So I had my 1st rheumatologist app on Thurs which I have been waiting for 3 months for.
I have been keeping a daily log of all my symptoms and went prepared with medical history, list of current meds, questions I had.
Although the consultant seemed friendly enough he soon started to irk me. He told me to start from the beginning and tell him all my symptoms...waste of time as I felt he stopped listening (pretty extensive list to be fair) this followed with him asking me questions like how to I react to sun etc I started to feel hopeful that he was looking at Lupus as a possibility! I then had a 5-10 min physical exam which involved testing my reflexes, bending some joints etc.
After this came the bombshell, based on what I had told him and my previous history I met all the criteria for fibromyalgia, I also apparently have tennis elbow and mechanical back pain caused by wear and tear, I'm 37 BTW.
Even though he could not find my blood results which GP had done ( who suspected Lupus due to butterfly rash on face) which came back negative! He sent me to have these re done after our app. Despite this he gave the above diagnosis told me I was far too young to be on so much medication and would not add to this so instead would get GP to prescribe some anti inflammatory gel! Hahahahahaha how the hell is that going to keep me in my full time job that I have just started a phased return to after 3 months off for extremely debilitating fatigue!!
I couldn't have been any clearer about how the symptoms are affecting my daily life. Oh and he suggested swimming once a week would help greatly, yeah where does he propose I find the extra energy for this when I am struggling already???
The best part I have been discharged back to GP he doesnt need to see me again?? No further tests?? Oh a referal to dermatologist for rash on face and pin prick rash all over both arms and chest ( he said and I quote ' I don't know about skin I'm a rheumatologist!!)
It has taken me since Thursday to calm down enough to update you all on how it went as I feel so fobbed off. Yes I admit I meet the criteria for fibromyalgia by I also meet many for Lupus and feel this fits better with my historical symptoms and evolving ones but hey it's only my body what the hell do I know, after all my blood says no....
Rant over sorry just had to get it all out.
Thanks for reading
Xx
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I understand the NHS is under constant pressure but we are people!! I feel like I would cost the taxpayer so much more if I get to the point I am unable to work instead of early intervention sadly I feel I've missed that boat now and will just have to deal with the aftermath like far too.many others.
Thank you for your understanding and taking time to reply x
Hello I am sorry that you have had this experience.I had similar problems and was also given a diagnosis of fibromyalgia at one point which I was not convinced by my diagnosis took years and a number of referrals back to rheumatologists eventually I saw 5 over a number of years.My GP was very good and kept refering me as did a liver consultant.Having finally got a diagnosis and on immunosuppressants my life is so much better and I nearly gave up hope of getting help.What I want to say is don't give up I know how hard and upsetting this is and I hope you get answers and help soon.Jane
DearWWifey first off (insert as many expletives here as you choose), and you will understand just how much this type of experience lights my fuses. Sadly I have experienced this along my journey for SLE which took 12 years, and more recently has been outright dismissed and gaslighted, when I actually had two very serious, one life threatening condition dismissed. Only my own tenacity forced them to investigate further.
I am so very sorry you have experienced this, it simply is totally and utterly unacceptable. Today it seems they will take the referral if your lucky, you wait 3 months, and then they want you gone ASAP. Not only is the plan to remove your medications wrong without first investigating, it is cruel, and a national disgrace, age has nothing to do with Lupus, not at all.
Yes we know the NHS is under strain, we get told enough, but I simply cannot accept we have to put up with gaslighted consults, dismissals, that can be to the detriment of our health.
Just so you know, positive blood tests for Lupus are not the whole story, a good experienced Lupus Rheumatologist will look and consider clinical presentation too, and most of all follow up with blood tests.
Happy to PM you the name of my Consultant and Hospital if you decide to pursue this, and ask for another referral elsewhere.
I am sorry for my rant bank, but posts like yours, touch a very inflamed nerve with me.
Glad you came here to let off some steam. (((Hugs))))))
I am curious what you think the rheumatologist should have done? I don’t mean to come off as unsympathetic or difficult but there is protocol based on patient presentation and history. You, like many others, may have had a long time until diagnosis. We hope testing becomes available in the future. But specialists are trained to evaluate a patient and order tests when they will be helpful. When the physical exam and history does not look like lupus or another autoimmune disease and certain tests have already been done, further testing may not be indicated. In fact, the American Rheumatology Association and probably the NICE guidelines in the U.K. recommend when to do ANA testing and when not to. ANA testing when there is not a reasonable suspicion of lupus is considered bad practice. It leads to false positive results, which is not helpful to the patient.
The fact that a doctor does not diagnose what the patient thinks is the diagnosis does not reflect that they are not listening. If doctors are truly not listening and not doing appropriate tests, that can easily be investigated. There are guidelines for just about everything.
Sorry to read this, and yes many experience the same outcome. Do some research on local good rheumatologist and go back to your gp for a second opinion referral!!!!!
X
I am lucky to so far never have never been discharged from Rheumatology or Neurology - my two main specialisms. Nor have I yet been diagnosed with Fibro.
But far worse - I have been diagnosed with FND (functional neurological disorder) which is the dog’s bottom of nonexistent conversion disorder nonsense ever dreamt up by neurologists. FND leaves almost everyone labelled with it in abject misery and medical abandon as far as I’m able to gather.
So it is good that this consultant has at least referred you for further blood tests. And if nothing shows he may be correct in saying you are very unlikely to have Lupus - as only about 5% are negative for bloods. Also it is good that he’s referred to to dermatology for assessment - a good dermatologist can be worth their weight in gold and can hopefully distinguish between Rosacea, Vasculitis and discoid Lupus. And by then you will have your latest blood tests back and perhaps something will have shown up loud and clear this time.
The other possibility is that you might have Sjögren’s which presents in 25% of sufferers like me as seronegative and often includes various types of arthritis and rashes and many systemic symptoms - but is very often overlooked or misdiagnosed as Fibro or ME or FND when the sicca symptoms aren’t yet too noticeable.
Either way I do wish a time would come when all consultants felt obliged to see a patient at least twice before discharging them back to their GP. Discharging after one appointment seems just wrong. And I also wish they would take the trouble to listen to why the person in front of them feels the diagnosis they are giving is wrong.
After all we live with our symptoms 24/7 in an era where Dr Google and forums such as these exist whether they like it or not. Choosing to ignore the instincts of patients is just bad practice.
But whatever - Fibro and ME are being taken more seriously now by GPs and hopefully yours will help you to get a second opinion if you feel, after blood results and dermatology appointment are over, that one is warranted. So don’t despair! X
Twitchy, I’m still chuckling about your ‘dog’s bottom’ diagnosis!
I agree with you that it’s far too easy for consultants to bounce patients back to the GP’s. GP’s are under enormous pressure not to refer in the first place and often face penalties so they must have good reason to consider referral. It must also be demoralising for them to have their concerns trivialised and quashed in this way especially as they are the ones who pick up the extra work of chronically sick patients who they’re ill-equipped to help. Xx
Many people are unhappy with the fibromyalgia diagnosis, probably because of the lack of effective treatment and yet debilitating symptoms. If you wouldn’t mind telling us the symptoms that are making you concerned you have lupus and what your lab results are, we could maybe help you better. Doctors take the diagnosis of lupus very seriously. You have to have both clinical and lab evidence of the disease. Although you may feel “fobbed off,” the doctor may have actually felt he was giving you good news.
Oh I feel your pain. I too waited weeks after my NHS rheumatologist appointment was cancelled twice. Went private in the end. My referral was based on high inflammation and joint pain. My GP was concerned I might have fibromyalgia too. I have Hashimotos btw and was really suffering with pain all over but more recently my elbows were hurting so much and my arms aching. The rheumatologist said to me to start from the beginning. I had written everything down in a letter to him as I knew I would be nervous and tongue tied. Totally dismissed my letter , gave me a brief check over and diagnosed tennis elbow. He wanted me to up my exercise and see a physio! What a complete waste of time and money !
My experience was practically identical to yours and I hopefully will be updating and uploading a post today about this - I went in December and it’s taken me this long to be brave enough to say something (he knocked my confidence so much). I completely understand what you’re saying and how you feel and it’s not fair!
You go to a doctor for a diagnoses, a treatment path but most importantly, to be made to feel safe, secure and respected. If you aren’t getting any of those, despite being discharged, you are completely within your rights to see someone else or go to a different hospital if you have the means. I know it’s a lot and it takes a lot out of you - but you must fight. You must continue on the path you consider right. And if you think it’s Lupus you must fight for that diagnoses.
I’ll post here later the link to my experience, if you feel like having a gander. I hope it may make you feel not so lonely 💖 and my inbox is always open if you fancy a private one to one chat!
Hi, what a total disappointment they were! You'd think they'd await the derm test outcomes before discharging you back to your GP! We all know bloods shouldn't be solely relied upon but just a note on the bloods...if you had the ANA, find out what test method was used.... I only test positive when its the gold standard HEP2/IFA method & CTD screen is always negative, I've had this proved from the same blood sample several times. Also, have you ever had thyroid antibodies (TPOAb & TGAb) tested? If not, it's a good idea - I initially had mine done privately. A large amount of us have probably seen some ignorant medical people at some point but you'll get there eventually. You know you better than they do & you can ask your GP to re-refer/ask for a second opinion ☺
Would you have preferred that the doctor tell her she has lupus, even though he knows that means she has a 50% chance of having kidney disease, a greatly increased chance of cardiovascular disease, possible involvement of the central nervous system? The chorus on this site is almost uniformly that someone who is sent to a rheumatologist to rule out autoimmune disease and given a diagnosis of fibromyalgia is « not being listened to » and should continue to fight for a diagnosis. I think this is misguided. The person may feel better. But depending on where they live, this could cost a lot of money in unnecessary consultations and tests. Hard to imagine as strapped as the NHS is that they will pay for a referral to a rheumatologist when the first rheumatologist has ruled out autoimmune disease. If symptoms change, a GP can re-refer or repeat tests. My guess is the doctor knew exactly what he was listening for. He saw no signs of lupus or another inflammatory disease. Prior tests showed no indication either. That is just my guess. But a lot of people here seem to think these rheumatologists are clowns masquerading as doctors. They make these diagnoses every day.
I can hear what your saying, but I’ve just spent the best part of five years being thrown from pillow to post to try and get a diagnosis. When you are suffering from an autoimmune disease I think you just no because we feel so poorly. I’ve been fobbed off with possible mental health, dermatitis, rosecea, stress, pms because my bloods were normal!!!! Only now having gone private I have anti bodies for Myositis and scleroderma, tests I’ve never had done because some doctors don’t know what these tests are. I’m now having to go for chest scans and thigh scans to determine any damage that has been done. I’m sure you can imagine how I feel thinking if this has been caught early enough maybe there would not be a reason to suspect such damage. So many times I asked for a skin biopsy and was declined. When I hear of a persons battle or the upset an appointment causes them, I hear their pain. It may not be lupus but there are many other diseases that mimic lupus. I’d never heard of Myositis before. I’m glad I kept up the fight and will always encourage others to fight because I am one of those who’s bloods always said I am well 😔
I think your case is quite different. If I remember correctly, you were already put on steroids. So they have suspected for a while that you have an inflammatory disease. Even now it seems they cannot easily diagnose you. You absolutely have done the right thing to keep trying to get help. I do not think anyone ever thought you had fibromyalgia. Again, you are hard even for the most experienced doctors. Your myositis is, I think, even rarer. Yes, people know when they are not right. That is not diagnostic, though. That happens in fibromyalgia, RA, mono, MS and many illnesses. Fibromyalgia is a real illness that can look like lupus. It is common, and lupus is not. Is it really helpful if we encourage people to « fight for a diagnosis » if that diagnosis may not be accurate? I don’t think it is.
trust Me to get something so rare 😔. Even the top lupus specialist thought it was lupus, I had photos of all the visible symptoms. Nose sores the worse . My gp finally put me on steroids after going there everyday showing my symptoms, and bless her she has been my medical knight in shining armour. I do think I may also have fibromyalgia, but I won’t go into that with them 😉. Not yet anyway, I’ve just got rid of my mental label 🤣
Oh, Lisa, you really have been put through the ringer. Your GP would not have put you on the steroids had he not thought there was something inflammatory going on. We are going to give you your own special name for a diagnosis. Hey, many people with autoimmune disease have fibromyalgia. The studies show they have the most fatigue. It is not a « fob off » diagnosis but a disorder of the nerves and brain processing. At least that is what I have read. What medication have they put you on?
I deffo think my brain is affected that’s why I can’t sleep. I’m only on hydrocloquine at the moment until they have run their further testing as I may need additional medication. For now I’m trying to be positive but more sleep would really help me win this battle
You really do need the sleep. See if you can get a book on improving sleep. I will see what I can dig up for you. Message me and I will try to remember details of the method they used on me at the sleep clinic sleep 😴 💤 is important.
I’ve felt like poop since they took my steroids away but hopefully get back on them once the tests are complete and I can look forward to gaining another 3 stone 🤦♀️
I can totally understand the frustration at being asked to start at the beginning and seeing the eyes glaze over very soon after you get started. Funnily enough my blood tests were negative except a high ANA but when I finally saw rheumy after years of consultants giving me that look I went to that appointment with an A4 bullet list of symptoms that I handed over rather than try and explain and after a lot of questions and tests pretty much as you describe I was diagnosed as there were some symptoms that were very lupus specific .. I can’t remember which as at that point I’d never heard of lupus so it didn’t really sink in but the sun reaction and my particular photosensitivity reaction is very much up there. But from the point of view of the list of questions and the physical exam this is very much a part of the diagnosis process and although this irked you he is actually correct to do this and it shows he’s not relying solely on the bloods. Anyway my main point is the bullet list definitely seemed to make a difference and is worth a try.
As someone else has said above it’s a good idea to put some of the results and symptoms here though as people will help you judge if lupus is likely and where to go next if it is. And if it’s not there may be some things that are specific to another possible diagnosis that may be worth considering also.
The only other thing I would say is when you are able to look more objectively at the situation review the appointment in your head. I don’t mean that as saying you aren’t justified in your anger and feeling let down as many of us here have experienced such appointments so please don’t take it as a judgement. I do however recall one of my doctors making a similar comment about the number of different meds I’d been prescribed over the years and how thick my file was for my age. Due to past experiences I was very defensive and took this as a criticism and was quite annoyed that he was insinuating that I was a hypochondriac. Some time later and with a clearer vision I looked back at it and viewed it from a different angle. I realised with hindsight that what he may well have been saying was someone my age shouldn’t be having this many problems so maybe there was a problem. Unfortunately my negative reaction made him back off and it never came up again as he wasn’t my normal doctor so I didn’t see him again until after the fact. Anyway with hindsight and viewing from a different angle it is possible you may get more from the comments upon review .... then again you may not as I’ve had that side too lol
Finally I’m sure your post doesn’t intend to do so but don’t discount how severe fibromyalgia is. I know others who have been diagnosed with this and are suffering severely in ways you have mentioned. The diagnosis he has given now gives you the ability to go back to your gp and ask him to see if there are any consultants you can be referred to with a special interest in fibromyalgia and for treatment to be targeted with this in mind. If he is right then targeted treatment, no matter how little of it there is, may well help you with some of your symptoms and you will hopefully get some help and relief this way. If it’s not then it won’t work and this gives you a much stronger basis on which to go back and push for further tests.
Good luck and I hope that rather than being a total waste of time this proves to be the starting point to you getting some answers.
Oh and I had my first injections in my spine for so called mechanical back pain before I was 25 ... you’re positively a pensioner 😉
You have made some excellent points. The glazed over eyes is never good. But, on the other hand, a rheumatologist sees a certain rash, notes swollen joints, sees ulcers in the mouth, hears about on and off fevers, they perk up. Your high ANA is totally different from a negative ANA or even a low positive ANA. Fibromyalgia, from what I can tell, is debilitating and painful. Honestly, fibromyalgia patients are far more symptomatic than I am with autonomic dysfunction. My nerves do not cause pain thus far. The point is fibromyalgia patients need treatment. Even if, in the rare cases, they do end up with a systemic autoimmune disease, they still need treatment for the fibromyalgia at this juncture. It is a tough diagnosis with no good treatment. Very hard.
Wow thank you all so much for your responses too many to reply individually as way too tired but every single one appreciated.
For those that asked about my symptoms over the years these have been the ones I can remember...
Severe fatigue - back and fourth to GP for years but kept putting it down to depression which I disagreed with every time as this was well managed. Eventually I was so exhausted I fainted and fell down a flight of stairs luckily only cuts and bruises but I insisted on being referred to sleep clinic as I suspected sleep apnoea as I often woke choking. Further tests revealed severe obstructive sleep apnoea. I stopped breathing 66 times an hour for the time I was monitored. Scarey!!! Once given cpap machine fatigue improved for a while.
I also have ulcerative colitis and have been on azathioprine for 8 years this is also well managed most of the time although another cause of the fatigue but still I was getting worse. Felt ill almost everyday for years. Stomach pains, night sweats intolerance to the sun/heat. Pin prick rash on the whole.of.my arms which recently spread to my chest. Chest pain, bradycardia, joint pain, headaches. Each year that passes the list gets bigger and bigger. Rash across nose and cheeks which a duty doctor mentioned when I went on with a uti and that's where I first heard the word Lupus as she thought I showed a lot of classic signs and wanted to do some blood tests which came back clear...
Sorry to bore you all haha, don't get me wrong I'm not saying I don't have fibromyalgia and instead would.like a Lupus diagnosis I just feel there is more to it and this is just the beginning of my story. Also have low iron low vitamin D and low lymphocytes.
You sound like another complicated patient! You might want to talk to your GI doctor. Ask her/him if some of your symptoms can be attributed to the ulcerative colitis. Has anyone evaluated you when you had your chest pain? The fatigue — awful as it is — will be viewed as a non-specific symptom. Have you taken pictures of your rash? Did the rheumatologist see the photo? Does your UC cause fatigue when active? The fibromyalgia, I think, has to be making you feel even worse. Can you see a neurologist for your fibromyalgia? My view is that with your negative ANA and no specific lupus symptoms, a second rheumatology consultation will not help. But your GP and your GI doctor can be watching you. It isn’t a black and white thing. Symptoms evolve, and monitoring is actually what they do. You are really suffering. Feel free to post here with questions and any symptoms you think of.
Thought of one more thing: ask about dysautonomia, which can co-exist with many autoimmune diseases. You are fainting, intolerant of heat and you have a rash on your face that could be flushing (my rash looked more like a butterfly rash than my actual autoimmune rash). Just a thought. This is hard to diagnose too.
The exact same thing happened to me very recently. I had been really looking forward to my appointment at the Lupus clinic (I am in Australia) and was hoping for some guidance on how to manage day to day and what to look out for in terms of symptoms being normal VS 'seek immediate medical help'.
I have APS with 7 miscarriages under my belt and positive anticardiolipin antibodies. I got meningitis two years ago and spent a year trying to manage again afterward. I couldn't walk for the first month after I was let out of hospital and the steroids wore off. I was discharged being told that my immune system was responsible and to stay out of the sun, but no one mentioned lupus...
Over the following years I noticed immediate fatigue when I went outdoors during the day. I had the malar rash (though I didn't know what it was. I kept pointing it out to my husband saying, "I think my blush is making me sunburnt.") If I so much as hung the washing on the line, my arms would get a rash. I didn't know these were lupus symptoms.
Anyway, some wonderful people on the HU Hughes page pointed out to me that it sounds like I have Lupus. So I looked it up, and had to agree. Went to my GP, who agreed and diagnosed me on the spot. My ANA was 1:2560. Went to a Haematologist who concurred with the diagnosis. All was fine and dandy until I went to the Lupus clinic. The worst medical experience of my life just doesn't begin to cover it.
I won't go into all the details, but I think gaslighted pretty much sums it up. She then wrote to my GP and Haematologist and demanded that they 'undiagnose' me, because I clearly have a case of ME CFS and (you can guess what's coming next..) Fibromyalgia.
I would add that she was removing my diagnosis of not only Lupus but also APS. This is with me meeting all of the clinical criteria for both.
My wonderful Haematologist called me the next day, said her diagnosis was a 'rubbish diagnosis' and Primary Lupus secondary APS stands. So I am without a Rheumatologist at present.
I hope my awful experience helps you to feel a bit better. I say ask for your blood test results always and do lots of research. As you see, you have already had one response asking what sort of test type they used as they can vary. My Haematologist told me that he had one patient who tested negative at two pathology places and then sky high at another. Same testing method, different pathologists. The tests matter. If you don't get a positive ANA, you might get a positive Dsdna, or another of the tests that point to a diagnosis. Keep trying.
P.s. The pattern on your ANA is also important. So take note of that. Mine is homogeneous. And the ANA varies. Mine is currently 1:640...
Thank you so much for sharing lulu and I'm sorry you have suffered as you have. I hope you are now being treated adequately and have regained some resemblance of a life. I will continue my battle and will be asking for a copy of my medical records and will definitely be researching the blood results once I have more detail.
Thanks ww, I hope it helps you to know this happens to many of us - even with positive bloods. It was only a month ago, so still quite raw, and I'm scared to seek out another Rheumatologist. My Haematologist has me on a plaquenil trial of 100mg (I have to chop them in half) to see how I tolerate it. I'm currently housebound during daylight hours and swim in the evenings. The UV index here is 10 - 12 so not very hospitable to the photosensitive among us.
Hugs back and the best of luck with your diagnosis. Lulu.
The point about getting copies of your blood tests is very good - the number of times I’ve been told mine are normal but they aren’t. Also it depends on YOUR normal. Comparing them over a longer period you may well see a pattern that the doctors miss.
Are you being treated for the low vitamin D at all? A fair few of your symptoms can be caused by that as well. And I’d say it could be worth getting a thyroid panel checked, especially for auto immune. My TSH was in the middle of the range so it took a hell of a long time to get my thyroid diagnosed but we now know it isn’t normal for me and has to be maintained a long way below that for me to not feel severely unwell. It was only when an autoimmune test was done that I managed to prove what I’d been telling the doctors all along. A lot of my thyroid symptoms seem to cross over the lupus ones and it’s often difficult to know which is causing which - that may just be me though as I’m a bit of an anomaly apparently and my bloods never match the picture in front of them. (I start off interesting, then become complicated, then become problematic, then become ... someone else’s problem when I get moved to another doctor because they don’t know what to do with me lololol). Worth at least discussing with your gp if they haven’t already tested it as thyroid seems to run alongside a lot of autoimmune problems from what I’ve seen on here.
On the bright side if they have ruled out lupus at this stage then you are one further step on your journey to getting proper treatment - it could take some time still and the process is unbelievably frustrating but if they are saying it’s being caused by the fibromyalgia then once those symptoms have some treatment it will hopefully give a clearer picture as to what else is going on and that’s another step forward. It at least sounds like you have a good gp and if they will work with you then that’s half the battle.
And the best bit of the lot .. if the rheumy has signed you off you now never have to see that doctor again and sometimes that’s definitely a good thing 😂😂
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Fatigue has reached a whole other level, after 10.5 years. Scared it’s narcolepsy….
cytoplasmic speckled ANA - mean anything to anyone ? Also effect of coming off steroids 
Lupus and Radiotherapy
