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

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Do you suffer from anxiety and/or depression with living with lupus?

lupus-support1 profile imagelupus-support1Administrator49 Voters
16
I suffer from Anxiety
15
I suffer from Depression
30 Replies
flo_IarFachYrHaf profile image
flo_IarFachYrHaf

I would like to add that although I have both anxiety and depression it has improved a lot over the last 3 years. Extreme anxiety was one of the symptoms that took me to see my gp - depression is something I have dealt with since I was a child.

lupus-support1 profile image
lupus-support1Administrator in reply toflo_IarFachYrHaf

Can you remember whether anxiety started before any physical symptoms?

flo_IarFachYrHaf profile image
flo_IarFachYrHaf in reply tolupus-support1

it is slightly hard to say when the physical symptoms started, but in the, maybe 6/10 months before I got really ill and ended up in hospital [December 2013] there was an increasing amount of anxiety, I could distinguish between that and depression - I had a very depressive time in 2012. In the weeks preceding hospitalisation I was having difficulty with language & comprehension, so some extra anxiety might have been "normal". It was during the period between the hospitalisation and diagnosis [some months] that I went to my GP with the symptoms of extreme anxiety, for apparently no particular reason - when I realised the light made me ill [in January] there was obviously some sort of fear/anxiety in addition. I definitely felt that there was anxiety that was somehow a symptom of, rather than a reaction to, health problems.. My life had already changed a lot in 2003 with what was diagnosed as Psoriatic arthritis [which had caused a deep period of depression], so I wasn't going from very healthy to very unwell, which might have caused anxiety/stress.

lupus-support1 profile image
lupus-support1Administrator in reply toflo_IarFachYrHaf

Your understanding and assessment is clear. Neuro-psychiatric symptoms involve lupus. Cognitive difficulties, therefore, can include an understandable anxiety as a response; but also includes anxiety as a symptom of SLE. Aggressive treatment of lupus will also alleviate symptoms of anxiety that are part of lupus itself.

I am sorry you have had this experience but your description is very important. Thank you.

With good wishes,

Ros

flo_IarFachYrHaf profile image
flo_IarFachYrHaf in reply tolupus-support1

after having taken hydroxychloraquine for some time and having appointments every 3 then 4 weeks for a year with a physiotherapist helped enourmously. I came to the physiotherapist [part of hospital pain team] via an astute woman in podiatry who said she'd try and find as much help as possible as the wait for rheumatology might be several months. He gave me tiny tiny exercises to move large areas at the same time to join up parts of my body but he also helped me list my acheivements [and difficulties] and some small coping mechanisms, which meant slowly but surely I paniced less. He supported me on bad weeks - when I was unwell or got ridiculed for my appearance - very photosensitive - and helped me feel contained. So both types of anxiety [symptom and reactive] retreated slowly mainly I believe to the medication and physiotherapist.

I have been so lucky with health care especially when I read of the experience of others. It shouldn't be down to luck.

lupus-support1 profile image
lupus-support1Administrator in reply toflo_IarFachYrHaf

No, it should not be a matter of luck. It sounds as if your podiatrist and physiotherapist have helped you a great deal.

With good wishes,

Ros

Shadows-walker profile image
Shadows-walker

I think the Anexety is a result of the dificulty getting a diagnosis! The depression is a result of the changes in our lives and the changes we have to make , and the lack of understanding of others !

lupus-support1 profile image
lupus-support1Administrator in reply toShadows-walker

Do you remember whether anxiety preceded any physical symptoms?

Shadows-walker profile image
Shadows-walker in reply tolupus-support1

I did not suffer with anxiety until after my physical symptoms and drs that only saw me for a 5/15 min appointment and didn't know the whirlwind I had been , and met the unfit person with invisible symptoms so it was my word and it's been an impossible situation, my GP new the real me , as had known me 20 years , the consultant didn't know me so it's like going for pip and all the stress that involved, I always end up in tears , I am seeing a new consultant next Tuesday who specialises in lupus,SS and mctd. I have a full medical history all printed out with dates from 3 years old . My old consultant specialises in lime diseases !

lupus-support1 profile image
lupus-support1Administrator in reply toShadows-walker

I wish your experience was unusual, but it is not. It is unacceptable for a doctor to mistreat a patient and show such callousness. It could be that this was a defence against his impoverished understanding of lupus.

I wish you well for your next appointment. Perhaps you would like to comment about what happened.I would be interested.

With good wishes,

Ros

Shadows-walker profile image
Shadows-walker in reply tolupus-support1

I wil let you now next Tuesday 😊

lillibetfairies profile image
lillibetfairies

I have had depression in the past and am free of it at the moment thank goodness but anxiety is a real issue for me now. I do my best to manage it.

lupus-support1 profile image
lupus-support1Administrator in reply tolillibetfairies

What do you do to help you contain your anxiety? Do you think you would like some help? If so, what kind of help?

lillibetfairies profile image
lillibetfairies in reply tolupus-support1

Well to help manage it I use mindfulness and breathing techniques as well as sorting out negative thought patterns. I do not think i need any other support at present. Thanks for asking.

Cas70 profile image
Cas70

I suffered with both of these until I started Sertraline - it is as someone else replied, due a lot, to the lack of knowledge about Lupus. We need a higher profile.

lupus-support1 profile image
lupus-support1Administrator in reply toCas70

Can you say a bit more about this? What do you think is necessary for lupus to get a higher profile?

Cas70 profile image
Cas70 in reply tolupus-support1

I actually emailed Woman's Hour on Radio 4 and sent an email to This Morning - no response. I stressed that 90% of sufferers are women - no response. We need high profile people who know someone with it or have it, who might agree to speak up. It is very much below the radar - majority of people don't know how serious it is. I only got positive reaction when my hair fell out!

lupus-support1 profile image
lupus-support1Administrator in reply toCas70

Any ideas on what we can do here-and-now? Would you be interested in organising a campaign?

With good wishes,

Ros

lupus-support1 profile image
lupus-support1Administrator

I am very interested in hearing from you, especially your understanding of your feelings. I am also interested in hearing how we can help you, including what kind of help you think would be helpful.

Boxxietrolls profile image
Boxxietrolls

I suffer from both anxiety and depression from having Lupus.

I mainly think it is because I was diagnosed at 18 years old and it destroyed my life. I was discharged from the military, had to move back in with my parents, could work, and I just hated life.

Life is better now but I still kind of feel the same. It's hard to deal with something that hasn't been the norm for me all of my life or that would have been better if it hit later on in my life. I am going to be 21 soon and I don't feel like a normal young adult at all. I have to continuously explain to my friends or new acquaintances that I can't do all these things because it will cause me to be in pain. I feel like I have to continuously give up pieces of me and my life for this disease.

I will say that I have learned to deal with it better and to do some things even though I risk myself a couple of days of mandatory bed rest.

lupus-support1 profile image
lupus-support1Administrator

I can understand how distressing and difficult lupus has been for you, especially as such a young age, with your whole life ahead of you.

You mention having to return to live with your parents and wonder whether they are supportive of you.

Were you offered any counselling/therapy because no one can be expected to deal with what you have had to deal with alone and unsupported?

Please use LUpus Patients Understanding & Support (LUPUS) because psychological support is our specialisation.

With good wishes,

Ros

Paheli profile image
Paheli

I was not sure for a long while that i was suffering from depression until I saw my GP as I was feeling low and he prescribed antidepressants which I took for nearly 2-3 years and only recently stop taking them.

Yes the mild depression has returned!!!

lupus-support1 profile image
lupus-support1Administrator in reply toPaheli

What do you think this depression is about? Would it help you to talk more about your depression? What do you think would be helpful to you?

With good wishes,

Ros

Paheli profile image
Paheli

I was diagnosed having Lupus in 2002. I think inability to do the tasks around the house which i did before this condition is the main reason why I feel so low.

When I see people on TV or on the street jogging or going to gym it does make me feel low and wish I could do the same but alas I am not able to as my condition has affected my lungs which are progressively scarring!!

so my depression is about not able to function as actively as I would like is the main reason.

lupus-support1 profile image
lupus-support1Administrator in reply toPaheli

Lupus has taken away a great deal from you and I expect you have many different kinds of feelings. Sometimes depression can be described as "anger turned inwards towards the self."

For example, although you say you feel low when you look at other people doing ordinary things you once were able to do, it would be reasonable for you to feel angry or even jealous or envious that this has been taken from you and not other people. Why me?

I am not saying this is what you are feeling as only you know. Neither am I making any judgement. Feelings are just that, feelings. Feelings are not moral judgements.

With good wishes,

Ros

NanaFifi profile image
NanaFifi

I suffer from both but your poll does not allow you to select both.

lupus-support1 profile image
lupus-support1Administrator

Thank you for pointing out the problem. I have now a new, revised poll.

With good wishes,

Ros

lupus-support1 profile image
lupus-support1Administrator

I seemed to have made a design error and I apologise to you all. The Poll was to ask whether you suffer from anxiety AND/OR depression, or neither anxiety nor

depression, but the Poll does not reflect these choicesI

I have made a revised Poll and ask you to please complete this new Poll.

Thank you again.

With good wishes,

Ros

McLaughlin profile image
McLaughlin

I also suffer from depression. I've been told the anxiety can cause depression. When my anxiety is controlled the depression goes away.

lupus-support1 profile image
lupus-support1Administrator in reply toMcLaughlin

Both anxiety and depression can occur at the same time or, at different times.They are both symptoms. They can occur as part of the inflammatory process of SLE and/or they can be a "normal" response to having a painful, unpredictable and chronic medical condition.

What action do you take to control your anxiety?

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