Guest guest Posted October 28, 2005 Report Share Posted October 28, 2005 Hi : No, you are not weird lol! Sounds like fibro type stuff - I have it too - sometimes my skin feels so tender, like I have a bad sunburn, and it's almost painful to have anyone touch me. I can also relate to tight waistbands - I wear my sweat pants all the time at home, and my pjs are also loose in the waist. Looser clothing just is more comfortable. Sounds don't usually bother me, but light can, bright light especially, and sometimes get headaches if I am in bright indoor light for too long, and also with computer use. Now that you mention the hot, spicy food, I used to be able to eat much hotter foods too, still do, but you are right, the burn does last longer. That is too strange. On the upside, at least you have a diagnosis, a name for your monsters, and with the name hopefully you will be able to receive the proper medication to fight them better. You are not alone lol - take care - Kathe in CA --- Bauman <ilovecats83160@...> wrote: > Hey everyone, > > Thanks to everyone who prayed about my dr. visit > before my trip to Texas. It went very well. The > dr. was actually somewhat humbled--I think he > realized he was out of line when he blackmailed me > for my tramadal prescription during the week I went > from 15 to 10 mg of prednisone. He finally gave me > an actual diagnosis-- " Inflammatory arthritis and > fibromyalgia " . It's goofy but there's a certain > peace about actually having an official phrase I can > say when someone asks what the heck is wrong with > me. > > Because I've grown to trust everyone in this group > so much I'm about to tell you some of the weirder > things about my illness that I don't even tell > doctors any more, and I want to know if there is > anyone else out there like me. The last time I told > a doctor some of this stuff, her actual words were, > " You're so weird. " > > First of all, when I'm having a bad day, even my > skin hurts. Like today, I was trying to make a > necklace with beads and I stopped because when I > would put a bead on the end of my finger and poke > the string through it (it's the consistency of > fishing line), when it touched my finger it really > hurt. Another problem with this is that waist bands > are painful--even when they're loose. I spend most > of the time in pajamas and there are some days that > I have to wear overalls if I go out. One of my > friends called me an " old hippie " because of how I > dress. I'm not just talking about > uncomfortable--I'm talking about Ow OW OW. > > The next thing is that once upon a time I loved > spicy food and now I can't tolerate it at all. Not > only that, when I get a bite of something that's > hot--like salsa that I thought was mild but turned > out not to be--it burns my mouth for a loooooooong > time. Before I got this, even if I burned my mouth > with spicy food it would go away in just a couple of > minutes, but the other night a bite of salsa had me > sucking on ice for the next 45 minutes. It just > wouldn't stop hurting and the pain was severe from > it. > > Another weird thing is that certain noises hurt > certain parts of my body. Please don't think I'm > crazy--even you guys might find this too weird, but > an example is that I was visiting a church and the > preacher's mike was a little too loud and he was one > of those people who makes their " S " sounds whistle > when they talk. Every time he said a word with " S " > in it, it went right through me. It made my cheeks > and my legs hurt. Those noises that come from > gameboys and certain Nintendo games are physically > painful for me, even when they're not too loud. > Every now and then one of my daycare kids will > screech and it hurts my ears for way longer than it > should. > > Okay, now I've gone out on a limb. Anyone out there > as weird as me???? > > laura > > cnberte <bertelson@...> wrote: > I am not positive, but I believe Lucille Ball had > RA. > > > > > > > > > I was just wondering what do the wealthy and > > > famous do about their > > > > cnditions. Surely it isn't just the regular > > > people who have > > > > illnesses. Why is it we never see or hear > from > > > those famous, and > > > > were they famous before getting the disease > and > > > how do they earn a > > > > living after getting the disease? > > > > > > > > > > > > > > > > > > Kathe in CA > > > > > > > > > > __________________________________ > > FareChase: Search multiple travel sites in > one click. > > http://farechase. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2005 Report Share Posted October 28, 2005 Hi : No, you are not weird lol! Sounds like fibro type stuff - I have it too - sometimes my skin feels so tender, like I have a bad sunburn, and it's almost painful to have anyone touch me. I can also relate to tight waistbands - I wear my sweat pants all the time at home, and my pjs are also loose in the waist. Looser clothing just is more comfortable. Sounds don't usually bother me, but light can, bright light especially, and sometimes get headaches if I am in bright indoor light for too long, and also with computer use. Now that you mention the hot, spicy food, I used to be able to eat much hotter foods too, still do, but you are right, the burn does last longer. That is too strange. On the upside, at least you have a diagnosis, a name for your monsters, and with the name hopefully you will be able to receive the proper medication to fight them better. You are not alone lol - take care - Kathe in CA --- Bauman <ilovecats83160@...> wrote: > Hey everyone, > > Thanks to everyone who prayed about my dr. visit > before my trip to Texas. It went very well. The > dr. was actually somewhat humbled--I think he > realized he was out of line when he blackmailed me > for my tramadal prescription during the week I went > from 15 to 10 mg of prednisone. He finally gave me > an actual diagnosis-- " Inflammatory arthritis and > fibromyalgia " . It's goofy but there's a certain > peace about actually having an official phrase I can > say when someone asks what the heck is wrong with > me. > > Because I've grown to trust everyone in this group > so much I'm about to tell you some of the weirder > things about my illness that I don't even tell > doctors any more, and I want to know if there is > anyone else out there like me. The last time I told > a doctor some of this stuff, her actual words were, > " You're so weird. " > > First of all, when I'm having a bad day, even my > skin hurts. Like today, I was trying to make a > necklace with beads and I stopped because when I > would put a bead on the end of my finger and poke > the string through it (it's the consistency of > fishing line), when it touched my finger it really > hurt. Another problem with this is that waist bands > are painful--even when they're loose. I spend most > of the time in pajamas and there are some days that > I have to wear overalls if I go out. One of my > friends called me an " old hippie " because of how I > dress. I'm not just talking about > uncomfortable--I'm talking about Ow OW OW. > > The next thing is that once upon a time I loved > spicy food and now I can't tolerate it at all. Not > only that, when I get a bite of something that's > hot--like salsa that I thought was mild but turned > out not to be--it burns my mouth for a loooooooong > time. Before I got this, even if I burned my mouth > with spicy food it would go away in just a couple of > minutes, but the other night a bite of salsa had me > sucking on ice for the next 45 minutes. It just > wouldn't stop hurting and the pain was severe from > it. > > Another weird thing is that certain noises hurt > certain parts of my body. Please don't think I'm > crazy--even you guys might find this too weird, but > an example is that I was visiting a church and the > preacher's mike was a little too loud and he was one > of those people who makes their " S " sounds whistle > when they talk. Every time he said a word with " S " > in it, it went right through me. It made my cheeks > and my legs hurt. Those noises that come from > gameboys and certain Nintendo games are physically > painful for me, even when they're not too loud. > Every now and then one of my daycare kids will > screech and it hurts my ears for way longer than it > should. > > Okay, now I've gone out on a limb. Anyone out there > as weird as me???? > > laura > > cnberte <bertelson@...> wrote: > I am not positive, but I believe Lucille Ball had > RA. > > > > > > > > > I was just wondering what do the wealthy and > > > famous do about their > > > > cnditions. Surely it isn't just the regular > > > people who have > > > > illnesses. Why is it we never see or hear > from > > > those famous, and > > > > were they famous before getting the disease > and > > > how do they earn a > > > > living after getting the disease? > > > > > > > > > > > > > > > > > > Kathe in CA > > > > > > > > > > __________________________________ > > FareChase: Search multiple travel sites in > one click. > > http://farechase. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2005 Report Share Posted October 28, 2005 Thanks, Kathe. I am not happy that you experience some of the same problems, but it sure does feel good to be " unweirded " . Even knowing there's one more helps....laura Kathe Sabetzadeh <lv2ryd@...> wrote: Hi : No, you are not weird lol! Sounds like fibro type stuff - I have it too - sometimes my skin feels so tender, like I have a bad sunburn, and it's almost painful to have anyone touch me. I can also relate to tight waistbands - I wear my sweat pants all the time at home, and my pjs are also loose in the waist. Looser clothing just is more comfortable. Sounds don't usually bother me, but light can, bright light especially, and sometimes get headaches if I am in bright indoor light for too long, and also with computer use. Now that you mention the hot, spicy food, I used to be able to eat much hotter foods too, still do, but you are right, the burn does last longer. That is too strange. On the upside, at least you have a diagnosis, a name for your monsters, and with the name hopefully you will be able to receive the proper medication to fight them better. You are not alone lol - take care - Kathe in CA --- Bauman <ilovecats83160@...> wrote: > Hey everyone, > > Thanks to everyone who prayed about my dr. visit > before my trip to Texas. It went very well. The > dr. was actually somewhat humbled--I think he > realized he was out of line when he blackmailed me > for my tramadal prescription during the week I went > from 15 to 10 mg of prednisone. He finally gave me > an actual diagnosis-- " Inflammatory arthritis and > fibromyalgia " . It's goofy but there's a certain > peace about actually having an official phrase I can > say when someone asks what the heck is wrong with > me. > > Because I've grown to trust everyone in this group > so much I'm about to tell you some of the weirder > things about my illness that I don't even tell > doctors any more, and I want to know if there is > anyone else out there like me. The last time I told > a doctor some of this stuff, her actual words were, > " You're so weird. " > > First of all, when I'm having a bad day, even my > skin hurts. Like today, I was trying to make a > necklace with beads and I stopped because when I > would put a bead on the end of my finger and poke > the string through it (it's the consistency of > fishing line), when it touched my finger it really > hurt. Another problem with this is that waist bands > are painful--even when they're loose. I spend most > of the time in pajamas and there are some days that > I have to wear overalls if I go out. One of my > friends called me an " old hippie " because of how I > dress. I'm not just talking about > uncomfortable--I'm talking about Ow OW OW. > > The next thing is that once upon a time I loved > spicy food and now I can't tolerate it at all. Not > only that, when I get a bite of something that's > hot--like salsa that I thought was mild but turned > out not to be--it burns my mouth for a loooooooong > time. Before I got this, even if I burned my mouth > with spicy food it would go away in just a couple of > minutes, but the other night a bite of salsa had me > sucking on ice for the next 45 minutes. It just > wouldn't stop hurting and the pain was severe from > it. > > Another weird thing is that certain noises hurt > certain parts of my body. Please don't think I'm > crazy--even you guys might find this too weird, but > an example is that I was visiting a church and the > preacher's mike was a little too loud and he was one > of those people who makes their " S " sounds whistle > when they talk. Every time he said a word with " S " > in it, it went right through me. It made my cheeks > and my legs hurt. Those noises that come from > gameboys and certain Nintendo games are physically > painful for me, even when they're not too loud. > Every now and then one of my daycare kids will > screech and it hurts my ears for way longer than it > should. > > Okay, now I've gone out on a limb. Anyone out there > as weird as me???? > > laura > > cnberte <bertelson@...> wrote: > I am not positive, but I believe Lucille Ball had > RA. > > > > > > > > > I was just wondering what do the wealthy and > > > famous do about their > > > > cnditions. Surely it isn't just the regular > > > people who have > > > > illnesses. Why is it we never see or hear > from > > > those famous, and > > > > were they famous before getting the disease > and > > > how do they earn a > > > > living after getting the disease? > > > > > > > > > > > > > > > > > > Kathe in CA > > > > > > > > > > __________________________________ > > FareChase: Search multiple travel sites in > one click. > > http://farechase. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2005 Report Share Posted October 28, 2005 Thanks, Kathe. I am not happy that you experience some of the same problems, but it sure does feel good to be " unweirded " . Even knowing there's one more helps....laura Kathe Sabetzadeh <lv2ryd@...> wrote: Hi : No, you are not weird lol! Sounds like fibro type stuff - I have it too - sometimes my skin feels so tender, like I have a bad sunburn, and it's almost painful to have anyone touch me. I can also relate to tight waistbands - I wear my sweat pants all the time at home, and my pjs are also loose in the waist. Looser clothing just is more comfortable. Sounds don't usually bother me, but light can, bright light especially, and sometimes get headaches if I am in bright indoor light for too long, and also with computer use. Now that you mention the hot, spicy food, I used to be able to eat much hotter foods too, still do, but you are right, the burn does last longer. That is too strange. On the upside, at least you have a diagnosis, a name for your monsters, and with the name hopefully you will be able to receive the proper medication to fight them better. You are not alone lol - take care - Kathe in CA --- Bauman <ilovecats83160@...> wrote: > Hey everyone, > > Thanks to everyone who prayed about my dr. visit > before my trip to Texas. It went very well. The > dr. was actually somewhat humbled--I think he > realized he was out of line when he blackmailed me > for my tramadal prescription during the week I went > from 15 to 10 mg of prednisone. He finally gave me > an actual diagnosis-- " Inflammatory arthritis and > fibromyalgia " . It's goofy but there's a certain > peace about actually having an official phrase I can > say when someone asks what the heck is wrong with > me. > > Because I've grown to trust everyone in this group > so much I'm about to tell you some of the weirder > things about my illness that I don't even tell > doctors any more, and I want to know if there is > anyone else out there like me. The last time I told > a doctor some of this stuff, her actual words were, > " You're so weird. " > > First of all, when I'm having a bad day, even my > skin hurts. Like today, I was trying to make a > necklace with beads and I stopped because when I > would put a bead on the end of my finger and poke > the string through it (it's the consistency of > fishing line), when it touched my finger it really > hurt. Another problem with this is that waist bands > are painful--even when they're loose. I spend most > of the time in pajamas and there are some days that > I have to wear overalls if I go out. One of my > friends called me an " old hippie " because of how I > dress. I'm not just talking about > uncomfortable--I'm talking about Ow OW OW. > > The next thing is that once upon a time I loved > spicy food and now I can't tolerate it at all. Not > only that, when I get a bite of something that's > hot--like salsa that I thought was mild but turned > out not to be--it burns my mouth for a loooooooong > time. Before I got this, even if I burned my mouth > with spicy food it would go away in just a couple of > minutes, but the other night a bite of salsa had me > sucking on ice for the next 45 minutes. It just > wouldn't stop hurting and the pain was severe from > it. > > Another weird thing is that certain noises hurt > certain parts of my body. Please don't think I'm > crazy--even you guys might find this too weird, but > an example is that I was visiting a church and the > preacher's mike was a little too loud and he was one > of those people who makes their " S " sounds whistle > when they talk. Every time he said a word with " S " > in it, it went right through me. It made my cheeks > and my legs hurt. Those noises that come from > gameboys and certain Nintendo games are physically > painful for me, even when they're not too loud. > Every now and then one of my daycare kids will > screech and it hurts my ears for way longer than it > should. > > Okay, now I've gone out on a limb. Anyone out there > as weird as me???? > > laura > > cnberte <bertelson@...> wrote: > I am not positive, but I believe Lucille Ball had > RA. > > > > > > > > > I was just wondering what do the wealthy and > > > famous do about their > > > > cnditions. Surely it isn't just the regular > > > people who have > > > > illnesses. Why is it we never see or hear > from > > > those famous, and > > > > were they famous before getting the disease > and > > > how do they earn a > > > > living after getting the disease? > > > > > > > > > > > > > > > > > > Kathe in CA > > > > > > > > > > __________________________________ > > FareChase: Search multiple travel sites in > one click. > > http://farechase. > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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