Anxious all the time

Even though the last few months my lupus is asleep I feel nervous and scared.

My last appointment with my doctor was great, all my blood tests were great, the ultrasounds good and my health in general very good. I am reducing prednisolone as well and I am feeling happy because I will finally see results on my weight loss.

Since I was diagnosed 16 years ago I never felt bad about what is happening to me, or disappointed, or bad in general. I was always positive and patient and not afraid of anything.

But the last few weeks I have this constant feeling that something bad will happen to me. Every time I feel the slightest pain my brain starts the scenarios of having a very bad flare or even worse dying unexpectedly in my sleep. I am trying to stop it but I don't seem to do much... I am struggling... What's wrong with me!!?

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  • Nothing wrong with u my lovely, after being diagnosed over 18 years ago u would've thought I'd have this licked by now, but hey, my head's been all over the place the last 2 years & I know of a couple of other's on here who have the same problem. I think it's one of those things :0/ The more we learn about lupus, the more aware we become of the potential problems & scenarios which I guess is not necessarily always a good thing. Maybe a good idea 2 talk 2 u're GP & ask about Counselling or something. Sometimes just talking about u're fears etc helps 2 get rid of them :0)

  • :)) It's crazy... I am feeling because I have 1000% support from my partner. He actually said to me to say everything I think and he will try to calm me down. I do think that I am exaggerating with these thoughts... but you are so right, the more aware we become the ideas are increasing. I will try to present it as an issue at my psychotherapy group and maybe get some good answers :)))

    Thank you, take care xx

  • sweetheart, read my blog from the other day, it will open u're eyes. Every now & then we NEED 2 let off steam & just get everything 'out there'. It doesn't make u neurotic, psychotic or even idiotic & it doesn't mean u're over-reacting or being a drama queen. Lupus does funny things 2 us & can really mess with u in more ways than u could possibly imagine. If some1 had told me I'd b coming out with the type of sh*te that I put in my blog the other day I would've thought they had a screw loose or something. My other half is like u're's; he knows all about it & has read every bit of literature on it I've flung at him but as u so rightly say, no matter how genned up some1 is, unless they actually HAVE lupus, even the best Rheumy's in the world, they will never truly understand what it does 2 us & how it can affect us. I keep a little diary, where I write down all my thoughts & feeling no matter how morbid or stupid they sound & it does seem 2 help. It's up 2 u whether u let any1 else actually SEE what u've written (or typed) but sometimes just having it outside of u're head helps. Take care my lovely x

  • Hi Ribitribi. My love there is absoulutely nothing wrong with you. It is the nature of this awful bloody illness to get inside our heads. I have had SLE for 31 years and have had horrible thoughts that have really frightened me at times. I recently went through one of those times where i thought of nothing but planning my funeral. My family were so upset it prompted me to do something about it. My GP surgery run a clinic called Well Being. The people who run it are proffesional mental health trained people. They deal with anxiety, loss of self confidence and low esteem. They teach you to look at things differently which hopefully will lessen the anxiety. They also try to get you out and about. I dont know about you but, i dont want to go out as feeling like shit most of the time but, the clinic slowly tries to get you out a little bit at a time. The first time i just walked to the top of my street and back then, i had to write down how i felt about it, a bit like a diary. I also was put on a anti depressent to work alongside the well being clinic. Although i am feeling better i still have a certain amouunt of anxiety and low sellf esteem but, little steps at a time. Would it be helpful for you? Might be worth enquiring about. Hope this has helped you a little bit and to know there is help out there. BIG HUGS x

  • Thank you! Thank you both so much! Your advises are precious to me because I know that you know exactly how I feel.

    Thank you! :))

  • any time my sweet, I know how hard it can b, as we all do, honestly, never think u're alone in how u feel x

  • I get that too. When there is something wrong, we focus on getting better but when things improve, that energy is not spent towards holding yourself in the face of illness so your mind is starting to apply it elsewhere, e.g. Why am I feeling well, there is bound to have something bad happening to me shortly, this is not going to last, etc, etc. I agree with the girls above that you need to take that focus away from yourself and project it on something else, distract it somehow. Each of us has his/her way to do that, I do it by going to the gym and do some mobility exercises, or see some of my friends for lunch and make it a rule that I am not going to speak about my illness during it but immerse myself in other people's lives to take my mind off mine. I'm also thinking a of starting to write, though I don't know what but I'm researching courses. It is a bit like we feel guilty that we are feeling well, so try not to let it get to you. Good luck.

  • You are so right! I am feeling very nice when I am going to the gym! But considering that I am unemployed and I live in Athens I have nothing else to do. During my day I am finding things to get disturbed with and spend my time. But usually when meeting friends (who are also unemployed!) the conversation is that there is no potential future here...is depressing. Anyway I have one more thing to fight apart from lupus!

    I am focusing on my personal happiness, particularly I am focusing on the things that make me happy :))

    Maybe I should start a blog or a personal diary.. lets see!

    A huge hug to all of you! Thank you! xx

  • just a thought you say your reducing steriod? this can cause these feelings too xxxx

  • Hi there I'm new to this but have had lupus for many years too, I was on lots of different tablets too thought I was going crazy then when I stopped taking the steroids it took about six months for the horrible thoughts to go away, changed my diet, force myself to get out of the house, think positive but your like a yoyo, I think you know what I mean cause it happens with the lupus, the weather has a bad affect on you too and I get stress and anxiety very quickly I'm so glad for this site it's very helpful cause nobody understands how you feel, and you know your not the only one with these symptoms, hope it helps.

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