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 !
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Freckle1000
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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.
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.
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.
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.
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 ?
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.
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 !
I know this is an old thread, but fibro is usually incorrectly diagnosed. It’s likely Sjögren’s syndrome - especially with drug sensitivity. I have a severe case of APS. Anti phospholipid Syndrome, my Rheumatoligist is Dr Jill Schofield in the USA. She trained under dr Graham Hughes. ( I also saw Dr Hughes before he retired.) I also have mild Sjögren’s. Dr Hughes and Dr Schofield say that Sjögren’s syndrome patients tend to be quite allergic/ sensitive to medications.
Thanks for replying - It doesn't matter if it's three years after. 🙂 I'm drug sensitive too & recently had a medication reduction & re - arrangement that's left me 'feeling' like I have fibro. I really think it's one of those underestimated factors with auto - immunity - just how much the medications can knock us about.
It's so awful that you were walking about with undiagnosed sticky blood and sjogren's because of the fibro label. I just wish I could wave a magic wand and strike the condition off the medical literature.
I gather so does the guy who developed the fibro concept originally!
I'm interested in the comment about drug responses - I react badly to some stuff and was very relieved a couple of weeks ago while in hospital that one or two of the doctors accepted it without even a twitch. The most useful was the pain specialist, an anaesthetist, who immediately made sure it all came under allergies on my notes so I don't risk a repeat of i.v. diazepam which sends my atrial fibrillation into orbit! They tried to smuggle in the statin that nearly had me in a wheelchair after a week but I spotted that.
I'm sorry you're body reacts so sensitively to so many medications.
I couldn't tolerate the first statin I tried ( psychological side effects ) but I can cope with atorvastatin - taken at night.
I take most of my meds at night to sleep through psychological side effects. I seem to be unusually sensitive to them that way. Even part of my prednisolone dose is taken - pre dawn/ at night. The Doctors really don't care when I take my meds - as long as I do.
Luckily I was never diagnosed with fibromyalgia. It did take far too long, however, to have doctors have joined up thinking about a low Lupus and it’s related conditions. I do realize it can take time for the disease processes to differentiate, or ,” show their hand “, and this can make diagnosis very challenging.
I am very concerned about women who and fall between the cracks, and have damage done to various organs in the meantime, under the ,”catch all, waste bin” label of fibro.
Again, just to bring home the original point, very often it’s actually ( perhaps early) Sjögren’s syndrome that the doctor has incorrectly diagnosed as fibro.
Yes. A lot of the time - people with early stages of undiagnosed Lupus - or other autoimmune illnesses have gotten snared up by the fibro label.
I think it's misused as an ' I don't know ' term.
The difference with me was that I'd had SLE for over 13 years when I was nabbed.
In a letter that came back to me after I put in the complaint - ' it's
technically impossible to diagnose Fibro in person who has Lupus - but they followed this statement with a lot of double speak - that still made it seem like a murky grey area for us.
They pretty much said it's technically impossible to diagnose, but symptoms include...........etc.
😉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.
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.
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.
I don't think that the official diagnosis of lupus has been around that long .... also, if we are over 50, for example, and are diagnosed now, it means that when we first presented with the symptoms, for example 20+ years ago, most doctors would simply have had no knowledge of it and would have not been able to understand the symptoms, hence diagnose it. They tend to forget the chronology of the 'discovery' of 'new' conditions/diseases.
The effects of having to deal with chronic pain can cause anxiety and exhaustion, and we all no doubt strive not to show it as best as we can: I was diagnosed as an anxious person, and every time the doctor told me that, I' answer that anxiety does not necessarily cause the pain, but chronic pain can definitely cause anxiety. The nervous system and the body's physiology are probably strongly interlinked and work in unison, but I am guessing this totally. It's just what I sense from my experience.
Thanks for you're response and good thoughts for my health.
Very much hoping you're not suffering too much pain.
Like you say there probably is an anxiety/pain & fatigue link - but I can only assume that pain should be pretty mild ? A bit like the aches and pain of not sleeping well for a while.
My first instinct on reading your post was - has any Doctors given you an alternative explanation to you're pain other than 'anxiety' - Have they done any in depth investigations ?
Given you're at this site you must have thought about Lupus - but it doesn't necessarily mean you have it - so please don't freak yourself out about it. Pain can be caused by so many things - but time should be taken to investigate it.
I understand this thread might be a tad disconcerting if you've been diagnosed with Fibromyalgia - and to be honest I don't know enough about the physiological side of the condition to dismiss it scientifically.
I've really only studied the sociological side - attitudes of Doctors - read some of their very unqualified psychological assumptions about women in their Fibro research.
I smelt a rat because previous to the renal flare I'd studied a bit of medical Anthropology and a lot of History.
Believe me - inaccurately pathologizing women on a broad scale is not a new pattern of medical behavior.
I was diagnosed with aggressive SLE Lupus with lupus nephritis at the age of 15. I'm now 49. It's been on my medical record - or at least it should have been..........for 34 years.
Now I'm suffering the serious consequences of - what was for me a horrific mix of discrimination - due to being anxious, female, and some very mild brain impairment 'literally' from past negligence.....(I've had neuro-psychological testing done and my verbal reasoning has stayed in tact - enough to get me through 5 years of University) but I'm not verbally eloquent when time pressed. By Doctors standards I'm also from the wrong social class and have the added bonus of appearing less well dressed and groomed due to increasing co-ordination/balance problems.
Lets just say I wasn't seen as equal to other patients.
And it's still continuing despite my best efforts. The raw truth is - all the power lies with the Doctors and unless you can politely assert yourself without getting their backs up - its very hard to get preventative and/or chronic health care management.
As PRMpro has said - at the core is sheer laziness from Doctors who just don't want to deal with complex illness - lots of hard work and none of the glamour or satisfaction of the quick cure for the productive and socially acceptable patient.
Whats also become pretty obvious is that - turnover and profit takes precedence over patient health. Here its a publicly funded health system much like Britain's. But within the small town I come from its become so obvious to pretty much everybody in the community what the local Doctors priorities are.
Apologies - that was a bit of a soap box rant.
But please be careful about Doctors fixating on you're anxiety at the expense of you suffering pain. Try and create a barrier of some kind like - "Its OK, thank you for you're concern, but I'm getting counseling for that - that's not why I'm here" - any excuse to get them to concentrate on their actual job.
Some time ago I was talking to an anti - discrimination lawyer who was sort of taken aback by the legal subtlety of Doctors using it to fob patients off. She was thinking in terms of intervening for me at one stage but was kind of flabbergasted because pre - diagnosis - they could probably just continue to argue it - despite anxiety being a natural reaction to pain and illness. (and for Lupus people - an actual symptom of the disease and its medications) Its a tricky one.
OK. I'm getting soap boxy again but 'Whats wrong with being anxious?' Its a perfectly normal human trait. I believe it comes with being sensitive and empathetic which is a good thing - (and dare I suggest - the psychological opposite of many Doctors)
Anyway - In the past when in deep medical trouble, my strategy has been to Doctor hop. Often one Doctors ignorance can be compensated by another.
If you manage to find a morally and medically good GP - they do exist - stick with them like glue. I have a reasonably half good one at the moment - but occasionally I sneak another opinion if he's a bit too slow off the mark.
First, I'm sorry if I'm not right on topic. I've been reading this thread and getting so wound up about my Doctors. I'm 48 and recently diagnosed with a positive ANA. My GP said the Lab did not include the titer because my results are "faint." I asked her to please do the test again to try and get the titer to help speed things up, as I've been waiting 3mos to see a (male - oh God!) Rheumatologist. I have 4wks more to wait. I have most of the classic symptoms and been in pain for many years. My hypothyroidism was diagnosed when I was 28, and then a year later I was diagnosed with major depression and severe anxiety (GAD). No surprise, right? I've been stuck on antidepressants ever since. I actually have to do regular urine and blood tests to make sure I'm taking my meds. I had a nice male psychiatrist for the past 5yrs who kept telling me there was something more wrong with me than psychological problems, which was causing my extreme anxiety. He said he believed that I was suffering from adrenal fatigue and maybe more, and to go back to my GP to get it sorted out.
Here is my current worst problem. I was assigned to a different psychiatrist. I'm in the US and receiving some free mental health services from my County. The new male psychiatrist doesn't want to hear Anything about my physical health problems, and wants to take me off my anxiety medication Klonopin (Benzodiazapine). I've been taking this for 5yrs. I find out his "decision" in 10 days, and I'm a nervous wreck. My GP will not put me on any immunosuppressive meds or steroids. I'm surviving my pain on Tylenol and Ibuprofen.
One final thing, I'm extremely curious about what socioeconomic class is supposed to get Lupus?Lol- What you said about that shocked me....that Doctors actually consider that too in diagnosing people. I used to look very put together too. But now, I can barely shower and dress before I actually ever go outside.
I totally agree with what you're saying about being sensitive. It must be a gift and it seems so scarce these days.
Thanks for everything you've written, and thanks for reading my rant.
I'm sorry I got you as wound up as me. Believe me I've been wound up. Good to be aware of the dynamics of Doctors - but don't let it make you as deranged as it's made me. Just know the tricks and figure out ways to react to them.
I really really really hope your'e Rheumatologist is a good one - 'They do exist' and I'm sorta hoping you can get to see a senior Endocrinologist as well ? I think in your case this would be vital.
I must admit I became a little bit more deranged when I read that you have a 'rather subjective'......(trying to be nice) new psychiatrist who wants to take you off Klonopin without consulting you in any way. Always nice to be invalidated as a human being.......
'RUN AWAY'
But if you can't - please make sure you're GP has forwarded the fact that you have thyroid problems and your'e getting investigated for an immune condition to this..... human ? (you'd be amazed how little information gets passed on between Doctors - I take a mini medical record in the form of Doctors letters with me wherever I go)
Also make sure that this 'individual' has contacted you're ex psychiatrist who at least had the brains and empathy to know there was more going on than just anxiety. Unfortunately specialists tend to be a tad myopic and only concentrate on their own specialties and ego's at the expense of broader issues. They also only consider their colleagues as fully fledged receptacles of all knowledge - as apposed to our good selves.
I take Azathiaprine - (Xanax) also a benzo. Here its a highly controlled drug - but only because of the ice epidemic - not because there's anything wrong with the drug.
Here benzo's are being mixed with ice (along with many other things - to make people triple addicted - not so nice)
Unfortunately not so long ago my regular psychiatrist - who had given me a long term 'authority' for the med - just retired without leaving a referral - and knowing how politically incorrect benzo's are with most other Doc's I was in desperate trouble. I cant tolerate anti-depressants - and because of some previous nerve damage I definitely can't suddenly withdraw from the stuff. So I can somewhat relate to your anxiety provoking pickle.
I had to make a frantic effort to find someone half decent and fortunately I lucked out. My current psychiatrist authority person says that for many with GAD - benzo's are the best option. She'd lost count of how many terrified GAD clients she'd come across because of all this.
I really really strongly feel that the argument should be made to you're GP - (and psychiatrist ?) that you need to stay on all current medications until you have a clear diagnosis regarding your'e physical problems. Your'e ill enough as it is without having to withdraw.
And just as a bargaining point - I'd also point out to these Doctors that SLE, neuro - psychiatric lupus - can physically cause GAD (as was in my case since the age of 9) as well as conditions mimicking schizophrenia and Borderline personality - (among other things).... and to bring your point home - if a withdrawal was to take place - it might exacerbate inflammation & cause further physical damage !!!!
"Gee- perhaps I should get some legal aid....what do you think Doctor" ?
Now in your'e case - all this might not be true - but when you're in a powerless and vulnerable position - sometimes you have to be a bit Machiavellian about it.
And please don't follow the above example......I'm just making a point. Information is power. Know your options.
I've only ever used a regulatory regulatory organization once before and that was when I was backed into a very desperate corner by some very unethical behavior - and I'd spent days - thinking and making sure that I had absolutely nothing to loose.
But please - if there's any way of avoiding this withdrawal right now - do it. If there isn't, demand a withdrawal that will not cause any anxiety of physical stain. If they can't offer you this. Walk away.
You have a right to protect you're health - Just because you're trapped in the psychiatric sphere - doesn't mean you can't protect yourself against all forms of harm. Trust your instincts.
Unfortunately I learn't way too late in life that - as anxious as I am - I'm the only one who has the power to protect myself. (although sometimes medical advocates - they come in social worker form here - can be of assistance)
Sounds like you have a similar double whammy discrimination to what I've endured - except your'e coming at it in a reverse fashion.
When I was diagnosed there was no knowledge of the psychological effects of lupus - so I copped a horrifying vortex of labels. Absolutely wacky Freudian stuff when I was a teenager - followed by 5 different DSM labels applied to me over a life time - all on completely different branches of the DSM tree. Looking back - the labels said a hell of a lot more about society and the labeler - than me.
I honestly believe GAD people are the most projected upon people on earth - and with me - unfortunately I've been more prone to not clearly spotting - the 'not so nice Doctors' because my mind either scrambles or freezes in the face of nastiness. More often than not I've walked out of appointments totally bewildered and overlooked due to Doctors taking advantage of the communication break down - and my vulnerability.
Please don't let yourself be hemmed in. Always demonstrate what little power you have. If you're able - keep asking questions of your psychiatrist until you fully know where he's coming from. If its unsatisfactory - try and find a way out.
It would be nice to have the money for a private one. If the money comes out of you're own pocket you become more of a customer who requires pleasing - hence a fake respect. (Sorry, I'm so jaded)
But its all so wrong that we have to fight like this.
But its a terrifying and dangerous fact that many Doctors will not listen to you if you're labeled as mentally ill.
I was in the throws of withdrawal when you replied!! Because in order to Not see that same cruel psych nurse ever again, and wait for my new psychiatrist to get back from his 5 week vacation, I had to tolerate a 2 day lapse of Klonopin. I made it through by taking Clonidine (BP med) and Neurontin. Then I got a bridge of a 2-day's amount of Klonopin from my GP. She is steadfast in not prescribing any psych meds, esp the Benzos because we have that government watch over these Class 4 narcotics now. But she is very much aware of just how anxious I am. I lose my ability to speak when really nervous or can't find words, or just give up like you said. We sound so much alike!
I developed horrible anxiety around age 10. My stomach would get really sick before school tests, and I cleaned our house like a fiend as OCD was taking over my brain.
My psychiatrist did go over all of my previous psychiatrist's notes for a long time, as I sat in silence on the other side of his giant desk. He even said Lupus is the Great Imitator and difficult to diagnose. So finally, he allowed me to have Klonopin but at a reduced dosage, 2 instead of 3 pills a day. He said that I am being slapped in the hand for bad things that others have done, like selling their medication. I wanted to scream but I smiled and thanked him. Sell my Klonopin?!?? I don't think I'd give it up at gunpoint.
So that's that for now. I have to do a bunch of blood work for this psychiatrist now--- probably checking me for street drugs. I don't mind. All recent blood work just shows more and more things off or not right, all pointing towards an autoimmune condition. He hinted that he will increase my dosage once I began making it to all appts with him. I missed one when I had Mono earlier this year, and that's what began this nightmare. My GP has offered to speak with my psychiatrist on the phone. I told him this and he just made a noise. I will try to get a simple letter from her. I had brought all my GP appt summary papers for each appt since January, a total of 13 visits!! He said he didn't have time to look at all or any of it.
I've had many DSM labels too including BPD, the worst to most psych professionals. But my psychologist straightened all that out by doing the full battery of psych testing on me, and for free. He's private, very sympathetic, and doesn't charge me my copay. The testing showed PTSD primary, with GAD and major depression.
Sorry for the long reply, and thank you for your detailed response. I'm sorry you lost your first message. That's so frustrating. Happens to me lots. Must be an anxiety thing.
God I hope you can eventually get access to a psychiatrist who takes the time to look at your entire medical record - he is a Doctor after all - he should know all aspects of you're health if he's gunna mess with your medications.
Always a lovely tactic to silently read your medical record and leave you sitting there. Nice power dynamic - especially for someone with GAD.
I'd actually ask your GP for a copy of his letters to her. He might actually be getting in the way of your health care ???? - putting everything down to anxiety.
ps. I just had a soggy brain fog squiz at your'e posts.
Just my amateur opinion but with your symptoms It really does sound like something on a cellular level is going on. Perhaps ask your GP, 'Gastroenterologist ? Rhuematologist - Endocrenologist - or Immunologist (sorry I'm not joking - this is what it takes - and unfortunately all these referrals make you look insane when its actually entirely necessary) for a diagnostic hospital admission/or equivalent ??? so a full gammet of tests can be run in a co-ordinated way? Hope its possible over there.
You may end up having to co-ordinate this yourself. I've repeatedly had too.
I recently suffered from delayed gastric emptying - I'm not fat anymore - and guess what - even with a full on 35 year long SLE lupus diagnosis - it was initially fobbed off as anxiety. After about 8 months of 'fighting' I'm just now out of hospital after lots of tests. Still waiting on results.
I've also suffered from benign breast lumps and cysts all my life and have no idea why.
Don't stop fighting until you have an answer !!!!!!
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.
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.
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.
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
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
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.
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!
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!
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 ?
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.
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.
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!
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 ?
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.
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.
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.
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.
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.
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......
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!
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.
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?
It's the same all over the world - they are the ones who have been doing it all along. Sometimes they specialise a bit extra and work in centres of excellence and sometimes they are better than average even when they don't. After all, all they can do for the patient is manage the symptoms. And then there is one who springs to mind who is an acknowledged leader in the field - and makes some pretty elementary errors these days. Too much time grazing in elevated pastures there I suspect...
Yeah. Agree with the qualifications and status of Doctors being no real indicator of quality of care.
I was very naive and young when I took on the aforementioned ex Rheumatologist and thought with all those multiple degrees and high status - that I could hand over all responsibility over to him.
Paying for that gaumlessness big time now. He was definitely way too far gone up an ivory tower.....among other things. I recently obtained his medical records. Its just years of constant - untended - highly active SLE. According to him this was all Fibromyalgia.........
For me - its been like a delusional search for the magic - answer to everything - perfect specialist who will cover everything so I can feel medically safe.
Now its a case of accepting that's never going to be a reality and learning to live with that uncertainty along with being hyper observant regarding the morality of the Doctors I take on now.
I had fibromyalgia for 25 years or this is what I was told I had, yes the only thing they gave me was a lot of pain meds, no test to see if it could be something else. About a year ago, I had a cat scan and a reaction to the radioactive iodine and end up with autoimmune thyroid disease graves. Since I've started treatment for my graves disease plus vitamin D, my fibromyalgia pain is gone and I don't take pain meds anymore. I'm weak still and probably need physical therapy. Yes, I was missed diagnosed and suffered for a long time. I'm getting better every day now.
For twenty five long years. That is utterly horrific. I'm actually lost for words that your suffering went on for so long. That level of human 'wrongness' has just made my brain literally implode.
I'll come back to you with a more composed & eloquent response very soon.
I'm very glad that you're getting better every day and that with rehabilitation you'll continue to improve. I'm hoping your path to recovery wont take too long.
I'm really so sorry that your graves disease was repeatedly fobbed off as Fibromyalgia.
I've just googled graves disease and I can see how this condition would have the classic set of symptoms to attract shallow facile superficial assumptions from shallow facile superficial Doctors.
I think it would be too kind to call all of them moronic sheep incapable of independent thought ?
I'm sorry to get all radical on you - but I think what happened to you is nothing short of sexism & discrimination. I really believe the classic misuse of Fibromyalgia that you've presented is nothing but this.
And as you've seen you're definitely not the only one - but the length of time you've suffered from this dynamic is obscene.
I'll be honest, I was beginning to shy away from formally confronting my ex - Rheumatologist on this issue - but after reading of your experience there is no way I'm not going to do it now.
I don't know whether I can make a difference, but I'm certainly going to try.
I started to reply to this, but it ended up that I was writing a book, so I had to quit. Then just now, I started to write a shorter reply, but it is hard to condense my experience with this. I can't even watch the video of Clauw, because this kind of thinking is so infuriating. Interestingly, there are recent studies that have shown that a lot of people diagnosed with fibro actually have small nerve fiber neuropathy, but it doesn't seem to have sunk in with doctors like Clauw. The other day, I finally asked my GP for a handicapped plaqard, and when I looked at the diagnosis it said "myalgia, myositis." I have been to rheumatology centers and seen many respected rheumatologists, and none of them think I have fibromyalgia. I don't have myalgia or myositis. I have documented neuropathy! I am going to have to look my GPs reports and find why they think they know more than the experts!
Myalgia just means muscle pain. Myositis is a bit different - I'd want his documentation to prove it (raised creatine kinase for a start). But maybe he did it to make it more likely you would get the handicapped card.
Yep..... I must admit I had trouble watching the Clauw guy too. The first two thirds of it I felt like mangling my computer screen to bits.
It wasn't so long ago that they thought Sjogrens was just dry eyes and mouth from anxiety and they bundled that into the Fibro bag too. Anything they don't understand properly is put into the - 'it's her' - 'not me' bag.
I understand your frustration in summing up the sheer monstrous reality of it all. If I were to try and document everything that's happened to me I'd have to write a book.
Its all a bit inexplicable. Despite a strong SLE diagnosis I still have to fend off some rampant stupidity and the same old assumptions from creeping back in. Even though I can rant on about sexism, discrimination and bits of old psychology & social theory - its still a very creepy creepy thing when it happens.
Dare I use an Australian term - I think they're having a W*nk. Creating complexity for their own amusement - possibly as a distraction from their own inadequacies ?
I am also from Australia and have had a positive ANA for many years. A couple of years ago a lot of different symptoms arose including a rash that was biopsied and strongly suggestive of lupus. Went to a rheumatologist who made up her mind immediately that I had fibromyalgia and dismissed any suggestion of an autoimmune disease. My GP was horrified as she said she has other patients with fibromyalgia and she doesn't believe I fit the bill. Another Rheumatologist feels I have an autoimmune disease and has me on Plaquenil which has really helped. If I even try to reduce the dose I feel much worse almost straight away. I think it is dangerous when Doctors have a preconceived idea of diagnosis and can not see past that. The best ones are the ones who are humble enough to keep an open mind. I believe if you're not satisfied seek a 2nd or even 3rd opinion. At the end of the day it is our body and our long term health at stake.
In the words of our ex prime minister - I'm still planning on 'shirt fronting' this Rheumatologist - who unfortunately has possibly taught a lot of other Rheumatologists in Australia. I'll include your'e response when I finally figure out how to approach him best. I've asked a lot of different regulatory and anti discrimination bodies what's best to do. They all say APHRA
It sounds like you have a good GP who's got your'e back. I think a GP who's willing to think for themselves and do the leg work is so vital.
I actually wonder whether the pre-conceived ideas and assumptions Doctors make about their patients is actually worse in Australia ? I've had to take a look at my medical record several times and am always astounded at the vortex of unfounded and unqualified assumptions made about me as a human being. I tend to be a doormat and not very eloquent with Doctors so I wonder whether its just a form of bullying someone vulnerable. (and with an illness they don't have confidence in treating) - they take it out on the victim.
I agree whole heartedly with PRMpro's statement that laziness is the main thing at play. I've walked in on so many appointments where from the start you just knew the Doctor wasn't going to do their job - and with these particular individuals - the harder you push them, the less likely they'll l do it - sometimes out of sheer pettiness.
Too much power on one side of the table.
Anyway. Many thanks for your response ! I will put it to good use.
ps. Could I ask you where the fibro diagnosing Rheumatologist was based ?
I am really truly glad that you've managed to dig your way out of that fibro hole you were in and have found some excellent Doctors. Well done for having enough wits about you to find them as you became more ill. I do believe it does take a bit of travelling and money to get some better quality care.
Hoping you're staying well. (I'll add your post to my collection - that's getting rather large !)
Thankyou !
And apologies - coz' now I'm gunna go into rant mode.
Its amazing how much power sits at the other side of the desk. Black can be white and up is down.
I really think - having an 'interest' in fibro is kind of a blanket label they can safely hide under for Doctors who have an amateur interest in psychology - and by that I mean - Doctors who enjoy projecting their very subjective assumptions onto their patients - especially the female ones - and putting that in writing with the stamp of 'The Wise Doctor'. (here they get one semester/6 months of psychological training during their entire medical degree) and most of that is rats and stats type psychology. Nothing to do with human insight.
I think that's really why its all so insidious. The profound unfair power dynamic. And when Fibro or anxiety etc. gets on the medical record - it can actually vortex out of control - one Doctor' s - 'opinion' - reacts to another - and then another until you're perceived as something quite abstract and so far from your real and actual humanity that it actually does blow a gasket in your mind.
My question is - whats so wrong with anxiety ? Why aren't we allowed to be anxious anymore.
Its a natural human emotion ! Why are Lupus patients condemned for it ?
Unfortunately I've gutted too many of my medical records not to see the all too human aspect of these individuals who feel almost obsessively compelled to stray from their own job.
I've lost count of how many times I've had to say - "I'm not here to talk about my emotional state - yes I do suffer from anxiety (reactive to seeing a Doctor - re: Barnclowns excellent PTSD mega post) I'm here because I have a serious illness - here are my symptoms". Of course if the Doctor is pre-disposed to the psychological - then nearly all the symptoms are due to anxiety. And I've 'really' learnt never to tell them why I'm actually anxious - that just tips their fragile narcissism over the edge - (ie: that couldn't possibly have happened) and then all of a sudden you've graduated to insane - and its strait onto the medical file. Their shininess totally intact.
I've recently discovered despite my best efforts - that I haven't been able to loose the Fibro label - and - the old - "its only anxiety" chestnut has followed me around again.
So after speaking to an anti - discrimination lawyer, I'm now going to a psychiatrist to get a certificate - clearly outlining my actual psychological state: ie - reasonably sane - except for a bit of medically related anxiety - to bring with me to appointments.
I've already got one on my medical record saying just that - and it hasn't made any difference !!!! Much to the frustration of the psychiatrist who wrote it. So a fully qualified psychological professional with years of experience has to write a more adamant letter. At this stage I actually doubt its going to work. The sheer arrogance of these Doctors actually feels demonically inexplicable right now.
This is because I'm doing all this in the context of developing new symptoms and having the same dynamic rear its freaky friggin' head again.
I don't know why I'm so shocked at this - but it still has the power to reduce me to a fetal position.
"GOD" The sexism & discrimination has to stop.
Whenever I google - discrimination by Doctors - all I get is facile self serving .*#$@. from the Doctors themselves.
Hi, I was referred to rheumatologist with suspected Lupus and dismissed without examination or even a glance at my medical history record (Coeliac's disease, chronic severe neuropathy). Charged$450 au for 2 mins if his time to boot. 12 months later I'm worse than ever so have to go through whole process blood tests, MRI , referral to rheumatologist etc blah blah) . But I'll make sure my Neurologist doesn't send me to the same pompous rheumy .. geez. It takes so long to get these appointments in the first place.. feel like I'm going in circles grr.
Sorry I've taken a bit long to get back to you - ironically due to some autonomic neuro problems of my own - seeing neurologist soon.
Yep - great idea to use your Neurologist for an appropriate specialist referral. You've got to use anyone you can get to find the right specialist - and don't stop looking until you find a good one who is truly open and who you can totally trust - (I've just ripped through two of them and I'm starting on a new one right now)
With my last dud specialist I was having protracted neuro problems and was a bit verbally and mentally compromised which....with - horrific monotony - was mistaken for mental illness. I was flummoxed as to what to do with - yet again - more inappropriate labels attached to my medical record.
But I lucked out with a receptionist who knew the nature of the staff at her department and steered me to the right person who was absolutely disgusted by what my previous specialists had assumed -and with some quick neuro tests and I quickly got a long needed neurology appointment. (She also prescribed some digestive emzymes / - some long term unresolved digestive problems) and now my mind is quickly coming back to me - long term malnutrition might have been effecting my nervous system ? )
These doctors are very poor at recognizing what is essentially a plain trauma reaction in the face of what I recognized (even in a brain fog) as a horrific repeat cycle of the past.
A lot of them are shallow arrogant bigots but by the same token - I know I have to fine tune my own assertive/communication skills which aren't really great - especially with trauma issues. Blind bunny in the headlight syndrome. I'm now in the process of accessing an advocate who can step in next time I'm so compromised.
Anyway -
After what I've been through I'd never go back to a Rheumatolgist. My type of SLE effects my innards most - so Rheumatologists looking for external signs - like rash or arthritis as a sign of a flare as apposed to listening to what I was telling them was utterly disastrous for me - a totally inappropriate specialist for me.
Unfortunately a lot of Doctors are prone to fobbing people with inflammatory conditions off - whatever discipline they're from. We seem to attract a lot of sexism and psychobabble. Doctors are usually lovely & great when they know what their dealing with - eg 'diagnosed' renal problems. But as soon as you develop new symptoms - instead of recognizing that you have a complex illness - and recognizing that they're too lazy or too ignorant to work it out - they decide that 'you' as the patient are the complex one. They project all their own nasty - not very self aware - psychology onto you.
I really wish that if they just don't know whats going on - they could have the humility to refer you on to someone who might - instead of blaming the victim for their ignorance.
I get the impression that the - you must know everything and be big and tough - medical culture here doesn't allow for that.
I recently learnt that (In Australia) being a public patient meant that one of my aforementioned ex- professor specialists wouldn't communicate with me by phone - but would happily speak to a private patient. When I half realized his - just to 'reality check' I rang & lied about being a private patient. What I got was an instant angry tirade and I was essentially told to bugger off to the ER - I explained I really didn't have proper one in the isolated town I live in - no radiology/pathology. She said she didn't care and hung up on me.
A new lesson. Our public health system isn't what I thought it was.
Sorry - turned into a rant - but only just regaining a clear head from this last battle.
But please please please - make sure that the one who should be co-coordinating your care - your GP is actually on your side. Sometimes the only way to tell is to have a good look at your medical record.
Sometimes GP letters trigger bad responses in specialists. They can be lovely to your face - but hide some awful opinions.
Sorry to be so bleak - just a bit jaded at the moment.
Really hoping your public health system stays in tact over there.
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Diagnosis
Anyone in Cornwall?
Fibromyalgia or Lupus
