Do you suffer from anxiety and/or dep... - LUpus Patients Un...

LUpus Patients Understanding and Support

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Do you suffer from anxiety and/or depression when living with systemic lupus erythematosus? A revised poll.

lupus-support1 profile imagelupus-support1Administrator82 Voters
I suffer from anxiety AND depression
I suffer from depression
I suffer from anxiety
I do not suffer from either anxiety or depression
16 Replies
Kim24 profile image

Yes. During a flare which seems like all the time I have extreme anxiety and depression. Cymbalta and half a klonopin help me during really bad days.

lupus-support1 profile image
lupus-support1Administrator in reply to Kim24

I am glad the medication does help you. But, do you think being able to talk to someone would be helpful? Is there something you feel would be helpful?

creaky profile image

While lupus causes me a considerable amount of distress, I don't suffer from clinical depression or life limiting anxiety.

I wonder if yourself should be a little more specific?

This is not a criticism, just an observation

Boxxietrolls profile image
Boxxietrolls in reply to creaky

Having depression or anxiety does not mean the same for all. Some individuals cannot function with either and others have depression that comes and goes. I suffer from a bit a both. Sometimes the depression/anxiety does not leave for a long time and sometimes I am depressed and I can work through it and have it go away.

She is just asking if you suffer from depression and/or anxiety. No matter how badly either effects you, you still have it.

lupus-support1 profile image
lupus-support1Administrator in reply to Boxxietrolls

Exactly so. Anxiety and depression refer to clinical terminology, but they can also be used in a non-clinical way. This is why polls alone are not good-enough. My research involves interest in each and every person, rather than trying to generalise. Each person's experience may have some similarities, but every person is unique and we have unique experiences.

With good wishes,


creaky profile image
creaky in reply to lupus-support1


My my reply contains a typo which makes it sound blunter than I wanted it to.

I completely agree with what you are saying that every individual's experience is unique.

I would make a distinction between clinical depression, which sometimes has no obvious external cause and the distress that I feel at the changes that lupus has imposed on my life.

I feel grief for the quality of life that I have lost. I feel distress at the chronic pain that I suffer, but I have none of the physical or psychological symptoms of depression.

I wish you every success with your research

lupus-support1 profile image
lupus-support1Administrator in reply to creaky

Nothing wrong with being blunt, but I am grateful for your explanation.

In my experience, there is also a cause or reason for clinical depression, even if it is unconscious.However,I takeyour point about clinical depression as an understandable and "normal" human response to living with an unpredictable, painful and incurable disease.

There is a saying that even though only one person in the family may have a diagnosis of lupus, the whole family suffers from SLE.

Grief is a part of depression. It is understandable that we mourn the losses involved with lupus, but sometimes this can be very difficult. Depression can sometimes be understood as anger turned inwards. Why wouldn't we feel angry about what has been cruelly taken away from us? Expressing that anger can be difficult and sometimes this can take the form of depression. Part of the work is to help find a way of being put into words what we feel. This may not change "SLE", but it can help how we deal with it; and our relationships with family and friends.

This is not solely about "research" but a way of trying to find out how LUpus Patients Understanding & Support (LUPUS) can be helpful to YOU and everyone here.

You don't have to have depression to benefit from talking! Our other website can be used just for talking; or answering questions and finding out information. I will write a post here in case anyone is interested now, or in the future.

With good wishes,


lupus-support1 profile image
lupus-support1Administrator in reply to creaky

How would you describe your distress? Perhaps you would like to describe your experience, which is the purpose ie to find ways of alleviating distress. Anxiety and depression are terms, but they cannot describe individual experience.

With good wishes,


calvinia profile image

Thanks for having this poll as many of us suffer from both anxiety and depression it's not that easy for you to look at this and give some more research I exercise daily on the treadmill as well as doing Tai Chi so that helped me quite a lot and my diet I don't eat any more meat and I eat lots of vegetables stay away from the high sodium intake lots of water and I'll be 60 October 15th so I'm doing pretty good but yes there are days that I feel anxiety and depression

lupus-support1 profile image

Using statistics to show x or y is not really helpful if we are trying to help each person. What works for one person, may not work for another. Some are able to exercise, others cannot. Some make dietary changes; and while there is as yet no evidence to show this affects people with lupus, it this helps you feel better, that is great! It is also the case that many of us may not eat healthily, irrespective of lupus!

On those days you do feel anxious/depressed, what do you think triggers this? What do you think would be helpful to you when anxiety/depression does affect you?

Many happy returns for October 15th!

Be well!


bluebell99 profile image

I feel down when I am having a flare, they both seem to go hand in hand, but generally I am a half glass full person. I am not on any medication for anxiety and depression although I take amitriptyline for pain at night.

My longest bout of depression was the 10 years before I had a diagnosis of lupus, when I knew something was wrong but my doctor was very dismissive. My most recent was 5 years ago with a diagnosis of cancer. I was on them for 3 months before deciding to stop as I wanted to feel and enjoy the highs of life as well as coming to terms with the lows. I didn't like feeling of every day being the same. I didn't have counselling as it wasn't offered, although looking back it may have helped with the worst times.

I am fine now, both physically, (apart from the lupus and associated conditions), and emotionally.

Bellaflowe profile image
BellafloweVolunteer in reply to bluebell99

I realise this is an old post, but I just wanted to say that your response was very moving for me. I understand the feeling of everyday being the same - no happiness or sadness - whilst on antidepressants. I have always found them, much like steroids, to be a double-edged sword. On one hand I need them to control my neurological symptoms caused by neuro lupus, such as severe mood swings and crippling anxiety, but on the other hand they cause me to feel that everyday is the same. The motivation isn’t there, the drive and the willingness to do more. It’s a horrible numb feeling. Your response moved me because I think you are coping so fantastically well with everything and that’s inspiring.

I wish you all the best!

Suzy x

lupus-support1 profile image

Thank you for your contribution. Amitriptyline is an older tricyclic used for depression, but in low doses, it is used as a muscle relaxant and aids a better quality of sleep (hence taken at night).

Diagnosis can take many years and this can understandably lead to depression. I amsorry to read about your diagnosis of cancer: again depression is understandable and "normal." In fact, not having these feelings might suggest a further problem, as suggested by Professor Isenberg (University College Hospital, London).

I also agree with you that antidepressants can lead to a "flat-line" as one patient described it: feeling neither happy nor sad.

I am a strong believer in psychological support and believe that psychotherapy should be part of the overall care for each patient.

Please know you are welcome to talk to me any time now, or in the future,should you feel this would be helpful.

Be well!


lupus-support1 profile image

Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

Finally, please go to: and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!


Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

Lilrose profile image

I'm depressed I always have flares in hands and wrist nausea and dizzy and tingling how do you make it stop? I hate not being normal??!!!!

lupus-support1 profile image

I can see you don't think you are "normal" ie free from lupus. This does sound neurological and you need to speak with your doctor.

The nausea sounds as if it is from a balance problem?

What does your doctor say?

With good wishes,