This is a very controversial question, and one that may spark a bit of debate, but there are some very knowledgeable people on here.
My question is What is the difference between sero-negative lupus with minimal joint involvement and CFS/ME? Has anyone ever asked their doctor and what was the rsponse?
I have looked up past discussions about this subject but they tend to be discussing being dx with CFS then later dx with Lupus.
As you all know I'm a research freak and I have to have answers for everything. I see this as a way of being proactive.
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1985mum
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Intriguing question. Had medics, say, looked more closely at my overall symptomatology back in my early/mid 30s when I was flaring badly...and the NHS was blaming everything on my spine condition...I now know I would've met the lupus diagnostic criteria in the table I posted earlier this week....BUT, personally, I thought I had CFS/ME: because CFS/ME was BIG in the media at the time. Of course my medics never mentioned CFS/ME re my case. I am now 62 and my infant onset lupus diagnosis was recovered + SLE treatment begun in the NHS 5 years ago
Since then I have been telling my sister in law (who was finally officially diagnosed with ME in Cornwall in her 60s some time ago), that I think her symptomatology has a lot in common with mine from the point of view of fatigue & suseptibility to viral infections. But otherwise she continues not to satisfy the diagnostic criteria I posted.
Each time I have my BILAG reviews, the research rheumatologists mention how much more they need to understand about immune dysfunction & connective tissue disorders....they are highly aware of the known unknowns etc and forthright in saying so. I just want to live long enough to see researchers crack this stuff: my feeling is that this will bust the current diagnostic labelling system wide open
Looking forward to following your discussion 🌟👍👏
🍀🍀 coco
Your question isn't controversial to me - it's very relevant. I've been diagnosed so far with seronegative RA and Hashimoto's Hypothyroidism. Five years on from the RA diagnosis I appear to be a bit freaky because, rather than attacking my joints, my RA has attacked my small nerve fibres everywhere. No one will treat me, despite fluctuating inflammation markers and these paired Oligoclonal bands in my spinal fluid. I did try four RA drugs over four years, and steroids - and all helped a lot with symptoms but caused serious allergic reactions.
No one has said I have either Fibromyalgia or ME but I'm not quite sure why they haven't because I do have so many of the characteristics and even my widespread small fibre neuropathy has not shown up in skin biopsies taken a year ago. I also have Sicca, Raynauds and other connective tissue disease features on my list of diagnosed conditions and yet I don't have true versions of these to my mind - the neuropathy would account for mild sicca and circulatory Issues. But instead of telling me it's all in my mind outright, or that I have Fibromyalgia or ME - they revert to my historic seronegative RA diagnosis - apart from my very black and white rheumatologist who shrugs and says it's not his bag because my autoabtibodies are negative - so my problems must lie elsewhere.
I think it would be easier to live with the label of ME or Fibro than this pass the parcel, and I really don't see how they can distinguish in my case?
Well put twitchy 🌟👏...in my case, nhs medics locked onto my chronic early onset spine condition & remained determined to blame my progressive multisystem debilitation & symptomatology on that condition...despite all tests indicating other cause/s...meanwhile they gave me prescription meds that we now know were harmful due to my connective tissue disorder...and basically they let my general condition deteriorate for 30 + years before finally my symptomatology was so severe & visually unavoidable + my disablity so great that FINALLY I was worthy of referral to the lupus & Vasculitis clinic @ an internationally famous NHS teaching hospital where lupus was immediately recognised & my infant onset diagnosis recovered....and 5 years on am feeling generally better + am less disabled than I've been since my 20s. Not unlike you & the RA label & your diagnostic ordeal...I know I go on like an old record about this...but my feeling is that my lifelong saga illustrates all this v effectively
It's definitely not easier to have a label of either ME or fibro, as once you get a diagnosis from either of these, health professionals eventually just give up on you! I was eventually diagnosed with seroneg RA as well but it took years before anyone would bother to look at the symptoms, because of that wonderful 'fibromyalgia' diagnosis I had. This is probably why you may have some indicators but no one is putting it down anywhere...be grateful. There's no treatment other than a leaflet and a 'good luck'.
I'm pretty certain fibromyalgia is an 'early warning system' that something isn't right, as it seems to be co-morbid. When I was first diagnosed it was mild, but slowly got worse over time, although I couldn't get anyone to listen. Unfortunately, like ME, every symptom you have gets thrown under the fibro diagnosis if you have one and it seems impossible to get investigations until the damage is done. I now have permanent damage to joints and organs, all because fibromyalgia is a fake illness in the minds of many pros, and therefore it was 'all in my head'.
I think the problem is they become 'throwaway diagnoses' which means health pros will pretty much ignore and give up on a patient once the diagnosis is tacked onto your medical notes. The mentality around 'mystery illness' needs to change...perhaps there's no such thing as a mystery illness, they're just undiagnosed.
In any event, what I decided to do was to act as if I have been diagnosed with lupus; I know I'm sensitive to sunlight, so I use sunblock and cover up. I know the RA attacks organs, joints, etc, and so in addition to the treatment I currently get for that, I add supplements to help support my system which are recommended for both RA and lupus patients. I support my thyroid function as I am 'borderline hypothyroid' (that nomansland of 'fine' which clearly isn't). At least in my case, the steps I take to manage RA and the steps to manage maybe-Lupus are along parallel lines, so it works.
It's useful to have a label for the sake of getting some treatment, but some labels are more damaging than others. And there really isn't any treatment for some of these conditions anyway - it's about self-management. That took a while for me to get my head round; I thought I would get treatment, which would mean almost cured! There isn't one - that was really hard to accept, but I got there eventually. Sometimes, all there is available is finding ways to cope.
Yes great reply indeed Silvergilt. I do same re acting as if I have lupus rather than RA. And you are entirely right of course about not wanting the Fibro/CFS label - of course I don't for exactly the reasons you outline. I'm rushing as meant to be setting up a holiday let business in our old house today and tomorrow so I expressed myself badly.
What I actually meant to say is that I would rather doctors came out with with what they actually think rather than hedging about and passing me round like the parcel no-one is willing to rediagnose. If they think it's all in my head I want to know this so that I can do battle with this notion properly, because I'm certain it isn't.
If im overthinking and joining up the dots up wrongly as they say - then they should join them up themselves and I wouldn't have to! And I think they know that something systemic is occurring for me too but as they wont treat me again unless the synovitis returns, I am no better off for the hedging and passing the buck as i would be with the wrong diagnosis - which I would fight tooth and nail!
This is the plight of the highly allergic person I suppose - but being so allergic should help them rediagnose me rather than endlessly fob me of with "just this...only that". Seronegativity leads to fire fighting or unnecessary damage of organs, joints and morale. If it's acknowledged properly then we can learn to self manage it better.
I agree that CFS/ Fibro is usually a non diagnosis and doctors can then use it label us as neurotic. But you can't fight your corner properly if you can't see your enemy because it's all wrapped in subtle doctor code! That's what I mean. There's a fundamental lack of honesty about their lack of knowledge and understanding, which prevails in the medical profession at large. Barnclown's team should be applauded for their willingness to admit how little they still know - but they are the small minority. So I feel it's a case of know thine enemy a lot of the time just now. And self managing is my middle name!
Well said, Twitchy....just feel I should clarify: it's the research rheumatologist who give me my BILAG reviews that talk openly about the known unknowns...these special research professionals are deeply into solving the puzzles that vex most of us here re immune dysfunction & diagnosis & treatment of immune dysfunction & connective tissue disorder. They operate from labs & from special rheumatology research depts & clinics at major hospitals...usually teaching hospitals like the international teaching hospital at which I attend Lupus & Vasculitis clinic. The chief of my L&V clinic is a professor herself, but is also a very busy clinician...at our Lupus UK local group Info Days she & her colleague chief, who concentrates on Vasculitis, gives great talks in which they do tend to make it clear that we have a LONG way to go in order to REALLY understand this stuff.
So, yes, I too applaud all the enlightened researchers & True Detective clinician's out there...and I feel vvvvv lucky to be in the care of some here....and also I feel determined to make sure our forum knows there are some good guys like these operating within the system...as much as I am deeply dismayed by how many of us aren't seeing "good guys", I'm increasingly encouraged that there are a few of us lucky patients here on forum...and I fervently wish success to you & everyone seeking effective diagnosis & treatment: never say never... After all: I did finally find my good guys only after 30+ years languishing with cumulative debilitation, extreme reactivity and a series of near death emergencies while being patronised by the system XO😉😂🍀🌷
PS in case anyone is wondering, this link explains BILAG:
The British Isles Lupus Assessment Group (BILAG)
This is a UK based group of lupus experts led by Prof David Isenberg that has been studying how disease activity can be accurately measured in clinical practice and also in clinical trials. This has been a long process of evolution, constantly refining the measures we use to quantify disease activity. The BILAG group is also a very cohesive group of lupus clinicians that has collaborated on many other studies.
Wow...very well said. And it hit home. I have been diagnosed w/ FM also and it's very frustrating as I have some symptoms that don't fit, yet there is no move for further investigations. Being vigilant in self-management is apparently the route I will have to take. Your last paragraph really hit home. Thank you for that!!!
You've posted a very interesting question , one that I haven't asked any doctor but feel I can attempt to answer because I have a friend whose got ME of longstanding and she's housebound!.
The fatigue in ME is more extreme and they have muscle pain more than joint pain. Other symptom differences might be mouth ulcers and hair loss can occur with lupus , not so sure about ME.
I too will be interested to see other replies to this. Hope it's helpful. X
Hairloss, muscle and joint pain are also common symptoms of other autoimmunity such as hypothyroidism, primary Sjogren's, Coeliac's disease, some types of Vasculitis and B12 deficiency. I do wonder if doctors diagnose CFS and Fibro much too readily without investigating and ruling out all of these first. Neurosis and hormones are too often attributed as cause of a person's symptoms. But I think anxiety and neurosis most often are a natural response to these symptoms rather than the other way round.
There is a prevailing body of opinion in the thyroid community that ME is almost always actually unrecognised thyroid disease. My endocrinologist (a thyroid expert) explained that if every baby had their thyroid bloods checked at one year old, doctors would then know what a person's normal range thyroid bloods should be.
There was a new CFS/ME clinic near where I used to live and I asked to be referred but the GP refused on the ground it was only for "new" patients and all they would do was tell me what I already knew. However, later I met someone who was under this clinic and she told me that the top bod tended to treat all his CFS/ME patients as if they were hypothyroid - with a lot of success.
I wonder if hypothyroid and the acceptable levels are a bit like vit D - in that a few years ago in the UK 30 nmol/L was in the "normal range" for vit D so ignored if it was measured at all but now that is known to be sub-optimal and that 75 is the bottom end of the range you should be looking for.
My cousin developed hypothyroidism post baby No 2 and has a constant fight with new doctors who tell her her markers are too high and she needs less thyroxine - her original consultant had accepted very quickly that she wasn't OK unless she was on a higher dose, whatever her markers suggested.
I am one of those weirdly sero negative just about everything people !!
It has been so so frustrating over the years but as I worsened the autoimmune component of all this ,rather than fibro or ME, was found out really by accident.
I had years of investigations at Rheumatology for joint and muscle pain and weakness,put down in the end to maybe Fibro, but even they were not sure! I had the usual joint and muscle pain and weakness, rashes Sicca , but pancreas and biliary involvement too etc etc.
My treatment and action at last came by accident as I had an operation on my cervical spine and was given a large depot injection of dexamethasone, a strong steroid. Suddenly almost miraculously all my previous symptoms dissappeared and that was when the Rheumatologist took more notice and became very interested.
They then began me on low dose steroids which I have been on since, by way of depot Medrol injection topped up with oral Pred when I need. The plan is Myco next but I have chronic severe gastritis and stomach bleeds which have flared recently so they are going carefully on the drugs. I am also allergic, just like Twitchy ,to lots of drugs.
The general feeling with me was that I had something in the Lupus Sjogrens spectrum but they are now thinking something IGG4 related as I also have heart symptoms controlled by the steroids.
My Rheumy now says there are a few folk like us who don't fall into any category but whose illnesses will be definitively diagnosed in ten years or so when the science has caught up!!!!DNA testing will be the way forward.
But he feels strongly we still need treated or symptoms could worsen and cause damage.
Best thing you can do is find a wide thinking Rheumy if you can? Ask around on here and hopefully you will find someone who will think out of the box.
I remember reading a book by an Americal doctor , I think he is a neurologist , a Bengemin Natelson, will try to find the name of it. Anyway he was referred many patients who crossed over the ME , CFS and Fibro areas but had completely negative bloods. He said he always did a steroid trial first with them and a positive response usually meant there was an autoimmne disease going on underlying everything.
Good luck with getting an answer, it is so so hard struggling on against a nameless enemy!!!
Fascinating reply! Isn't it fortunate when the medics log that we're reacting remarkably in an unexpected way to a med...so diagnostic light bulbs go off in their heads...that must've been a vvvv special moment for you cutty...do you recall how you felt at that 'injection of dexamethasone surprise benefits moment'?
Yes Coco, because the major problem was the gastric one and my inability to eat virtually all protein!!!!
The next morning it all kicked in and what was weird was that I knew instinctively I could eat the large chicken casserole for lunch! My rational brain was shouting NO but another voice was telling me it was now OK. So I eat it with relish, first time in years to freely eat and I was fine.
When I came home my friend had made me a large full cream cheesecake, I ate the whole thing to myself, none of the family allowed near it!!Mind you it was over a few days!!
It all wore off gradually over three months as it was a slow release steroid, then I was back to square one! But at least the Rheumy had pricked up his ears by then!
Am not allowed Dexamethasone again though, too strong for general use they say. They just tend to use it in brain and spine operations.
Since I've been irradiated with high dose imuno suppressants for more than a year now the Doctors have been trying me off the Creon (re: suspected pancreatic insufficiency) for about a month now. While i'm a bit more fatigued and have more muscle aches - (a bit fibro like really) I'm now managing with the proteins - although I tend to feel faint after a large serve. Gut and poo problems are staying away.
Six months into taking the Mycophenolate Mofetil my digestive system chucked a major wobbly - nausea, spasms etc. Not at all happy - but given my Kidney problems I had to take something. I was switched to Myfortic - which is essentially Mycophenolate Sodium - a slower release, easier on the gut form of Mycophenolate. Its worked really well. I was wondering whether this might be an option for you ? - or even some of the older drugs like Azathiaprine ?
Even more controversially.... I now wonder if ME as such even exists. Or is it misdiagnosed autoimmune disorder of some kind? I was initially written off with ME, until self-testing revealed first antiphospholipid syndrome, then Sjogren's. Subsequent consultation with a functional doctor revealed 'subclinical' hypothyroidism. And the list continues to grow.... So it wasn't ME and there ARE things they can do to help - if not much! I will now retreat back down under the parapet!
If the science ever does catch up ,I think like you there will be no such thing as ME or Fibro. They will realise there was a real and appalling mistake and so many folks lives ruined for the sake of more research.
The money needs to go there ,as well as all the other deserving areas!!!!!!!
Your Symptoms are Real by Bengamin Natelson, came out on 2007, and is interesting especially for folk stuck in the Fibro camp being refused steroids or any treatment.
These are all immune illnesses and I think diagnosis depend more on your doctors than your symptoms. Here I put my head above the parapet. I'm more like twichytoes in that I have different diagnoses ie Hashimoto's Gluten intolerance/coeliac Psoriasis and Psoriatic Arthritis and apart from T3 for Thyroid no meds.The thing is, back in '79 both my sister and I had flu, this was what I thought was the start of my illness, barring in mind I had a child the year before, my immune was probably compromised. Both my sister and I deteriorated health wise. She was diagnosed with ME a few years latter. I struggled on and didn't get any diagnoses for another thirty years. Slowly my illnesses were diagnosed. We have the same symptoms and similar genes but those symptoms seem to present differently to different doctors. Just my ideas.
how scary it is when you read about how we all started getting sick my youngest was about 4 mths old when i got flu like symtoms muscle and joint pain for mths on end i was first told it was in my head joints swollen tiredness constant pain after several diffrent diagnosis several years later and 5 yrs i sent in and out of a wheelchair they put me on the right drugs yes i get nasty flare ups just wish it didnt take yrs before i got the right help
Fascinating & well informed discussion ! I have none of the conditions which you all mention, so am an observer & not emotionally involved. However, these discussions could take place regarding signs & symptoms of ANY part or system in the body, including not only physical but mental consequences. Furthermore, we have to also consider the differences in individual medical & patient opinions & abilities.
As many of you have mentioned, sometimes it is quite simply that WE DON'T KNOW ! Faced with this embarassment, some emotionally insecure doctors will have to invent a diagnosis or label, others will be honest & admit their ignorance. Likewise, deprived of a diagnosis, some patients will pester the medical profession for a strangely comforting diagnosis or label, the only problem being that, because it's invented, there is NO cure or effective treatment !!
Contraversial & challenging tho' it may be, I personally suspect that both Fibromyalgia & ME are labels for conditions, probably autoimmune & related to our genetic profile, which have been undiscovered or undiagnosed, BUT are the debilitated state which is the result of a prolonged, undiagnosed & untreated condition which results in chronic pain & malaise with increasing mental & physical delbilitation ! VERY real but unknown, undiagnosed so, not effectively treated or controlled !
To complicate the issue even more, the world's governments are so desperate to resolve the worldwide misuse of drugs problem that, forgetting that prohibition DID NOT solve the misuse of alcohol in the U.S., they are endeavouring to solve the present drug abuse world dilemma by banning prescription drugs which may be targetted by abusers. Consequently, thousands of chronic pain sufferers in the UK alone were left 'high & dry' in 2007 when the MHRA withdrew the licence from Coproxamol, the highly effective analgesic with very few side effects, because people were intentionally or accidentally overdosing with them ! The baby was thrown out with the bathwater ! But what happened ? The misuse was then transferred to OTHER opiates & now deaths associated with Tramadol, codeine etc. are the same as they were with coproxamol in 2005 !!!
It's a funny old world, except that many lives are a painracked misery as a result of the ignorance &/or incompetence of those in their ivory towers who make the decisions.
So interesting reading this, you spoke of some less confident doctors feeling vulnerable when not able to find a diagnosis.
I found that too, especially in the early days, like thirty years ago. I am 62 now and it all began in childhood ,but big time from mid twenties.
One doctor I encountered was determined all I had was severe IBS despite me having no colic, and only copious loose stools every morning once a day and an inability to put on any weight. I was really thin and in the middle of pregnancies.
He wrote in my notes I had severely uncontrolled diarrhea all day, hence the IBS. Fortunately by then I had left him and steered myself to the pancreatic department of a large hospital. It was quickly diagnosed as steatorrhea ,loose stools due to pancreatic insufficiency ,because of years of untreated pancreatic inflammation. This was all part of the mystery autoimmune disease, lurking there despite the negative bloods.
Had I not found the right road myself I would still have the IBS diagnosis and with everything else would no doubt be bed bound by now!!!!!!
It is really quite scarey the way he twisted my symptoms to suit a convenient diagnosis!!
What a fascinating discussion - all the better for being late to the party!
Some of you will have read posts by me about how I envisage autoimmune disease: it is a load of shelves behind a shop counter and the assistant hands out a random selection of signs and symptoms. The name someone gives you for it varies - because in the past someone wrote a paper and had it published about a patient or patients who had a, b, c, d as symptoms - and they gave it a name, often their own, for posterity. Since then technology and science in general has moved on and they can measure far more things so in some cases the names have been changed to reflect the findings (think Wegeners turning into GPA). Some people have random combinations of "things" that don't fit anyone's pictures - and, as junechopin says, doctors who lack confidence and who have learnt to diagnose on the basis of facts (provided by the lab) struggle. You don't tick the right boxes - not your fault but the doctor feels a failure because s/he can't cure you or, at the very least, provide a reliable management plan.
At the age of 27 I had what is now felt to be the typical presentation of ME (it didn't exist then except as yuppy flu): a severe, apparently viral infection with unbelievable fatigue and nausea that lasted a few months and then slowly resolved. At the time all they identified were abnormal liver markers, which were enough to seek a referral to hospital - but all had disappeared by the time I got there 6 months later. Duh! For the next 4 years or so I struggled to get to the top of the stairs but that also faded slowly. In my early 30s, post babies, I started having night sweats - not horrendous but they disturbed my sleep badly and the fatigue was back. My German gynaecologist tried HRT - and it worked pretty well. I continued with it until the "one too many scare stories" about it and I stopped. Within a year or so the symptoms of PMR appeared, first with the sweats and then the pain and stiffness. Eventually I asked "could this be", I was given 15mg pred and taper for a trial - and in 6 hours I was almost back to normal. I could at least get up out of a chair/off the loo on my own and didn't have to calculate how to turn over in bed!
Now in my searches for what this final thing was, I realised the most likely labels were either PMR or fibromyalgia - there were overlaps which confused the issue and in the end some of the overlaps are accounted for by myofascial pain syndrome, that's has been sorted and on 5mg pred I was feeling really good - almost healthy! Then there is this flare - but I digress.
Nothing fits any one thing, no-one has found any antibodies yet, and all my blood tests they've thought of are stubbornly NORMAL. But I wonder - what might an endocrinologist find?
But to add to junechopin's comment of "It's a funny old world, except that many lives are a painracked misery as a result of the ignorance &/or incompetence of those in their ivory towers who make the decisions.":
I've just put a post up on another forum where someone has been told to stop her pred (which works well) on a very fast taper because they found a low vit D level - at a very late stage of thinking about it - so it must be that not PMR, and by 6mg all the original symptoms were back. Absolutely typical of PMR - to my knowledge pred doesn't relieve low vit D symptoms although it is a common finding in almost all autoimmune disorders, PMR included. But she MUST stop the pred.
I am absolutely certain that, because a small cohort of experts who have never had any of these diseases have some very fixed ideas about these things, there are many people housebound or struggling to get by simply because they don't fit the image their doctor has. If you are young (under 50) it must be fibro or CFS/ME, or it is all in your mind (that's the one that REALLY makes me angry) - and some of them insist that PMR doesn't happen in young people. It doesn't happen in young people because THEY AREN'T LOOKING FOR IT! They are terrified of pred and will insist on trying all sorts of things that don't work and then give up. I don't CARE what the label is, I don't CARE if pred has a lot of rather nasty side effects - if it is the one thing they can offer me at whatever age that lets me live my life without constant pain then so be it. I'll deal with the side effects when they arise - none have yet.
That's my problem, a relatively minor one compared with other autoimmune problems. But I think it is the same with most of these things - they so want to be perceived as knowing what they are doing that some doctors will try to intimidate us. And woe betide the patient who asks the uncomfortable question of the doctor with confidence problems. You are immediately classified as "psychosomatic" or CFS/ME, for which there is no real answer yet, is a very convenient label there. Especially when it is a GP who digs it out because they don't have a clue about autoimmunity other than maybe thyroid stuff.
Please note to all that read this, my type of SLE is not all that common and the Rheumatologist I was dealing with was an aberration - so please do not freak out !
Just a very subjective and slightly deranged response. When I was 15 I was diagnosed with SLE - must have had some positive markers? but more obviously some near failing kidneys - the biopsies I had would have showed the SLE - so I had a clear diagnosis. But in my mid 30's I turned sero negative.
Unless I'm literally on deaths door I have very minimal joint involvement.
Because my Rheumatologist was a very senior imbecile in an ivory tower, he did not tap into the fact that I had become sero-negative and decided my major problem was fibromyalgia. He formulated this idea - despite over time some rather obvious problems with my Liver, Stomach Lining - (leading to a B12 deficiency) and then - last but not least - after me warning the above said imbecile that I was flaring due to my observation of mild arthritis without swelling or redness and unusual fatigue - and then clearly explaining to him that due to 34 years of past experience this clearly meant I was in big trouble......... in his mind this was obviously the ramblings of an overly anxious hysteric - Thus - I did not receive the help I needed which lead to Panaceas secretion insufficiency & some serious Kidneys problems again.
So essentially my Rheumatologists theory about me and my fibromyalgia almost killed me 3 times over.
Its possible I do have fibromyalgia although I was never properly diagnosed. The deluded Ivory tower sexist prat had a prod at a couple of tender points and with a magic wave of his high status hand declared I had Fibro. I do have fatigue and muscle aches and sometimes when I scratch myself it hurts way too much to be normal so perhaps it is part of my symptomology. But what I do know for certain is that I have SLE - Blood tests show no sign of it - but it most definitely showed up in the latest kidney biopsy.
I hasten to add that I wasn't launching an assault on most doctors. It is only fair to remind ourselves that doctors are human beings too & often have unpleasant things happening in THEIR lives as well, but that their mistakes or omissions tend to have more serious impacts on the lives of others.
However, I do have contempt for many people in the ivory towers of government offices, particularly the doctors who have become politicised & enjoying the power of their office.
I have recently received a letter from Dr. June Raine, Chair of the Pharmico Vigilance Committee of the MHRA in response to my polite & well informed request to reinstate coproxamol.
She apologises negatively for the effect which the withdrawal of coproxamol has had on chronic pain sufferers, which she describes as INCONVENIENCE !!
I too have paid the price of missed diagnosis. In 1985, diverticulae were found in my gut & the label of Diverticular Disease was indelibly stamped, with a slight touch of IBS & neurosis perhaps too ! Despite repeated requests for a review as I was not responding to the treatment for that disease, I struggled on for decades till 2 years ago a totally coincidental blood test found, at the age of 83, that I have Coeliac disease ! Now on a gluten free diet, my gut is quiet & pain free, & I understand that Consultant Gastroenterologists now routinely test new patients for Coeliac disease !! But my liver is shot at ! I presumably still have my diverticulae, like a large proportion of the society, but they don't bother me !
My friend suffered generalised pain & lethargy for months, but because she was anaemic was referred to a gastroenterologist. Several months & three colonoscopies & the clever little camera taking pics down her gut later revealed nothing ! After she declined the fourth colonoscopy, the consultant's young registrar listened to my friend's suggestion (from the internet !) that perhaps it might be Polymyalgia R, which it was !!!
She's fine now after a course of steroids !
So, if there are any doctors reading, LISTEN to your patients & their history, they are often just as intelligent as you are, lab results & investigations are only a tool & shouldn't be relied on too much in your differential diagnosis !
I'm sure it will interest all of you who have RA & other auto immune conditions that The Lancet is campaigning at the moment for anyone in the medical profession to send them trials, articles or any research associated with RA & other auto immune conditions with information which will lead to an improvement in the treatment or understanding of these conditions. It's good to know that the profession realises that there is a need for a better understanding leading to a better care of such patients, isn't it ? Closing date for publication is May 25th, I think !
A very interesting post and replies. As someone who was originally diagnosed with ME/CFS, I must agree with junechopin's comment re ME being a name for undiscovered and undiagnosed conditions.
To take the undiagnosed bit first: had I been thoroughly evaluated at the outset, then I suspect at least my Lupus and Hughes Syndrome would have been uncovered and treatment commenced. From my interactions with many others diagnosed with ME/CFS, the level of investigations given to their respective issues has - in the main - been highly unsatisfactory. ME Research UK published an article in Action for ME's magazine a few years back, based on some research/work they had done, which estimated (from memory) that 40/50% or possibly many more of patients diagnosed with ME actually have something/s else but these conditions aren't identified due to lack of indepth investigations.
In respect of 'undiscovered': I have a couple of other conditions, too, but one wasn't even known about back in the 2000s (a gene mutation that can cause very undesirable, often fatal, effects), and the other; well, even now most docs aren't aware of it ( a form of autonomic system dysfunction (ASD) - like POTs, which you may have heard of, but to do with blood pressure and, by implication. blood supply to the brain). And in terms of serious research going on in the ME/CFS field (by which definition I discount the PACE trial, which you may be aware of, as not worth the paper it was published on), there are some intriguing things now emerging. The field is hugely diverse, which I believe has been one of the problems in getting funding/researcher interest in the past, but the work on autoimmunity being undertaken by Fluge and Mella in Norway is just so promising. A link for anyone interested: helse-bergen.no/en/OmOss/Av...
But, of course, this may just be one aspect of what actually lurks under the ME label, in terms of it comprising 'undiscovered' conditions.
From my own experience, I would say that the ME/CFS label is an absolute cross to bear. Doctors either dismiss you as untreatable, not worthy of further investigation, slightly mad, or look at you sadly and say, 'We simply don't understand what's going on'. Getting meaningful diagnoses, whilst not fully explaining my symptoms, does at least mean I am treated, and with respect.
Thank you everyone for the very interesting replies. Sorry, my internet died soon after I posted the question and it was restored last night so it's been a surprise package for me opening up this thread this morning!
Mostly the comments reflect my opinion, especially the postcode lottery comment! It seems to be the luck of the draw, the doctor you get determines the diagnosis you get and it all depends where that doctor was trained and what they believe in whether you get any treatment or not.
The reason I originally asked the question was because I had been reading the Rituximab study by Fluge and Mella that Mrs MouseSJ mentioned as well. Surprise surprise, CFS patients respond well to Rituximab treatment. I think this fits with your diagnostic light bulbs comment Barnclown!
This discussion has just put a bit more charge into my battery to get out there and get a diagnosis and treatment other than CFS!
i have not been diagnosed with Lupus, however i was diagnosed with ME/CFS about 20 years ago, i have had no progression in the way i have seen others have with ME however i do have major flare ups that look a lot like ME but not frequently, i also have major reactions to the sun, so much so that i rarely go out in the sun without factor 50 suncream and being covered over, the moment i go in water or use daylight lamps i come out in a rash, and have severe joint pain, without inflamation, i wasnt diagnosed with Lupus but i have since had the added diagnosis of Fibromyalgia, so there could be others out there with Lupus symptoms but who have been diagnosed with other conditions,
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Next step?
Do I get diagnosis- welsh NHS patient. Private or NHS ??
Question about vitamin D
Facial rash or not?
A question for the ladies!
