now is inactive. It helped that my husband came with me - if you have a partner or friend to come with you it helps with the way the doctors treat you - they take you more seriously in my experience.

Barnclown profile image
Barnclown in reply to Maya23

Dryad: congrats:👏👏👏👏👏 I wish you well in every way, but as things are I am so relieved you've got a convincing diagnosis now...and I think it's lovely your husband was with you. Thanks so much for updating us! Am glad you've found this discussion helpful...I'm quite overcome by the fantastic response my post has received...thank goodness for our wonderful forum

🍀 Coco

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