I dont have a definate diagnosis yet but I have been having very swollen lymphnodes. the lymphnode tht is directly below my ear right next to the angle of my jaw is huge and very painful. Has anyone ever experienced this? Sorry for the bad typing they have me pretty loaded on steroids, antibiotics and many pain killers. I just woke up with it saturday. I have had others that have swollen but nothing to this degree. It is about the size of a wall nut and red and very heated. I have had fever with it as well along with alot of hair loss. It is just very strange. Anyone have any input on this?
Hi, there. For me, swollen lymph nodes in the neck region meant that at that time, I was having major hair loss, major skin symptoms on my face, and what I like to call "lupus dandruff", that accumulation of thick, white scales on the scalp. You must be having quite a flare if you are loaded on all those drugs and steroids and you still aren't getting rid of your symptoms and calming your immune system down. If I understand correctly, the lymph nodes become swollen near the areas where major immune fighting action is going on. Yeah, they are scary, big and hard and hot. Though in your rational mind you know what they are and why they are there, the little panic light is still flashing in the back of your mind, saying, why are they so big? why are they not leaving? Heck, before I went to the doctor, I was halfway to thinking they must be tumors of some sort. But, thankfully, none of that is true. I know you have a lot going on, but believe that they will go away as mysteriously as they appeared. They may not go away right away, even after your other symptoms are gone and you feel better, but they will go away. Good luck with your treatment.
Hi, Erin. Another scenario, one I experienced that was NOT related to lupus: dental trouble that was not obvious to the naked eye. Mine was an impacted wisdom tooth, with invisible infection way below the gum line.
Recent dental x-rays of that area would probably rule such a thing out, though.
Whatever is actually doing it, I hope you get it figured out quickly. Best wishes, from Vee
I know it isn't my wisdom tooth because I dont have them or my 12 year molars. They checked my ear for infection and nothing. I am feeling a bit better today. Not as much pain as yesterday thank goodness. It is still huge and kind of numb there now. Probably due to the fact it is so swollen. I have had them get big and sore before but this is by far the worst. I have bilateral prosthetic jaw joints and they even checked those to make sure that isnt where the problem was.
I have had alot of hair loss... For me any way. I am use to loosing alot when I take a shower but lately my hands have been covered. Hopefully now that the pain has subsided a bit I am on my way back.
Thank you for the postings. I will keep my fingers crossed that this is getting to the end of it. I knew I was going into a flair though.. Lots of blood in the urine and painful swollen joints and the fun gastro problems usually lead the way. I am just hoping this is the worst of it and I am on my way back down.
hi there.My first experience with my lymphnodes going nuts they tried to say I had Hodgkins but i didnt it was lupus and they did get as large as a golf ball around my collar bone people could see it. They always ache especially under my arms seem to the most . I try heat alot it soothes them . But wait for what the Dr has to say I hope it is good news .Jenny
Hey, thanks for all the info... They are going down now. Just a bit sore, but still swollen. They did check my jaw implants to make sure nothing there was causing the problem. I go back to the dr next week for more blood work. Like I said, I knew I was in a flair because of all of the other wild stuff going on but I truly feel better. So I must be coming out of it. The steroids seem to be doing the trick! Funny thing the steroids huh! They work well but man the prednisone tastes AWFUL! For such a small pill they pack a really bad taste eh? They tested my liver function...I dont really know why but they said it was below normal and that was suppose to be a good thing. Ever feel like you are just some wild experiement that people are just scratching their heads and saying...well that is strange....
In all of this time, and considering it can take years to diagnose this stuff, having only been 15 months I have had so many changes in my outlook. At first I was desperate to put a name to it. More so, when I feel so bad and someone asks "what is wrong with you?" I could say more than..."nuthin'" or " I dont know!" But now the diagnosis has become such a small thing. It is more about what the next day will bring. Will it be a good day? Can I make plans for the weekend? Will the next one get me down or can I plow on through it. I work full time and have 5 kids. I push and push because I feel I really have to. In the back of my mind I am afraid that if I stop and let it win, I will never get control back.
My new years resolution this year was so different, but one that for once I have kept. It was "I will accept my bad days for what they are, push as much as I can to do what I have today, rest when I can, and accept the days that I just have to stop and regroup" I think I spent the first year fighting this, wondering when it would just go away. Like the flu or a virus runs it's course and goes away. It took all this time to finally get past that desperation. One day, they will get all the data they need and finally be able to say, "ok Erin, this is what is causing all of this". Till then I just have to learn to accept what IS. A royal pain in the a**!
It has been a very interesting year. One I am sure many can identify with. I think the acceptance that for whatever reason, your life is now different and must be adjusted, is the hardest thing to do. I have never been much for change. But when it is something like your own body setting these limitations and you are completely helpless to correct it, it can be overwhelming. I am just really thankful that for now the neurological symptoms have gotten better. I have a very active family. My family is very active in sports and pageants and my inability to carry myself remotely gracefully was very disturbing. That part has eased up alot. Hopefully, I wont face that part again for awhile. If it does rear it's ugly head again I will just have to keep remembering my resolution.
I just wanted to thank the people that contribute to this site. It has helped. If nothing else as a place to vent. It also has been very informative and a comfort to know I am not alone. I know there are many that are much worse than me. But it is pretty relative. I mean lets face it, our pain to ourselves is very real. I am very thankful to have my job still. I missed 30 days of work last year and my company paid me for every one of them. That was above and beyond in my opinion. They said they felt I gave all I had and came in when they felt they wouldn't have made it. What was sad it I was just trying desperately to hold on to atleast that bit of normalsy in my life.
I think the comfort in all of this, is that I have absolutely no doubt that there are those that are reading this and completely identify with where I am right now. There are also those that have been here already for a while. And I am hoping that there are those that aren't here yet but will read this and know, you will get here too. I am not saying the road ahead will be easy, quite the opposite, just that I am ready to take the challenge with a different perspective. Hopefully, one that will make it just a little bit easier to deal with emotionally. Because lets face it, the one thing I did learn is that we have very little control over our bodies when they decide to turn on us. We have to adjust to it, because it is NOT going to adjust to us. The only thing you can do is adjust the attitude you deal with it.
Anyway, sorry to be so wordy... I just needed to get that off my chest. Everyone take care and I hope tomorrow is a better day than today for each and everyone of you!