lupusuk.org.uk/neuropsychia...
There is also the full article of the research if you can't find it let me know I can attach it for you to read but be aware it is a very very long research article but a very interesting one which is very beneficial to all of us SLE .
Hi KnitSewPurl
Also including The Cambridge University Research news page on Alice in Wonderland experiences..
I watched a TV programme, and went into kitchen and saw images of people in the programme superimposed on a container. It really scared me.
(Earlier that week I was wrongly associating things, felt disorientated, and for a few days had found it very difficult spelling and even writing. )
That night, trying to rest and push it to the back of my mind I went to bed early but woke 3am with aching joints, soaking wet, dry eyes, mouth throat, weight on my chest and flesh burn. Suddenly I knew I had a flare.
Because of the article I now see a pattern to this.
The sad thing is, I'm only UCTD. Local rheumatology refused to see me because of negative bloods.
If I went to see local doctors (GP or A&E) and ESR was low, they would say I did not have inflamation. The week before told GP it was 18 in recent hospital visit and I had ongoing headache. He repeated he was not concerned.
I was not sure what to do and gave myself short course of steroid and everything went in two days on 20mg. Fortunately I had left over tablets. Tampered down from 20mg over week and a bit so was very short but this is the last thing I should need to do.
NHS can let us down continually if we do not show their 'narrow criteria markers'.
When we recognise what is happening but doctors locally rely on ESR as their determining test,they could end up sending us elsewhere and us getting the wrong treatment so easily. Their enthusiasm can be in another area that uses very different drugs to those we need and we are more vulnerable when symptoms are psychiatric. This was Friday - the wrong time of the week for me to be able to get help from the one place I trust. The private centres some of us use, are not open 24/7. I would have needed to have waited until the Monday or maybe longer..
In parallel my elderly mum was also seriously ill in hospital in another part of the country. I needed to be well to get to her and see her. I had no choice but to fix myself.
cam.ac.uk/research/news/aut...
so sorry for that and in the same position of having some steroid I would probably have done the same thing. I was constantly told no inflammation in bloods and apart from feeling the affects of the inflammation it could clealyr be seen and this is a bone of contention with me, especially my facial swelling hands and feet chest and neck and I suspect the squeezing sensation in back was/is inflammation too,(only steroids addressed the swellings years after)I also totally understand with your mum as I have same situation with my father and he needs me no matter how I feel at times. I was told on more than one occasion id be sent to mctd department but was never sent because of negative bloods this is despite all clinical symptoms observed pointing them there and that is all before worsening and because of negative bloods my prescription is to meditate and try to avoid stress.🤷♀️(my symptoms are here stress or not and the stress that worsens it is coming from them and their neglect. Not to mention I would probably not be in this situation or still looking for answers had I been dealt with properly in first place . I have been left with dangerous ptosis for 6 years which I just find appalling and discharged by each department without any referral to ophthalmology which is only just happening, I have asked each ive seen and only recently agreed to now send me along with optician referring saying I shouldn't be living like this 🤷♀️. I also repeatedly told them that ice will temporarily open eye and no one would test and yet this is important and a simple cost effective test . optician said they could operate to lift the ptosis but to me I dont want this (will see what ophthalmologist says) as it can and does sometimes open ,so is not damaged, but as all my muscles weaken upon use . When you read what should be done when researching to evaluate problems I am dismayed at the little help ive had totally. Yes there has been covid and crisis but my problems began before that too (ptosis and others).I also relate to your symptoms of severe brain fog, disorientation, confusion, which it was only the steroids helped and my fear is inflammation caused/es this and why I was given steroids before brain scan which could have showed this is beyond me.
Mine is more imbalance I don't tend to get nightmares bizarrely , but do get night sweats quite a bit it is only my give away that tells me I am having a flare up and I will have multiple lesion coming up. Also having a migraine and night sweats on the same days normally also is a flare up for me as I get very very tired and lethargic and very achy all over almost flu like more than normal, this will effect my muscles and joints inflammation worse will be my left biceps, base of my feet and my back and my legs I normally struggle to walk or stand those days. Since stopping the Hydroxychoroquine I have had about 4 migraines attacks so far in 2 weeks I am keeping a record of it. Thing is I have so much going on currently with my back and my hip seeing consultants and now have day case surgery booked for my back(caudal epidural ) to see if that helps I am getting so much nerve pains on both of my great toes, it is worse on my right leg, but yet to sort out about my hip as still waiting for private CT appointment.
This is an interesting subject area KSP and one that doesn't surprise me.
I suffered with very serious acute migraines through peri-menopause when I became aware of the stages of migraine, prodrome being one stage. It became very clear that there are extraordinary symptoms relating to prodrome: exhaustion, excessive yawning, a sudden feeling of anxiety/anger/elation, a mental disengagement like unplugging an electric kettle, feeling too hot, feeling too cold, dizziness, the list is endless and ever changing. Anything 'odd' was a precursor, a warning that a migraine was building. Migraine aura comes in a number of bizarre guises too.
I had 'Alice in Wonderland' migraine too as a child, as did my daughter. The distortion experienced was terrifying and I was so grateful that I was able to reassure her when she experienced them.
I'm post menopause now and whilst I still experience migraine with headache, many of mine are silent migraine now. Whilst obviously easier to deal with, the symptoms of prodrome can still create a problem. When 'stuff' starts to happen, and it does frequently, I just recognise it for what it is. I've never associated these symptoms with my assorted CTDs, I've just accepted that for some of us, migraine goes hand in hand with all of these conditions.
I had no idea that prodrome could be associated with illnesses other than migraine. It's an interesting subject area. It doesn't surprise me that it was difficult to see any specific relatable patterns with the research participants, prodrome symptoms can be bizarre, unexpected and frankly unbelievable; I think we all of us just ignore weird stuff that happens when juggling with so many health issues.
Worried about implications for driving. Need car to go swimming and to shops, and hide from sun. My symptoms went when self-medicated on steroid, which should not be left to do, but as say it was a Friday and ESR never high enough to validate inflammation.
Just emailed my GP an account of what happened and link to Lancet paper and to University of Cambridge page.
Worried output may only be driving warning when I'm fine now, and this could have been one off due to flare not being controlled.
gov.uk/government/publicati...
Looks like under Transient loss of consciousness TLoC affects half the population at some point in lives.
Medical practioners assessing on:
-Provocation
- Posture - if when sitting
-Prodrome
Yes , I know the feeling. I only drive when I absolutely need to. Most of the time I don't drive and try not to at the moment 1. My eyes 2 . Because I am so exhausted and tired. 3 because I am is so much pain with my back and hip. keep safe xx ❤️
My little episode stopped in tracks with steroid and also going for swim later that day. I used to life guard so rely on swimming to stay well.
NHS been hopeless. They see patients who have the bloods yet no symptoms. Yet without right bloods ignore us.
I could not agree more with you. Especially when we have all the symptoms to show for
It certainly is: an absolutely fascinating piece of work, and I sincerely hope that it will help those of us who find it hard to make the medical 'professionals' believe us (although I grant you it might take some time!).
Hahah, yeh especially those of them that refuse to change their ways . To see that it is actually happening to patients .
The more work it might entail the easier it is for them to ignore us.
Starting to get that feeling.
Sad but true. But we stand together for strength and courage and a wealth of experience - and we never give up!
"Almost a quarter (24%) of patients thought their view of when their lupus was flaring never or rarely matched their doctor’s view." They said mine is inactive due to inflammation markers not being raised, but the symptoms have not really changed since the end of 2022. Hydroxychloroquine seems to help the night sweats, but nothing else (although it could be it was going to get worse and it's kept me at the same point). My inflammation markers have never been raised as far as I'm aware. My GP has tested them several times over the years and it's always exactly the same - right at the bottom end of normal. There's clearly something going on if 24% feel that way, maybe that the inflammation markers aren't a very accurate way of measuring severity of the disease (or at least not in everyone).
"Doctors rated their assessment of how the patient is presenting as the most important way of deciding if NP symptoms were caused by lupus. This was more important than tests like blood tests or brain scans. Doctors said that tests were important to rule out other causes, but many NP symptoms don’t show on tests so they were not very useful." That's weird because they're doing an MRI on me for that reason, but didn't think me discussing my mental health diagnoses as perhaps part of Lupus was relevant. As someone who is autistic I don't think judging how I "present" can be that accurate either, unless they're taking into account that apparently my facial expressions don't match what I'm saying. My body language is going to be different to a lot of people they see.
At least your GP refers to your Lupus. I have been living here for 9 years and in all that time if I mention pain or anything, he says contact your rheumatologist as its to do with your Lupus, he never treats me!
There need to be a relationship between your rheumatology and your GP to help each other in every way for the patient. He cannot keep telling you to keep contacting your Rheumatologist for every little thing when your GP is the first port of call. He should realise that. My feeling is that either your practice is over budgeted in their finances and don't want to spend anything on their patients which is why they are pushing their patients to call their consultants or don't want to spend any money at all. Sometimes puts pressure on the GP(doctors) alot . All comes down to finances end of the day. May be you need to find another practice one more suitable and willing to see you and listen to you and take your illness more seriously.
SLE and fibromyalgia?
Neuropsychiatric lupus (NPSLE) or neuro-lupus: What is your preferred terminology?
Does anyone have SLE & polymyositis.
The cause of lupus SLE. 
