So I am 24 and waiting to go to my allergist to see if he can help. I was curious if anyone here felt crazy awaiting diagnosis? I have been tested for gluten intolerance and thyroid problems. I’ve seen a phys therapist for my back. I have 5-8 cankor sores at a time and I am always so tired. I feel like I’m coming down with the flu everyday and I find myself telling my boyfriend I’m going to read in bed at 730 just so I can go to bed and not look crazy. I feel like my back is a brick and it hurts allllll the time. I’ve started getting this itch ya rash on my arms and chest after being outside and it feels like I got into fiberglass. I have been everywhere and on everything for my migraines and I try so hard not to show I don’t feel good because I dot want to be labeled a hypochondriac. I hide at work and sit for hours just cause I can’t do anymore. I clean an elevator and I’m exhausted. But I am scared to ask the dr to test me. I don’t want them to think I’m crazy. How much of this is real and how much is in my head? I am a tough girl I’ve always been told to push through and deal with it so In front of others I do. If I work hard at work I can’t do anything at night but sit. I find myself wondering how I will ever have kids because I can barely handle cleaning the house after work! Please did anyone feel like me while they were waiting to be diagnosed? I just want to cry sometimes. I remember how fast paced I used to be. I used to work two full time jobs and go to school I used to have so much energy and slowly (in the last year) it’s just gone…I feel like I’m weak minded and crazy. Sept 16 is the golden date and It couldn’t come sooner for me
Karon, first, you are not alone, or crazy! For many of us, diagnosis tok years if not decades. Usually it is a rheumatologist who diagnoses lupus, but have heard of other sharp doctors from many specialties catching it too. I'm very glad your appointment is soon.
Be the best person you can, that is all anyone can ask of you. Whether you wind up with a lupus diagnosis or something else, chronic illness means making changes, and learning to accept yourself for who you are right now. When you hide symptoms, you are cutting yourself off from people around you who love you, and can be a great support network.
Take it one step at a time. and be proactive about getting help for symptoms that are making life too difficult. Everyone faces challenges of some kind or another. This is simply the hand you got dealt. Play it well. I wish you the best as you go through this process. Let us know how it al turns out.
I am right with ya. I just started the diagnostic process too, and I'm only 27. It feels like you're way old before your time, and being tired is just not ok... like you're not a productive member of society... I wish I could tell ya how to feel better about it, or if/when it gets better, but I just don't know right now. Going on 6weeks of not being able to walk, or if I can that day, I need a cane. Not the look I love going for, and all the "awwww" looks you get with a cane/hobbling around at this age is, well, embarrassing, frustrating, aggitating, etc. I know I need help, but my pride has yet to concede completely.... So ya, good luck in your adventures as well, and you're not completely alone. :)
I too went for years with out anyone knowing. I have ibs and nothing showed. I have blood tests every 6 months nothing when I started swelling while going to see my dad and he smokes weighing in at 188 pounds I gained 230 pounds in 8 days. my family doctor told me to loose the weight and exercise. I said it is kind of hard when it hurts to walk. trusting my gut, I went to another doctor, one that did not know me, he thought I was having a blood clot going to my lungs because my chest hurt badly.. 11 hours later at the er they sent me home telling me to stop eating out, I don't eat out at all. and to watch the salt, another thing I don't do. I go home. my husband and I got into a fight and he said its all in your head. fast forward the er doctor tells me 2 days later they want me to come for a stress test. I go, im fit as a marathon runner, they are scratching there heads. all took blood work, and I was being seen by a ibs clinical research doctor during all of tis as well. they the heart doctor sent me to the arthritis doctor, my husband again got mad and I had a Monday appointment I called Saturday and canceled again him telling me its all in your head. but come Monday I made my mind up that I was just going to go, and not tell him and if they did find something then okay, but if not he would never know, beside he really didn't know how I was feeling. so I call Monday and get an appointment for Thursday, I go he takes a pee sample and blood sample and tells me he thinks I have lupus, that I have all the symptoms, but he want to run the test and make sure, now 3 test from 3 different doctors, all new doctors, still my husband knew nothing, I go home and that evening I tell him, that I went to the doctor, I show him the note from the doctor, and this look comes over his face, then I tell him that I had a pee test and blood work and supposed to go back in a few days he says well you neede to change the appointment I need to go to make sure. the doctor however is in another state during the time my husband is free, but he still goes with me to the doctor, the doctor tells him this is what it is and this is what you need to do. now my husband dis giving me advise, do this do that, don't do this. the reason I say my story is this you are not crazy, as my husband thought I was, keep pushing to find an answer, you only have one body, one life, and one time around in it, so make the most of it what ever card you are dealt.
I’m going through the same thing at the moment and believe me, you’re not the only one!
It’s driving me crazy at the moment, feeling so crap all the time, but the diagnosis is taking forever because of other health problems that my symptoms can be blamed on.
I work for three hours a day usually, and even then I have to have a nap before work so i have the energy to get through it.
I’ve currently got my 5th severe kidney infection in the space of 9 months which means when info get diognosed, I’m probably going to find that my kidneys have been affected. I’m facing The possibility of having to leave my job which is going to devastate me, and none of my family, although supportive, really understand.
Despite all the problems I have at the moment, when I’m having a down moment, I try to focus on the positives - I’m alive, and my condition isn’t terminal, I have the support of my family, and the best partner in the world, I have a home and food and water and I know, one way or another, I won’t let this ruin my life.
It’s tough, but you’ve just got to keep fighting for your dipgnosis and treatment whatever it takes, then you can start to understand your self a better and get the treatment you need.
I hope you feel a little better soon, if you ever need to talk, feel free to message me and keep posting on the forums!
You are not weak or crazy. I pushed thru for many years and now it is taking its toll on me, Talk with you boyfriend and take care of yourself now. Eat right exercise and take your meds. I actually felt better while pregnant with my 2nd child. I had long periods of remission. Talk with your boss about your work and see if maybe you can go par time or find another job that is not so hard. Waiting for a diagnoses can be hard take a breath and take care of yourself. I will be thinking of you please let us know how things go.
For many years prior to being diagnosed, I felt crazy. My mother had Alzheimer's and my grandmother WAS crazy. My maternal aunt died of Lupus Nephritis in 1975 and I never thought about that until I was diagnosed with SLE. Of course, my aunt drank straight from the vodka bottle at the breakfast table and smoked. Maybe she was self medicating, who knows. My sister had ovarian cancer, and was particularly mean to me prior to my diagnosis. She said I didn't do a certain thing because "I didn't want to" and not because I felt sick and was in bed. I think she suffered terribly in fighting the ovarian cancer and the chemo took a huge toll on her. I believe she thought if you didn't have cancer you weren't truly sick. She died in October 2010. I managed to work until about 2007-2008 and knew I had Lupus in 2006. It really answered SO MANY questions. And then, as soon as I could, I started researching everything I could find about lupus. I have learned more from that than from what the doctors do and say. Try to put fear to the side and the idea that you are crazy. I don't think anyone with a chronic illness (whether diagnosed or not) doesn't have the "I'm crazy" thoughts. I I follow Ann A. as she is my age and has been through so many of the same things....and she is VERY lupus savvy. Pick some member you relate to on this site and look at their profiles and follow them....Sometimes we are worn down and get depressed--that is normal. Take care and keep on keepin' on! xxoooLupanCatwoman
Yeah, I'm pretty sure my doc is gonna send me for a psych evaluation. :)
It sucks to be tired and in pain all the time. And I can tell you when you have a good day ( or two or three in a row) you start to question yourself and if you really felt all that. Then you have a bad day, and, yup it's real.
Go to the doc and get tested. Have a real heart to heart with the doc. If he/she is any good they'll listen.
I'm just starting through all of this myself and in the last three weeks I've gone through so many emotions I can even name them all. Wondering if I'm crazy...that's been at the top of my list.
Karon... I know exactly how you feel! My GP sent me to one specialist after another, after another, for YEARS trying to find out why I was suffering from so many weird things. I went to ENTs, Gastroenterologists, Pulmonologists, Allergists...the list goes on and on...and not one of them could find anything specific wrong with me! I finally put my foot down and told my GP I wanted to be tested for Lupus...no ifs and or buts about it! When that blood work came back with positive ANA, he finally sent me to ANOTHER specialist...but this time it was the RIGHT specialist...a Rheumatologist! FINALLY...they know what's wrong. And I wasn't crazy! Whew! You are NOT crazy...well, at least not about this issue... :-)
You guys are all so very helpful I feel so much better about feeling crazy. And I completely relate about having a good day. The last two days I pushed myself to get enough done at work that nobody would notice I didn’t do hardly anything. My job is very physical but luckily easy to bs sometimes. I made sure I got at least ten hours of sleep both days and today I feel like I have so much energy I could run a marathon and no headache! The only problems I have is my cankor sore and another popped up last night which makes it 6 and my back hurts sooo bad but it always hurts. But I feel like the last two days were in my head and that I’ve just been a crazy weak minded depressing person and that there is nothing wrong with me but that I’m paranoid. If my diagnosis turns out positive I will see a whole new side to lupus and its a torturing mind game. The only two people I confided in when I first thought about it being lupus laughed at me but when my regular dr mentioned she was concerned about that and hopefully the allergist can test for it I felt a little not so crazy and then bam I felt crazy again cause I felt fine. I could ramble all day it’s nice to be able to with someone who isn’t going to laugh at you. My boyfriend thankfully thinks something is wrong and he was supportive when we first talked about lupus. My aunt has lupus too but I thought that secondary relations had no hereditary influence?? Anyways enough ramble I feel pretty awesome today (fatigue wise) but I keep reminding myself NOT to overdo it. That’s the hardest part I’m such a go go go person I want to fly around and be a busy body. Hope you all have wonderful days and thank you so much for responding.