A study has found that neuropsychiatric symptoms are very common in conditions like lupus, but the symptoms are often under-reported and under-recorded. Medical professionals guessed a much lower level of these symptoms than patients reported. You can read more about the study's findings in our article here: lupusuk.org.uk/neuropsychia...
We're holding a webinar with two of the researchers on Tuesday 1st August at 5:30pm.
Feel free to submit questions in advance to Debbie@lupusuk.org.uk even if you can't attend, as the webinar will be recorded & posted on our YouTube channel afterwards.
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Hi Debbie, I was involved in this study and got an email about it this morning. The difference between patients and medics in responding whether mental health questions were posed at appointments is shocking. 74% of patients say these questions are never/rarely asked but only 4% of medics say they are never/rarely asked. You have to wonder if they’re talking about the same appointments!!
Sadly I know it’s true - in 13 years of rheumatology appointments I’ve never been asked about my mental health, even when I was in tears during the appointment. And now my appointments are always over the phone, I feel even more neglected and alone. (Currently receiving CBT via local mental healthy services plus sertraline)
Hi marypw. That is an interesting statistic about differences in perceptions. In the paper it talks about how patients said they thought it might be due to clinicians counting the "how are you" as asking about mental health, but patients saw this as a more general question and needed more specific questions.
I'm sorry to hear you haven't had good support for your mental health from your rheumatology department, but I'm glad you have found support elsewhere. Hopefully research like this will help more rheumatologists to see how common these symptoms are, and encourage more joint working between, for example, rheumatology and psychology departments.
🤩THANKS to everyone here who has contributed to this important groundbreaking study: & to our Dr Melanie, to all the researchers involved & to Lupus U.K.: HURRAH❣️👏👏👏👏
Hi. I just came across this post as I have SLE and am currently experiencing frightening nightmares and night terrors and was Googling (yes, I know). Have just read their article and am very interested to attend this event and to find out more. Thank you for sharing.
If neuropsychiatric symptoms are common, why do I always feel like the diagnoses of these things are almost used against me to argue that I don't have an autoimmune condition.
It will probably sound like I have paranoia too, but I feel like having major depressive disorder, ASD, ADHD and anorexia means it's even less likely to be taken seriously as autoimmune related in my Rheumatology appointments. "It's good news, it's Fibromyalgia!" "Don't worry, it's just IBS!" "Don't worry it's all in your head!" A lot of medical professionals are incredibly inflexible. It seems very strange that they do are aware of mental health issues, but in the incorrect way (in at least some cases). I worry that I will end up with irreversible damage due to this way of thinking.
In the NHS, dentists seem to be more knowledgable about these connections than other medical professionals I've encountered.
Unfortunately you're not alone in feeling that way, and this is something that people in the study talked about too. Would you like me to turn this into a question to add to the list for the webinar? For example something about what to do when you feel your physical health symptoms are being attributed to your mental health, and the worry about your mental health diagnoses meaning your physical health is taken less seriously? I'm happy to take the lead from you on wording!
I think including something like that is an excellent idea. It would be interesting to know how many specialists are aware of the connections between autoimmune & other conditions, like mental health and neurodiverse ones, but more importantly their willingness to keep an open mind and putting it into practice. Knowing something, but having worked one way for a number of years isn't going to be something they can change overnight. Maybe the strain on the NHS is one of the factors that prevent them from thoroughly investigating everyone too.
I feel very wary of how much to challenge consultants when I think they're wrong for fear of further fuelling the prejudice (whether it's subconscious or not) or being labelled as difficult.
I think similar to the way you worded it - "what should a patient do if they feel their physical health symptoms are being attributed to their mental health, and the worry that their mental health diagnoses mean their physical health is taken less seriously?"
Hi Debbie, did the video for these questions get uploaded anywhere? I have watched Dr Chris Wincup's presentation on "Neuropsychiatric and mental health symptoms in Lupus", but can't seem to find anything about Q&As on the same topic. Sorry if I'm asking a stupid question!
I remember tearing up at an SLE appointment a few years ago and although the consultant was sympathetic she quickly moved on to blood results etc, showed little interest in mental health and the struggle to deal with this auto illness. I don't think in all the time I've been going to check ups I've been asked about my mental health.
I'm sorry you had that experience. One of the issues highlighted in the study was that some doctors aren't sure what to do about mental health, and this can stop them asking about it or following-up with people. This is part of the reason the study team are working on projects like advocating for more team-working in rheumatology, and how doctors and patients can have better conversations in appointments.
Have you been able to find support for your mental health elsewhere? At the end of the article there is a list of some places you may be able to find support if you want it, and we'll also share some places at the end of the webinar.
I think we have to feel extremely confident in our diagnosis and the consultant to allow ourselves to refer to our mental health during a consultation. Same with answering related questions.
The risks that FridaN refers to are of huge concern for many of us, even without a prior mental health or neuro diversity diagnosis
I would think that this needs addressing better through research into whether the neuro symptoms are actually a clinical feature of the condition itself or are a natural response to diagnostic or future uncertainty - or just the very real fear of what the future might hold for the newly diagnosed with active systemic disease . These may overlap symptomatically but actually are quite different things from a clinical perspective. However I think doctors should be less hasty in trying to compartmentalise/ separate symptoms into functional/ mental health/ active disease groups and consider anxiety and emotional responses as being entirely natural in context of having a systemic autoimmune disease? Being kind to patients costs nothing and doesn’t involve asking explicitly about our mental health. “How have you been?” asked by a dr with a genuine interest, is enough for me.
Thanks for your comment. I agree that it's important (and difficult!) to differentiate between, for example, anxiety caused by the lupus itself and anxiety caused by living with lupus, especially because appropriate treatment may be different depending on the cause. Someone has submitted a question for the webinar about how (or if) you can tell the difference between these things. I suspect the answer will be that's it's difficult, but it will be interesting to hear their response and if they have any advice.
Thanks. I don’t have Lupus so I’m likely taking different perspective on the findings. But this publication has prompted me to ask the charity representing more of my own medical issues, SRUK, if they might consider commissioning some similarly high profile patient-led research for rheumatologists on GI manifestations of systemic autoimmune rheumatic diseases. For me personally this is the hardest thing to broach with my rheumatologist and it does impact significantly on my limited energies and mental wellbeing. Whereas the other neuro symptoms I suffer, such as severe fatigue and presumed neuropathy, are all quite well documented and easy to broach with all medical professionals for me personally.
I know some Lupus and overlap patients also suffer neuro GI issues as part of their CTDs but as far as I’m aware, not as devastatingly as 90-95% of scleroderma (and some Sjögren’s and Vasculitis) patients experience. It would be great to see other small patient-led charities taking their lead from this excellent research you’re undertaking/ supporting/ funding at Lupus U.K
I appreciate your reply. I don't think rheumatologists and other doctors in fields dealing with physical problems know how to treat mental health. Neither do they have the time to do it.
Her sympathy touched my heart and I was hoping to see her regularly but I was moved on to another doctor and another department... No I didn't look anywhere else for support but muddled on as best I could.
I muddle through all the time, I have had 18 months of traumas and infections, I cry at the least little thing, and sometimes feel I am a waste of time, is this depression? and No my GP's havent got a clue how I feel x
Hi Poshcards, I'm sorry you've been having a difficult time. You aren't a waste of time and your mental health is just as important as your physical health. You also don't need a specific diagnosis to need or receive support for what you're dealing with. Dealing with health and life can be a lot to manage!
Often your GP is the best first step as they can refer you to other services, but I understand some people don't like to talk to their GP about it or have difficulty getting an appointment. There are some services you can self-refer to, though this can be different in different areas. You can find out what NHS services there are in your local area on this link: nhs.uk/nhs-services/mental-... and there are also some non-NHS organisations that may be able to help such as the Wren Project: wrenproject.org/
It can be difficult to reach out for support when you feel this way, but I would encourage you to contact someone. You aren't wasting anyone's time.
If I can offer any information or support, please get in touch with me any time.
It seems fairly obvious to me that as a disease which involves inflammation, lupus might be likely to have neuropsychiatric symptoms. Prior to being diagnosed, I was told I had anxiety. Well I did, but I had much less when I was finally on medication.
What I find unusual is that I obviously have some 'brain' impacts from lupus, but these are never addressed. Ditto autonomic nervous system stuff - in particular, I have a problem regulating stress, excitement, and even joy...my system gets too hopped up.
Perhaps medics read my 'mild lupus' label and assume it just means joints/fatigue. Nope, it doesn't.
Similarly, chronic stress can also be a precipitating factor in lupus. Mind body stuff is just so obvious.
I had an initial appt with a rheumatologist over the phone during Covid. I didn't request the appt, dermatology referred me. He said to me I think it's best if I ask you some questions because most of my lupus symptoms involve skin issues. At one point during his extensive list about physical stuff he said depression? I replied with well I'm generally a positive thinker but at times I get low..especially when I'm reducing the prednisolone. On his letter after the consultation he said..."Denies depression but admits to low mood" 🙆🤷Luckily he's left now n I don't have to see HIM again !! 😹
🤩 JUST finished watching this webinar live on Zoom & wish I could 💞💞💞💞HUG all 4 of you: you were really GRRRREAT, Melanie + Debbie + Chris + Paul!
Thank You ALL for this & thanks too to everyone who attended & submitted questions + to everyone involved in these research studies that Melanie & LUK are leading…it’s wonderful there’s more to come in this vein….knowing we are being listened to, & that you are doing everything possible to help us be heard + to improve collaboration between patients & doctors, including in relationships with power brockers ( politicians, professional medical societies , medical schools, hospitals administrations around the world etc) gives me more hope than I could ever imagined possible before in the course of my 70 years of life with Lupus & Co 👏👏👏👏 Coco
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