Brain involvement

TW: Mental health, abuse

When I first became of aware of lupus as a possible explanation for my runaway symptoms almost a decade ago, a lupus patient told me how she had been diagnosed: after years of lying in a near catatonic state in a mental hospital in the UK. She had been there for years. When a visiting US physician came to check on some of the cases, he made an examination, turned to the shocked team and said 'This woman isn't mentally ill, she has lupus. Treat her lupus, and do it now.' Within a month, she was lucid, within two she was walking and was released. At the time, my thoughts were running rampant and I was going through what I had always been told was a 'psychotic episide'.

'No', she told me quietly and carefully. 'I think you have lupus, or some form of inflammation. You're having brain involvement. You'll be ok.'

It was valuable advice, although it took years before I could get anyone to listen and look beyond the false mental illness diagnosis slapped on me in my teens. But, got there in the end.

I maybe have brain involvement once every couple of years now, even with medication. An infection, stress, a lot of things can trigger it. I've had a really nasty patch inside my head for the past week or so which came to a head last night as I was triggered by something; something trivial and rather stupid in retrospect, but it still made me burst into tears and go nearly into a disassociative state in the Dutchman's bemused, frightened presence. No fun :/ He hasn't got an abusive bone in his body, but a couple of events was enough to trigger my PTSD of past abuse and he got the fallout. Meh.

Thankfully, I can sort of see the signs now, and know what to look out for; I still get this kind of thing, even on medication to control my RA, mental health support in the UK is laughable and by the time I went through the rigamarole and waiting lists, the inflammation will be over. I have to just bide my time, be aware of my triggers, communicate what is going on with Dutchman and pray to my various deities whatever inflammation is going on chills out soon. I'll drag myself into the GP and try at the very least to get a blood test so I can track the recent inflammation level (if such it is) and then maybe I can get my new GP to give me a heads up if my inflammation is more than usual.

I know it's a bit of a scary topic, but has anyone else experienced brain involvement? What are you coping mechanisms? How do you get a handle on it?

I wish you peace and clarity.


Featured Content

Clinical Trial Myths | New email series

HealthUnlocked have put together an 8-week email series debunking common myths about clinical trials.

Sign up now!

Featured by HealthUnlocked

34 Replies

oldest β€’ newest
  •'s no picnic....luckily for me, daily low dose pred + moderate dose myco + hydroxy damp my version down enough to mean I avoid further investigations...but my feeling is these will eventually be necessary...

    Vvvv important subject, so glad you looking forward to following your discussion

    Wishing you every best wish

    πŸ€πŸ˜˜πŸ€πŸ˜˜πŸ€πŸ˜˜ coco

  • Thank you for chiming in! It is rather alarming, and I'm glad to hear the medication is helping you. It's weird, I haven't had this problem in ages, not since I was first diagnosed with RA in 2011. I'm not sure if it's just a 'blip' or due to the new medication maybe not working as well as it should or something else we need to be looking into, but I'm keeping tabs on it, and I'm keeping communication open with the Dutchman so he's aware of it. What a rude awakening for both of us :/ But the man is understanding and compassionate. I couldn't ask for more.

    I wish you peace!

  • Sounds right!

    For what it's worth:

    Not long ago, I attended a seminar sponsored by my rheumatology lupus clinic with a rather grand neurologist at my univ hospital who specialises in immune dysfunction & connective tissue disorder patients.

    Afterwards I asked him about my chronic early onset Neuro cerebral symptoms & explained that daily myco & co are helping to manage them & that signs of progression aren't clear to me. He said that sounds good. And he added that it's in sudden severe onset persistent change in signs & symptoms that Neuro referral is probably most appropriate...

    You 2 are great πŸ‘πŸ‘πŸ‘πŸ‘

  • I have some brain involvement with my Sjogren's but am told that the early signs of it progressing would show as dementia,rather than the disequillibrium and neuropathy that are my staple fare. Fortunately I don't have psychotic episodes, apart from with certain meds and med withdrawal. It must be very scary for you. Xx

  • PS I just wanted to add that the documentary series. Horizon, had a fascinating look at Schizophrenia the other day. It transpires that many of those with this awful condition had been abused as children. There were some appalling accounts and the psychiatrist explained to one sufferer that the resulting voices then came from disassociating from the terrible acts as they were being perpetrated.X

  • Oh yeah, I don't doubt a lot of this stems from trauma but at the same time, pointing at trauma from one's past is often used as an explanation for EVERYTHING which is hugely frustrating. I've experienced it when I kept getting slapped with fibromyalgia (Oh, you had a car accident as a teen? Yes, well that's why you have fibro, BOOM, done, all in your head, then). A friend of mine with a rather horrific case of child abuse now has severe ME...and her specialists refuse to look at any other cause for her condition but that abuse, and she receives no treatment.

    And thank you, it is rather grim and scary, but it was a lot worse when I didn't there was a possible explanation for the episodes, which aren't very common (thank all my various gods). I think it's a bit of a dual-edged sword - I do some of my best creative work when I'm in this kind of state. It's a blessing and a curse, but I now know how to rein it in. This isn't a state I want to stay in for long; the mad artist myth isn't an ideal!

    I wish you comfort!

  • As you probably know I'm an artist too so can fully relate. I found the descriptions of hullicinations suffered by people on the Horizon totally fascinating. There was no suggestion that schizophrenia was not a clinical / physiological diagnosis - but a lot of focus on childhood trauma causing Dopamine releases to damage the cerebral cortex I think?

    And of course there's no reason at all why having one disease can't trigger or run alongside another.

    I absolutely agree with you about Fibro and ME stuff. I had to leave a SjΓΆgren's FB forum recently because I got so exaspertated and distressed (probably because I was in middle of terrible flare which made me OTT!) when everyone ascribed their body pain to Fibro and wouldn't countenance the idea that it might actually be part of their SjΓΆgren's or something else that needed investigating?

    Also I have these horribly painful tiny bubble blisters like glass shards on my fingertips that keep returning. I know they are Pompholyx eczema for sure. But the GPs keep blaming my connective tissue disease(s) and Raynauds and refuse to countenance that it could be Pompholyx -despite their text book Pompholyx appearance. It's like they are saying "well you can't have both?!" And yet years ago when my eczema was my main disease it would have been the other way round?!

    Oh well thank heavens for black silk glove liners for painting and a stylus for typing. So slow though!

  • Yes, or at least I think so. I've just been through a year long process of trying to sort out my mental health! I went to my GP a year ago in June to ask for help for severe depressive symptoms (including suicidal ideation- very scary!). I was referred to depression and anxiety services for some life coach sessions-waited five weeks and had six sessions before they decided I would benefit from counselling! Waited five months for availability and had two sessions when it was identified that I may have had some psychotic/persecution episodes and some sort of post trauma responses and severe depression. I discussed my concern that this was inflammatory, as my disease has been very active for over a year now, with little let up, and the assessor agreed it was important that I was not wrongly diagnosed or treated, and my rheumatologist be involved,so was referred to psychiatrist for a more full assessment, who I am seeing on Wednesday next week. A whole 11 months after I went to my GP! I am sure my symptoms are inflammatory driven as for example , I have recently had effusions on my knee that have been aspirated. I have a massive malar rash at the moment and perineal tendinitis, also big with other multiple classic symptoms and my mental health has been 'very active ' shall we say! It's very distressing and difficult to manage. It takes a lot of resolve to get up, go to work and not give in to the very dark thoughts! Grrrr.... my rheumatologist has never enquired about my mental health ...... are they not trained to identify something that is common place with autoimmune diseases and especially lupus? I have had to do all the 'pushing' which is soooo difficult when you have such tricky (life threatening!). symptoms !

    I had a meeting with my manager yesterday and discussed this issue so he can feed back to me if my behaviour changes and I'm not aware of it, and just to make sure I am not over burdened at the moment while I try and sort it out.

    This is the first time I have disclosed these issues outside of my family and care team. Big scary step. I'm glad you posted and can imagine the difficulties you've had and hold out my hand of support.

    I hate this disease and what it steals from you but by bit.

    Take the most and best care of yourselves everyone.


  • From my understanding this particular aspect of autoimmune illness is gravely overlooked; sure, they know the brain is an organ, and it can get inflamed like any other organ, but they don't tend to want to go into HOW that can manifest precisely - either due to stigma or due to not wanting to frighten a patient. I can certainly understand on the latter (although for me it was kind of a relief to know it's something that can occur, it certainly explained where these foreign-to-me thoughts were coming from). The former...well there's no real excuse for that, and I hope the tides turn.

    But for all the urging on 'it's time to talk about mental illness' very little will change until there is FUNDING for same, and as you said, it took you nearly a year to get anywhere. I eyeroll so hard at the life-coach advice - it's patronising in the extreme and it being used as a plaster (as if we're just not capable of functioning as adults). Sort of like saying CBT will solve all things mental healthwise.

    I'm sorry to hear things are so distressing for you right now! Is there any way you can bring up the fact your illness is more active than it should be and is causing you a lot of distress without saying 'mental illness' outright? I know it takes a lot of trust to be able to admit it and therefore can be hard to do (I doubt I could with my rheumy and I do trust him quite a bit). But perhaps, as I mentioned above, demonstrating you are having a lot of inflammation may result in better management of same, which may also lessen the brain involvement for you.

    I admit, I'm on the fence about mentioning any of this to my own team...but at the same time, I think it may be a more common issue than many specialists or patients recognise, and maybe it requires breaking the silence...I'll give it more thought when I'm feeling on firmer ground.

    I wish you peace and clarity.

  • Luckily I'm robust and have insight and am handling this all with a firm grip! As far as I know, I don't have mental illness, I have lupus that is affecting my mental health! I just hope they agree! πŸ˜‚

    Either way, both my neurologist and rheumatologist know that I am seeking more advice, so in for a penny!

    I do hope you find firm ground. Wobbly rope bridges can be off putting! Take care too.

  • Well done to anyone disclosing. I have long-term mental health problems, and ongoing community help since 2010. My mental health problems in all likelihood arise from being raped between the ages of 6 and 9, within the family, and unable to tell. I had an excellent psychiatrist tell me over 90% of the women in-patients had been abused as a child.

    Does my physical illness affect my mental health and vice versa? Yes, to an extent, and that's why I benefit from having the community help ( which is extremely overloaded). I have PTSD and am triggered a lot by items in the news. I know most of my triggers, but there's often something new.

    As far as my physical health goes, I'm actually helped by the "well-controlled bi-polar disorder" label because it seems they are less likely to use any convenient explanation of depression or imagining things. Further to that, my psychiatrist clearly sees the deteriorating physical health and can back me up. As a mental health inpatient any physical problem is in your head and requires extra strong zombie meds. I'm not at all suprised to find that there are people in those setting with physical problems that can be helped.

    I'm debating whether to post this - it's giving me palpitations! OK, post and run away .......

  • You are brave, and courageous, and I witness! Thanks for speaking up! Yes, I know most of my triggers and can deal with them usually, but sometimes a few things come out of the blue. I also have issues with too much doom-and-gloom news, so I have greatly limited how much media I consume, which helps a lot. There's a block you can get for a computer as well when you need a break which can control your internet useage - it's called SelfControl, and it works very well, just in case you need.

    I'm glad to hear your experience with mental and physical health is a lot more holistic! It's not been in my experience unfortunately, but I know it's possible to not just chalk everything up to the 'in your head' explanation. I guess that's why I find the fibromyalgia dx I was slapped with so frustrating as it's applied like a giant brush over everything, much as I found the mental health dx I had did for a while till it got thrown out....and even then, there's a specialist or two who likes to trot the old dx out when they are stumped.

    Bravely done, I wish you calm. I needn't wish you courage - you already have it!

  • Well said lupiknits. My childhood molestation by a trusted senior family member for sure is relevant to all aspects of my health. Am vvvv much relating to your story. Thank you for explaining. I have posted about this here in passing re various of my emotional & psyche issues + how they relate to my physical issues...each time my heart has been in my mouth...we are not alone here on forum...over the years I've had others connect with me here ....which means a GREAT deal to us all

  • Well done Lupiknits, there's no need to run away. Mental health will never be normalised unless we talk about it. You might have struggles but it doesn't make you a bad person. Thank you for sharing. It's less lonely when you know others understand.

    Take good care of yourself and I'm sorry you had to experience those things.

  • Hi to all, I am diagnosed bipolar 1 since 1990 and have been hospitalised many times with paranoia and delusions. I have been an avid reader on this site for some time because I intermittently get mild lupus-like symptoms. I have had chronic back pain, frozen shoulder ( both arms, not at same time), vertigo, tendons and ligament problems in many areas of my body, especially costochondritis.

    A few years back I came to the conclusion that my mental and physical symptoms were all autoimmune. My bipolar symptoms have largely vanished ( 4 1/2 years free) by eating a mostly paleo diet i.e. no gluten, little dairy, no soy, legumes or white potatoes. This diet eradicated my physical symptoms too.

    My latest symptoms are dry eyes, nose and mouth and dry hands which have developed cracks/ cuts on my fingers. I believe I now am more sensitive and react to chemicals in food and tablet fillers. I take a very little amount of medication for bipolar and when my generic brand was changed I got these symptoms. I had a few old brand tablets left and the symptoms disappeared but now I have run out of the good tablets it's a problem.

    Incidentally many bipolar patients are labelled with fibromyalgia and arthritis for their physical symptoms. Current health experts try to put people in a particular category when really there is a great deal of overlap.

    all the best, C.

  • Thank you for weighing in on this. It's interesting to know that on the mental health side of things the fibro label comes up. :/ somewhat depressing as well. I hope you manage to figure out what's going on with your current symptoms.

  • Increasingly I think the Fibro and ME labels are potentially harmful precisely because they lead many of us to hold back on describing certain kinds of pain and our psychological state to our doctors as we probably should. We fear, for very good reason, that this may later bite us on the bum! Georgie-girl's recent posts about a pain management course have also touched on similar issues I feel.

    I think the fact that many of us with autoimmune diseases are women of a certain age(ish) compounds our fear of being given the "hysteria" label - as happened in previous eras. And of course it still happens only they have replaced the terminology!

    I work so hard on appearing rational and level headed for my medical team. Sometimes I really think this actually counts against me because I'm too convincing to be as ill or in as much pain as I often am. My guard is always up and, on the odd occasion where I let it down, I've had some very bad experiences, which really haven't helped.

    But as you and everyone else says - the need to be believed and taken seriously is overwhelming enough that many of us to omit a lot. For me it's pain that I often keep schtum about. I think this goes right back to childhood as well - and being shouted at or mocked if I hurt myself or suffered from a painful condition. Not remotely on a par with physical abuse. But for me, it was a kind of mental abuse certainly, and it takes all my courage to convey all types of physical or mental pain now. My late mum had mental illness that went unaddressed - and she often projected this onto me.

    So my dread of receiving the psychosomatic/ Fibro label is great to the point of being irrational and unhelpful/ counterproductive. I fear being told my pain is functional or benign in case it's really not and they stop investigating it. This happens a lot to me and others here I'm only too aware.

    But then I also really don't believe that anyone's pain or unwellness is benign.

    Thanks so much for writing this post Silvergilt - in common with the others who have bravely spoken out - it's quite a hard subject to broach. X

  • Fascinating - like the rest of this thread! I do love the lupus forum!

  • Anyone who has suffered abuse in childhood suffered abuse, Twitchy dear chap, because it leaves marks, whether physical, mental or emotional. It seems to me from this forum ( not excluding our male members) that what we all worry about is being dismissed and told our physical problems are "all in our head". And many of us have been dismissed or else go in to see docs in an incredibly stressed state, convinced we will be. Perhaps that's something we emotionally expect from "the grown ups" . There's something rotten in our medical field.

    Thank goodness for the forum, and members like Silvergilt who bring up this subject!

  • πŸ‘πŸ‘πŸ‘πŸ‘ exactly! Thank you for explaining this LK

    I am sure this is why I kept my molestation secret from 7 years old until the abuser died when I was in my late 40s. (I was so repressed, I even kept this secret from my conscious self...but that didn't stop it haunting me in flashbacks & nightmares...all my life on a frequent basis until he died & I went into therapy...and then there was the strain of fearing I wouldn't be believed!). This widely respected & successful lovely man was the least abusive of the adults in my immediate family...and I loved him dearly....he was my safe haven & security....this is why being molested by him was massively devastating + why I could tell no one. And i am sure this contributed to the way in which I endured my decades in the diagnostic wilderness: I was feeling the way you're describing so fluently.

    And this is why now, even though I've had enough therapy to understand & forgive, and my health probs are finally convincingly diagnosed + responding well to treatment etc, I find myself managing PTSD due to the childhood abuse & the medical system "abuse" day to day forever, it seems...

    It's tough to stop these patterns of feeling & behaving once they become entrenched over decades. All I can do is manage these patterns day to day...with your help here + various constructive self-help techniques that have stood the test of time.

    Thanks LK: my feeling & experience is that, by discussing this, you're making all the difference to me...and I know to others too.

    Am so glad you're here with us....I think the WONDERUL response here to the big current discussion of medical PTSD & the "difficult patient" supports your every is the link:πŸ˜‰-difficult-patient-label

    πŸ€πŸ˜˜πŸ€πŸ˜˜πŸ€πŸ˜˜ coco

  • I just replied very belatedly to Coco's earlier post about PSTD. But I just wanted to add thanks again to you Lupiknits

    I do really know, rationally, that many of my formative experiences counted as a kind of abuse. I even sought out therapy (was referred by old GP) and my therapist tried her level best to drum this into me. But I guess, even with hindsight - I feel deeply disloyal to my poor, beleaguered, now dead mum, for saying it out loud. And you guys are all so much more helpful and rewarding to discuss this stuff with than any therapist. x

  • Crumbs coco you've got me boo hooing. Just glad to help anyone x ❀️

  • πŸ˜‚πŸ˜‚πŸ˜‚πŸ˜‚ me too πŸ˜‰πŸ€žβœŒοΈπŸ€πŸ’

  • What do you mean by brain involvement. Do you mean physical symptoms or mental health?

  • Sorry, I just read the whole response chain now and it seems that mental health was the issue.

    I think we are all affected by this disease and I sometimes feel that because of its unpredictability we lose the belief of healthy people that things are 'going to plan' in all aspects of our lives. Situations where before we used to say "I'm sure it will be ok" have now become more of a "I'm sure things can go worse any moment now".

    Moreover, the frustrating process of getting medical attention and care spills into our normal lives and I personally find it difficult to believe in anyone keeping to their word, or hearing me when I speak. As a result I have very little trust to go around - I keep thinking no one is listening. That is isolating and makes me feel detached somehow.

    The reason I asked about physical symptoms is that I have those too: fatigue, eyes not opening properly, dizziness, cognitive deficit, all these pile on top of the other.

    Sometimes I too take it out on my lovely husband and I feel racked with guilt afterwards. He's learnt to recognise when lupus is affecting me in that way, so he remains very calm and sometimes just hugs me. And that's enough - just to know he's there with me, that's very powerful, it helps tremendously. I, of course, worry about the effect of this disease on him but he's already saying that I'm worse off anyway suffering with it.

    Everyone I know talks about out their wish for the body being healthy. I'm yet to hear someone being more worried about mental health than a heart attack. But our brains carry our identity, they are as critical as the rest of the organs.

    At least we know what this disease can do and plan, somewhat, for what could come. You're good to recognise your triggers and to have a plan.

  • That's beautifully expressed Purpletop. I think the psychological impact of this disease can be challenging, even if it is not specifically causing depression or other recognised mental health diagnoses. Our families often take a 'hit' when our symptoms spill over and out of our control.

    It's easy to recognise the organ damage that it can cause and fret about reducing the risk of that, and try to reduce the symptoms of pain and fatigue in particular. But I think until you have central nervous system involvement that is triggering a true mental health issue, it's hard to realise how equally scary that is. It has an organic cause and is every much a physical symptom as a swollen knee!

    Bless your lovely hubby holding you safe when you erupt with cerebral irritation! He is very special for doing that.

    The more people are honest about the extent of their psychological symptoms, the more they will be acknowledged and managed better as part and parcel of the course, as it were! If people hide behind existing taboos, then nothing will move forwards. It's an individual choice I know, and I understand that people don't want to have all their symptoms attributed to say depression, when in fact it's the other way around. But if one is truly suffering from distressing mental health symptoms then I think it's good to tackle everything. For people struggling to get s diagnosis of their autoimmune disease too, it might clinch the deal as it were. Some autoimmune conditions are not associated with psychosis for instance, and true clinical depression is seen less often in some as oppose to others.

    Mental health issues on top of physical ones can make the whole thing so much harder too. I hope people who are suffering like this manage to get treatment and relief, so they can feel a little more like themselves again.

    Take good care Purpletop and everyone πŸ’–πŸŒΊπŸ˜Š

  • Yes I have mental health problems and I'm sure it's linked to lupus, as I've no history of trauma , and never had any mental health issues prior to having lupus

    .... I've had "brain fog", lack of concentration and forgetfullness ever since I started with my fatigue/exhustion, Drs now thing thats part of my lupus (probably a "brain" thing and not just due to fatigue

    .... very shortly after diagnosis i had an episode of bad confusion/ disorientation that was put down to "sunstroke" but I now think was because I did not realise that I have some sun sensitivity and I think it was because my Lupus was flaring up and affecting my mental health

    .... Then a few months later I had a very bad episode of hypomania .... I thought I was actually finally feeling better as my hydroxychloroquine was starting to kick in so I did not recognise the mania as a problem .... I had to be sectioned under mental health act .... At the time Drs called it either "Hypomania" or "organic mood disorder" ... some drs thought it may be psychosis linked to the lupus, one dr even wondered if the hyroxy had triggered it. I personally think it's part of how lupus affects me , there is some family history of mental health issues in my family, and I think the stress of Lupus diagnosis, lupus flare up and all that went with losing my job/ financial security etc all "triggered" my hypomania and mental health

    A few years later my diagnosis was changed to bipolar disorder as I have occassionally had depressive episodes .... my depression is usually triggered by genuine "problems" such as when I was learning to cope with having a long term health condition, coming to terms with having to give up my job and career that I loved, coming to terms with my faigue and just how much I have to pace everything etc... and I can "snap myself out" of depression usually within a few days by making myself "do" things eg set myself goals such as to "get up" to go out into the garden, to go for a swim and I'm well aware that people with "true depression" are stuck with depression for long periods and can't snap themselves out of it, so I'm still a little unsure about the "bipolar" label. However I definately do get hypomanic episodes and I do have to do all I can to treat that and keep my mental health good

    My coping mechanisms are

    Accept I have mental health issues

    Be aware of hypomanic symptoms,... for me I can normally get to sleep easily and sleep well my first hypomanic symptom is insomnia so for me it's usually quite easy for me to recognise when I'm not "well" as my sleep becomes very disturbed. I then refer to a "check list" of other symptoms. I also take note of what my support network of family and friends say ... and accept their opinion, particularly if they think I need further medical help (usually I do know myself but sometimes the hypomania prevents me from seeing the reality of how "bizzare" my behaviour is, and I really would not wish to get sectioned again so I've learnt to accept what others say)

    Recognise my "triggers" and do what I can to avoid them / cope with things if issues arise

    Have a support network I can turn to for help if I need it. especially if I'm hypomanic (or even if others think I'm manic and I don't)

    Medication .... I was on Olanzapine for years, I'm currently on Quetiapine ... since being on this I've had the "added bonus" that I wake up feeling as if I've slept fairly well (I've had Lupus since 2003 and never before have felt refreshed after sleep ... I think it's the Quetiapine that makes the difference)

    Self regulate myself when I'm hypomanic such as "hide" my credit card, try to stay at home, limit how much time I spend on the computer, avoid driving, avoid making decisions

    Try to "snap myself out of depression" such as do as much as I can to not just "sleep all the time" try to get some exercise, try to socialise

    Try to keep my Lupus in general "stable" as I'm more likely to get mental health problems when Lupus is in "flare up"

  • Thanks for your great insight into life with lupus and the added tricky component of mental health symptoms that sound quite difficult to manage. It sounds like you're doing well to keep yourself out of hospital. Lupus certainly does no one any favours and triggering psychiatric illnesses is one of its meanest traits. There doesn't seem to be much stigma with swollen, painful joints, or some of the other symptoms, but you can soon clear a room if you say you have psychosis! πŸ˜‚

    It's good to be open and frank if possible, but there are still taboos out there ( I think that many people have fragile mental health, so if you talk about it, it might be catching or something, so the subject is avoided!). I hope you don't get treated badly when you're less well. Take care.

  • Fortunately these days I have a really good handle on my mental health .... there is always a slight worry I would get hospitalised again with it ( not a nice expericence to be so "out of touch" that you need to be sectioned for your own good!) but fortuanately I now cope really really well. In fact for last few years I've only needed GP care, my meds, and my own coping mechanisms so I'm feeling good about that. I think it's great to be open ... our mental health is just as important as our physical health

  • Brilliant

  • Thanks very much for bringing your experiences here - this is what I am talking about; even in people without any sort of background with abuse, this is clearly an issue. That sounds like you've really had a horrible experience with your mental health but I'm glad you've got good coping skills. I think it's useful to have someone you can check in with (I call it a 'reality check'). While the most recent patch has been grim, I did actually realise it was happening this time, so it's a bonus! I'm pulling myself out of it slowly but it is a reminder to me even though I physically felt ok, I'm not 'cured', you know what I mean?

    I wish you peace.

  • I really appreciate everyone weighing in on this - it's been a rough couple of weeks. I think the move put more stress on me than I had previously thought, and it's always a huge adjustment changing your living situation after a decade of being on one's own. Things are starting to improve in myself so fingers crossed it continues! Thanks everyone. Love, love, love.

  • Hi SilverGilt

    I remember when I was first struggling with an unexplained illness almost 30 years ago, I was admitted to a rheumatology ward in Bristol where the standard treatment for a severe flare was admission and 3 weeks bed rest.

    The lady in the bed opposite spiked a fever every single morning ( I remember being told then that morning fevers are indicative of lupus) and then one day, she suddenly arched her back and lay flat on her back for days without moving, eyes and mouth wide open, staring at the ceiling. I thought she was dead and found the whole thing very distressing (I was 23 at the time) but I've never forgotten the power of this horrible disease. High dose IV steroid soon put her to rights and she was discharged a few days later. Xx

  • Thank u. I feel a little better now. Although I have many of the symptoms if lupus and sjogrens, including a butterfly rash, I don't have antibodies to back it all up x

You may also like...