We've only got a couple more questions for this research study planned, but we're so grateful for everyone sharing so much. With all of these questions please do feel free to comment on each other's responses as you do for other posts as getting a conversation going about all these issues is also really helpful. For information about the research this is linked to, please go to healthunlocked.com/lupusuk/... or contact MelanieSloan .
It is not uncommon for someone with lupus to receive a diagnosis of fibromyalgia. This may occur prior to their lupus diagnosis or be added as an overlapping syndrome in the future.
How do you feel about the diagnosis of fibromyalgia? Do you feel it provides an explanation for some symptoms such as pain, fatigue, sensory changes etc, or do you think these are caused by the lupus itself? If you were diagnosed with fibromyalgia, do you feel your doctor explained it well?
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I was given a FM diagnosis about a year after being diagnosed with UCTD, after I'd developed severe fatigue and 'post exertional malaise' type symptoms. When I asked how this might be related to my underlying condition, my rheumy simply said, "your brain is misinterpreting signals it is getting from your body as fatigue or pain. The treatment is graded exercise and 'pacing'. If it persists, try gabapentine". For me, this diagnosis was reached far too readily and it appears to have acted as a deterrent to both my rheumy and other specialists considering any other explanation. My symptoms have worsened, to the point I am virtually housebound. In the same period, I developed both adrenal insufficiency and myositis - but it took a real effort to pursuade my rheumy this was happening (I actually had to show him the results of a home test for cortisol before he agreed to refer me to the endo). I still have abnormal bloods, but the "FM" label seems to persist as a settled explanation for my symptoms. Alternative lines of enquiry (and therefore treatment) have been rejected by my clinicians.
What is particularly disturbing is that at my last meeting with a new specialist - a sleep specialist - I discovered that the referral letter put 'F-M-' as my primary diagnosis.
In other words, the FM label seems to have turned me into a chronic, intractable, patient with long term 'management' needs rather than someone with acute problems that require active intervention and resolution.
I use the term Fibro dustbin in the sense of all dustbins...that is, a container for household [medical] rubbish...something that is considered unimportant or valueless...and kept outside / marginalised within a health structure that, in my experience, most often treats those with this 'label' as little more than discarded material...patients who, through no fault of their own, become marginalised, insignificant and 'peripheral', in terms of having appropriate and ongoing access to diagnostic / treatment processes and ongoing care.
The Fibro dustbin is a place where, to follow the dustbin metaphor, those with fibromyalgia are left to rot and fester, 'waste'and 'wasted' humans who are not considered to be recyclable...and are therefore not recycled...the very best of medical practice and treatment is reserved for those who have conditions considered to be 'treatable'. The fact that fibromyalgia is considered to have little to no treatment becomes a self-fulfilling prophecy...treatment is rarely attempted or offered...in the majority of cases.
The Fibro label becomes a dustbin diagnosis since once it is applied, as in my case, all and every other symptom or potential disease manifestation is simply tipped into the pre-existing diagnostic Fibro dustbin, potential for damage and harm from undiagnosed underlying conditions rarely considered or even thought of.
Patients become like medical detritus...waste and debri marginal to and within a health structure that largely has neither the knowledge of the resources to at least attempt to recycle this waste into usable and useful human material.
A brutal way to envisage the fibromyalgia diagnosis. Yes certainly. But, cast aside medical discourse and talk of medical practice: this is how I experienced it. And not just me. Many people who responded to this post. So many members who post in this forum. And take a look a the fibromyalgia forum here on HU. We are so many. Too many.
And yes, I don't doubt that there are medics out there who genuinely try to do their best for the Fibro's: attend to symptom and pain relief, refer to pain and / or fatigue clinics and such like. They, I think, will take great exception to using a dustbin metaphor to describe this diagnosis...and exception to the implication (or fact, if you like) that so many with this diagnosis feel like this...because that’s what’s at the heart of this reply...how it feels to be diagnosed with fibromyalgia and what the outcome is for many: essentially discarded.
And because the Fibro dustbin exist, it's a place that many - far too many - physicians utilise with a careless ease. Sometimes for no other reason than they simply don't know what to do with 'us'. Other time’s - sad to say - for reasons that are, quite frankly, unfathomable and completely beyond the comprehension of those who look to them for care (in all the guises that entails).
So...that’s the Fibro Dustbin.
P.s. And what whisperit says in his original response...
Yes indeed, so well put! I was originally diagnosed with M.E. which - like a diagnosis of Fibromyalgia - deters further investigations. As with you, I feel that that diagnosis was reached too readily and not challenged, except by me once I learned about differential diagnoses. Anyhow, I have detailed this in a response to an earlier survey question.
Back to Fibro, following a hysterectomy three years ago I now have episodic, severe, unexplained pain which my GP wants to call Fibromyalgia, given my other symptoms - including, as with you, severe fatigue and post exertional malaise, sleep issues, etc - and the fact that I have Lupus . When I put this to my rheumy that he said he would prefer to see it as unexplained chronic pain and keep an open mind. Initially I was rather disappointed by this - I felt at that point that a 'label' would be helpful. However given that Fibro, along with M.E., has still not been pinned down and there is consequently no diagnostic test I think that not being 'saddled' with a diagnosis which might potentially stop further investigation at some point is probably a bonus.
Ugh. It is so hard to read how much pain you and so many others here have had to go through. Yes, the key thing is 'what does this diagnosis mean in terms of treatment and investigation?' x
Absolutely not. 'Pacing' seemed to be only what we all do automatically anyway - getting used to our exercise limits etc? It has nothing to do with addressing the fundamental problem - which is that there is a pathological process going on here. This is part of why the FM diagnosis is so unhelpful; the treatments are aimed at getting the patient to ACCEPT their pathology. This is something that no-one would be happy with when they feel not enough has been done to properly characterise - let alone remedy - the underlying pathology.
GET was almost contradictory - encouraging me to try and exceed my limits on a regular basis. It's no surprise that a recent survey of CFS/ME patients reported their views that GET was harmful to people with PEM symptoms.
I was diagnosed with SLE about 6 years ago [can't remember exactly] I was only diagnosed with FM 4 months ago when I presented my rheumy with a list of all my pains etc, I wasn't sure if any were connected to SLE so I just put down everything that didn't seem temporary. All I have been given is an appointment with a podiatrist for one of my foot pains, who diagnosed plantar fasciitis and gave me exercises which have made my feet worse, and fluoxetine which is somehow to help with the FM but no explanations, no tests on other possible problems or medication. I just feel like I am in the dark as usual.
Thanks suzannah, so did he give you no explanation at all for a fibromyalgia diagnosis? When you say you feel like you're in the dark, can you say a bit about how that feels please? Does it effect how you can manage the symptoms?
just said it sounded like fibro but didn't go into how it was likely to affect me. unfortunately I have reactions to all painkillers except paracetamol so I am left to cope by myself. I don't know which of my symptoms are fibro, which are lupus or whether some are something else. I just know I am in constant pain to varying degrees and very tired.
Hello I had a fibromyalgia diagnosis without any physical examination or further testing.I didn't feel it fitted my symptoms I had raised CRP,and fingertip hemorrages and both a family history of autoimmune diseases and diagnosed autoimmune liver disease and antiphospholipid syndrome but never the less the doctor said fibromyalgia
I felt dismissed and upset as I knew there was something else wrong I was then immediately discharged from rheumatology.I was so upset that despite worsening symptoms I wouldn't ask my GP to refer me again for years until I was acutely ill having imobilizing attacks of pain as well as rash fingertip hemorrages, and red eye I knew I should go back but as this would be my Fourth referral I felt it would be my last chance and I was frightened of being dismissed again as I didn't think I could take it.At the point when I finally got a rheumatologist who was able to help I was feeling very very ill and had I not got help them I think I was on the verge of major incident of some type as I was feeling awful. My life has been transformed by azathioprine and hydroxychloroquine the fibromyalgia diagnosis delayed this by years I am still angry about how I suffered I think it's an easy diagnosis as there's no real test to prove it and no effective treatment it's all to easy to diagnose and as my case shows if the diagnosis is incorrect that can have serious clinical consequences.As such it should be a diagnosis of exclusion when everything else has been excluded and crucially patients diagnosed with it should be periodically reviewed and not discharged by rheumatolgy in case something else develops or of misdiagnosis.
that's a really salutary lesson, jane1964. I can see where you are coming from with 'diagnosis by exxclusion' but my worry is that some clinicians are too quick to decide "Ive excluded everything"! x
Yes I was told my blood tests for something were negative but later they found them to be posative and they probably were all the time but the test wasn't right as the posative result was found when the consultant asked the lab to retest by hand rather than the automated process. I just don't think the science about autoimmune diseases is good enough. I hope things will improve maybe surveys like this will help.
I sent rheumy a very short email the week before with bullet points that I wanted to discuss, but whilst he saw other patients, I was seen by his registrar. The appointment was taken up by me explaining my history. A complete waste of time I'm now composing a letter....x
I'm so sorry what happened at your Rheumy appt, specially as you prepared him so well!. It's very annoying when a lot of effort has been made to even get there. I'm glad your writing him a letter , best thing to do!. I'm afraid it's happened to me seeing a registrar instead of the Consultsnt and so now if it happens I ask politely if I can see the consultant and I don't mind waiting!. They don't like it but can't refuse and I've got what I've needed!. Let's face it we only get 20 mins twice a year if we're lucky. It has to count!. I was a zero hero end of March. Were you?. Hope you get a good reply. X
my next door neighbour is a retired GP and popped in yesterday. She said if she's ever seen by a registrar, she does exactly what you do. So will I from now on! Zero hero here too x
Oh that's brill Whisperit 😊and so handy to have a retired GP next door but I'm sure you don't take advantsge!. I've got a nurse friend nearby and don't . Just thought I also ask when I'm at the clinic who I'm down to see!. I may be putting my money where my mouth is as I'm at Gastro clinic on Monday and have had the registrar there!. It's seems so silly and annoying because they always have to go and ask the Consuktant because we're more complex so it's much better to see them in the first place!. Do hope you get a good reply to your letter. Keep me posted.Glad I'm not the only zero hero, enjoyed doing it. No hedgies yet, too cold!. Hope they're OK. X
I was diagnosed with fibromyalgia about 3 years ago. I think it started about 10 years ago, when the rheumatologist at the hospital decided to stop my steroids by going cold Turkey. After that I was in a wheelchair for over a year with so much pain. They seem to use the fact that the fibromyalgia is causing all my pain. There is a difference in the way the pain lays in my body but trying to separate them is difficult. I joined a Facebook page of a local fibromyalgia group. They have bee very helpful with what fibromyalgia is When I was diagnosed (which was by a rheumatologist) I wasn’t told anything other that the pain points in my body. I had to try to find out what was happening to my body. I have learnt so much just by talking to people with fibromyalgia and by google. I am now getting help from a NHS pain clinic which specialises in Fibromyalgia pain This has been very helpful as in the medication doesn’t seem to work on Fibromyalgia but meditation and being able to relax does.
I am still learning how to deal with the different types of pain that goes through my body daily
That's very interesting Crystal, so you can feel the two types of pain are different? Can you describe the differences please? (I know it's very difficult to put these things into words!)
It’s definitely difficult to pick out one type of pain from another but the Lupus pain seems to be deeper. Mainly affecting the ligaments and deeper muscle. The Fibro pain is more surface pain with a lot of nerve pain. I also have arthritis so that’s the joint pain. Some days it’s just lots and lots of pain. A new pain or rather discomfort is a feeling of tightness in my hands arms feet and legs. What it would is I don’t know 🤷♂️ it could be any thing. I am having trouble with getting doctors to look past the Fibro. With the new pain I think it feels like blood flow in my arms and legs. But the doctors are so sure it’s fibro related. We are still arguing this one.
Here's my story...it goes back over thirty years so I'll be necessarily brief.
Shortly after the still birth of my second son I became extremely unwell and my GP diagnosed me with ME and told me to 'go away and have another baby dear'.
No investigations, no laying on of examining hands, no ruling out of potential underlying causes - just a label plucked out of thin air - 'perhaps brought on by trauma'. In addition to a multitude of symptoms, I had what I now know to be a malar rash - most perfect in design and presentation - worthy of any medical text book.
Thereafter followed thirty years of sheer hell. Relapsing and remitting symptoms, trips to the doctor when things got too bad only to be told 'it's ME, nothing we can do'. It got to the point that I only ever went to the doctor if I needed antibiotics (frequently and multiple treatments), or if there was something to be seen (round rashes in the scalp, egg sized Achilles‘ tendon, weeping ears). Occasionally I was referred...for instance to haematology for unexplained bruising - which remained unexplained.
Despite asking my GP to investigate further and / or refer for specialist opinion, this was refused - on the basis that I had fibromyalgia and there was nothing to offer.
When things got too bad I sought private medical consultations (neurology, ENT, rheumatology etc.). Normal MRI, 'normal' everything, so I never got very far. Nobody ever looked at the big picture but simply 'picked-of' individual symptoms and when these didn't fit within the prism of their particular speciality, discharged and referred back to GP with - fibromyalgia / ME / CFS....whichever seemed to be the fashion of that time.
No doctor ever explained what fibromyalgia was - I had to research this myself. Research lead me to believe that I did not fit the symptomology usually associated with fibromyalgia...too many things just didn't fit.
Through this whole time I was variously dismissed, demeaned, belittled and on occasion treated with hostility - I think because I would not accept the fibromyalgia diagnosis 'like a good patient'. I was simply trying to find a way of improving my health and quality of life.
I had undiagnosed and untreated B12 deficiency for five years because the (new) symptoms were dismissed as being due to fibromyalgia.
People here in this forum can probably understand what if feels like to have a GP suggest - with no evidence whatsoever - that you may be suffering from conversion disorder!!
People here in this forum will understand the anger and despair that arises when fibromyalgia is so carelessly applied as a diagnosis. The fear and uncertainty that causes. The mistrust of doctors who are unable or unwilling to exercise clinical investigative rigour. The - sometimes years - of fighting to be heard, believed, and helped. The medical PTSD that occurs after appointments go so horribly wrong. The sheer frustration and sense of disbelief and injustice of being dumped in the Fibro-dustbin and then ignored. For thirty years!
And yes...there may be an as yet little understood collection of symptoms that the medical profession choose to call fibromyalgia. And yes, I have no doubt that some people do suffer from this. The real issue here is what is done or, to be more precise, not done, once that diagnosis has been issued. And many times, the answer is - nothing.
I do wonder how many wonderful human beings out there have been thrown in the Fibro-dustbin and are committed to a life lacking in...well...anything at all...when in reality...if anyone investigated further...
And just to finish off...
Four years ago I became acutely ill with GI symtpoms and lost one and a half stone in two weeks - fibromyalgia!! I eventually had to insist on referral to a gastroenterologist, who (amongst other things) picked up on an extremely high ANA and referred me to a rheumatologist, where I was eventually mis-diagnosed with UCTD... two rheumatologists later I have now been diagnosed with Lupus after fighting for a transfer of care to a Lupus Centre of Excellence.
Looking back and thinking of the pattern of illness over the last thirty four years, I think that I've had it all along. Excuse me if I say - with very good reason - Fibromyalgia, be damned!!
And yet...still...fibromyalgia (which I still believe is a mis-diagnosis) appears on all my medical records. And on the bottom of any diagnoses list in consultation letters. So...I am riven with uncertainty...and yes fear...that despite the Lupus diagnosis, one day, someone, somewhere, will say...ah ha...you don't have the 'right' bloods at the moment...not flaring, no need to treat the underlying cause, must be fibromyalgia...no treatment.
So, there you have it...a life in the day of Fibromyalgia.
Every rheumatologist - hell, every doctor - should read your story, Foggyme. So eloquent and so insightful. And I'm so sorry you had to go through it to tell them this. x
Would gladly distribute to every doctor in the world - if I could afford it.
The saddest baddest and most disturbing thing is that there are probably so many people like me out there...and many of them here in this forum too - you included.
I am so sorry for you, Foggyme. Your experience has been truly dreadful. Although I had a little smile about the 'go away and have another baby, dear' comment. A similar thing was said to me (pre diagnoses) back in 2005, when an older, male doctor looked at me and said, 'Well, I always think that childless women of your age (I was 34) are prone to these sorts of problems. Have you thought about having a baby? I really think it would help.' I didn't know whether to cry, laugh, or hit him.....
Thank you MrsMouseSJ. Thankfully and hopefully better times will be in store now.
The things that grieves me most is that my 'story' is not that unusual...there are far too many like me out there.
The thing that saved me was finding this forum when I was at my lowest-ebb and then having LupusUk champion my cause at the time I needed it most. And then being seen by a rheumatologist who truly listened and engaged with my whole medical history.
Finally having an accurate diagnosis is, well, a relief...liberating (if that’s not a funny thing to say about being diagnosed with such a tricky nasty disease).
I just so wish that things could be different for all those who suffer at the hands of sometimes incompetent and caring / hostile medics.
'Go away and have a baby dear' yes, worth of a large punch...for oh so many reasons. Sincerely hope that this kind of advice is a thing of the past.
Such strength Foggyme, you should be incrediably proud of yourself for finally getting to an "accurate" diagnosis, and thus a better quality of life. I nearly replied to Paul directly until I read your post, but would feel ashamed to do so after reading this. I was diaganosed with Fibromyalgia last year and it affected me so negatively, both physically and mentally. I just started to ignore my body and carried on no matter how poorly I felt, in the end I was so unwell I flopped; my mental health deteriorated too, CPN didnt help saying it was psychsomatic and I felt so incrediably worthless and to this day I still feel I am wasting NHS time every time I see anyone. I don't believe I have fibromyalgia, no muscle pains and the rhematologist made me jump out of my skin by touching me without letting me know and that was it - according to this consultant I had fibromyalgia, however I did act completely pathetically as was so anxious and scared of saying the wrong thing. I think I said lots of wrong things at that appointment!! As soon as anti depressants were mentioned, I completely felt like I had lost any hope and I should have just left then because I knew exactly what was going to be diagnosed, and before any xray or blood results (which are less than normal). Next appointment in May (different consultant), and I am not going to be pathetic but explain that I deserve to be listened to and treated, and this new found confidence is from this great forum, so full of brave, strong, incredible people. Thank you all x
No and I just wanted to escape from that horrible appointment, so did. Would have left without bloods and X-rays if the nurse hadn't grabbed me! I don't think fibro is on my care summary as GP didn't agree with him. I think I said the wrong things: wasn't sleeping due to depression and anxiety, and so never wake refreshed, had (and still have) chest/rib pain which he stated must be muscular pain thus fibro, he made me jump out of my skin by touching my back without telling me (I've a heightened stress response from the anxiety), and told him about taking anti depressants.
And thank you for doing this research, I am finding it healing just writing it down and reading what others have experienced, it is so sad to read and I'm hoping that health professionals will change. I'm also pretty certain that if autoimmune diseases were predominantly male then things would be very different, no disrespect to you guys out there.
We all just want to be listened to. That should be the first and my important thing all doctors should be taught. One rheumatologist said in my letter that I was now in remission so all good. I had told her that it was all getting worse. Did she listen?
Oh dear Poppypig. I'm so sorry that this is happening to you to. Please don't ever think that your story is less important than anyone else’s. 'Worst-past-the-post dosen't cut it here - we're all equally important, everyone has something valuable to say, and we all need and offer support in whatever way we can.
I know what you mean about always feeling that you say the wrong thing at appointments...me too. However well or badly it goes, I always come away thinking of the things I should have said and didn't. Or questions Imshould have asked and didn't. And when it goes badly, it's all too easy to think it's your own fault because you did or said something 'wrong'. But the bottom line is that doctors are in a position of power, they’re the 'grown-ups', and it's their responsibility (and duty of care) to ensure that consultations are both appropriate and to the benefit of their patients. They should know the questions to ask to get to the heart of the matter...but sadly, far to many get this wrong.
I've now got into the habit of taking in a summary bullet point list of things I want to cover in any consultation, and I hand over a copy so that it can go in my medical notes (some like this because it cuts down on the amount of writing they have to do 😉). It also helps keep me on track because it's so easy to 'lose the plot' when you’ve waited so long for an appointment and so much rests on the outcome.
Please don't ever think that you’re pathetic. It's very tough dealing with these appointments, especially when often feeling so unwell. And particularly when previous consultations have gone badly.
And just for the record, I've never ever felt very strong...more often desperate...and have just carried on because...what other option is there. So if 'getting on with it' counts as strength, then you have it too 😉😀.
I sincerely hope that your appointment in May goes well and please do post and let us know how you get on. Or indeed if you need any support or help to prepare. Or just pop in for a chat...the folks here are brilliant!
I'm on the cusp of my own reply to this post - only to find someone who's been through almost the exact same torture.
I'm posting from Australia - so this might not be a great comfort - but I made a formal complaint to the Austalian medical board here due to delay's in diagnosis - due in most part to having fibro on my medical record. This is part of a paragraph of the letter I got back. It's edited because I cant mention the names of Doctors involved in the whole ordeal - so some context of the outcome it lost:
' The board noted that there is no test to confirm fibromyalgia, but symptoms include pain in the joints and tendons, which can also be a feature of lupus. In someone who has lupus its is impossible to formally diagnose fibromyalgia, but it is evident ……..(unable to repeat due to legal reasons...………… this is consistent with you're submission that you were never formally diagnosed with fibromyalgia, but that this condition was included in you're reviews from approximately 2008...…….(unable to repeat due to legal reasons) There is evidence to suggest that fibromyalgia was being monitored by Dr (cant say) as part of monitoring of your lupus'.....cant say....cant say - lots of double speak.
Even , though the board has not decided to take further action in this instance, the issue/s you have raised can be used to inform future board publications and educational programs designed to ensure resisted practitioners provide safe care to the Australian community. (pat on the head ?)
The intermediary in the whole process tried to convince me that I'd actually achieved something - but she couldn't say what. A lot of the process went on behind closed doors.
Discombobulating isn't it. Both acknowledge and don't acknowledge. What a grey area.
The part about not being formally diagnosed with fibro: -
I complained that I was diagnosed via aforementioned Doctor pressing two - not tender - tender points and a wave of the hand. More like a witch doctor than a doctor. And all of a sudden I was rendered - via magic something else. So many parts of me damaged due to active SLE due to over - emphasis on Fibromyalgia, or as I submitted to the board - an excuse not to treat despite active and treatable and profoundly destructive SLE pathology.
Oh dear Freckle1000. So this is happening half way around the world too...brings new meaning to the words 'wide-spread'. Shocking.
And sadly, I'm not surprised at the outcome of your complaint. This happens here too (have you seen Wendy39 's posts?). And this is by no means unusual.
The NHS seems hell bent on protecting itself rather than protecting the patients it's supposed to serve...always to the detriment of patients!!
My most hated phrase in the whole of the English (or any) language...'lessons have been learnt'...!!!
I recently applied for a set of my hospital records and note, with horror, that these were dispatched not by the medical records department or the department responsible for access to health records...they were despatched by a Litigation Administrator!!
Being rendered 'something else' is exactly how many people here express it...magicked away into what I call the the fibro-dustbin.
Sincerely hope that things have improved for you and that you’re now getting appropriate treatment and care...with not too much damage incurred along the way (what a sad thing to have to say).
I'm doing a bit better now thanks. Took four years to recover but now just got to live around some more stuff.
and yes....😳 When I went through the most harmless official channel to just to directly ask this bloke what had happened I got a nasty and very complex legal letter as a reply. And when I accessed his medical records it looked like he'd taken bits out ?
He also barely ever used a computer - just scribbled everything on a doodle sheet that was going to be chucked away.
I actually wish there was a less litidgous - less , this Doctor will loose his career - middle way to investigate this stuff. It would help solve problems on both sides.
Thanks for the link - I've had a look at Wendy's nightmare.
Very very similar discombobulating traumatic experience. I don't know wether I'd recommend it. ( Thinking of posting about it )
Yes, I agree...a 'middle way' would be less traumatic for all and there'd be more prospect of real change occurring as a result (not just that old emptied out phrase, 'lessons learnt'). With less pain and trauma all around. And just think of the potential for NHS savings on unnecesssary legal fees - extra for front line services (or so it would be hoped).
So please do put up a post Freckle1000. One thing I've learnt from this forum is that there are many unexpected ways to help people...some you never even hear of. But it happens anyway. So post away...I'll watch out, with interest.
Yeah.....here the system is too brutal and stigmarizing for the Doctor if his mistake was minor and redeemable. And leaves the patient way too far out of the nuts and bolts discussion.
Thanks. You make a good point about posting. I think I may have a crack at it. 🙂
Only have a crack at the post if you feel able - sometimes talking of such raw things sets off a good old dose of PTSD - so protect yourself first and only post when it feels like the right time for you (if there is such a thing) 🤔.
My GP thinks I have Fibromyalgia, in addition to Lupus and my other diagnoses. My rheumatologist isn't keen to attach this label to me. And I am glad of this. For me, that is all it really is at present. Until the phenomenon or phenomena currently known as Fibromyalgia are properly understood, and there is a diagnostic test or tests to establish who actually has whatever it actually is, then really all such 'diagnosis' indicates is, 'suffers from some or most of the following, very long, list of symptoms, which are currently very poorly understood or simply unexplained'.
Personally I would like to see aspects of research into certain symptoms in associated conditions joined up. So I see a real need for joined-up research or even a dedicated research facility looking into fatigue, post exertional malaise, pain and sleep issues which would encompass those with diagnoses of Lupus, Fibro, M.E. and perhaps other conditions.
Thanks MrsMouse, definitely more research needed and hearing patient views like yours and others on here will help highlight to the researchers and doctors the human impact.
I too was diagnosed with fibromyalgia as my first 'label' when very young and id only been ill for two - three years!.i didn't believe in it as it didn't match my symptoms and I was fortunate that I suddenly developed a positive ANA and could be transferred from Rheumatology to immunology!. From there I was given the UCTD diagnosis and was treated with DMARDS and improved!. This has happened to many on this forum. I've lost the Fibro label now thankfully as I've stayed at UCTD for thirty two years much like foggy me and my new Rheumy's acknowledge I do have inflammation despite a lot of normal bloods. I'm in awe of what you've gone thru foggy and you are a fine example to us all of never give up as you've finally got the lupus diagnosis you should have had and I hope good treatment. I think doctors use this diagnosis label for people at start of ill health journey if they've been ill a long time they desperately want answers and a reason for their suffering and with normal bloods doctors produce this label!. Some may do it even if they don't believe in it themselves Who knows. It's tricky as it can also develop later on with lupus and can be distinguished from lupus because it's a pain problem rather than an inflammatory problem but can be difficult to prove. Treatment is painkillers and self management techniques which can be tricky leading to the patient feeling they've been fobbed off or thinking that the doctor thinks it's 'all in the head' when he proposes a low dose anti- depressant as treatment!. It all has to be handled sensitively and when it's not is when we patients feel we haven't been believed or listened to.Sadly we've all had to cope with this too much. X
One - very flustered nephrologist described fibromyalgia as "just a certain cluster of psychological symptoms" I don't actually agree with her - but that's what some Doctors believe. My current nephrologist does not at all like things that have no medical evidence - and - are still concepts - so I stick with her.
I believe that there are terrible under researched conditions such as ME and Fibro. But these conditions have been mis diagnosed - mis used, and attract discrimination.
I agree freckle wholeheartedly with you about the difficulties with Fibro and ME conditions. I've had to stick to certain Consuktants over the years like you have who have been the most understanding and willing to treat!. Its lovely to hear from you and I'm glad you have found a good nephrologist!. Stick to her like glue!. Let me know how your doing if you feel up to it. Take care. X
Thanks misty14. Don't really feel like a fine example...most times I just feel like a mess 😉. I took and take my lead from the folks here and that's what really made a difference and gave me the determination to keep plodding on. Wish this forum had been around many years ago.
Like you, I felt that I never really fitted my 30 year fibromyalgia label...or rather if didn't fit me. I never had the high level of all over-body pain or any of the 18 pressure points that are usually associated with it. But trying to get anyone to listen was all but impossible once that label had been applied.
And you’re right, diagnosing autoimmune conditions can be fiendishly tricky...but perhaps less so if doctors listened more to what patients say...and followed the BSR guidelines...or at the very least, have read them!
Really pleased that the DMARDs made such a difference for you. May you always be well-controlled and cared for 😉😀 xx
Thanks for your lovely message foggyme. Your so right re doctors attitudes and fibromyalgia. They can have such closed minds and won't budge. I think too they should be more willing to keep an eye on patients like us as symptoms for auto- immune illnesses can change quickly!. Trouble is with so many patients they see Fibro as a way to discharge patients back to gp's who can look after them!. The forum does give us such encouragement to fight, I too wish it had been here when I started!. I felt so alone as I'm sure you did too!. I had to come off the DMARDS eight years ago as had side effects and was very ill in hospital. Steroids became my main drug which I wasn't happy about but had no choice!. Now I've broken my left foot because of them, stuck on 7 .5 mg steroids and I've just started Hydroxy which is working and have new steroid reduction plan of 0.5 mg a month!. Big step to go back on such a drug!. How about you?. Did your treatment change with your diagnosis?. UCTD and lupus are regarded very similarly treatment wise!. Do hope you are improving too. X
Oh the ups and downs of autoimmunity misty14...sorry about the foot, the steroids, the hydroxychloroquine old Uncle Tom Cobley and all 🥴.
Hear what you say about UCTD being similar in terms of treatment - well not according to my ex-rheumy. But I'm not going there because I have a new rheumy now...
I'm currently on 5mg prednisilone daily, which I would dearly like to reduce and stop. Previously on Azathioprine but had to stop that recently due to hypersensitive reaction (which I also had with hydroxychloroquine). Tricky because the hypersensitive reaction has gone....but AI symptoms are creeping back again. So, mycophenolate or methotrexate has been suggested as the next likely options - appointment pending.
Ideally I'd like no symptoms, no drugs, no Lupus...but wouldn't we all 🤷♀️.
And it's funny isn’t it - how virtual stranger friends can make such a big difference 'cause they 'just know'.
Hope the hydroxychloroquine and steroid reducation goes according to plan...and don't go breaking any more feet (well, not your own, anyway).
Thanks for your lovely message. Thank goodness your on the safer daily dose of pred but why oh why did they have to come with serious side effects but be very effective !. It's cruel isn't it?. Would be a fab achievement to come off them and you might do. thank goodness that Rheumy is now ex Rheumy because he's wrong about UCTD treatment!. I'm sorry you had to stop Aza. I did too after trying it twice, it's a more tricky drug to tolerate whereas MTX and MMF are eadier . I've been on both and they were very effective specially for the arthritis so I hope your next Rhrumy appt is soon.
It's wonderful to chat to people who undrstand, makes us feel more normal. Keep us posted which drug it is and how you get on and thanks for your good wishes!. I'll be more careful on the rugby field!. 😊Ha!. Hugs X
I had my lupus diagnosis along with lots of other autoimmune "stuff" and all was relatively well controlled until I had renal cancer. Even though this has been successfully treated I experienced severe all over pains, quite different to lupus pain.
Several months later I had an experience of TMJ. I didn't know at the time what it was, only that I went to A&E at four in the morning in agony unable to open my mouth. I was given morphine, told to eat pureed food and avoid chewing gum.
A week later I saw a stand in rheumatologist who confirmed I had TMJ and proceeded to pressure touch different areas of my body. I didn't have a clue what was going on but she said I have fibromyalgia, gave me a leaflet, prescribed Gabapentin and dismissed me back to my GP. That was it.
I took the Gabapentin, which made me gain a lot of weight but I didn't feel had much impact on the pain. I was then given Pregabelin, the worst medication I have ever taken. I was like a zombie, couldn't hold a conversation, didn't know where I was or what was happening. I think it may have helped with some pain but I was so far out of it I didn't have a clue. I stopped that after two months, which was such a relief, I am still in pain from time to time but I put up with it, no way am I feeling like that again.
When I told members of the family about this latest diagnosis I got a lot of eye rolling and sighing. I was repeatedly told fibro is only a diagnosis if they can't find anything wrong with you. It does not elicit much sympathy. I feel like the days before my lupus diagnosis where everyone thinks it's in my head.
Nowadays, even if my lupus is fairly settled but I am in a lot of generalised pain I say it is my lupus playing up. A fibromyalgia label is not a good thing to have.
Just my opinion ? But Lupus would, could, should - be a diagnosis of exclusion for people with Lupus ?
I was on the zombie drug pregabalin for a while. It was awful, I Made some terrible life altering choices on the stuff that still effects me today. I've found adequate immune - suppression more beneficial for pretty much everything attributed to Fibromyalgia.
Where does it come from “it’s all in your head”. How does anyone manufacture pain and why would they want to. It’s about time doctors stoped trying to guess if they don’t know just say so. Don’t blame the patient
The problem is fibromyalgia falls into the category of 'Medically Unexplained Symptoms' - that's the diagnosis GPs make when they think a patient doesn't have an illness.....based on, wait for it............................"multiple symptoms, multiple systems, multiple times"....and the treatment for Medically Unexplained Symptoms is to NOT investigate or to treat symptoms......antidepressants are recommended
And over the past few years. there's been an explosion in literature etc on MUS*....often written by psychs with little knowledge of physical illness....... xxxx
Thanks for posting this eekt...I'd dearly like to by a fly on the wall at that training course. What hope for those with AI disease which, because of it's tricky nature and the problems associated with getting a diagnosis, may be 'unexplained' for many years.
I'd much rather see a training programme for autoimmune disease...along with CPD credits attached. What a great advance that would be.
Fibromyalgia one, of some Consultant's new 'go to' instead of anti-depressants, to get you out the door when they cannot fathom what is wrong. Now Fibromyalgia is a truly debilitating disease for those who suffer it, and I empathise and am not in any way diminishing the impact of it. However, I was diagnosed with Fibro by a consultant Rheumatologist who did not even examine me, not even following the pattern triggers of Fibro, chose to dismiss my raised ESR (158), blood and protein in my urine, fevers, and the fact that I had lost 2 stones in weight over 12 weeks. I was devastated but at the time so unwell, I just accepted it.
What was even more galling this was a private appointment paid for at the time by my works BUPA cover. My GP outright dismissed that diagnosis, as I did not fit the criteria of Fibro, we decided to concentrate on the blood and protein in urine, and again privately I was referred to Nephrologist who did a renal biopsy where I was diagnosed with IGA Nephropathy, he actually told me this was auto immune related, and that I may possibly have Lupus, and also dismissed the Fibro label, and was the only consultant to ever bother to suggest Lupus to my GP.
Unfortunately I was then medically retired from my work, and left in a diagnostic wilderness courtesy of the NHS going from Consultant to Consultant until finally got my diagnosis of Lupus and APS.
I despair reading these posts, I do wish doctors could just sometimes think outside their training boxes, not rely on just must have positive bloods for every condition known to man, and really look at the patient in front of them. I understand the pressure doctors are under, but the suffering people have to endure, sometimes for years, when given a diagnosis of something easy to trip off the tongue, that then gets put on your medical file, and can have a huge detrimental effect on further investigations, as you have been diagnosed, case closed.
I have been reading everyone's survey responses with great interest.
Here is my contribution for your 'Fibromyalgia' questions.
Background:
I have been diagnosed with primary SLE, secondary APS (anti cardiolipin antibody positive across two tests + 7 miscarriages, no genetic or structural or hormonal issues in myself or my husband) with Raynauds and I developed very debilitating POTS during my recent third trimester of pregnancy. This resolved once I was no longer pregnant, thankfully. I have the coeliac gene and my diet is gluten free, mostly organic limited dairy and sugar. I try not to have sugar at all as it really affects my joint pain and inflammation. I also have an enlarged liver and raised liver enzymes. I am due to see a hepatologist in a couple of months regarding that.
History:
Though I now look back at the sun sensitivity, rashes, anaemia, bruising, fainting, pain and fatigue and see that this auto immunity has been with me since puberty, my big event that signalled Lupus was Aeseptic meningitis in 2016. I was 36. I was diagnosed at 37 with APS when having my seventh miscarriage. I was diagnosed with SLE two years after meningitis left me in agonising pain, unable to walk for nearly a month and very fatigued since. I thought I had the after-effects of meningitis. I learned to stay out of the sun, as the light sapped me of all energy almost instantly. I thought this was weird but I did not know about lupus then.
Diagnosis:
Now, my SLE diagnosis was suggested by the sticky blood forum on health unlocked in late 2018. I took my rash photos, blood results and a print out of 'could you have lupus' to my GP and asked for a referral. During that consultation, she said it was clear that I met the diagnostic criteria and she was going to write 'SLE' not 'suspected SLE' on my Rheumatology referral. I left that appointment so elated that I finally had a reason for all my weird symptoms.
I then saw a Haematologist, who examined me and confirmed the diagnosis.
Rheumatologist:
Then I waited months to see a Rheumatologist from a dedicated lupus clinic. She was awful. Rude. Antagonistic. Everything I said was wrong and she openly scoffed at me. She looked at me with disgust, that sounds extreme, but she really was like that. My husband was with me thankfully. She told me that sun sensitivity and the malar rash aren't lupus related, that my limb pain couldn't possibly be symmetrical because that isn't how ctd present, that I didn't have APS and my seven miscarriages where for other reasons. She backtracked on the APS thing when I said we had had full DNA karyotyping through the recurrent miscarriage clinic and had no genetic, structural or hormonal issues. She said it was weird that I had been treated with steroids for my meningitis and that isn't usual or standard treatment. I googled this afterwards and the internet tells me one does treat meningitis with steroids, so I'm not sure what point she was trying to make there. She sent me to have a battery of tests including mri on one wrist and asked me to return in three months, but I cancelled my follow up appointment and plan never to see her again. She wrote to my GP and Haematologist stating that I have ME CFS and Fibromyalgia. Now, she didn't examine me for Fibro pain, nor did she ask me about sleep issues, which I understand are a key part of a Fibro diagnosis. I don't meet the diagnostic criteria for Fibro, and though I have had a very chronic fatigue since I had meningitis, I don't think I have 'chronic fatigue' the condition. It is simply a symptom of my Lupus. Even more pointedly, I can say anecdotal evidence (eg my own trial and error) shows me that light exposure = fatigue.
Two days after seeing her, my Haematologist rang me and said he had received a 'very antagonistic letter' from this doctor stating a diagnosis of ME CFS and Fibromyalgia. He said that Fibromyalgia was a rubbish diagnosis, and that I had too many SLE symptoms and of course the positive ANA of 1:2560 for it to be in question.
Although I am so lucky to have a Haematologist who supported my diagnosis, and believed me, a seed of doubt was still planted in my mind. I started taking risks with sunlight to see if she was actually right. I put myself in danger because I wondered if I was housebound during sunlight hours for no reason. It is so life limiting staying out of the light. However, my sun/light sensitivity is very extreme. I have now come to accept my diagnosis.
I am very scared of going to another Rheumatologist. I don't want to. I think I probably do need one as I have had some kidney pain and blood showing in urine tests, but the plaquenil has just been amazing for me so I'm enjoying that for now and avoiding thinking of seeking a Rheumatologist. I don't trust that I will be treated with respect or believed after my first experience.
Before plaquenil I had very little hope. I was sleeping so much and got probably one good hour a day. This good hour was always in the morning. If I only had a fibromyalgia diagnosis, I would not have received plaquenil and I wouldn't know life could be ok again. I have hope now.
It is awful to think that others are denied the opportunity for some sort of life due to being misdiagnosed with fibromyalgia when they actually have a ctd, and not receiving correct treatment.
So sorry this has been so long winded! I hope it helps. I am in Australia. Lulu.
Lulu, so glad you shared this. That Rheumatologist! Thank god you had the sense not to see her again. So pleased to hear of your excellent response to Hydroxy Plaquenil. With hope for a *real* Rheumatologist out there for you when you're ready. Panda x
I was diagnosed with fibromyalgia in 1996 and over the years I have had major flares from times of stress such as bereavement or problems at work and physical trauma like accidents that have caused injury to my body. I was diagnosed with SLE in October 2018, I knew immediately that new symptoms were not connected to fibromyalgia and I was able to articulate this to my GP who order bloods for my rheumatology appointment. The fatigue was off the scale and the joint pain crippling. Dry mouth and eyes, red itchy eyes, skin peel inside my mouth I knew could not be fibromyalgia. My memory of being diagnosed are similar to my SLE diagnsois. You are given a name for how you are feeling with no explanation and left to research the condition yourself. What has been positive over the years is my GPs' support with not just looking at medication but from time to time offering me alternative treatment. Unfortunately this support has been lacking with the SLE diagnosis and I'm not sure why? If not for Lupus UK I would feel totally isolated.
My fibromyalgia systems increased with the SLE for example feeling like I have been injected with poison so that tingling and burning sensation that runs through my body. Tender spots, elbow, shoulder, hips, etc and sensory changes. In my case at times I think I'm able to distinguish between the symptoms for fibromyalgia and lupus and then there are days I'm left wondering what's going on with my body? It's all a mystery?
Thanks for this KeepingUpBeat, can you write a bit about how you can tell the difference between the fibro and lupus symptoms please? Did you find your lupus medication helps with any of the symptoms that were first diagnosed as fibro?
Hi MelanieSloan with fibromyalgia different areas of my body ached and are very sensitive to touch, clothing that is heavy such as an outdoor coat even covering myself with the duvet could be excruciating when in a fibro flare. In a fibro flare I can hardly get out of bed, my whole body tingled as though there was electrical current/poison running through my veins. It is difficult to grip things because of loss of muscle control but with Lupus joint pain I have noticed a change in the shape of finger knuckles, stiffness of joints and locking in fingers, knees and feet. I've also had problems with my cervical spine since lupus diagnosis. The fatigue is about the same with both conditions when in a flare, although I seem to be in a continuous state of fatigue now since coping with numerous auto-immune conditions. People come up to me even complete strangers to check if I'm okay. This week as I finished a home visit the client commented you look very tired. Days of exhaustion are followed by days of bed rest. Today, I've stayed in bed all day because yesterday was a bad day. With fibromyalgia I've had problems sleeping, IBS and excess urination.
The main difference I've found between lupus and fibromyalgia is joint pain, headaches, palpitations, nausea, hair loss (LPP), dry skin eyes and mouth and skin and mouth sores which I did not have with fibromyalgia. I take Amitriptyline for Fibromyalgia and very the dosage according to how I am feeling but also knowing I need to be clear headed for work. I've been prescribed Pregablin when new symptoms started appearing affecting my hands and feet. I think this is when Lupus went undetected and eventually my GP stopped prescribing it persuading me an increase in Amitriptyline dosage would be better but I think this had more to do with the medication becoming a controlled drug on 01 April 2019. I'm not sure whether the hydroxychloroquine is helping the symptoms of fibromyalgia, I can only say they are no worse than normal and less of a worry than my lupus symptoms.
I think it would be great to have research into how many people with Lupus also have fibromyalgia, ( I do wonder is it even 'medically possible'' to truely give fibro diagnosis if you most definitely have SLE, as I thought fibromyalgia diagnosis was one where other reasons for fatigue, pain, brain fog can't be seen / diagnosed, and one reason some people struggle getting SLE diagnosis is due to the "medical symptoms / criteria indicators" that have to fit for it to be Lupus making SLE is a very specific diagnosis)
I would like it to be 'common practice' that people suspected of Lupus, UCTD, MTCD, fibromyalgia, and CFS/ME all got at least a ANA screen, as I think change in how readily people got a minimum of an ANA blood test could really help a lot of patients and prevent a lot of misdiagnosis
I personally think the "diagnostic label" itself matters in respect to proper correct treatment, disease monitoring, patients feeling supported and believed, but other than that I personally will not get too 'bothered about' what label my drs give me
I'd really welcome research and discussion into how patients who may have both fibromyalgia and Lupus, are medically treated as in do the strategies for fatigue and pain management etc differ between the 2 diagnosess.
I possibly have some pain that's "fibromyalgic like" as painful but not "tender spots" as such ( pain is constantly there not linked to pressure put on them), but always the same particular area identical to the areas of "fibromyalgia sore spots" and nearly always on both sides...... some of my drs who think this may be "fibromyalgia like" also just always say to me "we can't do much about fibromyalgia other than encourage gentle exercise and pace all activities which I know you do for your Lupus anyway, so we'll just concentrate on keeping your "lupus under good control" , we acknowledge that fatigue is a problem for you but there's not much more we can provide to help with that, we're pleased your "mild and stable" in your lupus, so actually we're happy with that .... I also agree with that statement
I was under the care of a very senior Rheumatologist in Australia - who - unknown to me - was actually a pioneering researcher into Fibromyalgia. When I was referred to him I'd had SLE for 12 years with renal involvement and possibly some neuropsychiatric Lupus - but not many other gross physical problems. I was his patient for 20 years. He spent a lot of his career creating diagnostic criteria for fibromyalgia - while also trying to prove a link between Lupus and Fibro.
He was also the head of a large Rheumatology department and thought I'd be pretty safe under the care of this man. He had multiple degree's including one in nephrology (I think) and interestingly enough - one in medical sociology. He seemed absolutely lovely and caring - but looking back I always walked away from his consults feeling inferior and small without me knowing why. I was totally sucked in by his façade of decency and its possible when I first met him he was decent.
But as his career progressed, my health diminished. I was involved in a car accident where I broke pretty much every bone in my body. I'd also acquired a mild brain injury that back then only slightly effected short term memory and executive processing - this aspect has recently become worse - but according to recent neuro -psychiatric reports my intelligence is pretty much in tact. In fact the neuropsychologist warned my other Doctors that despite my difficulties I'm quite intelligent - as Its been a little bit like living with a mild verbal - locked in syndrome where I'd lost my previous quick verbal agility and found it harder to organise and multitask - skill you need to have when seeing Doctors. Despite this I never lost the capacity to commutate symptoms and often bought lists to compensate for short term memory problems. But even bringing lists lead to contempt and psychological labels - as if this was some kind of deranged behaviour in of itself.
Its possible this Rheumatologist picked up on this new vulnerability - because vulnerable women was what he was interested in. Trouble is this man had no idea about what being a vulnerable marginalised woman actually is. He came from an extremely privileged medical background and would never have stepped foot in the world I came from. When I finally read his online research - his interpretation of me and us - implied that we are sub normal - neurotic - and pretty much every very negative DSM label - or rather - labels that fell into the 'bad' personality disorder category. He pulled all these out of a hat - or rather his imagination. We were either thick skinned or thuggish or so thin skinned we were neurotic with out of control thought processes. Chaos incarnate. It was pure misogyny. He simply loved the word neurotic too. It was his favourite.
He had me down as - a neurotic knuckle dragger with flat line anxiety. It didn't occur to him that I was anxious because I'd been living close to homelessness for many years due to SLE and had a disabled brother to fend for in some of those years. He wasn't interested in my reality - only his own.
Of all his degrees, this man lacked one - in psychology - nor did he ever seek my opinion about myself. He just assumed. He was the king of assumptions and being a professor that taught GP's and other Rheumatologists - he taught other Doctors to assume. It would seem he taught them all too well. I know the medical fraternity here considers him like something akin to a fluffy white bunny rabbit. They all love him.
I presented to this man one day with protracted fatigue. He came over and pressed two points near my shoulders, waved his hand and declared I had fibromyalgia. He then told me slow gentle exercise was my only solution - perhaps learn meditation or yoga - end of consultation. Must say I was initially relieved - if a gentle walk and relaxation was all I needed - it should be easy to overcome. But the fatigue became worse along with so - so many other things. I didn't realize my life was about to become a protracted nightmare that has stayed with me from 2006 until right up to today. It was all SLE Lupus.
After the fibromyalgia diagnosis I could not access medical care. He isolated me from the rest of the medical system by writing to every concerned GP or specialist that my flares where 'most likely anxiety' ….and I mean absolutely all of them. He also hoarded pathology results showing I was flaring and having renal problems and didn't share this with other GPs or specialists.
Two life threatening flares and eventually after getting a diagnosis for one of them at least - I then had to contend with undetected damage that was fall out from these flares - where I was still treated as if I was still not quite human - not quite to be believed - not quite credible. I'm still battling with the mop up. I had to use every ounce of energy to push a compromised body and brain just to barely stay alive and I'm still doing it.
I'll stop now because recalling what happened next will take a bit more psychological energy than I don't have at the moment.
I just wanted to present what lies behind the mind of one of the pioneers of Fibromyalgia.
I'm sure not all Rheumatologists who diagnose fibromyalgia are like this and don't hold the same beliefs as this guy. But from what I see with the posts here - I think they might be rare.
*Its diagnostic overshadowing.
*Its gender and class contempt wrapped up in a respectable medical label.
Just my opinion of course : )
- but I've studied some history and anthropology - including some medical anthropology so I have a bit of an idea.
I originally fought it as a stand alone diagnosis because of the often incorrectly assumed and somewhat historical interpretation that it is a soley psychologically based illness and I did not want that label. Strange reaction on reflection as I have worked with people with the diagnosis and I know there are also many physiogical factors co- contributing to the disorder. I also did not have key indicating factors eg key points of pain but did have a pre existing autoimmune disease and new autoimmune disease indicators eg positive ANA , lymphopenia. Fibromyalgia as we know is not considered autoimmune in origin. However my.presentation in part affects my sensory nerves systemically particularly when I have a flare and this cannot be explained so far..suggestions offered have been small fibre neuropathy. ..guillen barre syndrome ..and Co existent Fibromyalgia and this I can now consider more readily. Hope that helps
I was diagnosed w fibro after i kept complaining about to fatigue. I do not believe i have fibro as i do not have the pain that is explained as the main symptom of fibro. I do take medication for it as i cant lower it as it started causing depression when i try lowering the dose. Im at 40mg, managed to go down from 60. I do not believe my fatigue comes from fibro because there are other lupus related symptoms that i have that do not correspond to the inflammation (the reason my doc thinks my fatigue doesnt come from lupus is that i do jot show inflammatory markers in blood). For example i have Raynaud's that's not inflammatory in nature, but its still always there as a sign of lupus. It doesn't get better or worse with taking antiinflammatories and immunosupressants... I also excercise every day, eat healthy, have healthy weight, take vit d and b complex supplements to make sure the fatigue is not cause by things other than lupus...
Correct. That was my point. I see i wasn't clear. My point is that there are conditions such as reynaulds that are directly connected to Lupus, but they are not inflammatory in nature. So in the same way fatigue is connected to lupus even during the time when inflammation in the body is low. I was pointing this ouy because there are some doctors that think if your inflammation is normal then the fatigue is coming from some other reason such as fibro and not from lupus, which i believe is wrong and dangerous for patients. It might be the case that the fatigue is caused by other things and not Lupus but not always
I am very lucky that I didn't get stuck with this label however, my sister did.
She saw the same NHS rheumy as me, around about the same time, 2013/2014?
She got the Fibro label.
Rheumatology here discharge all fibro patients, back to the sole care of their GPs. I am not sure if this is simply a numbers thing? They cannot possibly cope with any more patients on their list? But these patients rarely get monitored and it often turns out they ahve more going on, but are never taken seriously.
My sister ended up on some heavy duty pain relief from her GP and that was that. I was sure something else was going on. She had many symptoms like me and then some that were different but I was convinced she was on the auto-immune spectrum too.
So as she was getting no better and spending more and more of her days in bed, I decided to take her with me to the London Bridge Lupus Centre last year. We had back to back appointments and took our mum too. The lovely doctor that I had been seeing there was amazing with my sister. She had been ignored locally and thrown to the scrap heap. And she's 5 years younger than me. When we requested her GP notes to take with us, every entry started with FIBRO & Depression & ANXIETY. Every one. So whatever she said, that's what everything was put down to.
The London doctor listened, looked at her photos and she had a thorough physical exam. He told us that he could see why I might have thought she had lupus too, it was lupus like but not lupus. She was on the auto-immune spectrum and had EDS and most likely POTS too. He prescribed Hydroxy, as he said he'd seen good effects with EDS patients too.
The fibro label has been erased. At last! And unsurprisingly, her GP is much more helpful now! Although she will never get the NHS referral to the UCL specialist EDS department in London with specialist EDS physiotherapists, (as recommended by the doctor we see in London) she is getting local physio. Unfortunately she lives in Wales too - so accessing care over the border is nigh on impossible.
BUT also, she now faces the issue that she has been on some heavy duty pain relief prescribed for Fibro when she actually never had Fibro to begin with. She is having much better appts with GP who is helping wean her off some meds and introducing others.
I hold my London Lupus Specialist that I see in very high esteem, for my correct lupus diagnosis and for giving my sister the correct diagnosis. In fact I have recommended him to many others and often get a thank you when they have seen him. He told someone I know that he does not like the Fibro label, as he knows patients are then left un-monitored and he thinks there is nearly always another explanation for the symptoms and pain. So I think Fibro is a very ease one to pin on patients whom they don't understand, or have the knowledge or professional curiosity or time, to monitor and work it out for themselves.
Thank goodness you were able to get your sister seen at London Bridge Wendy39 .
Sounds to me like those in Wales could do with a regular shuttle bus service to London...and reimbursement of costs from your woeful NHS 'service'.
Reading through all the responses to Melanie's questions' just gets tougher...I'm now about ready to weep in frustration and despair...so much damage and pain inflicted on so many people.
Think all doctors, including trainees, should be forced to spend a week reading posts and replies across all the HU 'medically based' fora...because what we read here is reflected across all such HU fora.
What makes it even worse is that my sister went through a very bitter divorce and then 2 custody battles, which she lost and her poor health was used against her. Her 2 children now live with their Dad.......So now she really does have mental health issues and the EDS and POTS. My poor Mum.
I am sure you can imagine how I struggle to trust anyone here.
Between myself and my sister and the lupus support group that I run has meant that I've been in touch with over 50 people in our area now. It's impossible to not get angry. When we made our group complaint to the Community Health Council, the Chief Officer looked like he was fighting back the tears. I have sat and cried listening to some of my members tales - they have been suffering ignorance and complete indifference for many years more than I have. It's heart breaking. At our last meeting, one who has had lupus for many many years said to the Health Board boss that she had given up, on herself and everything else. If only doctors would read HU, they would learn so much more.
Wendy...oh your poor poor sister. How (many bad words) that her poor health was used against her...and she lost her children. Mental health issues - is it any wonder? Makes me want to scream and stomp...and I bet you’ve both done that in plenty. I do so hope that she finds better health and some peace...but that feels an almost ridiculous thing to say given what she has to deal with. But I am truly sorry that this has happened to her...and to you.
Entirely agree that doctors should read HU (think I said in another reply it should be part of their training - one week, full time (perhaps I even said it to you hmm - spoons are running out...😉).
And so he should have to fight back tears...and then get busy and do something about it. Pronto. 'Cause words are cheap. Get acting Mr Chief Medical Officer (he has a big big job in front of him).
It's so tough having to deal with everyone’s pain as well as your own...I rarely cry (training I think), but do,when I read some of the tales here...and shamefully also after bad doctor appointments. So I really admire the way you battle one with this on behalf all your Welsh Lupies...all Lupies everywhere.
It's really hard to read that one of your group members has given up on herself and everything... I so wish I had a magic wand and could 'fix' everyone and everything. Immediately. But all I have are a few heartfelt words and virtual hugs. I'm thinking here that apologies, those grudging things that the NHS occasionally let slip - they just don't cut it, do they.
It really is very hard to fathom how this happens, or can be allowed to happen, in this day and age! You couldn't make it up if you tried because it’s beyond any reasonable comprehension.
As to trust...I can't imagine how you could ever trust anyone ever again given what you, your family and friends going through. And here...more of the shameful same.
And there...I feel a rant coming on so I'd better stop.
On a better note, I'm so impressed you managed to get to your meeting after the understandable impact of that terrrible letter. I don't know how you pulled that out of the hat...good for you Wendy 👏👏👏👏👏👏.
I'm off now...speak again soon. Take very good care xx
Thanks so much for sharing this Wendy, so sorry to hear your sister's story too. Interesting to hear about your London Consultant's opinion - thank you
Just curious about your comment that Fibro 'appears to bring lots of bucks in some parts' louise-a...is this happening where you are? Private appointments?Alternative therapies? hmm...very curious...
Louise-a...that is truly shocking. And I have to say it sounds very dodgy (a person who helped people like you...worked with their bodies and minds). Hmm...I smell a whiff of something very unpleasant. And I suspect a distinct lack of medical qualifications- but I could be wrong.
And I'm pretty sure that this type of onwards referral to a 'private someone they know' is outside of all medical and ethical guidelines.
Preying on vulnerable people (we all are 'cause we're chronically sick and would try practically anything to get well)...it's despicable.
Disgusted and cross on your behalf...more especially because it sounds as if you were given false hope but got no benefit whatsoever.
I just wonder how many other people this may have happened to...
Your story sounds much like mine. One rheumy tried to label me with fibro, which is when I took the reins. After seeing another doctor and a resulting positive ANA, I have been freed from the "dustbin". But like you, I had to go all the way to the top to get FM off of my medical record. We have to be our own best and ferocious advocate. Healthcare should not be that way!
I'd had a diagnosis of SLE for 23 years when I had two flares that went untreated because of a fibromyalgia. I was diagnosed with Fibromyalgia because of a patch of increasing fatigue where I was finding it hard to do basics like walk very far and care for myself. This fatigue over time turned into something a lot worse and I became bed ridden and became totally unable to care for myself. I'd turned to my Rheumatologist and GP for help - but no one did - with one of the GPs saying "patients who jump from one Doctor to another are neurotic"
I'd had patches where my limbs were jerking and my heart rate was constantly altering. I literally felt like my entire body was curdling and I remember being so weak lying in bed that I actually begged god to take me - to just please let me die. But upsettingly for me I didn't - I just remained in bed living in what was by then the fetid rotting mess of my flat just existing somewhere in-between life and death . When I started to develop sharp and near constant chest pains. The hospital was literally just around the corner - so I staggered there and asked for help. They tested me for a heart attack - but when they figured out wasn't having one the contempt began and the ugly looks form staff was undeniable. In this state I managed to - as calmly as I could - explain to the Doctor that I'd already had a terrible history of Doctors assuming it was anxiety when eventually I was diagnosed with a real medical problem. He drew the hospital curtains - went away - and then when he came back he spoke - 'VERY' - loudly to a colleague - just behind the curtains - " I've never seen such a serious case of anxiety in my life" . I was discharged. I remember one of the nurses - possibly the only one who saw through what was happening ask me how I was going to get home. I came so close to screaming - but I managed to composed myself and said "I'm going to walk" and had to reassure her I lived very close by. I remember that walk home as my heart hurt so badly - and I fully expected to die. When I didn't I eventually I rang my Rheumatologist - and I asked him could I have a referral to a neurologist. His answer was "it couldn't hurt". This was the very man who was writing to all Doctors that every symptom was anxiety. When I saw the neurologist - with one examination he admitted me to hospital. A nurse trying to take blood told me my blood flow a functioning in a strange on and off way - she'd never seen anything like it. I was given a lumber puncture - which was OK - but the blood tests came with Low B12. I 'now' know from my own research this caused de -myelination of nerves. About 11 Years later I was diagnosed with peripheral nerve damage. I'm still waiting on an MRI of the spinal cord ? I've asked with no success.
When I saw my Rheumatologist after the hospital admission I was full of many questions so he could assure me that all the symptoms I was having was due to the B12 deficiency. - He was almost cowering in the corner. He told me he thought the SLE had attacked the lining of my stomach - destroying my ability to produce intrinsic factor - something you need to absorb B12. Recently I dug up some pathology results from this time and also saw that my renal function was below 50% which would also explain part of the issue . After the diagnosis of the B12 at least - I was woefully undertreated for the flare. All this lasted over a period four years - perhaps five years.
Quite stupidly - I thought my rheumatologist wouldn't make the same mistake twice given how he'd reacted in the consultation afterwards. After it happened I had tried to find another well established Rheumatologist - but he seemed to know absolutely nothing about SLE and told me I'd have to be mad to leave the care of the renowned and respected Associate Professor I had. There was no internet around back then and I didn't think I had any alternative.
Being undertreated for the SLE I still believed I had fibromyalgia even after all this. I had no idea my renal numbers where bad and had no idea of the damage that had happened to my body so I devoted myself to doing all I could to help the fibroyalgia. Meditation, yoga - gentle exercise - lots of walking.
Then a few years later I became very unwell again. So weak I was in bed again. I was having terrible stomach problems - too much faeces that were the wrong colour and smelt like something between a boiled dog and an oil refinery. I was instantly diagnosed with irritable bowel. I was again jumping form one contemptuous GP to another. I saw a local Gastroenterologist who seemed willing to try and figure it out - until he got a letter from my Rheumatologist saying it was most likely anxiety. One day I turned up hopeful that this specialist was going to save my life - only to find him wanting to prescribe a sedative. My legs were aching, my muscles were spasming, by abdomen was bloating - and any concerned GP who wrote to this Rheumatologist got the same letter back. Its most likely anxiety. I received many psychology referrals - but no medical help.
When things became extreme a colonoscopy was ordered. By this time my mind was entering a kind of delirium where my memory wasn't working well, my sense of reality was warping and I could barely figure out how to function when I wasn't in bed. My reaction to the gloop I had to take to clear the system put me in such extreme pain that my whole body went into a gigantic painful cramp. I was sweating and nearly screaming from the pain. (Id previously been told I was good with dealing with pain having broken both arms and legs in a car accident)
My legs, arms neck muscles were spasming causing my head to jerk. My whole body was jerking. I later found out I was also running a temperature. I rang my GP's office and was promised a call back. No call. Then by night I eventually I rang my mother - who had to drive 100km to help me. When she saw me she told me I should go to the hospital emergency - I told her it would be just a waste of time - I'd already been there a two times and was told it was anxiety. I decided to sedate myself to sleep with my mother - sitting there with a number for an ambulance. I survived, and when I turned up for the procedure the next day - the nurse asked me why I didn't go to the emergency and thought I shouldn't have the procedure given how unwell I was. I was desperate for an answer so I said - no - please go ahead. The Doctors didn't question it. The colonoscopy found nothing but I was told when coming too from the procedure I had a new GP.
Given my mind was compromised by this stage I didn't remember this fact - which became part of the a problem. I didn't have a GP. I was also vomiting - and unable to eat. I went to my Rheumatologist a few days later - my head and arms jerking, vomiting - unable to keep food down - utterly weak. He told me to take a Xanax. This did calm the jerking down - being an anti seizure medication.....He seemed to think this was a solution - but he said he wanted to test my catecholamines - to see if I might have an adrenal tumour. Catecholamines are also used in fibromyalgia research and was thought to be a fibromyalgia marker. He seemed bewildered that I was relieved that he was testing me for cancer - but I just wanted an answer and treatment at this stage and an end to the near constant physical suffering and the mental suffering as I was being bullied by every GP I came across. He ended up testing my catecholamines twice, both tests came back negative. Somewhere amid all this he also referred me for Trans Cranial Stimulation - I thought to help with a chronic balance/body bobbing in space problem - The procedure had to be stopped because gave me a silent migraine - that lasted a month. I thought I was going to be like that forever. It was a Fibromyalgia referral.
Eventually I sought out another gastroenterologist who prescribed the digestive enzyme Creon. It was a miracle drug for me - I got some energy back and was able to start to think a bit more clearly and look after myself again. The Gastroenterologist had written in his letter that this was a sugar pill effect.
Then - when I thought I was actually recovering I got a call from my Rheumatologist telling me I had kidney problems. I asked was it the SLE and he said no. I asked whether it was urgent and he said - if it was urgent I'd have you here right now - no......in three or four days will do. Then I never heard from him again. Over the next two weeks I rang his secretary for the referral. Eventually after about three phone calls she said - don't worry - I'll make him do it - Once I made it to a nephrologist - I noticed I could barely hold my end of the conversation - I was in a delirium again. I was still wondering - if its not SLE then what the hell is it ? I thought it might be lymphoma because my lymph nodes were large on the left side. Of course it was lupus. The biopsy showed major damage and I wasn't expected to keep my kidneys. The Rheumatologist had been sitting on pathology showing I'd been flaring for many years along with unacceptable renal numbers. He was distracted by catecholamine testing just when I most needed a renal test.
This all happened over a period of three years - but its taken me about four years to recover.
I did keep my kidneys, and I've since found out that I need to take Creon full time due to low digestive enzyme's - after being taken off them after the renal flare. (Thankyou Cuttysark for leading me in the right direction) I've also had increased damage to the nerves leading away from the spine - causing - what is now - mild gastroparesis. My stomach stopped at one stage - and a gastroscopy showed a stomach full of food that hadn't reached the intestine - but even after everything that I"d been through - and having a different specialist overseeing my care - I was told I didn't follow the pre - procedure instructions properly and must have eaten before the procedure. I lost 30 kilos - and again - no help. I also have autonomic nerve damage effecting temperature and heart rate as well as balance. I don't know were my body is in space so I have a constant sensation of my body bobbing up and down and waves going though my entire body. I feel like a blob of jelly trying to live on a trampoline. My left side is also becoming slightly weak, numb and droopy and unless I concentrate I don't walk with perfect symmetry. All this has also given me a full blown Raynaud's, and vascular constriction dilatation problems that - over the summer made it hard for me to breath - with my feet and fingers going blue. (again - I was diagnosed with a panic attack and I couldn't get help anywhere - not from the hospital emergency - not from one GP - with one asking me - "what's so special about you - I have other people with chonic illness who can cope - why cant you" . She insisted she give me the names of psychologists. I relented and walked away.
All this damage came from a fibromyalgia label getting in the way of SLE treatment. All trouble getting help now is probably a hang over from that label.
The medical record does not self correct after a diagnosis. The medical record never says - sorry - all these labels I accused you of when you were dying are wrong. The medical record was - and still seems to be - just a a papery type of instrument for mob bullying where one Doctors Idea about me feeds into another until who I actually am is lost. It all started with the Fibromyalgia label. I was diagnosed with ME. before this - but this label never seemed to attract the same level of hatred.
And just to make things worse - my left sided problems - have been recently interpreted by a neurologist - as me - putting it on. He asked me to walk in a strait line down a passage way and back and I did - showing what externally looks like an extremely mild balance - co-ordination disability. He encouraged me to walk straighter - so I did. I can put on a good external show. He thought the reverse was happening. This helped me gain a functional neurological syndrome diagnosis.
Oh Freckle1000...this is just heartbreaking to read and there just aren’t enough words to say how sorry I am that this is happening to you.
Please know that everyone here who reads you 'story' believes every word you say and understands exactly how you feel...so at the very least, here in this space...we hear you.
I just want to give you a hug...so I'm hugging you from afar... xx
Thankyou for that wonderful hug. It makes a difference to know that there are people like yourself - even if they're on the other side of the world - that care, and take the time not only to read what has happened to me - but to believe it. Believing is so important.
At my end If anybody wants to know a little about lupus I tend to have to break one politeness boundary after another just to explain a small part the disease. (and this is in Australia) : )
So I've learnt to say next to nothing.
These traumatic experiences are very hard to carry around. Its so shocking and so repetitive. Here its hard for people to believe its happened to someone who's walking amongst them. My world is so different to theirs - and it all takes place behind the genteel doors of a Doctors office where nobody can see it happening - so it is hard for healthy people to understand.
So one big warm hug back to you Foggyme. Thankyou so much.
Yes, I agree Freckle. So much of the AI disease is hidden and it’s quite impossible for healthy people to understand how it feels to be so ill and yet (most of the time) look so normal. Sometimes I feel like a dead person walking..then someone pops up and says...you’re looking really well 🥴. But at least I'm walking! We do, indeed, inhabit a different world.
Perfectly understand the dead weight of carry such traumatic experiences too...I'm trying to let mine go and look forward to being in a better place. But I don't think these kind of experiences ever go away completely, especially, as in your case, when so much organic damage has been incurred.
It never fails to astonish me how much difference having stranger friends here on the forum makes. Politeness boundaries 🤣🤣🤣...broken here quite often...talk of bodily functions and strange disease manifiestions abound on a daily basis.
Loving the hugging fest so thank you right back at you Freckle...and more hugs xx
I too look extremely healthy - and actually feel like screaming when people tell me I look well. They mean well...…...I think ????
Not so long ago I had a Doctor tell me I looked young for my age. I thought - Oh my god I want to throw this man out of the window. I have to go to the Gym every second day to help keep my autonomic stuff / POTs under control - so I can just stand up without feeling faint. (build up certain muscles to keep blood flowing to the poor brain). Unfortunately this has made me look almost athletic - almost muscly enough for Doctor chucking.
Thank you for this site, it is so helpful. Also, an Incredible feeling to know there are people out there who have experienced the same challenges and symptoms, and have conquered them. It brings hope.
I have had 3 ANA tests all positive for Autoimmune, possibly Lupus. As a result of the last round of blood tests the Rheumatologist diagnosed me with Fibromyalgia.
I am not satisfied with this diagnosis as I am experiencing more and more symptoms that are pointing to Lupus.
About two weeks ago my entired body flared up in a burny itchy red rash. This was the first, and I have had two occurrences since.
I have also recently found lesions on my scalp. Other symptims include Fever, Joint Pains, Stiffening of Feet and Hands, Headaches and Migraines, Memory Loss/Brain Fog, Flu like symptoms and Loud sounds which only I can hear.
I seen a rheumatologist about two months ago and she prescribed both autoimmune and fibromyalgia meds. When I shared with her the flare and rash she advised it is an allergic reaction to the meds, and instructed me to stop all meds she previously prescribed.
All I want is Answers and a true diagnosis in order to get the correct treatment. I am awaiting an appointment with a dermatologist.
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