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| donna - Jun 19th, 2006 7:30 AM | |
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all the time. my friends & family do not really understand this at all, except for one. Her mother & another friend have FMS and she understnds what I am going through. When I mentioned to someone at work about my sleep disorder same thing, "oh, I think that's my problem too". It sometimes just sounds so belittling. I try to not let it get to me, but some days it's hard. My mother in law is not well, pretty much housebound, so with all the problems there, my husband really does not want to hear about my problems too. He can't handle having his mother sick all the time. I've tried to tell her that I can't visit as often because I don't feel well, but as far as she is concerned, since no one is sick as she is, we should all suck it up & do our duty. | |
| Tim - Jun 21st, 2006 9:04 AM | |
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Donna , thanks for responding. My best freind thinks that I don't appreciate him because I don't go visit much anymore, I am tired of trying to explain to everybody what this is like , and of course its only human nature for them to try to relate to it through there own experiences of pain. Like trying to explain what an orange tastes like to someone who has never tried one, only one way to know and I don't wish this condition on anyone. My wife has been there for me all the way, she doesn't baby me, but she does not underestimate the pain. It's a trust issue, she trusts me to know that I'm not over eggagerating it. I hope you can get more respect from your family and freinds that this is who you are now .. as all of the rest of us know.. | |
| Chris - Jun 21st, 2006 3:11 PM | |
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Hi Tim; I know a few doctors I'd wish this on! | |
| Colleen - Jun 30th, 2006 10:46 PM | |
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Hi Tim,I completely understand.For about 10 years I've known something was wrong with me.I don't have insurance and was going through the system at Charity hospital,and everyone thought I was wasting my time ,that it would soon pass.I knew better.They were taking test and ruling out certain things,and I think I was getting close to a diagnosis.I live in New Orleans and as you most likely know hurricane Katrina hit us.I and my husband,sister and mother [74 yrs.old]evacuated to my Monster in laws house.Every time no one was in ear shot she would say things like "oh you just use that fake pain as a crutch".Well a fight insued and she kicked us all out during hurricane. [Real nice lady that she is].Anyway the hospital was ruined along with the paperwork.Well I did find a Dr. who diagnosed me and is treating me.And I was so glad to have a name for this pain.I know it is so hard to try to explain to people how you feel.Mostly I find most people have never heard of it before.And since we look pretty much healthy they think we just complain.Sometimes I can see in their faces that they aren't even really listening.Like you are a hypercondriact or something.Especially my husband.Know I just tell them to look it up.And I no longer care what my husband and his mother think.The stress I was under during that hurricane was so bad I cried every night in pain.Try not to get stressed to much,to me stress is the worst trigger.Good luck to you and take care of you !!!! | |
| AmberRose - Sep 24th, 2006 10:58 PM | |
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I totally know what you mean! My father in law is just like that! He thinks we get the same pain becaise hes old and i have fibromyalgia......i dont really think people quite get it...my parents fortuanlty understand a little but better and my dad is researching more about it as i was just diagnosed..he wants to know as much as he can to help me out! god bless him! i wish more people would do that. The may not get empathetic but the could be a little sympathetic about the whole thing.And of course no one knows what anyone goes through unless they've been through it as well. | |
| Virg - Sep 25th, 2006 12:23 AM | |
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Hi Tim, oh yes thats the beginning of handling FMS with others. You yourself | |
| rachelr - Oct 4th, 2006 12:25 PM | |
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The unfortunate reality is that we look 'normal'. If we're around people, family, etc. and we're clean and presentable, everyone says we look great. Ergo, not sick. It's really frustrating. | |
| JenV - Mar 13th, 2007 1:32 AM | |
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Tim | |
| Robin1237 - Sep 20th, 2007 6:00 AM | |
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Ok , I know what we've all got -- we've got Lyme disease, a bacterial infection that inflames our nerves and soft tissues.Go to www.lymenet.org/FlashDiscussion/MedicalQuestions and read what people are discussing. You can also post there and people will respond. They can help you find a Lyme-testing/treating doc. Colleen -- there is someone on there named Geneal. She is from New Orleans and I believe she got Lyme after Katrina. You can click on the directory, put her name in, and then pm(private message) her . And yes, we do look normal, but we're anything but normal, with a raging bacterial infection inside of us, generally acquired from being bitten by an infected tick, but can also come from being bitten by other insects, as well as through human transmission. We generally need antibiotics, and people are also trying all kinds of other treatments. Just got to read up on it and decide what you want to try. | |
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