Mental health issues from lupus?: Hi everyone... - LUPUS UK

LUPUS UK

28,761 members25,158 posts

Mental health issues from lupus?

MusicalFurbaby profile image

Hi everyone, newbie here, I’m 40 years old suffering with lupus complications, including undiagnosed heart stuff, chronic pain, fatigue and brain fog. I’ve just been diagnosed with vasculitis and osteoporosis. Does anyone else find this stuff really depressing? I’ve got the bones of an 80-year-old, and I’m gonna need joint surgery in the next couple of years. I get both depressed and anxious with my lupus symptoms, sometimes to the point where I don’t want to be here anymore—even though I have many wonderful reasons for living.

56 Replies

Of course you got depressed. It is just normal. The key is to find a good cognitive bwhavioral therapist to help you through this chronic illness. Good luck. We have all been there.

Thank you Tanitani. I probably should have mentioned this before, but I am one of those CBT therapists…many people find it helpful, and it is helpful up to a point, but for me, I’m finding it’s not enough. Your support means a lot (even more than CBT!) so thank you.

Not sure if it is legal where you live, but psilocybin helps too, microdosing not hallucinogenic.

Thanks for that, never heard of it, but can look into it.

I’m really sorry you feel this way and you are not alone. Hope you find someone to talk to and that tomorrow is a better day. We have all been there. X

Thank you ShannonB, it is good to know I’m not alone, especially given lupus is so rare and it’s hard to find people who understand. I do get a lot of empathy from others suffering from autoimmune stuff though, which is good. There’s a lot of common ground. Thanks again for replying.

I am sorry to read that you are feeling this way but first and foremost you should know that you are not alone. I recommend a combination of mindfulness and cognitive behavioural therapies as a basis for you feeling better.

Thank you Lily77, I am so blessed to have already received these replies today! I use both CBT and mindfulness in my work (I’m one of those therapists), so I know it can be helpful to many people. I am finding, with chronic illness, that those therapies are no longer enough for me. But support definitely helps, especially when it comes from people who know. I am glad I am not the only one walking this path.

Well you can check out my profile and just message me if you decide on help just for you.

As a therapist you know that depression is as deadly as lupus and warrants immediate treatment if thoughts of death and suicide are present . Please discuss your worsening depressive thoughts with your gp and maybe consider medication in addition to your therapy. Please reach out today to your medical team. Xo

Roarah, first of all thanks for taking my suicidal thoughts seriously. I find a lot of people minimise it. Second, I’ve had my anti-depressants increased, so this is actually me on a good day! I am better than I was, but I’ve had a pain flare these past couple of days, and that’s when I really get overwhelmed. I have been struggling to shower and dress myself, and that is often when my mood drops through the floor. Thankfully, the pain is better this morning. Thanks for your support.

Hi MF and a warm welcome to the group. I am really sorry to hear what you are going through and you are very young to have all this stuff going on. BUT never forget you are not alone. We are all here to support you and each other so never feel alone with these problems. Many here will have the same and worse but with each other’s help we try to keep upbeat and share our worries, upsets and pains with each other which truly helps. You’ve come to the right place MF for friendship and support. We’ll be with you every step of your health journey if you’ll let us. Hugs. 🤗😘xx

*Weepy* thanks Spotty-Ewe for your support. This is what I’ve been looking for these past 8 years: support from those with Lupus. You guys get it. Would love to keep you all in the loop with both good and bad days. The pain is better this morning, so my mood is better too!

Glad to hear the pain was better this morning. 👍🏻 I hope that continues. 🙏🏻 I’m pleased you have found us MF. I was diagnosed with SLE for 7 years before I found this forum and it has made such a huge difference to my life. I’m sure it will to yours too. Please do keep us all in the loop with all your good and bad days. Take care. 🤗😘xx

Thanks, I’ve been 8 years without peer support—there’s not much in Australia! Glad I’ve found this place. Overwhelmed by the support I’ve received in just 24 hours.

I’ve heard that before about Australia. I grew up just south of Brisbane but my family came back to UK when I was 15. It seems I’ve had Lupus from childhood but it was never diagnosed until I was 57 following a horrendous head to toe rash. Many of us are not diagnosed for many many years when at last our mystery illnesses and head-scratching symptoms begin to make sense and fall into place under the banner of SLE. In many ways I was relieved to be diagnosed and receive consultations and treatment which really helped and to know my symptoms weren’t all in my head or the result of ‘nerves’ as I’d been led to believe by some GPs over the years. Glad you’ve found us and that the support is helping you already. 🤗😘xx

It’s frustrating, isn’t it? I know lupus is a diagnosis of exclusion, but it takes such a ruddy long time to exclude everything else! Being misdiagnosed, trying the wrong treatments, the agony of finding nothing is working, self-advocacy for further investigation…I am so very glad you eventually got the right label for your mad jumble of symptoms. Mine started with an extremely rare symptom of vocal problems (plus all the usual fatigue, brain fog etc.) and it wasn’t until 6 years later they worked out what it was. But I still wasn’t diagnosed with lupus for another 2 years. Here’s to those magical specialists who nail down the diagnosis, the right doctors in the right place at the right time!

They have to first of all have Lupus in mind to start the exclusion process. I had so many years where they investigated and tested for gall stones, for a misshaped womb, for a cervix that opened during pregnancy, for stomach ulcers and so much more none of which I had so when each test came back negative they looked no further. I was very lucky to have a wonderful surgeon on the Isle of Skye who was determined to get to the bottom of my gall bladder problem and sure enough he discovered although I didn’t have stones the gall bladder was mal-functioning. When he removed it he found it was badly ulcerated and assumed it had been like that since infancy if not birth. I almost died aged 3 when I had double pneumonia and measles all together. I’m sure although I survived these illnesses they had triggered the auto-immune response which was more prevalent in my teen years onwards. So I was massively relieved to find I had something with a label and that was recognised by the medical profession at long last. I’m so sorry to hear you had the rare vocal problems and hope that is under control now. 🙏🏻 We follow a long rough road to diagnosis we Lupies, but I think we are all the stronger for it. Take care MF. 🤗xx

Thanks Spotty-ewe. So sorry to hear about your childhood problems, and it kinda makes sense that an autoimmune response might have been triggered by all of that. I agree that it’s great to have a label recognised by the medical field! Getting a lupus diagnosis was, for me, a way to say, ‘Oh, that’s why all the random stuff has been happening: the heart, joints and vocal chords are actually connected!’ It provided clarity. And now, it gives me a legit way of saying to doctors, ‘I’m not making this up. I have an actual medical thing.’ It gives us credibility—something sorely missing in in many of our experiences.

Very well said MF. You have put in words what most of us have felt in the years leading to diagnosis when random ailments and symptoms are suddenly linked under the same umbrella. Take care MF and looking forward to more chats with you on here. 🤗x

Welcome MFB! Gosh you sound a lot like where I have been, with my journey of lupus and Sjorgen’s.I first became sick and constantly infected in 2011.

In fact, despite mentioning my Mum had SLE and struggled, no GP suggested Lupus testing until a canny one did in 2017.

Over the period of 2011-2017 my Psychiatrist was the the one who kept me alive, and who linked my major depression to inflammatory illness in my body. Chronic pain is a very common thing psychiatrists deal with as well as mood disorders.

We have diseases that are severely painful, unpredictable and incurable. That’s an incredible amount to deal with on a daily basis.

I hope you have some good mental health support through what can be an agonizing and confusing time. If not, I hope you can find someone who is helpful for you. Sending best wishes, let us know how things go, hey?

Thanks Colonial-Girl, yes the journey to diagnosis is often long, it took me 8 years to get mine diagnosed. That was because my first symptom was very rare (bamboo nodules on vocal chords) and I was misdiagnosed for a long time. You are totally right about this being painful and unpredictable; I liken it to living with a volatile roommate who I can’t kick out! My GP and specialists are all excellent, and I have a few close friends living with autoimmune stuff, so they get it too.

Hi Musical 🤗 welcome to the group!! 💐You've certainly come to the right place to get yourself savvy about all things autoimmune. This is a very informative, supportive site n it really is a lifeline for us!! I personally have learnt more about my condition from the lovely people here than I have from any doctor so far!! After all it's us who live with these conditions day in day out..with no days off.

Mind, body and spirit are all intrinsically linked n therefore it's inevitable that our mental health is affected..were only human after all!!

I see that u already have training in psychological therapies..I trained as a mental health nurse (many years ago now). Do u have any experience of metaphysics? You mentioned mindfulness..do u use affirmations at all? I have found repeating positive affirmations help me during even the trickiest, most painful of times. Believe me when I say I have literally cried myself through my mantras but they do help to calm my mind even if I have to just keep repeating them over n over.

All is well in my world..is one of them that's easy to remember. Another one I use regularly is Every Day in Every Way, I AM Getting Better And Better. I've even made little mantras to put on my walls at home!! 😹

My go to handbook about lupus is called How To stay Sane in Pain by Karen Drennan-Mackewan..not sure I've spelt her last surname correctly..but the book does give loads of helpful tips in how to cope with lupus from a lady who has lupus herself and she's a psychotherapist. 👍

I hope some of this helps..main thing is though that you're here in this safe place full to the rafters of lupies who all understand..were all in the same boat with different paddles..you are not alone 🤗🌈😽😽xx

🌈😽😽xx

One of my wall mantra's
Roarah profile image
Roarah in reply to Krazykat26

KK, Your post so resonates with me. My mantra when my antibodies where extremely elevated and I was constantly worried about having another stroke was, “when my mind is calm my body is listening.”. Almost three years later my mind stays calm in default mode and every antibody I once had is non detectable. And even more importantly I finally have a life that is not riddle by my constant anxiety.

Krazykat26 profile image
Krazykat26 in reply to Roarah

I.like that Roarah 🤗 would u mind if I noted it down? As I read it I felt the calming feeling and it's obviously worked for you! Anxiety can be so crippling in itself and although we always stay try not to stress coz stress drives Lupus..it's practically impossible to lead a stress free life!

This is why I retreat n use the affirmations to calm myself therefore dodging flare ups as much as possible. I've been doing them for years so they've become second nature to me now and my daughter's use them too!! 🌈😽😽Xx

Roarah, I like that one. I’ll try it.

Hi KrazyKat26, thank you so much. I am not totally sure what you mean by metaphysics in psychological therapies, but I’m very familiar with mindfulness and mantras. Most mantras are unhelpful to me as I don’t believe them (hard to believe all is well when one is hospitalised for the 8th time, etc. etc.) but one that has helped is, ‘I’ll be OK’. My husband says that one to me when I’m spiralling, and surprisingly, it helps. Thanks for the book tip as well.

It's hard to explain metaphysics tbh!! I shouldn't of mentioned it 😹I'll try to give you an idea using the affirmations as an example.

When we repeat positive affirmations we send a direct message to the subconscious part of ourselves. The subconscious has no reasoning and so believes the affirmation.

Repeating affirmations in the present tense even if u don't believe them in the concious mind filter through to the subconscious which acts accordingly because it doesn't think..it just acts!!

For example you have the mantra "I'll be ok" that gives you hope for the future n helps you..if u were to say "I AM ok" your concious mind will say something along the lines of "No I'm not ok" but if u keep repeating "I AM ok" eventually you will start to feel a bit better!! It's like arguing with yourself!!

It's more of spiritual therapy and includes certain practices such as spiritual journeying, shamanism etc when u dip a toe in which is why it's hard to explain. Can be seen as a bit crazy but it really but it opens us up to the spiritual side of ourselves.

My motto is Believe Nothing..Entertain Possibilities coz when I first started learning about this stuff much of it was pretty way out there!!

🌈😽😽Xx

Hi Krazykat, thanks for enlarging on the idea of metaphysics. I’m all for ‘out there’ stuff, coz mainstream stuff doesn’t help much with the crazy world of autoimmune disease! I think the spiritual domain of our wellbeing is a crucial yet oft-neglected aspect of recovery. I certainly lean on my faith during difficult times, and I think it’s helpful to lean on something that is bigger than us. Thanks for sharing ☺️

I have been living with confirmed lupus and other autoimmune conditions for about twenty years, excluding the 10 years of missed diagnosis of "it's all in your head" and countless variations of anti depressants. It was a relief in a way that I had something real and tangible and I was not a hypochondriac, had medical anxiety or seeking attention. Even the counsellor I was sent to see kindly told me that she thought I had something physically wrong and further sessions would not help!!

It does take some time to get used to the diagnosis, but be very wary of reading up on information that may be years old. I was initially frightened until my rheumy said that nowadays you are more likely to die WITH the disease, not FROM it. In other words, expect a normal lifespan.

This forum is excellent for advice and understanding. Joining us is the best thing you could have done!!

There is also an osteoporosis forum here called "Bone Health" which is very good too. Years of taking daily steroids have been blamed for my thinning bones so it will be useful to discuss your medication and possible side effects with your rheumy.

X

Thanks Bluebell99 for sharing your story. Yes, mine took 8 years to diagnose, because I initially presented with very rare symptoms. I knew I wasn’t imagining it; in the end, we know when we don’t feel right or when something is amiss! I have no fear of death, but I fear losing myself in the process eg. through complications. Thinking about surgeries and feeling like I’m 80 can be very overwhelming. Thanks for the tip about the Bone Health forum, will check it out.

Hi Bluebell, I really relate to what you said about being misdiagnosed with your symptoms being ‘all in your head’ as I had that said to me for around 40 years. My inexplicable miscarriages at 20 weeks and 22 weeks, ulcerated gall bladder which was removed when I was 25, half my thyroid removed when I was 42 due to a haemorrhagic cyst, etc etc were treated as mysterious unrelated problems along the way. Being treated in such a way is worse than the condition itself. As I said to MF I felt relieved when at last I was diagnosed with SLE at 57 so at last I knew, and everybody else knew, there was a valid reason for all my symptoms. Luckily my medications have helped those symptoms now so I feel better than I did for many years. Take care. 🤗😘x

Yes, diagnosis is such a relief. We know we’re not crazy, but it’s such a relief when everyone else knows it too, and when we know what to call our particular brand of ‘crazy’! Sorry to hear about your miscarriages and surgeries, you’ve had a lot going on and from such a young age too! ❤️

Thanks for your understanding MF. It means a lot. 💕😘x

Best wishes 🤗

Thanks Stiff19!

Hello, my mental health issues - depression, anxiety, OCD - preceded my diagnosis with Lupus by around twenty years, so I'm uncertain of how they all interrelate (although the notion - also the title of a book - that 'the body keeps the score' makes a lot of sense to me).

My lupus symptoms are currently at the mild end of the spectrum so I'm not dealing with the enormous physical daily challenges of living that many on here are. In terms of pre-lupus-diagnosis therapies, however, I found that CBT did not suit my particular mix of issues. A number of 'exploratory' sessions with an intelligent and skilled psychologist a couple of years was the most insightful and instructive talking therapy I have experienced, but sadly the Covid lockdown brought this to an end and I'm unable to afford private therapy.

Last year I began reading a book on self-compassion by Kristin Neff which resonated with me and I think has the potential to be really helpful in regards to dealing with my health challenges as a whole. I haven't continued with it for some months due to the distractions of marital separation & moving in with relatives, but as soon as I feel self-compassionate enough to allow myself time to read about self-compassion I'll be returning to it ;)

Very best wishes.

Roarah profile image
Roarah in reply to SleepyWolf

I love “The Body Keeps Score”!

I’m familiar with ‘The Body Keeps the Score’ (great book) and with CBT (not so helpful for me) as well, I’m so glad you found a therapist who was a good fit for you, and I hope one day you can return! I am interested to hear about the book about self-compassion, that sounds really nice. And we certainly need a lot of it, when our bodies are being uncooperative and mysterious and a general all-round nuisance!

I went swimming last week for first time in 2 years. It raised my confidence and morale beyond measure. Cost me £15 for a week's trial membership, sessions booked online and can see how many people attending, and can cancel if not lots of space.

...The water seems to more heavily chlorinated so no doubt will wreak the new swimsuit quickly. ..

Also, is there such a thing as water therapy? Seen animals get this in vet programmes..

Hydrotherapy is wonderful! It’s great for some of my chronic pain. Haven’t been able to swim for some time now, due to the you-know-what, and have no idea when any pools will re-open. But yes, it is a wonderful thing.

“Trust is a Rumor until the Body experiences it. “

Go to a pool. Put on a life vest. Lay back

In the water. Close your eyes. Float. Trust

The Sensation. Not thinking. Weightless.

This is what every moment of your life will feel like when you Trust Life.

Beautiful analogy of trust. When our pools re-open, I would love to get back in the water!

Spotty-ewe profile image
Spotty-ewe in reply to Titters

Sadly not for all of us Titters. I miss swimming but every time I enter a swimming pool I end up with a UTI. It is SO frustrating and annoying. I’ve tried incontinence swimwear which was very expensive in the hope it would stop the water reaching parts it shouldn’t. It didn’t, which makes you wonder how hygienic swimwear for incontinence really is. I’m still searching for a fully waterproof swimsuit/swim shorts but so far haven’t found any. ☹️😭 If I do I’ll be joining you in the pool to float, swim, totally relax. 🙏🏻 Xx

Titters profile image
Titters in reply to Spotty-ewe

I’m so sorry you can not get in a pool:(But basically the floating and pool is more analogous to relaxing. Which you can do

On the floor or bed etc…. It’s about letting go of each part of your body and

Experiencing total relaxation which in

The analogy above = complete trust. That beautiful quote is not mine. It’s anonymous. Best, Titters

Spotty-ewe profile image
Spotty-ewe in reply to Titters

That’s a very good point Titters and I’m guilty of not making time to totally relax. I used to do Mindfulness meditations which did exactly that so should get back to it. BUT I still miss the pool. Take care. Xx

You answered my post and now I’m reading this . So sorry you feel this way yet you had the heart to share with me 🙏I see you’ve had some great replies and can only reiterate on those . You will find support here and we do understand. You are not alone 🤝

Bless you ❤️

❤️🤗

Hello & welcome MusicalFurbaby so very pleased to meet you👋

I am so very sorry you are suffering so badly.. both physically & mentally & being a CBT therapist yourself you will know it doesn't work for everyone, myself included.

I have the same deep, dark, despairing thoughts as you & have tried therapy & medication but nothing seems to help me.

I have come to the conclusion it is part & parcel of this thing? whatever that is?

I have no diagnosis at present & find myself spinning around & around in a void of uncertainty & despair while symptoms are on the increase. I know this adds to my anguish & anxiety. I know I am not alone... & you are not alone now.. you have us.❤

Keep thinking of all those wonderful reasons you have to live & take comfort from the fact you are fighting this! it will not beat you! you are better than it! stay strong!

A visit to your GP may help as medication may well work for you.

I really hope you find your happy place once again & your pain eases both physically & mentally

Take care Xx

🤗🤗

Thank you so much daisydayz. I find CBT helpful for many things, but it’s helpfulness seems limited when it comes to issues of chronicity, including chronic illness, chronic pain and chronic fatigue. In my darkest moments, I just hold on to the few certainties in my life, including faith...I just need to survive until the darkness eases. And I suspect this forum will help me hold on too. ❤️I am so sorry to hear about your diagnostic discombobulation. It’s a sucky place to be. I struggled for 8 years without a diagnosis. Do you have a decent specialist? One thing that helped me was getting a second opinion. Only then did the lupus diagnosis surface above the flotsam and jetsam. I learned, from that experience, not to persist with doctors who are unhelpful in any way. I have fired several GPs and quite a few specialists. My tolerance for bad healthcare is at an all-time low! 😁

Thank you for your advice furbaby, I think you may be right.I was originally diagnosed with UCTD & started on hydroxy 2 years ago, I met the criteria needed but only had a weak positive ANA of 1.80 My bloods turned negative & I was informed I no longer had a connective tissue disease & was discharged from Rheumatology.

This time last year I lost a lot of weight in a very short space of time despite eating well. I was admitted to hospital to be tube fed & for gastro investigations, nothing could be found, but at least Rheumatology were on board again. This was short lived & 6 months ago I was discharged from Rheumatology again & told 'you have symptoms suggestive of a connective tissue disease, but inconclusive without the blood work'.

I am still under dermatology & still on hydroxy but thats about it.

I'm not sure without the blood work that I could get a referral to Rheumatology again at the moment, but a second opinion is definitely on the cards as unhelpful, dismissive & condescending Drs are actually very bad for our health so I admire your style.

I'm sorry for the long reply & what started out as me giving you support has turned around with you giving me advice.. just love this group❤

I really hope your darkness eases soon

Take care Xx

🤗🤗

I know, this forum is awesome! It’s great that we can just take turns at supporting one another, without being restricted to ‘It’s my thread’ or anything. The search for good specialists and informative bloodwork can be maddening. I’ve been in and out of hospitals, both public and private, in search of a diagnosis. It was actually my nutritionist (I had terrible gut symptoms for years) who recommended getting a second opinion from a different rheumy, and he ended up being the right guy at the right time. So you never know when the journey is going to turn a corner. I hope your turn comes soon.My darkness is easing today, the pain is manageable and I am experiencing some emotional and mental relief. I think this has been helped in no small way by the support here. Also, the promise of light at the end of our lockdown tunnel is probably helping too!

Good morning furbaby, I am so pleased your pain is more manageable now & your darkness is easing.. its a bad place to be.& thank you for the insight into your diagnosis, it has helped me some.

Take care furbaby, it has been lovely chatting to you Xx

🤗🤗

Thank you daisydayz, it’s nice not to be eating painkillers anymore!

You may also like...