Not coping...

[DeborahMonmouth]

Hi, Can anyone offer advise on how to cope with the mental effects of lupus. I feel I am bipolar; when feeling better trying to conquer the world, then hit by a flare and plunged into despair and hopelessness. I try to work with pacing when doing well but even that can cause me to adrenalize which isn’t good. I feel like I am allergic to being me. Currently taking levothyroxin, prozac, steroids and hydroxycl. Doctor tried me on azathyoprine 3 times but each time made me violently sick - and worse. Currently feeling a real sense of despair.

[Shorthouse]

I felt like that.all the drugs they throw at us don’t help do they?look into auto immune diets.please !

[fabwheelie]

Hello Have you had a good chat to your GP about this?. It would definately be worth asking for if referal to mental health services and counselling services are possible for you. Also mention if you get things like headaches, brain fog, lack concentration as Lupus can give "neuropsychiatric symptoms" , plus depression can be common in people with Lupus as a symptom in it's own right ( and not just due to the mental health effescts of coping with a long term chronic illness)

My mental health went very very severe shortly after diagnosis when I had a really bad hypomanic episodes (My first one I actually thought my "high energy" was because now they knew what was wrong the treatment was working, and I had no insight at all into how extreem I was. ... I was even "sectioned" due to the psychosis on that occasion, as I really didn't see how bad I was)

I was under various psychaitric services for years, initially with mental health services, and then under GP care. Initially the Drs thought my hypomania was possibly part of being bipolar. Post diagnosis I did have some depression episodes ( not very bad but I'd flagged them with my GP), so according to "diagnostic criteria", a few depression episodes plus the many hypomanic ones made me "Bipolar / non-specific affective disorder". I always thought that diagnosis was "not quite right", as I rarely get depressed, usually depression has had a definite cause (eg coping with diagnosis, my limitations due to how exhausted I get, loss of career due to Lupus), and I can "snap out of depression", plus I don't agree with one Dr who thought my fatigue, and non restoritive sleep / difficultly getting up in a morning due to feeling that I've not slept and need more sleep, was a depression symptom, and not as I believe a Lupus fatigue symptom

I was on Olanzapine for years but took that on an ad hoc basis when I knew my mental health was poor / when hypomanic symptoms showed ... Drs were never happy about the "ad hoc" /PRN nature of how I took that medication , as it did depend on having very very good insight / trusting my close friends and family if I'd lost insight. I was put under just GP care not psychiatric services as my ability to cope and manange my meds and symptoms improved and that contiued for years.

A few years ago my medication changed as there is thought to be a risk of diabetes linked to taking Olanzapine (probably true as that drug makes you eat more and crave sugar). Due to that I had another refer back to psychiatric services, and my diagnosis / medication has been "tweeked" . I'm now on a mood stabiliser all the time .. I take Quetiapine at low dose of 50mg at night. The Drs think my hypomania is most likely a psychosis symptom linked to the mental health symptoms that you can get with Lupus. They've said it's likely to be that, because I never had any mental health issues before I had Lupus, and because I get psychosis / the hypomania, plus get problems with brain fog/ lack of concentration, and all those symptoms all come under the umberalla term of "Neuropsychiatric SLE" (NPSLE)

I find the Quetiapine mood stabiliser is very good. I occassionally get very mild hypomanic symptoms if I get stress, or if my lupus in general "flares up", but in general it's under really good control. As an added "bonus" for me the Quetiapine has vastly reduced just how "groggy I feel" due to the non-restoritive sleep side of my Lupus ... I still have it but it's probably improved my ability to "get going in a morning" by around 40-50%. The Quetiapine works on serotonin so that's possibly why that effect. As it works in that way it is "addictive" in the sense that I now find it difficult to fall asleep if I've not taken it (not a problem really as I'm much better when I do take it, and it does help me a lot, so I don't miss doses)

I do hope they find things that work for you. As a final bit of advise I would say that either counselling and / or having friends you can discuss issues with can be useful. Occupational therapy can also offer good advise on all kinds of things including advise about how to pace all your activities, and finally I'd say from personal experience, as time goes on the "grief" and depression side of Lupus does shift and get better, as you "learn to accept your limitations" / the new you / accept that life with Lupus although likely to be "a different future than you ever imagined", it can still be a great future where you are "as well as you can be"

[JimCWalker]

Hey Deborah. Lupus, from what I understand can affect your mental health. For me I get bouts of low mood.

You are taking meds that will affect your mood. Have you had a blood test to check everything’s in order?

As fabwheelie said, have a good chat to your GP. What you describe certainly doesn’t shout bi-polar to me, rather someone struggling with the reality of an autoimmune disorder.

It may be worth talking to an IAPT/Well-being service, better still a referral to a health psychology dept, though this’d probably be from your Consultant.

Have an open and honest chat with either your GP or Rheumy as a starting point.

Good luck and hope you find your stability soon.

[Peppytea]

Hey DeborahMonmouth 💗

What you were writing about those high’s and low’s there, you could have been exactly describing me. I have a suspicion that I have BPD, but doctors and psychiatrists just laugh at me when I suggest this, which doesn’t help my mood.

I have fibro and am being investigated for lupus and/or rheumatoid arthritis. I felt a real change in my body about a year ago, and also a change in my mood. I’m all over the place. One moment I can be laughing and within the same breath I can hysterically cry. I agree with Shorthouse that the drugs don’t help as they usually cause low/high mood swings.

I found it helpful to start writing a diary. You can make it personal or formal, of the experiences and feelings you have on a day to day basis. That way it’s easier once you start talking to someone, to show them, as to forgetting all the times you have reacted to something in an odd way (I know my memory is appalling!).

Basically I just wanted to say, you’re not alone 💕 I know I can feel extreme bouts of loneliness and this forum has really helped that. I also find Instagram can be a great source for the chronic community. Just surround yourself with things you love to see and do, and people you love. Try your best not to throw yourself into doing things when you feel slightly better (pot kettle black here, I do the same!) because you’ll put yourself into that flare that makes you feel rubbish. I know it’s hard, I really do. But the small changes are the biggest impacts. Just please don’t ever feel you don’t have someone to talk with. If you ever need a friend, you can always private message me.

Take care dear 💖🌟

[DeborahMonmouth]

Thanks for all your words of encouragement. It helps to know that others are going through the same thing and I am not just going mad. This thing seems so isolating and somehow it ends up feeling as if the medics are the enemy.

[Dalilatm]

I'm sorry to hear this. During my first years of lupus, my parents thought I was bipolar. But no, it's just the lupus and the steroids. I think that what helped me the most was to find a psychiatrist that I could really talk to, we had a good relationship. I tried several before finding the one and his help made me finally move forward in life and accept my lupus.

I think that having someone that can listen to us and who has tools for helping us can make a difference in our lupus. Taking antidepressants without a therapist, psychiatrist etc makes the road more difficult and longer. Sort of having a driving licence but no car.

You can try a few minutes of meditation, to do something relaxing that you really like (like painting), or go for a walk. This can keep you focused and out of hopelessness.

good luck! xx