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Discussion Starter · #1 ·
This is listed as an alternative criteria with Dr. Graham Hughes/St. Thomas Lupus Clinic over in England and I was wondering if anyone has experienced this.

I wonder because it is not unusal for me at all to avoid going outside if several of my neighbors are out, I am OK if it is just 1 or 2.

I don't like crowds or crowded places, even in my own home, it is pretty uncomfortable for me.

I avoid simple things like getting my oil changed, putting my dog through obedience training, going to church, taking walks or classes truly because I get anxious thinking about interacting with the people.

I get really uneasy and so end up not doing things that I really need or want to do. Does that make sense????

The funny thing is I do fine at work, when I am the "expert or person in charge", this happens more socially and in my personal life rather than my professional life.

Is this agoraphobia or just weirdness in me????

Nancy
 

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I have the same problem since dx with lupus, is it lupus related ? I don't know. but i avoid crowds whenever possible. which is the opposite of the person I used to be,

if I started thinking about it I could say perhaps it gives a feeling of not be able to control the situation. we can't control lupus so perhaps we need to feel contol of other things . I have the same problem with elevators and driving now. I dont like to be crowded, also I have problems with brain fog,I don't want to appear dopey, as I can rarely finish a normal conversation or find the right words to continue

I also have a fear of heights now.that I never had before.
my entire world has changed, I perfer to be alone then with other people. noise and lights bother me. it is like a circuit overload and I can don't have room in my head for anything else

I can't have a radio or tv on while typing here. I can only listen to one thing at a time. so conversation with more then one person in the room is very difficult and gives me a headache. this is very hard with four young grandchildren within the same family, how do you say you only want to talk to one child at a time ?

oh I could go on. sorry, I hope you find an answer to help you out
 

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Oh my gosh...I was never afraid of people and places before getting sick, I went to concerts, bars, seminars etc and never had a problem then before diagnosed I started to have symptoms to that which has now been diagnosed as SLE lupus...I was having anxiety and panic attacks, I couldn't even get to my husbands annual Christmas party which we always enjoyed. I do think its related, in fact I thought I saw it in one of the threads posted on this site, that anxiety could be a precurser for lupus diagnosis and symptoms, in fact after I read that I talked to my husband about it and he said that makes sense since you never had it before. I mean I was a divorced mother with a 2 yr old living alone in Houston and my family lived in Ny and I never felt afraid or paniced ever... now almost 40, remarried and 2 children later I have anxiety go figure...:( I really think its related because when I think about how I have changed since getting sick (before diagnosed and treated I was really sick)I never had any issues with anxiety or fear, I hate it... :mad: I do take amitrytaline for the anxiety slash depression which I think is associated to having to deal with the unknown disease progression. It has helped but I like to drive wherever we go and I want to take seperate cars from my husband so I can leave and he can stay if he wants, he doesn't like that but its better than me not going at all, I think if I think I am in control of the situation I am ok, ie;driving and leaving when I want.:hehe:
Anyway your not going nuts your normal like me!!!:rotfl: I don't know if that is saying much but at least you know that you are not alone!!
:)
 

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Me Too!

:eek: Every since I got sick I detest going out into crowds, even if it is just a family gathering, and we have a pretty small family.:hehe: Sometimes hearing the people talk in different conversations while in conjoining rooms makes my mind spin, and I need to run, well walk to the bathroom and sit for awhile, or better yet, grab the cat to which three people are allergic too and will stay away.:lol: But what bothers me the very most are the questions I get either from family, people I am newly meeting and a casual meeting. They so often focus on work and well, I have not worked since 1991. It is really hard to explain what I have been doing during the past 17 years, they might understand the lupus diagnoses, might I am trying to be hopeful, but then how do you explain living in a group home for the mentally ill, being hospitalized 13 and upwards of that in the local stress center and then spending time in a psych. hospital in the state capital?:shrug: :eek: Not that I am ashamed of any of the things that have gone on, because I am now in a much better place than every before. But it is hard to talk about university like it happened a few years ago and especially with family I don't see, they are the hardest and have the most probing questions.:mad: I do have however a wide variety of interests, but when people hear I do not work, they kind of wander off to someone else. karly
 

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Hi Nancy, I am the same way. Quite honestly, I do not know if it is symptom of Lupus or not, but if I had to bet, I would say yes. This was brought up on this board before, and you are certainly not alone. There are a lot of Lupies
here that are just like you, me included. I used to wake up on the day's of my hair appt. with a migraine, and I would call and cancel. Two hours later, I was fine. I don't wan't to go grocery shoppingany more. Like you said, I am more
comfortable staying at home. So, you have plenty of company that are just like you. Not that it helps, but we
all understand each otherr.:wink2:
 

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Discussion Starter · #6 ·
I am sorry so many others feel this way, but at the same time am glad to know I am in good company!! :wink2: I never used to be this way either, and started this autoimmune journey about 4 years ago, the fear of public places/crowds has been going on about 10 years, but that is when all my joint problems and fatigue started also. I find even crowded chat rooms stress me out LOL :rotfl:

Thanks everyone!

Nancy
 

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Hi
We all seem to have the same sx:hehe: ! Long before sx started I could not enter rooms full of people (thinking they would all look at me). I hate crowds (a friend took me to the Ideal Home Show at Olympia and I had a panic attack), I couldn't walk down busy shopping streets like Oxford Street in London or New Street in Birmingham without feeling dizzy and coming out in cold sweats. It got better when I learned to drive and was mistress of my own journey. I still don't like being crowded (try telling that to 3 under 5s who try to climb onto Mummy's lap at the same time, they still try to do it and they are in their teens now :lol: ).

Since my first big flare in 2002 I have found it very hard to concentrate when there is noise around me. I find it hard to hear someone talking to me in a noisy office or even at home if the TV is on and the girls are just being "teenagers". I feel the world is collapsing in on me and I have to find fresh air. Some days are better than others but when I am in an active flare I just want to stay in bed alone in the house, cool and quiet.

I don't like the heat, either. I get very stressed when I cook. My new house has the boiler in the kitchen and there is no extractor fan. My old kitchen was remodelled with extractor hood and working ventilation - we have yet to work on this kitchen.

So we think it is a lupie thing? It certainly makes sense to me, particularly as my sx increased after this massive flare in 2002.

I wish you all a calm, stress-free, quiet (and cool) evening to you all....:) .
Love Judi xx
 

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Sorry to hear of your agoraphobia. I have touches of it very very frequently but I would suggest it is not clinical (psychiatric) agoraphobia but rather a secondary symptom arising from the underlying discomfort with one's own body produced by autoimmune disease. I am no MD but spent enough time as a counsellor both in psychiatric wards and hospitals and in "the real world" :)
that I dare issue my opinion on this. In other words, I don't think this is necessarily a longterm problem but rather something out of which you may well just "snap". At least I hope so.
Now I have to go to teach a class *and I really do not want to!*
All the best,
Douglas+
 
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