For those who have sustained bodily damage due to misdiagnosis or misuse of Fibromyalgia

Hi,

My name is Kerryn.

I'm from Australia and have been participating at this site on and off for about two years now.

I've noticed many posts describing the phenomena of being diagnosed with Fibromyalgia only to find out later on that individuals were really suffering from an un -diagnosed illness.

My ex Rheumatologist is a pioneer and leading world wide researcher of Fibromyalgia.

I was referred to this man with an obvious and active SLE Lupus diagnosis and have since sustained serious internal organ damage due to his strong fixation on his Fibromyalgia career focus and my accompanying 'Anxiety'.

I will be confronting this man either personally, or through AHPRA aphra.gov.au who's role it is to investigate complaints about medical practitioners here. This is NOT a financial compensation claim.

I'm writing this post as this Doctor is in part responsible for the construction of Fibromyalgia and as such I believe he needs to be confronted - and take responsibility for the horrific flip side endured by patients world wide. The flip side being either wrongly diagnosed with it or Doctors using Fibromyalgia to dismiss patients with serious medical concerns.

'As I have observed at this site - This can lead to permanent bodily and emotional damage'.

I'm not writing this post out of self interest. This Senior Specialist is currently held in high esteem world wide and is a major educator of Doctors here in Australia & internationally.

If he can be convinced ? - he might just have some power to stop Fibromyalgia being misused by is fellow medico's.

Please see this as a fellow sufferers attempt at a survey. Any response to this post will be shown to him - face to face with me present.

Any responses would be great.

Thankyou !

76 Replies

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  • OMG: kerryn, you're speaking my mind...I have been here watching a video off YouTube today...it's a rheumatology expert at Michigan univ deeply involved in research into fibromyalgia...clearly his work is angled towards USA chronic pain cases who are part of the huge numbers in the USA dependent on opiates...as I listened I became more an more uncomfortable because it seemed clear to me he could well be a sort of immune-dysfunction-doubter menace. To be fair, I've only watched 1/2 the lecture, & plan to watch the rest tomorrow. This medic's talk has good points, but enough aspects concerned me to make me glad he isn't my consultant. Here is the link:

    Am so glad you've posted about this. Never have I been even briefly considered a fibromyalgia sufferer, thank goodness. I can totally see how this diagnosis could be a sort of convenient vehicle for certain patients with widespread pain + anxiety, and also those endangered patients with diagnostic ambiguity which means they don't fit current criteria for specific immune dysfunction eg SLE & SS etc. Your case is scandalous and I can totally understand why you're digging deep to expose this man and how he has affected you.

    Am looking forward to following your discussion

    Am so glad you're here

    Take care & please keep us posted

    πŸ€πŸ€πŸ€πŸ€ coco

  • I am convinced that my particular autoimmune disorder is regarded as only occurring in "older patients" because many younger ones are told it is "fibromyalgia" (or depression or somatism). There are a LOT of misdiagnosed people out there. Mercifully for my problem there is no real damage done unless they happen to develop GCA - only older patients are allowed that too! Their sight is at risk if not recognised. But we suffer pain unnecessarily and I believe research is being hampered.

    Good luck from me too Kerryn.

  • GRRRR...my blood is boiling at the thought of these institutional diagnostic prejudices....and the suffering they perpetuate...don't medics vow to Do No Harm 😑😑😑😑

  • I suppose they often look at the drug effects and since they don't understand the level of suffering think the cure may be worse than the disease. After all - how often do we LOOK ill?

    I nearly wrote before - they aren't scientists. They rarely come to the thing with an open mind - those that do are outstanding. But actually, a lot of scientists are a bit closed-minded.

  • Thanks for your response.

    I promised myself not to become to flamboyant, angry or deranged on this post, but what the hell.

    Believe me - I'm not calling you neurotic !

    You have an illness - and if it falls into a nebulous area that Doctors don't quite understand - or make the effort to understand - then fibro type stuff creeps in.

    I looked at the research of (this Doctor) who doesn't have any form of psychological qualification. - It was full of every type of the worst possible DSM classifications that are associated with women and he was extremely fond of the word Neurotic - going to great lengths explaining its meaning. I believe the theory goes that 'neurotisism' and 'personality disorders' - dampens down post menopause.

    How many men have been diagnosed with Fibro ?

    Its natural that women often have a heavier work/anxiety loads - leading to lack of sleep, fatigue and muscle aches.

    By all means study it, but don't pathologize it.

    I come from a History/Anthropology (Fine art) background and I smell a massive bloody great whack of sexism and a re - combobulation of Freud's conversion disorder.

    Last century psychiatric patients where left with (eg) - one of many examples - broken arms for years on end - because it was assumed that the pain was psychosomatic. Ignoring 'hysterics' physical pain was totally acceptable 'possibly' because Psychiatric staff blindly believed in their own convoluted theories - and or just wanted to fit into the mob of sheep they called colleagues. They didn't stop to think about it at all. (or - and this is where my mind go's politically incorrect - some sadism might have been involved)

    As far as I'm concerned, fibro is just a sexist social construction that has horrifically has gained ground in the 'respectable' main stream. I fear now it might be entering the same realm as the conversion disorder.

    Apologies - that turned into a sermon.

  • BRILLIANT πŸ‘πŸ‘πŸ‘πŸ‘πŸŒŸπŸŒŸπŸŒŸπŸŒŸπŸ‘πŸ‘πŸ‘πŸ‘am SO GLAD you're here speaking your mind kerryn πŸ€πŸ˜˜πŸ€πŸ˜˜

  • Thanks Barnclown. : )

    I just had a look at the first part of your video.

    Am I wrong in thinking - Don't have your first period ? Otherwise your pain becomes brain amplification and/or misinterpretation of peripheral stimuli. He seemed like a good guy for a moment there ?

    Stigmatizing sensitivity perhaps ?

    I'll watch some more.

  • Am listening to him again today...he does have his good moments...but he does infuriate me at other mos...

  • I'm watching it right now. He flip flops quite a bit. One minute Fibro people are unresponsive to meds when injured, the next he's claiming Fibro's are drug sensitive. Also don't like the use of brain imaging and neuro - transmitters as indicators of science. That stuff is still in the primitive infancy stage - he's using the unfounded to prove something unfounded.

    My ex - Rheumatologist took the guise of savior and supporter of women in pain and I have no doubt he believed this of himself. Trouble is the female fixation bit.

    I'd like to make this man wear a bra.

  • Is that necessarily a contradiction though? What he wants to say is perhaps that Fibros react atypically to drugs - which they often do. Must find time to watch it properly...

  • Must admit, I'm horrifically drug sensitive - sometimes reacting to the same medication differently from day to day. Unfortunately my specialist is working up to some amateur psychological theories about this. Danger !

  • πŸ˜†am about to watch it now....wish we could all do this together...then talk it over...

  • Definitely. Gunna watch it all the way through now myself.

  • πŸ˜‰ok: watched the 2nd half...and did feel more warmly towards him (a Jeff goldblum sorta guy, no?). The slides linking types of condition with types of meds were especially convincing....

  • Dam it ! I cant spell - and he did make a lot of sense there towards the end. For me - I do have to exercise to feel better and I do do everything at once when I get a burst of energy - only to pay for it the next couple of days. His bad habit tips were really really good. Interesting to learn about his reaction to exercising. And yes to likable Jeff Goldblum type.

    But just out of sheer bitterness & spite I would say -

    Slightly freaked by such a sedate, calm - pain free man advocating some really really heavy doses of drugs - some of them horse tranquilizers. They would turn me into a functional robot. Anti-depressants plunge me into a terrible void so when he started talking about them I just recoiled in horror and tried not to think.

    Just to be a corny hippie - I think generally sensitivity is a gift. Even if it comes with a lot of negatives.

    Interesting about his ideas on war veterans & shell shock. Good non gender specific interest. But again, out of spite I would get pernicity about what causes a certain form of shell shock where there's a new scientific research regarding some neurological aspects. But that's an entirely different post at a different site.

    And its sheer belligerence on my part.

    Time to adhere to his sleep cycle advice.

    : )

  • πŸ‘πŸ‘πŸ‘πŸ‘πŸ˜† I did especially tremble at the doses of those antidepressants....😡

  • That's an interesting idea. As I live in SA I too was referred to a rheumatologist who failed to diagnose APS and told me to stop taking blood thinners. That could have been catastrophic. Said I was too old to be diagnosed with SLE and then dismissed my hypothyroidism by saying every woman my age has a thyroid issue. He failed to ask me when I was diagnosed with it - I was 25. I have often wondered about reporting him - I didn't think of APHRA. He then discussed the health issues of the patient before me. He was downright dismissive and offensive to the health care specialists I had seen previously at our large public hospital - within the first two minutes of my consult he called them idiots. I think in January next year I will report him to APHRA - once I have had a break to gather thoughts. I did send him a letter afterwards saying all the issues I experienced with him. Thanks for posting.

  • Puska - just be cautious about going down the APHRA route. In reality I'm a bit cynical about the APHRA process - some internet sites claim its a bit of a useless waste of time. Also - making a complaint like this can have a splash back effect. Doctors know other Doctors and if they hear about the complaint then all of a sudden your ability to see Doctors might dry up ? I'm still wondering whether just to have a normal face to face with him. It might be safer for me. It sounds like this guy needs to be severely beaten up. Perhaps my Rhuematologist trained him. : )

    ps.

    The Rheumatologist I saw claimed I symptoms I was having was fibromyalgia while I was flaring over a period of 15 years with a consistent ANA tiltre 1280. Massively under treated on 5mg of Prednisolone. That's pretty scary.

    But In reality I cant do much about him.

  • So according to him I must - at 64 - have a thyroid issue? Really not.

    And can any of you explain to me why I keep hearing of doctors saying you have to be young to be diagnosed with lupus? If it wasn't recognised you can have had anything for many years before it is diagnosed. If the symptoms are mild it can be years before they are bad enough to drive some people to the doctor. So what if over 90% are between the ages of 15 and 45 - that still leaves 10% who are not, half of them probably over 45. It's no different to saying 9 out of 10 lupus patients are women - there are men too.

  • I haven't got that far in the video. I did meet a woman who was diagnosed with SLE in her sixties (a support group dominated by late diagnosis) who looked at me with envy for my early diagnosis - the theory back then was SLE people who get the disease earlier - do better later in life ? Not sure about that one.

  • Suppose it will depend on a) have they a good doctor and b) have they organ damage

  • I too was never given the fibro diagnosis but educated myself enough to be ready to fight it if a doctor ever suggested it.

    I'm in Aus too. Can I ask what city this doctor is in just so I can avoid him if I ever need to?

  • Good to see some Aussies fired up here. I am in Adelaide and now se a fantastic female rheumatologist who is almost impossible to get into - a wait of 6 months for appointments. The first guy I saw I had an appointment within 2 weeks.

  • Thx Puska. Was hoping freckle could tell me where the doctor she was talking about is located so I can avoid him. I'm newly diagnosed and will need a referral to a rheumy sometime I guess. I'm in Melb.

  • For some reason I thought Sydney. I have no idea why.

  • Do you know how to PM me. I'm new to technology.

  • Hello 1985mum

    I'm from Victoria. (Western Vic)

    You don't need to worry. This guy is no longer taking on new patients. Perhaps there's already been a few complaints about him ? Apparently one of the rules here is not to name medical names - but PM me and I'll tell you. You may be shocked. He's also trained a hell of a lot of GPs so it might be worth knowing who he is - so you can sort out what GPs to avoid.

  • Thanks. I did PM you.

  • I name names - and haven't been kicked off!

  • I'd love to but I don't want to be sued for libel. This guy is literally a corporation. Me, not so rich.

  • Any names mentioned in a negative light do get edited to become (*****) unfortunately we cannot allow it on this site for risk of libel.

  • Ah well - I'm always saying how good someone is! Bet they wouldn't sue me for that!!!!!!

  • : )

  • Yep, we have no issues with names being posted in a positive way - it's great to share good practitioners so that other people can benefit :). Negative comments need to be kept to private messages on this site though.

  • Hi Freckle

    So sorry your having to wager a big battle against a Consultant with a very closed mind !. They are a menace as like in your case , can make dreadful clinical mistakes with dire consequences!. There are many consultants over here who are using the label fibromyalgia when they can't explain widespread pain and other symptoms!. I was diagnosed with it at the start of my long illness journey but luckily it was soon dismissed. I wish you luck with your battle , you've got many on forum right behind you and we look forward to updates. Hope your health survives this. X

  • Thanks for that misty. I'm proceeding very slowly and with caution. Hoping you are well now.

  • Hi freckle

    That's very wise, you don't want to jeopardise your health care with other Consultants as a result of this!. Sad but true as you need them more than they need you. I'm still flaring after flu jab eight weeks ago thanks for asking. TAKE CARE. X

  • misty14 so am I! I think I'd rather have flu than the weeks of pain, fatigue and swelling. Hope we're both feeling better soon x

  • Hi Clare,

    Sorry you too are flaring after flu jab. Nightmare isn't it?. My GP says that it shows flu would be catastrophic if I had it so I don't think we'll wish for that!. Hope you are better soon. I am improving. X

  • Yep, this happened to me; I was diagnosed with fibromyalgia in around 2002 and pretty much thrown on the scrap heap. Doctors won't look any further than that as a diagnosis and so for over ten years my illness was more or less completely uncontrolled. No one bothered to check inflammation levels. No one bothered to research any of my symptoms. As soon as they saw fibromyalgia, they stopped even attempting to help, and I slowly sustained permanent damage to joints, lung tissue, heart, brain, kidneys. It's my fiercely held opinion fibromyalgia is the body's 'early warning system' that something is horribly wrong, and should be seen as such, not as a 'all in your head' illness. But I take heart in thinking MS used to be considered a 'fake illness' until about 30 years ago, and is now taken very seriously. So there's time and there's hope.

    Taking this kind of thing on can be very messy. A friend of mine once said 'Medicine is the purest form of patriarchy I've ever encountered'. It is an 'old boys' club' even though a lot of the boys now include girls too...they're still playing by the boys' rules: close ranks. Don't admit mistakes openly, and rarely among colleagues. Always in the right, even if potentially wrong. Patients need to be 'educated and led' (which doesn't often mean listening to them). After all, they have the education, we're merely the people to live with the condition day in and day out. There's a fierce reputation to protect and they have the money, time, and legal backing. So I wish you great luck and strength.

  • Thank you for that reply. I'll be sure this Doctor at least reads what you've experienced. Whether he takes it in is another matter.....

    But Whoah.........10 years without anybody bothering to look further !?!? That's absolutely obscene. The abject consistent lack of regard for what patients have to say is terrifying.

    My damage is Kidneys, stomach lining, - minor liver/pancreas problems and peripheral nerve damage that's caused a very unpleasant - living in a milk shake sensation - much like a permanent jelly blob.

    I don't know about you - but I now have a weird PTSD thing now. If I become ill I go into a trauma state because I don't believe Doctors will do anything to help. (even though I seem to have a good set of them now)

    Absolutely agree with everything you said so eloquently. I was actually bullied out of a GP practice for upping my demands for help. (Made the mistake of making a formal complaint to the Administrative section) I only had an inflamed pancreas and hurtling toward renal failure.

    Thanks for wishing me luck and strength.

    -

  • Well if you're an overweight woman in her 30s, you're pretty much going to be told to cheer up and lose weight. In my mum's day they gave women Valium and wrote them off as hysterical. Now we are given antidepressants and told we have fibro. Only the diagnosis name has changed.

  • Yep. I have the additional problem of being overweight and middle aged. And Yes.....loosing weight and looking pretty will solve all our problems. After all - we all live to be attractive to men..... what social value do we have unless we look like a weak starved face lift on stilts.

    (sorry - I'm from Australia)

    My fibro man was always trying to sedate me. I was told pregabalin was a fibromyalgia drug. After taking it and not enjoying it very much I asked a psychiatrist what it was, He thought it was a just massive sedative.

    Its a creepy thing to acknowledge, but I believe misogyny and real discrimination marks the lives of a lot of Lupus women. After the feminist movement died down - I think we forgot how real and nasty it is. But your'e right - female Doctors behave in the exact same manner so my gender rant might not be appropriate.

    I had a male gynecologist tell me that my endometriosis was due to anxiety. A friend drew my attention to the origins of the word Hysteria. Its ancient Greek for uterus and back then a 'wandering and discontented womb' was blamed for excessive emotion and (Hysteria)

    (apoligies for being a history nerd) but with all our sophisticated medicines, the old thoughts and beliefs remain - scary as hell.

    I read what was essentially a promotion from an American pharmaceutical company telling Doctors to use 'this sedative' to warehouse sub normal people.

    What a lovely way to describe and deal with real suffering. These are people of obvious depth and insight.

    It gives you a good look at how some of them think. Gives me the willies.

  • On my home forum I and others were recommending Bowen therapy for patients we thought might benefit - not for the actual illness we have but for the add-ons. A GP on the forum (who did have PMR) decided this was all woo and told us so, we might as well dance naked under the moon. Many of us use Bowen with a lot of pain relief being the result and we all stood up to say so. This GP then told us all we didn't know what we were talking about, THEY had a medical qualification and WE didn't, the implication being we were all ignoramuses! They got VERY nasty when I posted to say I had believed the "I'm the doctor, I know it all and you know nothing" days were past - I was accused of vicariously running a GP surgery on the forum and I should go away and get a life! My posts got a couple of dozen likes - they left the forum...

    I don't need a doctor who treats me like that - I am an expert in MY disease, I know more about it than the average GP and more than some rheumies as far as I can see! In the UK in the NHS there is an "Expert patient" programme which is to teach the patient to manage their disease better (mostly diabetes) to reduce hospitalisation and other problems. It is frustrated repeatedly by patients being ignored and consequently mishandled. Both doctors and nursing staff are guilty. Others are furious - at least there are some enlightened souls!

  • Good Lord absolutely.

    The ego's of medical professionals ? way off the planet. I believe the Dr I wont name........as yet....was actually somewhat delusional. His confidence in himself was so far gone that he literally believed in his own unproven ideas. When I hit renal trouble he resolutely said it wasn't SLE. I dare say he genuinely thought it as anxiety.

    One of his research articles dismally failed to prove his point - but because of his high reputation he simply closed the article by saying - nonetheless this 'such and such' is true.

    And yes - you definitely get in the poo if you put forward your own ideas to a Doctor here. Until very recently I 'had' a good GP - but he was only temporarily useful due to the fact that he was young and willing to listen to what I had to say. But when I became a bit ill recently - I upped the requests for tests and referrals & he responded by saying yes - and actively doing nothing - for some time. Possible he had a bad memory ? Passive aggressive little man......... And this when things were becoming a bit urgent and I was going into a PTSD state. (due to past medical inaction)

    I'm pretty certain my Knowledge of SLE etc. was much greater that his (and to be honest that's not saying much) I don't think I'm near as savvy as yourself. A couple of times I actually pre -empted a test my specialist would want want done next - given the particular set of circumstances but he ignored my 'hints' only to have the specialist request them. I dare say a little embarrassing for him. So I was cast into the wilderness briefly again.

    Yes ! How dare we have half a brain and question authority. I was once told off for using the term 'psychotropic drug'. It became apparent that they and their profession 'owned that word' and it wasn't for my use.

    Here Doctors tend to go through a bastardization process in training so by the time they graduate - many have become bullies.

    I remember meeting a GP who had to fill out a simple form for me. I asked a legal question regarding it and he literally yelled in a rage - "Do you want this done or not"......... nice to meet you too.

    Turned out - the form was full of the legalities that I'd just inquired about. The look on this 'persons (?) face as he had to grind through the form was priceless.

  • I had that sort of experience when my husband had cancer - he'd had a cough for weeks and the "chest infection" hadn't gone away after 3 different abx. Then they did a peak flow - very reduced, must be asthma, take this inhaler. Did nothing. Then he coughed up blood - but luckily went to work (in a hospital) and told a colleague who sent him for a chest x-ray. Then the proverbial hit the fan. It was a massive tumour, not lung cancer, what is normally testicular cancer, so it was chemotherapy. He always had difficulty taking pills, now it was hell on earth so I had to grind all his tablets, every 4 hours, to mix them with honey for him to take. So I did my due diligence and requested all the stuff that came as liquids from the GPs. To be told you couldn't get them. So the net time he was in hospital - I mentioned it to the doctors and he came home with: ALL LIQUIDS! So they had to give the same. They were furious, and VERY nasty to me. i was classed as having interfered with "Their" job. That they hadn't done - nor did they. They made a similar faux pas with my older daughter - so I went back to her hospital consultant (she'd been discharged or I would have gone there first) who agreed with me - and told me to change GP! I did - best thing I ever did!

    We shouldn't have to do it though.

  • Yep. They're the penultimate projectors of their own deficiencies onto others. (one psychologist pointed out to me as if I was dim - that "of course their narcissists - only someone with an out of proportion ego would believe that they could do such a job and be able to sleep well at night")

    I had an ambulance driving niece in - law stay with me for a while and saw this phenomena in its full glory - up close and personal. She was an utterly bloody awful human being. I ended up kicking her out of the house when she came home one night and classified a suicide victim as 'scum' with a how dare he disrupt my heroic path kind of attitude. She also called an old man an 'idiot' for calling the ambulance too late and allowing himself to bleed to death. (ie. she couldn't resuscitate him) She was quite hateful.

    SO......Being quite familiar with this species of human, I know they have to think of themselves as perfect at all time, so If you question them or possibly suggest they might be wrong - Bang - you're gone - You're the one with the problem, not them. I think by virtue of the job - if they didn't start out as an egomanic, they'd have to become one to survive the job psychologically.

    Having said this - I know there are some caring, well meaning, hard working Doctors out there with only mildly enlarged egos. I'm just very jaded at this point.

    I actually spoke to Ros (at the psychological support part of the site) soon after I was essentially bullied out of my GP practice - literally for asking too hard for help. (only a two hundred km. round journey to the nearest other GP group) and in physical terms - I absolutely knew I was going to die without specialist help.

    Its close to one of the most bewildering and traumatizing things I've gone through recently. I was literally sobbing in a waiting room waiting for a needed injection before I permanently left the place.

    Ros said that according to Dr Graham Hughes Doctors do gang up and Scapegoat their patients when they push (whats considered) too hard for help - and this is especially so for Lupus patients. For him it's a recognized phenomena.

    I think I might be going a bit gothic for public viewing. I might have to PM if I go on with this point.

    Unfortunately its well past my bed time.

    I can re - connect with you tomorrow - or rather our yesterday. Please feel free to reply to this message while I'm sleeping.

    You're absolutely right - none of us deserve how we've been treated. What in gods name did we ever do to them ?

    Also very much hoping your husband is ok.

  • Hmmm - my ambulance driver in the family isn't at all like that- nor are the vast majority of her mates. I don't know how they do it - she spent a few months on anti-HIV medication (which is NOT at all nice) because of a needle stick while sorting a druggy. She isn't an egomaniac - maybe that's why she has PTSD...

    22 years on the husband is fine - well, as fine as a male whose chosen field is physics is likely to be ;-)

  • Yeah. I think this girl is probably quite special. I used her as an example of what go's on in the minds of 'some' medical professionals. (What lies beneath kind of thing)

    Here, I think its possibly more a problem of the area - a lot of petty small minded bigotry is culturally ingrained.

    I had a bunch of high IQ mobile intensive care ambulance people scrape me out of a bad car accident in the middle of nowhere who essentially saved my life - and I received calls from them afterwards in recovery to see how I was going - so I'm definitely not dis - respecting Ambulance workers.

    Very glad your husband is fine. Whoa ! physics. I'm in awe. (I lost my ability to do maths with my first flare) Super Brain.

    : )

  • You mightn't be as in awe if you were married to him!!!!! High performing maybe but he's definitely on the Asbergers spectrum!

  • Ahhhhh. Yes......We have a touch of that in some of our family.

    Took me some time (as in years) to figure out that one particular member couldn't read facial expressions and body language - or - importantly - know when you were in distress. Incessant talker as well. Literally never stopped. He was very very funny though. A bit like a constant Monty python character. And of course - very intelligent - his area was philosophy. He could take 20 ideas at once, analyse them simultaneously and draw a conclusion in about two seconds. And when i'd ask how he did 'that' - he'd take about an hour to explain every step of the analysis - getting distracted sideways in 10 different topics in an abstract way - coming back to the topic again and eventually getting some of it through my thick scull. Very brilliant. A mixed blessing......a lot of hard work - but he was wonderfull.

  • Hi there

    I had been told i have fibro based upon the process of elimination of other disorders a few years ago. At the same time i have hashimotos going on and i have just found out that i am ANA positive but i wasnt when fibro diagnosed and am waiting to see if i will get a referal to a rheumi or whether it will be brushed under the carpet!

  • Hmmmm.

    Really sounds like they shouldn't have jumped onto the Fibromyalgia band wagon so quickly. I really hope you haven't suffered too much in the interim.

    It will be interesting to see whether it gets brushed under the carpet. Reasonably sure with Hashimotos and a positive ANA - a person 'without' a fibromyalgia diagnosis would get a referral and a broad range of tests done with reasonable speed.

    They might get pernicity about the size of your ANA ?

    Don't let them get away with it !

  • i have what i think is a malar rash and i did back then too!! To be fair the rhuemi i saw here in blighty was a bit scepticle about the diagnosis of fibro. There were 2 other blood tests done at the same time as the ANA one so must have been a decent titre i guess but they were negative but i could kick myself as i dont know what they were!!! I shall be persistent fear not!! Thanks for replying Freckle1000.

  • Hoping they weigh up all the tests properly and they consider your reporting of symptoms as important. I believe ?!? Patient reporting is actually part and parcel of the diagnostic process along side pathology tests.

    Fear Not !

    : )

  • Hope you are right re listening to patients symptoms and not just blood test driven like endocrinologists who are blood test mad in my opinion!

  • For all our sake's - I hope I'm right ? I read not so long ago - when I was 'trying' to figure out some of my own blood test numbers (not great at maths) that patient symptom reporting is actually an important part of the Lupus diagnostic process.

    This was news to me !

    But I think this might depend a little on the Rheumatolgist. If you get a rotton one that obviously isn't listening, just keep looking until you find a decent one. A lot of people at this site suggest Lupus Specialists as a better option.

    I see a Generalist Specialist/Nephrologist. The general specialist bit of him comes in handy quite a lot - he's good at picking up on weird symptoms and the obscure internal giblets that might be causing them. If all else fails, I'd highly recommend a generalist.

  • I think i might need to move to Oz...i'm not sure we have such named specialists here without wishing to cast a negative view over all NHS specialists as i know there are some helpful ones out there.

  • I think I just got very lucky with this guy - at least thus far. He is extremely cantankerous though. A bit of a better safe than sorry over-doser with the medications. Despite his permanent state of high aggravation and barely suppressed rage he does work with me when I become 'non compliant' - (I think the medical term is) - with suggested medications.

    It might be a consultant specialist over there ???? Not sure ?

    I did a hell of a lot of Doctor hopping before I met this guy - so don't give up. Just be very very discerning. And if possible - hide the Fibro diagnosis. It actually does make a difference. You get treated with way much more respect without that on your record.

    I managed to obliterate it from my medical record by changing all my 'then' useless Doctors and changing GP practices and Specialists. Carried my edited medical history with me to the new Doctors. Sometimes I do a random spot check to make sure they're not conjuring up some peculiar psychological ideas about me. I've been lucky so far.

    (see PRMpro's response below)

  • Thanks Freckle. I'll take on board all of your welcome advice.

  • Hope I haven't lead you astray.

    X

  • I'm under a gen spec at the moment as well and the broad mindedness is like a sunshiney day! I'm fx he doesn't ever suggest referring me on!

  • YEAH !!!

    Mines like a ray of crabby sunshine. I'd say he's more busy than most Rheumatologists yet - he made a space for me during his lunch hour next week due to a digestive problem that wont go away. You're right - way more open minded - they can definitely see the bigger picture. Not fixated on the joints.

  • Ic1973

    See PRMpro's response below.

  • There are specialists in named fields in the NHS - you just have to know what to look for. When it comes to lupus I'm sure LupusUK can help. VasculitisUK certainly know who is who in their field.

  • Hi! I have 4 autoimmune conditions and have fought to get each diagnosis. I was diagnosed with UCTD just this week, by a fab rheumie here in the U.K. Who read all the notes I'd brought with me, listened to me (i.e. Treated me like an intelligent human being who is qualified by virtue of having lived in her body for 44 years to know when something's wrong - yes, this was a bit of a shock to me based on some past experiences!), and examined me thoroughly. He then wanted to know why on earth one of his colleagues had diagnosed me with fibromyalgia several years ago, especially in light of my various raised antibodies for the last several years....

    I have surprised myself to find that, on this occasion, I'm not angry. I'm just hugely relieved that I'm going to get the right treatment at last.

  • Hi Wooziesoozie

    What an excellent name

    : )

    I'm really glad that after all these years you were finally treated with the respect that you were due and now have the proper set of diagnosis.

    And also - thank you for your eloquence. 'Being treated like and intelligent human being who's lived in your body for 44 years - knowing when something's wrong'. I think you've just nailed it perfectly. Why is it so difficult to be treated with validation and care. And why in god's name weren't the raised antibodies questioned ? What the fippin' heck????

    I'm hoping you didn't become as deranged and bedraggled as I did when looking for proper multiple diagnosis. It hard enough to achieve one, let alone many.

    Also doubly glad that your feeling the huge relief (yes it is a beautiful mind space to feel safe and in control & not to have to flap about trying to save yourself all the time.

    Definitely going to show my evil doer ex Rheumatologist this.

    Thank you so much.

    Enjoy the normality !

  • I have enormous reservations about the flippant use of the fibromyalgia diagnosis. My Rheumatologist tried to stick me with it just over a year ago. During my visit with him in 2015, he threw a questionnaire at me. The questions asked if I had any of many different painful occurrences within the last 7 days. It didn't ask if I had worked excessively outside raking, trimming bushes, mowing, hauling branches and everything that goes with extensive yard work. Of course I had soreness! I had worked hard that week. It also didn't ask if my medication for RA might have been compromised in some way so as to not be as effective as usual. So in conclusion to my answers on this assessment, my doc rudely announced that I had fibromyalgia. Then he proceeded to include in my medical record (to shore up his quacky diagnosis) that I suffered from tension headaches/migraines, interstitial cystitis, anxiety/depression, temparo-mandibular joint syndrome and irritable bowel syndrome. What a crock! I have none of those things. I was livid and appalled that he could pronounce these untruths so freely in my record just it seems to provide evidence for his decision. I had to go to the top at that clinic and get the Medical Director and Risk Management people involved. They were supportive of my argument and my medical record is now correct--though the Rheumy doc was quite defensive I was told. I will never see him again.

  • I'm so glad you had the brains to dodge that particular bullet. Well done for finding a way to solve the problem quickly !

    I never cease to be amazed at the (for me) repeated ability of Doctors to make up their minds up about a diagnosis before any full evidence and then proceed to cram you into into the criteria by any means possible.

    And a questionnaire ???? He really made an effort there.... I just shows how ' ENTITLED ', (lazy, deluded and arrogant) anyone with a medical - (or indeed other types of para - medical degrees) can be. One idea makes all other possibilities go away. Pretty easy for them. Pretty disastrous for us.

    God god god god god GOD !!!!! Its insidious.

    When my 'Doctor' diagnosed me - all he did was press two tender points on the top of my chest, waved his hand and declared Fibromyalgia. I guess he concluded that my SLE symptoms filled in the other criteria.

    In truth the only criteria that I fall into strongly was Anxiety. And ironically that's due to a lifetime of not being able to get timely medical treatment - because of the assumption that everything was anxiety.

    Later during one appointment - when I was flaring pretty fast toward renal and pancreatic problems and trying to explain the symptoms he lost his lolly slightly and spat out at me "You have Fibromyalgia - you are going to feel chronic fatique and pain for the rest of your like and there's there's no cure" I've heard saying that to poor patients is a standard thing. Nothing like taking away all hope and rendering you - dare I say it - a helpless female.

    To be honest I wish I was as savvy as you on this one. At the time I didn't know anything about Fibromyalgia and saw it just as minor blip. I couldn't conceive what was about to happen to me.

    I'll definitely show this 'Mongrel' (as we say here) what you've said. Its a classic example of the underlying dynamic that just repeats itself - over and over......

    Big many thanks !

  • Fibromyalgia has criteria for its label: 11 of 18 identified trigger spots must show pain on palpation. Not 2. I had about 8 - not fibro, though other than that it could have been, but it responded to pred. Ergo, probably polymyalgia rheumatica.

    It's strange - the number of arrogant and disinterested rheumatologists around surprises me to be honest. I suspect they saw it as a relatively cushy number as a specialist and then discovered how few patients they met they could CURE - and just making life as good as possible for their patients isn't good enough.

    If it is any consolation there ARE some wonderful ones!

  • Thanks for the trigger spot information !

    I heard 'a theory' that if the pain responds to Prednisolone its not Fibromyalgia and if the prednisolone does nothing or makes things worse its 'seen to be' Fibro. I'm not sure how accurate this is - I never did a propper google research on it.

    YES. I tend to agree with you on the Rheumatologists looking for a soft - black and white job, only to be confronted by nebulous Lupus and various other complex immune problems they weren't counting on.

    Some of them don't even have any Lupus training at all on graduation. Yet these are our specialists ? More Lupus specialists PLEASE !

    I also think they might just get sick of seeing one person after another in pain and become frustrated. As you say - making life a bit better for patients isn't good enough. They either suffer compassion fatigue or turn to magical thinking.

    I did have an absolutely wonderful Rheumatologist in my early twenties. (28 years ago) One that practiced 20th Century Medicine. He could take one listen to my chest and diagnose lung or heart lining inflammation. (No trudging off for scans that don't show microscopic inflammation) He also gave me tips on looking at my fingers for signs of a flare - eg. redness coming down from the finger nails, and widening gaps between the sides of fingernails and skin. He was one of those Doctors that you never had to ask anything - he just did it.

    He was also the only Rheumatologist in Far north Queensland at the time - where a high population of Aboriginal Women have really high rates of SLE - and a more aggressive form. So this man couldn't muck about with moronic small minded preconceptions.

    I just wish people like this weren't so hard to find.

  • Yes - that pretty much sums it up I think!

    Certainly, fibro does not respond to pred. Whatever fibro is, it isn't inflammation which is where pred works. There does seem to be evidence that it is a disorder of pain perception - hence the ignorant who slept through their physiology and neurology lectures assuming that means it is "all in your head". Which REALLY isn't the same thing!

  • Yep. I totally agree with you. When I 'thought' I had fibro I wondered why it was the Rheumatologists studying it as it seemed obvious that it was one for the Neurologists. Especially regarding the deeper neuro processes going on as apposed to the attention purely given to the psychological - and the 'very wrong' assumptions that come with that.

  • It's like PMR (which I have) - it and GCA which is probably closely related are forms of vasculitis. But since the most obvious signs and symptoms are arthritic in form - it was assigned to rheumatology historically. And there we are stuck: with rheumies who insist they specialise in vasculitis - who are we to argue?

  • Hello Splendid and Wonderful Lupus Peoples !

    Thank you so much for you're reply's so far.

    I'm so grateful for your response to this issue.

    I have to go into hospital for about 5 days for a routine procedure (and don't have mobile phone)

    So please keep the posts coming. I promise I'll get back to you soon.

  • Ha - another dinosaur!!! I have a phone, 2 actually - but all they do is calls and texts...

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