I’ve been having so many problems and they are all getting on top of me and I know I’m getting depressed because I can’t stop crying 
I have tingling that keeps getting dismissed by doctors, an enlarged spleen that needs confirming on Thursday, fuzzy dizzy head, costochondritis which I found out yesterday because I ended up in a&e, joint pain, nausea, a weird gagging sensation most of the time like something is stuck way down in my throat(anyone had this??) and my lymph nodes in my neck have been up for ages and I’m worrying about lymphoma because of my spleen now!! I hate feeling so poorly all the time I just want to be a normal young person who can go out and do things!! I can’t have a relationship either because no one can seem to handle me when I’m ill so I’m all alone!! I just feel like I can’t get through this…
Cayleigh, I do not have the issues that you do but I do have others so I understand your stress with having too much going wrong for you. I hope that a young person will respond to you today and give you some insight. Being young and dealing with your issues is horrid, I am sure. I had started having issues when I was in my 20's but they weren't long lasting so I was able to do what I wanted to do most of the time. I pray that the doctors find you help and you can have some semblance of a normal life very soon.
I understand how you are feeling... it can be overwhelming... and stress and worry can make physical symptoms much worse. I , too, wonder when I can be a young person again and enjoy life. i have lost a lot of friends over the years but come to realize , they weren't true friends.
i could cry every day , some days, but instead try to meditate and calm my nervous system. of course once in a while a good cry is very cleansing and needed. I am sending you a long distance hug. i know you feel alone but know that there are so many people that struggle like you and we do care and you are not alone. i will keep you in my thoughts today... it's been a rough year for me
so i can relate with you feelings. i have never had any of your symptoms other than the swollen lymph glands. Doctors have always dismissed this but my massage therapist says its just my lymph system pushing out toxins. I like that rationale :) Try to do something nice and relaxing today if you can. Lavender oil does wonders- a few dabs behind both ears. If you haven't tried meditation , give it a shot. Its really just about breathing and letting go of constant thoughts. also try to remember that stress and worry can make physical pain worse. another thought would be a therapist you could talk with. I have one that supports me when I need help and she understands chronic illness because she suffers herself. thinking of you... take care....
Dear Cayleigh,
I understand some of your symptoms and I do understand your worry and fears. I too am surprised that the tingling is being dismissed. But if the doc you currently see isn't offering anything to help you better understand what's going on, I'd press on until you found one. You are worth it. I remember myself prior to diagnosis and being terrified and depressed. But once I began treatment I did see some improvement. Right now, take care of you. And as for being alone, you're not any more. You can come here to vent, rage, cry and share. If I could offer anything to help you feel better emotionally, I'd have to agree with Christy- do something for yourself. It does help to be able to focus on something you can still do. I'm so sorry you are dealing with so many scary emotions and frustration. I honestly think many docs don't know enough so they 'guesstimate'. But meanwhile, keep track of your symptoms (I had to write mine down my 'fog' was so bad) and your feelings. It may help to look back and see your progress if you find hobbies or other things that help you mentally or physically. Vent here if you need to. We 'get it'. Just know you're in my prayers. I pray for answers for you, comfort and improvements as soon as possible. There are sections on this site that may help if you haven't used them already: 'Recommend a Doctor', 'Discussions', 'Understanding Lupus'. It's been a huge help to me. I just pray you get what you need to feel better soon.
Take Care,
Vicky
Hi Cayleigh
I don’t get all your symptoms but I do get the fuzzy dizzy head when I’m flared. Plus feeling sick with aching neck joint pain and sometimes with a headache…it’s so hard when you’re alone. But I try and take one day at a time and find something to be happy about most days. It doesn’t always work but usually it helps. Jen
Hi Cayleigh,
Sometimes, having so many medical problems does get overwhelming and it feels like no one understands. I have some of the same problems that you do. Here are some things that you can do to put yourself more in charge:
1. See a neurologist and have some tests done concerning the tingling. He can also prescribing something that turn down the level.
2. I also have an enlarged spleen. I also have pain from it. I talked to my pulmonalogist, oncologist and and primary doctor about i. The pain comes and goes and when it comes, it really hurt to lit on the side that the spleen is. If you ever have pain that moves from it, go directly to the ER! That pain means that it is rupturing. Otherwise. it is the horrible watch and wait scene.
3. I have swollen lymph nodes in my neck most ot the time. I had a special operation They took out 8 of my lymph nodes and biopsied them. I was relieved to find out that it wasn't lymphoma. It wqs sarcoidosis instead. That can be pretty rough too but I really think that sarcoidosis is the better of the two. So there other things that it could be.
Cayleigh,
I understand how all these things pile up on you and having to make different doctor appointments. Tests, explain everything over & over. Friends ask me to go out! Get out & have some FUN! They don’t understand & I don’t want to say why I can’t as they would take it as, boy she sure has a lot of medical problems. So I finally told each friend to google Lupus SLE & let the sites explain my disease to them as I’m too tired to!
I didn’t hear from some friends again, but a couple did take the time to read & understand my limitations. So they come to my place & we play cards or watch a movie. They always call first to make sure I’m not having a “lupus” day where I’m in bed. It’s depressing to have to deal with all of this when u have family support but dealing alone is truly tough. That is why sites, blogs, etc. like this are a God send! You aren’t alone & you won’t be judged.
Feeling so bad all the time weighs on a person. Just know that if you keep a glimmer of hope that you’ll be able to get a handle on all this sooner or later you’ll be able to keep pushing forward. You are in my prayers! Hang in there, you are not this illness, you are Cayleigh who happens to have some medical stuff going on but you are working hard to deal with it. Everyone on here understands. 
Cayleigh,
I'm so sorry you're having such a hard time. I have had the tingling that continued to be dismissed. It's unbelievably frustrating. Have you had a nerve conduction study done or an EMG test? My neurologist told me that when those come back normal, but patients have numbness or tingling, it's usually due to a superficial nerve problem and isn't picked up by those tests. There are medications out there for that tingling though. The good news is that it may just go away on its own, even without medication.
I pray that everything resolves itself quickly and that your spleen and lymph nodes go back to normal size.
You CAN get through this and we're all here to help you in the process. I'm going through that "want to be a normal young person" feeling right now so we can tackle it together. Just know that: 1. you're not alone, 2. we're all here for you, 3. you will develop a new "normal", 4. there are answers for the way you're feeling, you just have to push for them at times.
Sending many hugs your way!
I can so relate. I didn’t think anyone could handle my illness because when it’s bad it’s bad and even when it’s good it’s too much for people, stay strong. Even when your body tells you not too, when the worlds crashing around you. I’ve been there. Not long ago. I’m 22 and within a year my entire life has been ripped from underneath me and its a long process to get it back. However, a process, means improvement. I was so depressed for so long, pushed everyone away until I was by myself and couldn’t move with out assistance. Lupus isn’t fun, it’s a battle and I promise you can win. Everything I do is 10 times harder than those around me and as crazy as it sounds my sense of accomplishment for completing things as well or if not better. I promise everything gets better. I’ve been there, and nothing helps, but it gets better!
I call this "mourning my health". We do have a lot on our plate, and trust me, we all understand. Never give up, tomorrow's a few hours away, and it'll be another day. If you look carefully, each day brings trials but it also brings blessings unique for that day.
My mother always said that our lives sometimes seem like a puzzle; the pieces don't seem to make much sense and we may lose our patience trying to make sense of it. Yet, God seems to place a different piece every day which may help us understand the Divine purpose for our lives.
Hello!, I want to let you know that everything will be okay!! Lupus has many different moments to cause us ,Living with Lupus , to feel as though there is no way out! But only if you relax for a moment and try to calm down ,Lupus won’t play such a big part in every moment -in other words , Relax!!! Yes , it will be very hard to do this at times , staying in control to the best of your ability is what Lupus fight us for, it want to control our every move. For 3years now I’ve been in control (sometimes it may win) , but most the time am putting my guard up and fighting Lupus with rest. I had these things to happen during at the beginning of this Lupus stuff , getting mad , upset, crying for no reason, and everything that you can think of, Lupus had me sooooooooo much tension on me , I did not not want to do nothing-I mean nothing. I battled for months the first year until one day my doctor said to me ,If you want to die it is totally up to you, but you can beat this if you want to live! Of course never personally knowing anyone with Lupus , I did not know what I could or could not do. So , I looked myself in the mirror and said to myself ,“Do you want to live??”. Strangely, I answered back with a big Yes!! And from that day until this day I have been Living with Luputs and enjoying my life and every moment to the fullest , and so can YOU, smile . BELEIVE me it is hard at times, but you have something (Lupus),that want to make you loose all control , Don’t!! Giving up is not on any list of a fighter , and I know you have things , people, to live for not forgetting the main factor being yourself . It does not matter if you have a relationship at the moment that will come in time focus on you and your needs first! Yeah put yourself on the list being number one, and when people around you see this new attitude, things will change for the best . The old saying , you got to help yourself before someone help you!, so it is up to you to show that this moment is only for a moment, take control. People really don’t know what they can and can’t do until you show them. BELEIVE me , they will come around when they see that you want their help , you just have to show them !! So grab a hold of yourself and make Lupus feel left out , turn the table…Beverly L.
Cayliegh, I just thought of something too. My foster daughter that I had as an infant, has lupus and she is doing well. She was diagnosed with SLE in her teens. She is an artist and made it thru I don't know how many years of of college....I think at least 6 and she now lives in L.A. She has a wonderful boyfriend now and is succeeding. I am telling you all this because she has had to endure a lot too. Not only does she paint and have shows but she is a nanny on the side part time and makes these wonderful garden gloves and cooking mitts too and sells them on Etsy. Go to Etsy and type in katgallery and there are her gloves and her picture. I hope this helps you to look forward to better days. Beverly gave wonderful advice as she always does Know that there are a lot of us rooting for you and have faith that you can have better days. Hugs!!
Still feeling low I have no idea what this gagging sensation is all about?? I keep getting it when I talk sometimes and when I need to yawn it makes me gag and when I’m just sat there it feels like something is in my throat… I’ve got my ultrasound tomorrow on my abdomen to check my spleen… My glands are up in my neck and now my spleens enlarged I’m terrified it might be hodgekins lymphoma!!
Oh Honey-----------I really know how u feel. I came down with Lupus later in life, so before this happened, I did do a lot.
I feel so bad 4 u. I want to tell u it will get better & I promise-----------there is someone out there who will love u for all the good inside of u & not even see the Lupus....
Kisses & hugs to u, my friend------
Peg
Hi, my doctor says, when I eat to much fried foods during the week that my acid reflex would cause this to happen, I started taking pesto bismol , it worked for while . Then it just went away after I stopped eating fried foods so much through the week. But of course get it checked out...hope you feel better soon...Beverly L. cayleigh said:
Still feeling low :( :( I have no idea what this gagging sensation is all about?? I keep getting it when I talk sometimes and when I need to yawn it makes me gag and when I'm just sat there it feels like something is in my throat... I've got my ultrasound tomorrow on my abdomen to check my spleen... My glands are up in my neck and now my spleens enlarged I'm terrified it might be hodgekins lymphoma!! :( :(
Ok update… I had my ultrasound today and what they thought was my enlarged spleen is actually an extra floating rib so I’m actually really relieved not too worried about lymphoma anymore and I’ve brightened up with all your nice comments I feel much happier… Still not quite there because I’ve got this gagging thing to deal with but I’m sure it will be sorted soon… Ill try not eating too much acidic things and see if that helps it and if it does ill know its acid reflux… Thanks for all your kind comments I’m sure ill get there eventually
So glad your ultrasound came back with happy results!
Cayleigh,
You CAN get through this. Like everything else in life this will pass. There is not a single one of us that hasn't been in your shoes. Those days when we just feel like we can't get through the day. If you feel like you might hurt yourself, you need to contact someone immediately. It's not a sign of weakness, but a sign of strength. You are admitting that you may need help and it's entirely possible that your lupus is affecting your CNS causing some of the issues with your mental state. It's more common than you may think.
I think you may need to call your doc for a referral to a therapist or if this is not covered by your insurance, every state has a free clinic. I know that this may not be what you want to hear, but I would rather you get some help now so that you can heal physically soon and get as much of that life back that you want.
Lots of love and hugs,
DeAnne