Does anyone else get the feeling their loved ones think they are exaggerating symptoms?


1st off, i must tell

you all i am sorry..this may be long!!!! beware!!!

Sometime last week i was awoken on the middle of the nite w/extreme pain in mid/lower back..but the wosrt of the pain was going from my right groin, down my rt. leg..after the pain subsided my back was still painful..but rt. leg felt like it was on fire.

Next morning pain/burning was more tolerable..went about my business the best i could...burning was still in rt leg....from groin down and the weird part is the burning was on both the top of my leg and the back of my leg.

For a bit over 1 mth i have been complaing about my neck and arms as well as left sided leg weakness...I think people around here think I am NUTS!!!!!!!!!!!!!!!!!!!!iThough, the cervical spine MRI showed things were messed up..waiting to hear from my NS in RI..I do have appt with local spine doc this friday.

So..yesterday I ended up in the ER b/c I just couldn't take the pain and could barely walk...the ER doc was nice..But, I'm nice too..however, you guys wouldn't want me to treat you!!!

Told him about my pain and burning...told him my neck was a mess but i was NOT there B/c of that.

OK, he examines me and tells me.."I can write you something for the pain"..PAL....I want ANSWERS..NOT DRUG..though a shot right about now would be lovely....naturally, i keep that thought to myself...I did ask if he was goning to order any test to see what was wrong..oh yeah, a freakin' X-Ray..I think we can all agree that is not helpiful with my past fusions ect...I was think more of an MRI???

But it is my experience these docs get their fragile egos bruised you the patient suggest ANYTHING???

Now to my question: do you folks ever get the feeling that the people around you are thinking.."WTF NOW?????"The pain can't be that bad, shes been visiting Ma in the hosptial everyday for hrs on end with a smile on her face..cracking jokes..ect...."

Any similar experiences with you all, or am i just flat out paronoid?????LOL

Love ya.


I often feel like this too. I told my husband I will never make more of my pain than it is. If anything I underscore the pain. It is only when I get to the point that getting out of bed is almost impossible without severe pain or dizziness and nausea that I really complain. I don't think with him it is a case where he thinks I am overplaying it. I think he just fels helpless and I would imagine a little frustrated that plans are interrupted. My extended family however has NO idea how bad it can get. I can tell they are annoyed when it comes up. I say as little as possible to my dad about this but if he sees me grimace he gets very annoyed and says "What's wrong with you?" in a very annoyed kind of way. I almost always say "nothing I'm fine." My brother even said to me "Well daddy would care more if it was serious." !!!!! If the prospect of brain surgery, paralysis, loss of vision, hearing etc. is not serious then I don't know what is. Even if the headaches were my only symptom that would be serious enough. After a week of blinding headpain the thoughts that cross one's mind are serious in and of themselves! My sister just outright does not discuss this with me. If it is mentioned she quickly ignores the reference and jumps to another subject. It is hard to never mention it because it affects so much of my life. When I can't follow through on a plan I think they would rather I make up an excuse than tell them I just don't feel up to it.

Thanks for your support everyone.

Yes, Carla, I sure did take the shot!! 2 of them!! it helped a lot..just the dopey feeling i did not like.

Abby and Jen, thanks for you input and understanding..means SO MUCH!!

Of Course , My dear friend Carla..big thank you for your love and understanding as well....

You guys are TOPS!!!!!!!!!!!!!!



It IS frustrating - everyone says “But you don’t look sick”. So, I think maybe it’s harder for them to take us seriously. My husband used to just kind of tune me out when I would say I was hurting and I often thought I could have a heart attack and he wouldn’t be calling 9ll. I think he just kind of got used to it; it was normal for me to hurt. And, he would make comments that I wasn’t getting much done when I would oftentimes sit down to rest. It wasn’t until I was diagnosed with the Chiari and had the surgery that he changed his way of thinking. We are fortunate to live near where the Washington DC Chapter of the Chiari Foundation holds regular educational seminars on Chiari and related problems. They are designed to educate the medical community to recognize symptoms of Chiari when a patient presents with multiple symptoms. He always attends those with me and he has become so much more understanding as he has become more knowledgeable. He was always good to help around the house - well since he has gotten older at least - and has helped with things that are hard for me to do. He works constantly and NEVER sits down, so he just didn’t understand why I had too. After I had worked about a 60 hour week at the Pentagon, I was exhausted. Looking back I don’t know how I did it; I guess resolve goes a long way. Now I understand…and He’s learning to too…education seems to be the key. I don’t think it’s a bad thing that we’re still looking good! Just have to educate those around us that you can have problems in spite of that. Unfortunately, that oftentimes means educating those who treat us too. Hugs. Shirley

My son today (17) told me for the first time I was “milking it” when I asked him to do the dishes. I immediately remembered this discussion and cried for an hour to myself. If he only knew how often I want to ask for help and don’t because I don’t want my kids live’s disrupted.

I think kids should be helping out with household chores whether anyone is sick or not. But,of course they don't want to. They gripe and complain about it and will get out of it if they can. And, from my experience they use whatever excuses they can come up with to get out of it. I sometimes had to point out to my kids that as you go through life you have to do a whole lot of things you don't want to and parents provide a place to live, clothes, video games, and all those other things they wnjoy having, so it's not unreasonable that they help do the dishes, make their beds, and clean up any messes they make or I might decide that I just really didn't WANT to spend all my money on that stuff either. I have to explain this to my grandchildren every now and then when they don't want to help with the dishes.....and all they have to do is put them in the dishwasher. My daughter is a lot stricter than I was though - when the kids gripe, she takes away their computer and other privileges and it seems to work. The l3 year old has lost her computer privileges until June (unless she earns them back) because of not wanting to do her chores and homework and talking back about it.....OMG that's a long time!!!! She has earned back one hour a week by doing everything she has been told without questioning anything for a month now and that only gave her one hour a week.. I could never have lasted that long but my daughter can and does....I'm a softie. and, I agree, sometimes it is just easier to do it yourself!!! I don't have young children, but my doctor is good about explaining my limitations to my husband and that has helped him understand.....hopefully you have doctors who can help with that too.



heeheheheh lori,

we all are paranoid, lolol

yes do you sometimes feel like that, i do with my family, i am at the point now that i dont even mention what is going on, unless its really bad,

my parents call me, drama queen, and docs look at me side ways, go on antidepressants, lol, i could hit them all at times, so ive just learnt to keep my mouth shut, and docs i be care on what i say, so they dont think im crazy,

but the thing is, WHY DO WE HAVE TO FEEL LIKE THAT????? we justify why we are like that to people in our lifes wether its personal or professional,


joelene…said perfectly…

carla, im guilty of that too, and inside im at boiling point, lol you do that to ourselves, i dont want to be a burden either, but hey maybe its time for change, we short live ourselves everyday,

in alot of ways cancer is more acceptable condition, the word everyone knows, its not something that needs to be explained, its there,

why is that, i sometimes wished i had the C word not C (chairi) lol, just so i can be taken seriously.

its a horrible world that we live in at times

Because it’s not an"appreciated" condition, disease, or illness. And because it takes our lives over it is always the parrot sitting on our shoulders mocking us. And even when we put on the brave face we are those people we never like to ask about how they’re feeling. Personally I’m gaining a higher level of compassion for those poor sweet grandmas whose own bodies rebel against then and they have to vent before they explode.


hi susan

frogs kissing, lol, if only they turn into prince carming, lol

i agree awareness is very important, but it doesnt help us who are suffering now,

yes and you have to push and very hard and often, daily if you can, lol


hheheheheh susan thats a good point,

Good morning to all!! When my niece was diagnosed with Juvenile Arthritis my sister got brochures and gave them to every family member so we could read up on this condition. So here is a suggestion, why don’t we do the same for our condition and give out literature to our loved ones. We can’t blame our family members for not understanding something that most of the medical field doesn’t even recognize. The more we educate our spouses, children, parents and friends, the more they will be able to understand exactly what we go through every day of our lives: the pain, discomfort, depression, etc. We need all the support we can get.


My niece was diagnosed when she was around 3 years old. She had some difficult years. But today she is a healthy 18 year old young lady, attending college in Miami. You would never know she has Juvenile Arthritis. Thank you for asking.

Love Ya



i can so relate to how you felt when you asked your 17 yr old to do the dishes...i get huffing and puffing when i ask my girls to help out.

shirley is right, kids should help anyway..illness or no illness..actually we had a 'family mtg' of sorts last night and talked about helping out b/c it's the right thing to do, ect...we'll see how long this lasts..LOL

joelene, the heck with them, no disrespect to your folks..but you are not a DRAMA insensitive.

i think after the last few weeks of being in the hospital, er and doc offices.....i have a somewhat new view on people in general.....try(and i mean really try hard) not give a hoot what they think of me.....

susan, you tell it the way it is.....wish i could do that..but once ii start..can't stop..THEN..i will be disowned by my family!!!

blessings to all,



you make a lot of is key..

i am doing ok this morning....slept well last night...always a good thing.

happy that hubby and bro-in-law are working on the will be great not to go downstairs to pee in the middle of the nite..ha, ha...

hubby suggested to my mom, she is still in rehab...and very, very depressed....he asked her to say the serenity prayer out loud w/us.....i am not sure if it is helping her,poor thing...but i have been saying that prayer and it puts things in perspective...."courage to change the things i can...and wisdom to know the difference".

so many things in life are out of our control...there are many things i could do help myself more. eat better, more walkingect..sometimes i am my own worst enemy, ya know?? so today, i am feeling empowered.....things will get better..i will work on the things i can change and thing i can do.....wish me luck!!!!!

love ya all,

lori..aka custer

I have actually seen progress. I asked my husband to take part in the Chiari 101 webinar this past Wednesday. He did, and his attitude has changed. It is like now that he’s heard it from an expert “personally” it has value. I’m glad! I had tried the pamphlets, web sites etc but he wouldn’t read them, or go to them.

My oldest son also got a bit snippy with me about my saying some men were cute. “You’re a married woman you have no business lusting after other men.” Oh, brother! I reminded him that he has all but ignored my upcoming surgery. I have seen and felt very little compassion from him. And if he would like to fell he has the place to point out my errors he needs to deal with his apathy.

And now I’m 3 days from surgery. Talk about time flying.

thankyou susan and lori,

my parents are drama queens, manly my mother, i cant even stand talking to her now, there has been so many times she has told me "i had stuff like you going on, and with five kids, so get on with it" she admitted later that her crap was way less than hers, and also, she gave up on specialists (she only went once and that was 30 odd yrs ago)lol lol, and that i couldnt waste my time with them, and that if im going to die i should do it at home, i was shocked on that one,

My father one day told me that there was a perfect job in the paper for me,,, i thought call and said what was that? HE SAID A DRAMA TEACHER,

ive made a chose to have mere minimal, with them, im sick of it, it makes me so angry and then i feel like its my fault, this is hard enough without there negativity as well, god they dont even support me, told chocolate was what i needed, while having a mini stroke in front of dad, hahahha, grgrgrgrgrggrgrgr i may love them, but i dont have to have anything to do with them, they can kiss my arse...........

sorry im just so angry and upsett with them, im meant to be their daughter, if they want to know me, they have to do it on my grounds not theres, enough is a nough, i wont even bother when i go for surgery.

CHOCOLATE lololoolol, thats horrible,




Oh this just makes me soooo mad. When someone is diagnosed with cancer, brain tumor, (yes, these are very serious medical conditions) these individuals get so much support from their spouses, children, parents, doctors, friends, co-workers, etc. But when you are diagnosed with a disease or disorder that is not well known or invisible to the eye, people tend to question your illness or question whether you actually have an illness. Family members tend to be the worse offenders of this, they lack the compassion that we think automatically comes with being part of a family.

Just because someone is a family member doesn't mean we have to "like" them. I have a a sister. She is my only sibling. I cannot stand her, really I can't. I never liked her from the time I was little. I do love her. She has and always will be the most selfish person I know. I am closer to my friends. That's how it is and I have always accepted it, I have never tried to change it because I knew it would lead to disappointment.

As the others on the wonderful support group have told you, you are NOT a Drama Queen. You are an extremely strong woman who suffers from an unforgiven illness that effects every aspect of your life. You will get through this. There will be good days and bad days. On the days that you feel alone, get on this support group because we are all going through this and we will help you through the rough times!

Hang in there!!

Love ya