Hi, guys. So I have Lupus and it causes my lymph nodes to swell. One of them is so bad that it bulges on my neck and people ask about it all day long. It is also painful on top of being really embarrassing. Does anyone have any suggestions to help with this? You all have been such a huge help, by the way. I really love having a group of people who understand and can help because you all have been through this. You really get it.
Hannah, I don't have lupus. But years ago I had a lymph node, below my chin at the top of my neck, go from the size of a pea to the size of a golf ball in less than a month. When they did surgery they found it ruptured inside with gangrene. I'm ok now, and it turned out one of our CTS got the same thing. But when people asked me what was wrong with my neck I told them it was a swollen gland. Try to just be honest and you'll probably find a lot of support. And you could start a new (old) fashion by wearing neck scarves... 😉
I don't have lupus but the lymph nodes in my neck have been enlarged the last year from dime size to 50 cent piece size. Around the same time I started getting a rash and hives not sure if they are related. Anyway my lymph nodes will hurt and if my neck is touched where they are the pain gets worse. The doctor doesn't have an answer and it seems unimportant to her.
Thanks guys. :-) I am going to see about going to one, Flappyslady81. But I have been breaking out a lot recently for no reason at all. Maybe it is related. If I find out I will let you know why, Shammagren.
No kidding. :-/ I get frustrated with doctors because they would much rather leave you misdiagnosed if they truly don't know then looking into it more. It's like I am not important to them and because my problems are kinda complicated and they don't fully understand so they just try belittling what I am feeling.
Just a thought. I say this without a lack of understanding. But could it be that people want to know about you. That they see this and they feel for so they ask out of concern. This is a poor example of a similar situation I am in. I having a hard time with it. Because of my health, I very rarely leave my house. If I do , maybe two times a month. That is the most. So one of my favorite things to do in my previous active life is go to church. But I usually feel up to going like every5 to 7 months. When I go, everybody comes us and tells me it is so good to see me and they have missed me. That sound nice to all of you probably. It is nice. But I feel like every time I go, I am a new person there. That I am starting relationships all over again. And that I wish they wouldn't say they missed me because I then feel like I failed God and that I am a heathen. But they were just trying to be kind and loving and like a person who feels like a failure for not accomplishing my responsibilities.
So I think sometimes it is just a matter on how we interpret situations. I was thinking that, and like I said I am not in your shoes so I don't know, but I thought it could be worse if they would just stare and maybe talk about it to their friends. I just imagine it being more personal and caring. Just I though. I hope I didn't. Sometimes I like to offer a different perspective even if I agree with the person. I do think there might be a good chance that this is possible. I hope you feel the best day that is possible for you to have. I hope this situation you are dealing with will improve. Best wishes !
Hannah, I completely agree and feel the same as you. I am going to see a new neurologist on Monday ( the third in 4 years). I am actually planning my strategy down now and figuring out what I'm gonna say to him as I want him to be the last neurologist I have to see...lol. I think I going to tell him that I'm trying to find a piece of the puzzle and hope he can help with it. And if he doesn't respond favorably, I'm going to ask him: " if I was his sister, wife, mom ( depending on his age), what would you recommend for them.
Thanks for the advice, Profiler. I agree. Church is where I get my motivation to keep going. I am a worship leader and even though it is hard to have the entergy sometimes but I love what I do and wouldn't trade it for the world.