Anxiety side effect of sle?: Hello all. I have sle... - LUPUS UK

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Anxiety side effect of sle?

9 Replies

Hello all. I have sle, sjogrens and raynauds which I have been treating for last 7 yrs. Good days and bad days. I also suffer from anxiety which seemed to appear around same time as first lot of symptoms of illnesses. Just curious if anyone one else has had this? If there is a link?

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9 Replies
SjogiBear profile image
SjogiBear

There does seem to be a link between SLE and anxiety which may be at a genetic level ncbi.nlm.nih.gov/pubmed/127... . I have had lupus & sjogrens syndrome since my teens and have always had problems with anxiety. I first heard about the genetic link when my consultant spoke about it at a talk about 2 years ago and I do find this knowledge somewhat comforting. Previously it was just thought that we are anxious as a result of being unwell (which may of course add an extra layer of anxiety for us anyway!). How do you deal with your anxiety issues?

in reply toSjogiBear

I take medication (zoloft) & I recently did a short course in meditation so I try to practice meditation daily, listen to relaxation music at night and exercise a little each day. Usually just walking. I find that helps most days but not all ....sometimes I just have a very crap day lol. How about you?

SjogiBear profile image
SjogiBear in reply to

I've tried medication but it made me feel near suicidal and I stopped it very quickly as I got very scared. I now just take natural remedies such as Kalms tablets when I'm going through a bad phase which do take the edge off a little bit. I've done a course on mindfulness meditation run by our local psych team and have tried their anxiety course too although it gave me a bad panic attack and I wasn't able to complete that one - typical! Apart from panic attacks, my major problem is health anxiety which is not great when you have a chronic illness really. I have tried a sound machine at night-time although that eventually irritated me and now I've got a little digital radio on my bedside table which I have on at a low volume when I wake up in the early hours - this helps to distract from the churning thoughts in my head and I can sometimes actually get back to sleep for a bit. Anxiety is absolutely horrible - when it's bad it's very hard to get someone to understand just what we are going through, having also had depression in the past, I would say that it actually feels worse :(

in reply toSjogiBear

Yeah...I had health anxiety on my notes prior to diagnosis...well,obviously when I had repeated regular health issues...bowel and stomach and throat inflammation,pneumonia,inflammatory arthritis, skin peeling off digestive tract ,abcesses everywhere,brain fog,etc YOU BET I WAS ANXIOUS.This label stopped a proper diagnosis years ago.Imagine....I'm actually pleased I collapsed and got taken to hospital. ...how pathetic that we have to get it recognised this way!

in reply toSjogiBear

I just read the link you sent me. (Thanks for that). How interesting. It has given me comfort. Im going to have a chat to my specialist about this. I dont think I have ever mentioned it to him and have seen a different doctor to have this treated.. wow!

Purpletop profile image
Purpletop

I have the same when I flare but usually it's controlled when the lupus is controlled. Actually it is one of the first signs of a pending flare, that and night sweats. Dreadful feeling, I hate it.

in reply toPurpletop

Omg! The night sweats!! Arent they just hideous. I find when a flare is starting the fatigue hits first, then night sweats and then the anxiety/panic and followed by the usual symptoms of joint pain and rash and hairloss. I didnt register that the anxiety was part of the flare but makes sense AND watch out if it all happens when Im hormonal. Flares are worse!

Stripes1967 profile image
Stripes1967

Hello spotty cheek , my daughter has SLE and terrible anxiety. I personly think that there is a link, but just my opinion. She is on clonapan and Saraquil for this, but right now serious depression probably from the phentnol pump in her back or mixture of stuff. Depression sucks and be carefull of what they might give you and hope you get the relief you need. God speed!

madgerac profile image
madgerac

Hello, I have suffered with anxiety off and on since my teenage years. It go so bad last year, I had constant anxiety for around 4-5 months, couldn't sleep, eat etc, With the agreement ofy Lupus rhemy I started taken a very low dose of Propranolol 10mg, it has helped me. The only thing I have to be careful with is it makes my hands and feet colder in the winter, so you have to take really good care. I also swim regularly, I started 2 years ago, it's the best thing to ease the painful joints, puts no pressure on the body and is also good for the mind as it's very relaxing.

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