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MzKellyjane
03-18-2013, 01:21 AM
I am a newly diagnosed Lupus(SLE) patient and I'm starting to have frustration trying to cope with the symptoms that are tagging along with this. It's not as terrible as it was in the beginning when the pain was at its highest, but now that the rest of the symptoms are starting to spring up its making me feel really angry and upset inside. A few days ago i was suffering from swollen and puffy fingers that made it hard for me to do things i enjoy like writing and typing on the computer and playing video games. I was able to to cope with it at a normal mood because it honestly wasn't that painful, it was just frustrating. Now i'm starting to feel an extreme stiffness in both my legs and also a heavy weight in the them whenever i try to walk and it's really really annoying. I just wanted to do this little rant because this is a place where people will understand the frustration that i'm going through right now. I'm trying to find ways to calm myself down by listening to music and it's working a little bit, but the emotions are still there. it's just really hard.

cma
03-18-2013, 02:01 AM
hey there!! hugs from me to you. im sorry you are feeling bad :(. i used to suffer from swollen and puffy fingers and joints. i dont get them as often though because im on the proper meds. i hope you start to feel better and im here if you ever want to talk. i have a facebook if you want to add me just private message me :)

ButterflyRN
03-18-2013, 02:24 AM
MzKellyJane welcome to the club! Unfortunately lupus and frustration go hand and hand. Case and point as I've been awake for 3.5 hours in the middle of the night because the lupus is causing me pain in my back muscles that make laying down unbearable! You're gonna cry, scream and want to give up sometimes, but stay strong . You are bigger and stronger than it, but it will try to deceive you! Lupus is not for the weak! Heat has always helped my fingers . Mine frequently swell and I get joint pain in them as well. I can't take anti-inflammatories except in a extreme need because the lupus has caused me kidney damage(class 4-5 lupus nephritis) so Tylenol 8 hour and heat help me the most. I hope you feel better soon and feel free to vent any time! You are in good company!

MzKellyjane
03-18-2013, 08:24 AM
MzKellyJane welcome to the club! Unfortunately lupus and frustration go hand and hand. Case and point as I've been awake for 3.5 hours in the middle of the night because the lupus is causing me pain in my back muscles that make laying down unbearable! You're gonna cry, scream and want to give up sometimes, but stay strong . You are bigger and stronger than it, but it will try to deceive you! Lupus is not for the weak! Heat has always helped my fingers . Mine frequently swell and I get joint pain in them as well. I can't take anti-inflammatories except in a extreme need because the lupus has caused me kidney damage(class 4-5 lupus nephritis) so Tylenol 8 hour and heat help me the most. I hope you feel better soon and feel free to vent any time! You are in good company!

yeah the muscle pain kept me up last night too until 2:30 because i was scared it was going to get worst and i didn't want to sleep through it. i think i'm going to try heat application now since so many lupus patients say it has worked for them. i'm sorry to hear about your kidney damage, my sister also has Lupus and it damaged her kidneys pretty bad too. thanks so much for your support.

MzKellyjane
03-18-2013, 08:25 AM
hey there!! hugs from me to you. im sorry you are feeling bad :(. i used to suffer from swollen and puffy fingers and joints. i dont get them as often though because im on the proper meds. i hope you start to feel better and im here if you ever want to talk. i have a facebook if you want to add me just private message me :)

yeah well you know it's just one of those bad days with this and i'm new to this disease so i guess it was inevitable. hopefully i will have a better day soon because that frustration was just unreal you know? and thanks!

lucky7
03-18-2013, 01:48 PM
Swollen joints x, nerve damage x (the "x" is supposed to be a check mark LOL), cold hands and toes x, kidney damage x, heart issues x, tremors x, achey joints x, nodules throughout my body x.................. I wont bore you with all the rest cuz I could go on forever! You are WELL UNDERSTOOD and you have every right to feel as you do. So many ups and downs, especially in the beginning. Ive been sick for almost 7 yrs now BUT, my symptoms got worse and worse about 2-3 yrs in, then it really started turning my world upside down. Its an adjustment to a new "normal". You WILL be OK and you will find ways to "adjust". For example, new hobbies and different ways of doing things you used to do........... You WILL have BETTER days and remember, YOU ARE LOVED HERE at YOUR WHL FAMILY! All for one and one for all!!!!!!!! We are here to HELP one another!!! WOO HOO to THAT!!!!

debbie-b
03-19-2013, 09:12 AM
As everyone else said, we are all in the same crummy boat. You can't jump off, you can just learn to go with the flow.
It is very hard in the beginning, but you do learn how to deal with it.
You will have times where you feel pretty lousy, but you will also have times, where you feel better and those are the days you long for.
Now that you have found us, you might feel a little better, because now you know, that there are people who understand, what you are going through.
Welcome to WHL.

Debbie

MzKellyjane
03-20-2013, 10:14 AM
Swollen joints x, nerve damage x (the "x" is supposed to be a check mark LOL), cold hands and toes x, kidney damage x, heart issues x, tremors x, achey joints x, nodules throughout my body x.................. I wont bore you with all the rest cuz I could go on forever! You are WELL UNDERSTOOD and you have every right to feel as you do. So many ups and downs, especially in the beginning. Ive been sick for almost 7 yrs now BUT, my symptoms got worse and worse about 2-3 yrs in, then it really started turning my world upside down. Its an adjustment to a new "normal". You WILL be OK and you will find ways to "adjust". For example, new hobbies and different ways of doing things you used to do........... You WILL have BETTER days and remember, YOU ARE LOVED HERE at YOUR WHL FAMILY! All for one and one for all!!!!!!!! We are here to HELP one another!!! WOO HOO to THAT!!!!

thank you so much for your support, this is all so new to me so I feel really lost and knowing that you guys are all here to support me and so we can support eachother really helps a lot, because wow this is getting hard now. I didn't realize how real this could get and how fast it was all happening. Anyways, thank you so much for your kind words and I hope you'll have better days for yourself as well. I'm just so glad to have all your support. Thank you so much. <3

MzKellyjane
03-20-2013, 10:19 AM
As everyone else said, we are all in the same crummy boat. You can't jump off, you can just learn to go with the flow.
It is very hard in the beginning, but you do learn how to deal with it.
You will have times where you feel pretty lousy, but you will also have times, where you feel better and those are the days you long for.
Now that you have found us, you might feel a little better, because now you know, that there are people who understand, what you are going through.
Welcome to WHL.

Debbie

yeah.. this is a learning process for me and it's all so new so i suppose i'm just overwhelmed, but that's normal to feel overwhelmed i guess. I'm trying new strategies to keep myself from flaring and feeling that pain again, so hopefully it will work out. I know there will always be days that are bad, and now i relish the fact when the good days do actually come around. Thanks you guys are amazing, I'm really glad to have found this website, because you guys do understand what I'm going through.
Thanks so much xoxoxoxo

Kelly

lucky7
03-21-2013, 10:18 AM
I'm so GLAD you are paying attention to WHAT can flare you. That IS SO IMPORTANT so you can AVOID any unecessary inflammation. Trial and error is how I learned, and a few trips in and out of the hospital! EWWY! It IS nice to have friends that are going through the same things and I AM SO HAPPY you did find us! MY WHL FAMILY has helped me through ALOT during this rollercoaster of a ride! I have gone MIA at times for a bit due to how bad my body can get BUT it's like I never left when I come back! WE DO UNDERSTAND in SO MANY WAYS and WE WILL HELP you through it! WOOO HOOO to WHL!!!!