im in college, recently diagnosed after a long fight with doctors and family who didn’t believe my pain. I feel alone.
Hi Isabel
YOu are definitely not alone. We don't look sick so some people think we are not sick. I think when I was first diagnosed my husband didn't think I was sick, but he does now. Maybe you could bring a family member or close friend with you and the DR could speak to them, I am 73 and my friends are all OLD They've been
":around for awhile". They know that when we go to dinner I seem fine its because I am sitting doing nothing. A lot of Lupies have the same issues that you are having with people not understanding. If your friends and family "get educated" they will think differently. This is the time you need friends and family Rest. do what you can when you can. Get the best medical care that you can find. Take care.
Hi Isabel,
I know how you feel. If you need a friend, I'm here.
In October, I started to have the symptoms of Lupus. I started to have pain that I would rate beyond the level of 10. When I missed taking Advils for 30 minutes, I felt that my whole body gave up on me. I felt that I wanted to literally crash. My head hurt and I felt so dizzy. It hurt to pick up my bottle of water. It hurt to open a bottle. My joints and muscles hurt the most. My mother tried to massage my arms and legs. I screamed because they hurt too much to be touched. I kept telling my parents that something was not right about my body. My parents didn't believe me. They thought that I needed to be more active by exercising more. I then decided to see my family doctor. My doctor thought I was having a mono because I had the symptoms that were similar to mono. He ordered blood tests and throat culture. The results came back as negative. He couldn't figure out what was wrong with me at all. I found myself coming to see him once a week. I even told my doctor that advils were no longer effective because my pain went beyond. I told my doctor that I really needed his help to find out the cause because I could not hang in there any longer. Anyway, I was hospitalized for a very bad allergic reaction: hives, fever of 100.7*+, chest pain to Doxycycline. During my hospital stay, doctors ordered many blood tests (at least 30 blood tests) to find out the cause. They were very determined. When they finally found the cause, they sent a rheumatologist to speak with me. She told me that I have Lupus. From the blood test results, they found 3 positive in ANA, DNA, and SSA. So I definitely have Lupus with Sjogren Syndrome. At first,it was very hard for me to accept the bad news because I didn't want to go through pain. The pain will not go away and it will stay with me for the rest of my life. Now I've learned to cope with the disease. I've learned to educate myself. That was how I found this site and I decided to join because I felt the need for support especially from people who have Lupus. I've learned to treat myself better. I've gained a different perspective about life and how I should live my life until I will be six feet under.
I hope you have a good support system especially from your family and friends. I hope that you will continue to hang in there when the flares pop in. Try to eat a lot of anti-inflammatory foods. Get plenty of rest when you feel tired. I wish you more ups than downs in your journey with Lupus.
I wasn’t diagnosed with lupus until I nyz owas really really sick. But I had a few lupus incidents pf lupus on college, with such swollen glads it hurt to lie down on my side. They tested me for mono a lot, but it wasn’t until my 30’s that I got longer, more complicated flares. It took 8 years to get a lupus diagnosis because the docs said my symptoms weren’t big enough. My platelets weren’t low enough, the ANA wasn’t positive enough, my lupus pleurisy was treated with antibiotics instead of prednisone etc. it was horrible , and everyone I knew wanted to give me advice sbout diet exercise, whatever they though would make me better. So it was a huge relief to get a diagnosis, and some meds. What I would say to help you is try to eat and sleep well. Try tl avoid the sun, or getting to tired. It’s the pits, but you are going to have to be more mature about your health issues than the other kids are, because you have a lot more issues on your plate than they do. You will gond thst family members often don’t seem supportive, I think it’s too painful for them. People with lupus have a lot of pain, but it doesn’t show on the outside, and most of us put a good face on for other people rather than moan and groan in public. It’s hard to explain that you felt fine yesterday, but today you are exhausted and in pain. It’s hard for people to take us seriously when we have to avoid the sun. MI tell people I’m allergic to the sun and it makes me run a fever for days, but it just sounds weird to them when they don’thave that problem. Even if they intellectually understand, it does’t compute to them. I am now sick enough that most of my friends have fibro or something, because They understand and are willing to be patient while I walk really slowly, sit in the shade etc. sorry I sound so discouraging. But overall, you are well enough to have a social life and attend classes, I assume, and you willhave friends who get it enough. You always have this spite for understanding people who really do fully understand. I wish there were lupus support groups all over where we could meet other lupus people where we live. Read Louters’ rerport- she explains lupus really well. And she is in college too.
I’m singing the ,“No one understands my Lupus,” Blues, too. The truth is: I’m well educated and graduated from major universities with high honors, I make a better than average living, I look younger than my age (partially due to constant application of sunscreen and cosmetic intervention), my teeth are very white (veneers), I’m thin and I have a happy marriage and 4 children. As a result I get the reaction, "You can’t have any problems, you have a “perfect life.” But, these people don’t see what’s going on body. I also have active Lupus, hypothyroidism, degenerative arthritis of my neck and spine, Sjogren syndrome and I’ve had brain surgery to remove a benign pituitary tumor. I experience constant debilitating fatigue, headaches and joint pain. Even family members don’t understand my situation. I used to be able to will myself to complete physical work, travel and social situations, but I’m finding that more difficult to pull off. Thank God the symptoms hit me hardest just as I was ready to retire last year! People say: “excercise more,” “why are you so down in the dumps, your life is perfect?” and, “why can’t you (insert activity here) with us? You look healthy…you must be avoiding us.” Etc, etc, etc. So, long story, but I absolutely understand your situation. I’m thankful to have access to this site to connect with others who find themselves in the same lonely Lupus journey.
I hear your stories and I understand how hard it is to get other people (family/friends) to really hear you. After whining to my husband about this diesease, for the 1000th time, he accidentally turned to me and said, "I understand". I think my head spun around three times, flames shot out of my nostrils and my eyes turned red! He knew immediately that was so not the thing to say! We both laugh about it now, but he is a work in progress, just as I am. I have a bumper sticker that says, " I have Lupus, but it doesn't have me". It sounds good, but is hard to prove out most of the time. My faith and my grandchildren are what help keep me going. I find that if I stop, sometimes I can't restart. Just moving forward through each day is how I cope. Sometimes it takes a 3 hr. nap to bring me back, sometimes listening to music can help. There's never any relief from the constant joint/tendonititis pain, just moving into the next moment and trying to laugh and smile is how I cope. I have great friends who get it and some that don't. Patience with them and this disease is what it takes.
You are not alone! Congratulations on finally getting diagnosed. It’s not great news but you’re out of limbo. The “thing” has a name! And you found a good bunch of people here who will answer any question you might have.
And know that it can get better. Don’t be afraid to hope! I’ve had great success with alternative medicine and diet change. I went from congestive heart failure, kidney failure (30% function), anemia, neuropathy, etcetera, and on 9 drugs plus chemo and transfusions to normal kidneys and heart, not anemic, and only on 2 drugs: one for mood, one for sleep. And all my hair grew back. I wear it ridiculously long now after having lost it from lupus and prednisone 
Things can improve! Xox
Thanks so much everyone! It’s nice to read others experiences with lupus. My biggest struggle is using a cane and only being in college. I feel like an outsider. When I meet new people I feel like they only want to know what’s wrong then leave. It’s also so hard getting to class and when I make it brainfog takes over so much that I feel like college just isn’t right for me but I can’t quit. I don’t have a support system at all and I realized to make it through the next four years I need to talk to people like me. So thank you for all the wonderful comments
I totally understand. I’m going thru a rough time myself (my worst flare up yet) and its so easy to be discouraged. I’m 25 newly engaged and just recently got my lupus diagnosis. Even when everything in my personal life is going well I feel like no one understands and that I’m just constantly complaining about my pain that others can’t see and don’t understand, I get it though you can’t understand what it’s like unless you go thru it. That’s why I joined this site. I wanna know I’m not alone in this. You aren’t either. I don’t think things will ever be the same… I’m in this period where I feel like I’m mourning my old life, wishing I hadn’t taken my health for granted when I had it. But I know when I get negative like this it doesn’t help. So I’m gona try and choose to be brave and hope that better days are ahead.
I’m here if you need a friend. Much love.
I'm 44 and just diagnosed in June with fibromyalgia and in November with lupus. I am lucky that my symptoms are under control and that my husband went to the doctor with me, so he knows it's real. This he been a great forum for me. We complain, get advice, and cheer each other on!
Hello sweetheart, I was once right where you were! No shock to myself I’m still here fighting. I went to my ob for my annual. He came back into the room and I quote him" you have an infection in your body. It is not something I can treat, please see your pcp. I did, asma is what she said I had. After months of this and having bad joint pains and never getting better from a car accident back in 2009. This was 2010. For 6 months she did nothing but waste my time and money. Finally, on a follow up I seen another dr. He was shocked of my pain. Started to test, nothing no ra gout no nothing. Next was x rays. Nothing, next finally he ran more tests. I received a call I tested positive in 7 areas he couldn’t read me results. I had to call the ra and make an apt. I waited almost 7 full weeks to get in. At this apt I was told I had lupus get blood work and come back in 10 days. I did. Was told lupus was not to active here take this and be on my way.
I fought it, here I sit now after fighting many different doctors and nurses. I’ve been diagnosed with lupus, fibromyalgia, chronic pain, chronic joint pain and recently a hereditary joint condition after being told my family history, no body had or has that condition. I’ve branched out to a hospital that’s 2 hours away. I am honestly drained and fight to make the drive, butt I’m so glad I did. Upon seeing a new dr, they did an mri then mri with dye on my hip. I have a Crack in my joint. Which after 5 years in pain it’s helping me cope with pain just knowing yes, there is a problem and no its not just in my head.
I was forced to stop school and give up almost every part of my life. Now, I’m fighting to get back any of my life I had. I am 27 and a married mom of 1. Don’t let these people get to you. Yes, it is in your head how else would you know you hurt if it wasn’t in your head. Brain controls your body so yes it’s in your head. Dr hate when you tell them that. Remember this is your body your illness and only you can fight for yourself. These dr just want your money unless you get one of the few good ones who really care. Don’t be scared to push back or ask for more or less. Tell your Dr what you need from them and one thing I’ve learned tell them all. Don’t keep things from them that could help them figure things out. All things are important even if we don’t think so. Take control of your life or it will control you. It’s easier to keep fighting then it is to give up and then start again. Keep fighting you will find someone who will listen and can help you. Never give up and never rethink yourself. Know your body and keep track of your pain and what works to feel better and what makes it worse. You have to basically become your own dr and take control of your life and your illness. Best of luck to you sweetie. You’re never alone! ! You always have people who understand and honestly can say they know your pain.
I understand. Don’t give up the fight, the more conviction in our struggle, will allow others to take us seriously…I struggle constantly, but, have to remain focused for strength.
you are never alone, its hard for those that don't have this to understand what its like it sucks. I hate it when I hear someone say " oh you look so good", my oldest daughter suggested I wear a t-shirt that says I'm a lot sicker than I look, because people can't see the pain, the inflamation, and all the other crap thats going on on the inside they think it doesn't exist, all you can do is try to educate them, but most importantly take care of yourself first.
Iknow it is frustrating when you can’t even get your family to understand or realize how serious this really outs! please don’t concentrate on what they say or think Wright now just use what energy you have to take care of you and fight for you! I’m truly sorry you have to do this without there support but you do have ours. I know its hard especially alone I seem and have been there myself. the hardest times its when I’m sick and I have my son to care for matter how I feel because I just don’t have anyone to help at all. I am so sorry you feel so alone but you have came to the right place! We truly understand and care about you and everyone who suffers from this disease! please stay strong! We are here whenever you need us day or night.
I don't even think my doctor believes me half the time...like oh yeah that's not happening. Believe me....when I'm at work and my whole hand goes numb - something's up. Then the whole family is like well if you would just lose some weight.
I HAVE lost weight. I still felt like this. It's not because I'm overweight. really, someone believe me.
Add me on facebook if you'd like - Rebecca Horan. my pic is me with a little white doggie.
Be well!!
Rebecca
Haha yea the doctors dont, here for u know what ur going through diagnosed at 14. Curcumin really helps without side effects