Question for folks with mental illness

Has anyone found that their lupus exacerbates their mental health diagnosis? Such as, I'm Type 1 Bipolar and am experiencing all kinds of mess concerning Prednisone. First it was too much, now that I'm tapering I'm experiencing withdrawal and pain symptoms that the Pred apparently was masking. The day by day press of never ending symptoms also mess with my mind. I am finding it difficult to not indulge in self destructive behaviors in order to cope. Difficult and, at times, failing.

I do have a psych, a shrink, a great support system. But sometimes things just fall apart in my head and I don't know what to do.

What do you guys do????

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  • I haven't got very good advice but what I can say is that I know how you feel and I experience the same problem. I like to talk to people who care about me and that makes me feel better, sometimes going out doing things I like can help too if im feeling up to it. Hope this helps, even a little bit :)

  • What's always helped me a lot is meditation...when I as 18 I learned yoga & TM (transcendental meditation). I'm sure my self destructive tendencies would've been much worse without daily TM...which got me through uni despite relatively mild infant onset lupus.

    The other helpful constants in my life since youth have been walking...in cities, in farmland, in the wilds....and gardening. Reading & listening to music have always helped too. All this has been key to managing my mental health issues

    As I got older, I adapted TM to my lifestyle and it turned into sort of a daily mindfulness session. E.g. my lupus worsened in my 30s onwards, making long naps a must....and I found a way to combine napping with meditation. I also found counselling helpful...as well as certain body therapies (especially the Alexander Technique). This was when walking & gardening began to be difficult due to my increasing disability, while photographing plants & gardens became more important.

    In my late 40s I found a psychosyntheisis therapist. This approach to counselling is a perfect fit with me...I continue to benefit from it every day even now I'm 63. My self destructive tendencies remain, but with every year that passes I feel better able to help myself resist these urges.

    Certainly prednisolone makes me feel hyper, which usually isn't good for my mental health...the hyper usually segues into depression. lupus signs & symptoms generally are depressing...and I'm v thankful my current treatment plans are really helping, because this means my depressive tendencies are less strong

    Over the decades, Lupus has made having a social life increasingly difficult...which has been very bad for my mental health....discovering this wonderful forum has definitely been a lifesaver . All of you help me daily to keep things from falling apart in my head. Especially when I begin to feel lost and can't see a way forward. And you take the pressure off my immediate family, which is good for us too

    I hope something in there helps

    Thank you for asking your question, quirkytizzy. I'm looking forward to reading the replies as they come in. Am sure your thread will help lots of us

    🍀🍀🍀🍀 coco

  • ooowh. Like your psychosyntheisis. Will study.

  • I ❤ psychosynthesis: it does IT for me 🤗

  • Hello,

    Optimising mental health is I feel, important to us all, with or without a diagnosis of a mental health issue. I view mental health as a continuum, not something that has a fixed state, rather something that changes day by day, indeed moment by moment! For me if things start becoming dark or restrictive (closing in) I make myself go out with nature, walking, with or without company. I also practice meditation, or indeed listen to inspirational speakers on you tube. Light exercise can also be beneficial in providing a feel good factor as long as it's not to strenuous!

    There is always light, somewhere. Wishing you well.

    Bright blessings

    TTx

  • Love the idea of "bright blessings" made me feel good just reading it!..Thanks x

  • Hi I developed mental health problems shortly after I had a Lupus diagnosis, so for me my mental health is definately linked to my Lupus.

    I get hypomanic episodes (one Dr thought I may have bipolar disorder as I've also had some depression on record, and he wondered if when I sleep a lot due to fatigue if that was really a depression. However my depression is usually just a general feeling low and usually for a definate reason eg whem I had to give up working. Also I can "snap myself out" of depression and it doesn't last more than a few days so I don't think it;s true depression or really bipolar)

    My manic episodes though are real and I take medication, plus keep aware of things that can trigger me.

    I'm currently awaiting something called "wellbeing" services which I think is a new initiative to help you get coping techniques for your mental health

    Other than that I have a mental health care plan with my GP. I try to keep stress free, and keep as active as I can by socialising, doing gentle exercise, and spend time on things I enjoy like my garden

    Many people with Lupus can get mental health problems as part of their symptoms (and not just because of coping with a long term health condition) This is a link to a useful leaflet on Lupus and depression .... lupusuk.org.uk/lupus-and-de...

    Also as far as I know Prednisolone can cause depression as a side effect

  • Hi Quirky.

    Please don't be so hard on yourself. You have a lot on your plate.

    I don't know enough to really comment.......but I'll comment anyway -

    I really think with these issues - in big part - whoever is managing your Lupus should be deeply involved with your psychological care. They need to be involved in regard to determining - what is a drug side effect and what is - mental illness and for finding the most appropriate immuno -suppressants for you as an individual to keep you in optimal mental health. They also need to determine - what actually are the potential psychological effects of Lupus for you - everyone is different.

    Very subjective account so please take it with a grain of salt. - but I've suffered from psychological labels of every variety up the whazoo since the age of 14...starting right - at the same time " WHEN I WAS DIAGNOSED WITH SLE" . I was donned with my last DSM crown about 4 years ago. -When I responded to the psychologist that this was the 4th DSM label and all - including her's have all been on totally different branches of the DSM manual tree - she didn't even blink and told me I had multiple personality disorder.........butter wouldn't melt in her mouth.

    Now at the grand old age of 48 I had a recent big long sit down chat with a new Lupus specialist who - (after all these years of dealing psychologists, grinding therapy that could only help me so much, and the aforementioned damaging labels) - She has correctly diagnosed me with neuro -psychiatric lupus and openly acknowledged the psychological effects prednisolone has had on my squishy drug sensitive brain. (Made me a little cyclothymic)

    During my last flare if a psychiatrist had nabbed me I would have been diagnosed with Schizophrenia. It took just two weeks of high dose immuno - suppression to bring me back to my resting state of being just mildly bitter & jaded.

    Since then I've found that if I begin to get a bit run down and 'too' edgy about the world Micophenolate (I take the myfortic type) actually relieves the psychological symptoms quite quickly. Apparently the stuff is generally good for the brain - as well as everything else.

    It might be possible that you need to double check for this kind of stuff for yourself ?

    xox

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