Hi i have just been diagnosed with sle lupus i live in north east and would like anyone local to e mail me as it would be nice to talk to another person who has this,at the moment i have only mild sle and my doctor says that i should not go on the internet, the problem is i would like someone to talk to.
sandy123
1 - 11 of 11 Posts
hi there,
Welcome to the site, glad you found us... This is a great support site and you will find a lot of people on here that you can relate to... There is a ton of information also...
I dont know why your doctor would say not to come on the internet, he or she obviously have never been here to visit this site...
This is a place you can meet people who have the same aches and pains that you have.. That understands you when you say you are tired beyond words... That understand you when you say you are tired of people saying... "well you dont look sick"... That are just here to talk to when you need to vent....
I have been coming on here for years and I have to tell you this is the best bunch of people you will ever meet in your life....
So Again a Big:welcome: and so glad you did not listen to your doctor...
Love Penny
Welcome to the site, glad you found us... This is a great support site and you will find a lot of people on here that you can relate to... There is a ton of information also...
I dont know why your doctor would say not to come on the internet, he or she obviously have never been here to visit this site...
This is a place you can meet people who have the same aches and pains that you have.. That understands you when you say you are tired beyond words... That understand you when you say you are tired of people saying... "well you dont look sick"... That are just here to talk to when you need to vent....
I have been coming on here for years and I have to tell you this is the best bunch of people you will ever meet in your life....
So Again a Big:welcome: and so glad you did not listen to your doctor...
Love Penny
Joined
·
10,191 Posts
Hi Sandy,
Welcome to the lupus site.
You have found a good place for information and caring members.
I know there is a lot of out dated information on lupus on the internet. Some of it can really scare a person. Maybe that is why he said not to go on the net?
This board has members from all over the world.
It is a roller coaster ride of emotions when you learn you have SLE. It is great to talk to people that know how you are feeling and what you are going threw.
Take care,
Lyn
Welcome to the lupus site.
You have found a good place for information and caring members. I know there is a lot of out dated information on lupus on the internet. Some of it can really scare a person. Maybe that is why he said not to go on the net?
This board has members from all over the world.
It is a roller coaster ride of emotions when you learn you have SLE. It is great to talk to people that know how you are feeling and what you are going threw.
Take care,
Lyn
Hi Sandy, I live in Charleston, SC not sure how close to you that is but if you ever need someone to chat with please feel free to send me a email.
Like they have already told you, this is a wonderful site. I know without these wonderful caring people I would probably be a basketcase ready for a padded room.
And my doctor told me to stay away from the medical sites, he advised me to find a lupus group where they know what you are going through and understands. And he was right, the medical sites sometimes scared the willies out of me, but here they quickly become friends and soon become like family. So you came to the right place. :wink2:
Like they have already told you, this is a wonderful site. I know without these wonderful caring people I would probably be a basketcase ready for a padded room.
And my doctor told me to stay away from the medical sites, he advised me to find a lupus group where they know what you are going through and understands. And he was right, the medical sites sometimes scared the willies out of me, but here they quickly become friends and soon become like family. So you came to the right place. :wink2:
Hi Sandy,
Welcome to the site. Being diagnosed with Lupus can really throw you into a tailspin. A site like this is of great benefit. Knowing others are going through the same thing somehow makes it easier.
When I was first diagnosed I went straight to the library (no internet back then). The books were so out of date and they scared me half to death. The internet has more recent information but even some of it is outdated. Personally I found doing research helped me. I came to realize that so many of my symptoms were part of the bigger picture not just me falling apart in even more ways. If you do decide to do research remember that everyone is affected differently. You most likely will not get all of the symptoms.
I hope to see you in the chat room sometime.
Take care,
Lazylegs
Welcome to the site. Being diagnosed with Lupus can really throw you into a tailspin. A site like this is of great benefit. Knowing others are going through the same thing somehow makes it easier.
When I was first diagnosed I went straight to the library (no internet back then). The books were so out of date and they scared me half to death. The internet has more recent information but even some of it is outdated. Personally I found doing research helped me. I came to realize that so many of my symptoms were part of the bigger picture not just me falling apart in even more ways. If you do decide to do research remember that everyone is affected differently. You most likely will not get all of the symptoms.
I hope to see you in the chat room sometime.
Take care,
Lazylegs
sandy123
Thank you all for the correspondence, it was lovely of so many people who replied back to me, i live in gateshead at the moment i am still trying to find my way with the computer, so please be patient, i have trouble understanding how to get on chatline.
My lupus was diagnosed after carpal tunnel operation was done, my hands and wrists are very sore and also my elbows,typing this is rather painfull i have been on sick since November 2007.
My DNA binding is 25 units, this means nothing to me, only today could not get out of bed as i feel so tired and my knee is killing me.
Well sorry about the moan, just need someone to listen once in a while.
Once again thanks to everyone who replied back i was so pleased when i eventually learnt how to get into the site.
Thank you all for the correspondence, it was lovely of so many people who replied back to me, i live in gateshead at the moment i am still trying to find my way with the computer, so please be patient, i have trouble understanding how to get on chatline.
My lupus was diagnosed after carpal tunnel operation was done, my hands and wrists are very sore and also my elbows,typing this is rather painfull i have been on sick since November 2007.
My DNA binding is 25 units, this means nothing to me, only today could not get out of bed as i feel so tired and my knee is killing me.
Well sorry about the moan, just need someone to listen once in a while.
Once again thanks to everyone who replied back i was so pleased when i eventually learnt how to get into the site.
Welcome Sandy
I joined an internet group when I first got Lupus and it was a real help to me.
This group here is very like the group I was with then, everyone is so friendly and helpful. The medical info on the internet can be a bit frightening and also very confusing and technical. Here you get people with lupus who understand, share and support. I think it is a really safe environment to be when you are ill.
I think with the chat room you have to click on Chat Room and then click on enter Chat Room but there is not always someone there.
If you need support or information just ask for it, someone always seems to be around to lend a helping hand here. Don't worry about typing and stuff, I have to go over everything i type as my typing is bad some days.
Take care
Sara
x
I joined an internet group when I first got Lupus and it was a real help to me.
This group here is very like the group I was with then, everyone is so friendly and helpful. The medical info on the internet can be a bit frightening and also very confusing and technical. Here you get people with lupus who understand, share and support. I think it is a really safe environment to be when you are ill.
I think with the chat room you have to click on Chat Room and then click on enter Chat Room but there is not always someone there.
If you need support or information just ask for it, someone always seems to be around to lend a helping hand here. Don't worry about typing and stuff, I have to go over everything i type as my typing is bad some days.
Take care
Sara
x
Hi Sandy and welcome to the site.
I was also told by Rheumy not to look on internet because it would scare me and although I'm not diagnosed yet I still wanted to know about lupus as he said that's what he suspected.
If I'd not had looked on the internet I wouldn't have found this great site full of caring, supportive people so I'm glad too that you have found it.
Hope your knees doing better today and that your feeling well.
Take care
Mrs M
I was also told by Rheumy not to look on internet because it would scare me and although I'm not diagnosed yet I still wanted to know about lupus as he said that's what he suspected.
If I'd not had looked on the internet I wouldn't have found this great site full of caring, supportive people so I'm glad too that you have found it.
Hope your knees doing better today and that your feeling well.
Take care
Mrs M
Hello Sandy and a warm welcome to you!
I have moved your last post to Newly Diagnosed because it mostly has to do with reporting symptoms to doctors, which can be a big problem especially when Newly Diagnosed.
Here is a link to it.
http://www.thelupussite.com/forum/showthread.php?t=71018
If I were in my " ain country" I would be happy to meet up with you- I'm a Geordie but live in soppy Surrey to be near daughter and family. However LupusUK has an active North East branch. Myself, I much prefer online support for all sorts of reasons mainly ease of access 24/7 and breadth of experiences to tap into. I have found that at real life support groups many people are only interested in talking about their problems and nobody related to mine but maybe I was unfortunate.
Many doctors actually recommend this site understanding that sharing problems is a major help in living well with lupus and learning how to adapt. But it's true that the web has to be used very sensibly. There is a lot of misleading outdated and plain wrong information out there. A good rule is to distrust anybody who's selling products and services.
Another problem is that usually the worst case scenarios are dealt with in detail. Many people live very well pretty normal lives with their lupus under control, even when it has sometimes been quite severe - they don't post on forums because they have no problems so even this forum isn't truly representative.
The right treatment at the right time can make all the difference to the future. There are some good lupus doctors in Newcastle though. I suppose you have been put on some medications already?
We owe it to ourselves to be as well informed as possible and most doctors appreciate well informed patients.
We hate the term 'mild' lupus here because it tends to trivialise very real suffering even if there is no organ involvement. It makes the patient feel they have no right to complain about what's bothering them because things could be much worse
I hope you will find the forum really helpful in every way and soon be feeling very much better
Bye for now
Clare
I have moved your last post to Newly Diagnosed because it mostly has to do with reporting symptoms to doctors, which can be a big problem especially when Newly Diagnosed.
Here is a link to it.
http://www.thelupussite.com/forum/showthread.php?t=71018
If I were in my " ain country" I would be happy to meet up with you- I'm a Geordie but live in soppy Surrey to be near daughter and family. However LupusUK has an active North East branch. Myself, I much prefer online support for all sorts of reasons mainly ease of access 24/7 and breadth of experiences to tap into. I have found that at real life support groups many people are only interested in talking about their problems and nobody related to mine but maybe I was unfortunate.
Many doctors actually recommend this site understanding that sharing problems is a major help in living well with lupus and learning how to adapt. But it's true that the web has to be used very sensibly. There is a lot of misleading outdated and plain wrong information out there. A good rule is to distrust anybody who's selling products and services.
Another problem is that usually the worst case scenarios are dealt with in detail. Many people live very well pretty normal lives with their lupus under control, even when it has sometimes been quite severe - they don't post on forums because they have no problems so even this forum isn't truly representative.
The right treatment at the right time can make all the difference to the future. There are some good lupus doctors in Newcastle though. I suppose you have been put on some medications already?
We owe it to ourselves to be as well informed as possible and most doctors appreciate well informed patients.
We hate the term 'mild' lupus here because it tends to trivialise very real suffering even if there is no organ involvement. It makes the patient feel they have no right to complain about what's bothering them because things could be much worse
I hope you will find the forum really helpful in every way and soon be feeling very much better
Bye for now
Clare
1 - 11 of 11 Posts
