Help! Am I crazy?

Ever since being diagnosed with lupus, I have noticed that I can’t stand loud noises, lots of commotion or crowds- especially verbose crowds. I was relieved to read on earlier discussion posts that I am not alone. Here comes the crazy part.

Tonight my partner and I went to Johnny’s Pizza to see the owners and for her to get a few beers. This restaurant has very much the Cheers type atmosphere and we have become good friends with the owner. Well, tonight was apparently “Spirit Night” where elementary school kids and their parents eat at a particular restaurant and part of the profit goes back to the school. There were 3 kids at a table by themselves screaming and banging items on the table. Their parents were nowhere near them. We moved further away. Then they started beating on the metal chairs and sliding them across the floor to make horrible, loud noises. BTW, Johnny’s is in a warehouse type building with high exposed ceiling and concrete floors. This horrible activity kept on for 20 minutes or so with no one saying a word. I was totally miserable. Typically in this situation, I would remove myself. Well, much to my astonishment, out of nowhere I said in a really loud tone, “STOP IT”. Before I knew what was going on, I had “yelled” that across the bar/restaurant. I have never done that and so horribly surprised that I did it this time. The owners are not happy with me at all and I quickly walked out and left.

Has anyone else experienced anything like this? Could this be one of those things inadvertently caused by lupus?

I’m still in a state of shock.

I have problems with noise, crowds and also lights.

I can't take my 7 year old to Chuck E. Cheese anymore, I don't volunteer at his school, and I avoid restaurants that tend to be noisier or play loud music. Places like kids' museums, we go on weekdays to avoid crowds.

I blow a gasket if 2 people try talking to me at once (I feel like that's a major audio overload).

Most of the ceiling lights / chandeliers in my home are on dimmer switches. Lights are uncomfortable for me.

I have read that these things can be common with fibro too, which I also have. So, I'm not sure what to blame, but I didn't used to be so "sensitive". Lol. I try to remove myself from the situation or avoid it to begin with, if I think I'll have issues.

I was diagnosed with lupus in 2010 but probably had it longer than that. This week when I went to my barber shop of 12 years, there were several other customers talking with the barbers as well as mine talking to me. All of the conversations seemed so loud and confusing to me, that my heart began to race. I could hardly wait to get out of the shop that I have enjoyed for years. I also seem to have a terrible time with understanding anyone on the telephone. I think in my case the lupus is attacking the bones in the inner ear causing the problems with hearing and occasionally terrible pain. I also have rare periods where one ear totally 'shuts off'.

I don’t know if it’s a lupus thing or just an “age” thing. I had a similar incident with kids. I was watering or weeding my front lawn when a group of kids around the ages of 10-12 years old were approaching and one in particular had such a potty mouth. He was swearing away to the others and I found it so disrespectful that he didn’t clean up his language as they approached. When they got by me I yelled at him to “watch your mouth!”. They looked surprised, but it worked. He stopped swearing. I also was shocked at myself for yelling at someone else’s child which I’d never done before. I was raised the old-fashioned way of children showing respect to adults. Unfortunately, some children behave differently when their parents aren’t around. Lupus can and does change us thanks to the stress of dealing with It. The unpredictable nature of this illness on a day to day basis can change anybody.

I can relate to this, I don't notice the light sensitivity, but following conversations, concentrating to a conversation on a phone is difficult for me. Visiting, and following conversations are physically exhausting for me. I am so used to feeling this way, I don't even think about it. I get frustrated with my family... especially my ADHD daughter when she raises her voice out of the blue on the phone, I hand the phone off to my husband.

I have become really aware of my sensitivity to loud noises and crowds and typically remove myself. There is one restaurant that has great food and is a lot of fun near my lake house and I love to go there. However, it is REALLY loud. The tvs are blaring and most nights they have karaoke. I bought clear ear plugs and wear them there and that seems to work. Maybe I should wear those everywhere.

I'm just concerned that I lashed out at someone and was not able to control it or aware that it was going to happen. Very unhappy with myself and scared it will happen again. :-(

I don't want to become a recluse, or "that b@tch". Frustrated.

NOT CRAZY and not the lupus!!

I do not nor have I ever liked really loud noises nor do any of my best friends. We all resent if we are at movie theater or dining out and there are children allowed to run wild with out any parental supervision. We have had kids come up to our table and take our food! NO Excuse for kids to not be taught at early ages how to act when out in public.

If there was sign outside before entering stating that a school event was going on and it might be nosier than normal , well even than there is limit to what is acceptable. Again..where are the parents?

Now if i am out at a park and kids get really loud and run around crazy well i think that is find but i would still expect the parents to be supervising them for safety reasons...both for my kids as well as their own...or even if i had dog with me. I do not want out of control kid to pull my dogs ears because she is sweet dog. I will not let any person hurt my animals....instead i teach them to be gentle.

So if the owner got upset..well what was his problem? You are paying customer, who thought you were going to get the same kind of service and atmosphere as you had in the past...which is what most people think and expect.

So i think you were fine to yell though like you it would have surprised me when it came out lol! I have a good laugh about yourself just asserting yourself. Thing is with not feeling well our patience is shorter at times...or if you are in PMS and if you have both it is very short. So you are not alone in having lost control. Or did you? Did you just finally do what in the past you wanted to but did not have the guts?!!

I have friend, who never had a problem about schussing people in the theater or if their kids were acting up like that...she get the owner and ask them to find the parents and to keep their children under control.

So you are not crazy and I bet there were people in there silently and possibly not so silently applauding you for standing and saying exactly what they wished they had the guts to do. You just felt surprised at yourself...and just left with out noticing this!

I am sorry...but one thing about getting sick..it changes us..kind of like getting older and you just are not going to tolerate things anymore since as my mom says..what does she have to lose at her age...each day is gift and she does not want others to wreck it.

think that is good way to look at it...now if you can just be a bit more diplomatic lol!!

You are not crazy! What kind of meds are you on? I have had lupus since 1975, a long time. It take a long time to understand and experience lupus. If you'd like maybe I can help.

No, you are fine at times I can't stand a lot of noise or people. There are times that I just want to be by myself and my husband don't understand that. It seems like its always the time he wants to play around and be silly, so I have to do it sometimes so I don't hurt his feelings, but in my head it's just like the room is spinning I'm about to go crazy. I'll do it until I absolutley can't take it any more and I go to bed and shut everybody out. It's hard when you have family around all the time. It should get better!! Take care!!

Carol

I have a really hard time with too many people talking. anyone that raises their voice at me. my husband tends to lecture and talk too much and it makes me crazy! ive noticed im starting to not like sitting around the people in the bleachers at games. if people are in the car with me the radio cant be up, but if im by myself its ok. I cant take chaos. ive become so anxious I had to get some medication for anxiety.

Hi Miller,

I don't have a full lupus dx, but I do have other autoimmune diseases, and that kind of noise and commotion is hard to take! Tough enough to take when you are well, when you're not well it's even more difficult.

If there was no parental supervision, then the owners really should have stepped in, or you should have just stepped out! Sometimes the subconscious mind comes to life to protect us and things like that just happen!

This should let your partner know what your limits are, since you are not well, perhaps she will know when it is time to get the check and get you out of there!

I know you are mortified, not sure if a call to the owners explaining what happend and why are a good idea or not, you will have to talk to your partner and make that call.

I wish you well,

SK

No I would have told them to stop also. I HAVE BIPOLAR and anyone with a illness is going to have outburst. I never was that way until 2009 about 7 yrs after I was diagnosed with Lupus and long term use of antidepressants make it worse good luck I know how you feel

Hello Miller,

You not alone where this is concerned and we've had discussions like this previous and i don't blame you for shouting i would have done the same but i will recommend in future if you'd like to go out i do recommend something quiet where you can enjoy yourself in piece.

You can become very sensitive to noise, crowds etc and it's down to how active and strong your lupus is playing up...i'm very sensitive with my hearing and if the tele goes up it's soon back down as it drums my ears out.

There's alot of involvement with the CNS and these are other's factor's which it interfers with besides and hearing is one of them:

  • Irritability
  • Emotional disorders (anxiety, depression)
  • Mild impairment of concentration and memory
  • Migraine and tension headaches
  • Problems with the reflex systems, sensation, vision, hearing, and motor control

Thanks for all the support and comments. This means so much to me. And yes, I have been wondering if I should call or email the owners. I’m embarrassed but also, they are pretty close friends and I thought they would have checked on me to see if I was ok and find out what was going on.

Phoenix, I am currently on:
Synthroid - for hypothyroidism
Effexor - but I don’t think it does any good
Methotrexate
Methylprednisone
Naproxen
Folic acid
Plaquenil
Tramadol

Hello Miller

No you are not alone on this one… I cant stand loud noises either. Even a loud TV bothers me. I never thought about it though till now that you bring it up. I actually leave my house when my husband watches sport games just from how loud it gets. Thank you for bringing it up!

It's not you !!! , REALLY it's not !!!! It is ALL PART OF LUPUS - believe it . Like myself for 2years come Feb. , noise drive my CRAZIE . I can't to crowds of people - my nerves going crazie and then i start screaming for the noise to stop . My family now help with those moments and sometimes i don't go to the gatherings that they have due to the noise i know will be there ... For Thanksgiving , my sister gave a dinner at her home all 5 out of 6 was there, but i saw the pictures that they took for my dad -everyone did understand !!! And it wasn't like i did want to go and be there with my only sister and 4 brothers - i just couldn't do it ... Hope that you get control of it to the best of your Power . Missing family time is no fun , but your health comes first ( if they understand what happens to you when thos times come around )- it took my family awhile to realize that. take care ...Bevery L.

Wow,I didn't know that others with lupus dealt with the noise issue. I had been working as a substitute teacher and I just couldn't handle the noise levels any more, and had to quit. The cafeteria was absolutely painful! I'm so glad I found this site. I have never had anyone who can relate to all the weird symptoms I deal with.

Hello Miller,

Being close friends i would have thought they'd have asked if you was ok.

We've had a discussion on here about Tramadol and how it's affected some members, here's the link if you'd like to read it as with some meds we do have to be careful :)

http://www.lifewithlupus.org/forum/topics/kicking-tramadol-any-ideas-stories-thoughts

miller482,

Even before I was definitively diagnosed with Lupus, lights, noises, etc were overwhelming. Luckily I live in Vegas, where it's quiet and calm (she said sarcastically) I had a gran mal siezure in 2003 and tended to stay away from lights and noises since. What I have learned about the Lupus is that it takes forever to diagnose in some patients. That said, you were probably experiencing the effects of the vascular tightening in the brain. Lupus patients are more prone to TIA's, headaches, strokes, and many other issues that stem from tightening of the blood vessels in the brain. Anyway, that is what my nuerologist told me as to why I was SO incredibly sensetive to loud noise and sound. I couldn't go to ChuckECheese 15 yrs ago. I would get physically ill. BTW, where were the parents? Sorry, but behavior like that should have been taken care of by the owners and they should not be angry with you. Many restaurants are going kid-free for a reason!

Take it easy on yourself.

DeAnne

DeAnne,

So true about what your neuro told you as i've experienced these alot myself and regarding grandmal seizures i've had them for the past 26yrs besides another form of seizure and all of them have been caused by Lupus :)

whathappensinvegas said:

miller482,

Even before I was definitively diagnosed with Lupus, lights, noises, etc were overwhelming. Luckily I live in Vegas, where it's quiet and calm (she said sarcastically) I had a gran mal siezure in 2003 and tended to stay away from lights and noises since. What I have learned about the Lupus is that it takes forever to diagnose in some patients. That said, you were probably experiencing the effects of the vascular tightening in the brain. Lupus patients are more prone to TIA's, headaches, strokes, and many other issues that stem from tightening of the blood vessels in the brain. Anyway, that is what my nuerologist told me as to why I was SO incredibly sensetive to loud noise and sound. I couldn't go to ChuckECheese 15 yrs ago. I would get physically ill. BTW, where were the parents? Sorry, but behavior like that should have been taken care of by the owners and they should not be angry with you. Many restaurants are going kid-free for a reason!

Take it easy on yourself.

DeAnne