Hi everyone, and thank you for the warm welcome.My name is Lynn. I'm 35 years old, and have been sick with mysterious illnesses for over 2 years. I had mono twice last year quite badly and spent at least half of last year in bed. I wonder now, looking back, if those were actually lupus flares. I have had strange breathing for 2 years that stumped the pulmonologist (air hunger, he said) that I suspect might be lupus-related. I now have joint pain, crushing fatigue, foggy brain, strange lesions on my scalp, butterfly blush on my cheeks and nose when I go outside or get warm, and psoriasis. I also have positive ANA and borderline positive dsDNA.
My follow-up to test results with the rheum is on Friday. We are very much expecting to hear a lupus diagnosis. I am learning a ton being here and vascilating wildly between conflicting emotions. I've seen so many specialists and had so many tests done over the last 2 years that I find it hard to believe I'll ever get a diagnosis, much less a treatment.
About me personally, I started a gardening company 1.5 years ago (HAHA!!! sun! exercise!) and have recently started pulling back from it. It has been wildly successful but that has taken its toll on my health and that of my whole family (husband and 2 young kids). I have to send emails and make calls every day referring new business to other companies because I just can't handle it. I can barely get out of bed some days, I certainly can't push a wheelbarrow for hours in the sun.
Anyway, I'm rambling. I'm glad to be here and look forward to having support through the journey of my eventual diagnosis and treatment.
Welcome dear. I am also 35 but I sure didn’t take that long to get diagnosed. The waiting game stinks,especially when it’s your life. I had a cold or something when I was 17 and my throat was hurting. I looked in the mirror and noticed a black lump in my mouth by where my tonsils used to be. My parents took me to the doctor and I was sure blessed he knew what to look for immediately. He drew blood work and a few days later Iwas called to go straight to the hospital. I was diagnosed with SLE and ITP which is low platelts. I was bleeding internally and didn’t know it. That doctor saved my life and so have many since. Not all Lupus patients have this issue thank God. I struggled with it for a long time and had to have my spleen removed because of it. That was in 1996 though. Now people can safely live with it. Anyway I could talk about many things on here lol. It’s been a journey for each of us. Great to have you here and I hope you feel relief and have a better understanding of whats to come from being on this site. God bless you
Thanks, Destiny. I've been convinced I had so many other diseases, that by now I'm still skeptical. But so far, lupus is the only thing that would explain all of my symptoms! I had the tests done by the rheum 4 weeks ago and I'm about to burst from the suspense. I did, however, figure out how to access my own results online. They're the same as 2 years ago when I initially had mono, and last year when I had mono again. So many doctors have seen these numbers, and nobody ever said Lupus! Over the last 2 years, I've been to pulmonology, neurology, cardiology, PT, and infectious disease, not to mention my GP and several walk-in clinics. It's so frustrating!!
I'm glad to have a place to come where people understand. It's been a very stressful 2 years, and I'm just now trying to figure out how to divest my life of stress. It may end up meaning I have to close my company altogether, but if that's what I need to do for my health and for the happiness of my "people", that's what I'll do. It's not going to be easy no matter what answer I get.
Yeah it won’t be easy to hear anything but I would try and hang in there with your business. Just tell the clients you are refering to keep intouch. There is always remission. I did great for like 10 years. Only got sick a few times but did great for the most part. Lately not so much but I am changing my diet and introducing a healthier lifestyle to my being and I truly believe I will be seeing some great results. Less stress is the key to getting through this. If you do go to health stores for anything, read all the labels for sure and ask your doctor if it would be safe if you do have Lupus. I really hope you get great news but will be here for you no matter the diagnosis. Keep your chin up and be confident that no matter what, you will get through this.
Welcome Lynn! I too am in the process of being diagnosed. Positive ANA and awaiting dsDNA test results. I was diagnosed with Fribromyalgia in 2000 and am wondering if it's been this the whole time? I guess we shall see... I have only been here a week and am learning so much already. I too LOVE gardening- am going to be so sad if I have to stop! Best wishes!
Mimmime, hope it is easy for you too. I had a garden tthis year and it died when I was in the hospital. It’s ok to lose a few plants if it means me gaining health. About 20 percent of Lupus patients also have Fibromyalgia. Never the less, glad you found this site too. I actually found it myself a week or so ago. It’s great to read other peoples stories and to maybe give advice when you can. Keep smiling hun. It’s not all sunshine but it is manageable. Stay blessed.
Carry on rambling mate as we're all here to fully support one another and your symptoms sound like Lupus although i'm not a doctor to diagnose and regarding your gardening business and being out in the sun exposing your skin is the worst thing for psoriasis as many of we have it and that's without DLE kicking in.
Your air hunger is most likely coming from your gardening business due to the Mould, fungus and even earth your messing with can starve you of air hunger besides causing many flare issues with Lupus plus i'd ask your pulmonologist to look at you regarding "Interstitial lung disease" ILD as this can develope with Lupus and sjogren syndrome patients.
The link below explains many issues which can occur from it.
Hey lynn you can ramble as much as u like that is what we r here for queen. I was diagnoised at 19 with lupus a now I’m 42. I have more flares now then when I was younger but its to be expected. I too was sick for 1 year with all type of illness until I. Got that butterfly rash an after a biopsy boom there it was. Keep your head up an if it does come down to a lupus diagnois know u r not alone. Join groups stay active in here an keep yourself around a positive support system. Keep yourself educated and share what u know. Its lupus awareness month. Keep us posted an know we are here. Feel free to subscribe to my lupus empowerment channel.www.youtube.com/kolaslifeanlupus
Welcome! This site is an amazing place for information and support, especially for all those wild emotions while waiting for a diagnosis and then actually getting that diagnosis. It took me about two years of tests before I even came close to a diagnosis. It's scary, but you do learn how to cope and when to rest and what not. You'll get there and we're here to help you on your journey
"Lovely input for members to read and also learn from thank you"
Ballerina8876 said:
Welcome! This site is an amazing place for information and support, especially for all those wild emotions while waiting for a diagnosis and then actually getting that diagnosis. It took me about two years of tests before I even came close to a diagnosis. It's scary, but you do learn how to cope and when to rest and what not. You'll get there and we're here to help you on your journey
Hi Lynn, I too went to many doctors knowing there was something else wrong with me than what they were telling me. It was a very long drawn out process to finally get my diagnosis. I also have fibromyalgia. I am 52 and gardening was what helped me when I was younger with my stress, until I started to get sick from the sun. Not only did I get a rash on my face, but my chest would turn red blister and then bleed. I have to take medicine to go outside in the summer wear sunscreen and dress like it is winter. Needless to say I really miss my gardening, so I can really sympathize with you on that, but now my house looks awful on the outside. Everything went downhill or died. The one thing I hate is I am always tired or exhausted and no one seems to understand. They just think your lazy. That still hurts because I use to be so active, my house was spotless, and I never needed help like I do now. When I ask I just get those looks like why can't you do it yourself. Sorry I could go on and on. Good Luck I hope everything works out for you.
I read all the newest replies. I like to see peoples thoughts and input. I understand where you come from xena. Know that we definitely understand you hun. I can’t wait until someone can make a machune that tranfers all we endure onto someone else. Heck hand them your shoes. Knowledge is such power. Print out literature and put it around the house if you can. I have teenage girls and had the hardest time getting them to understand. I know they care but it’s hard when they see what I go through. Anyway I made a choir chart and said for each choir they do they get money towards paying their cell phone bills. I don’t feel to bad about it because it’s teaching them they need to work for things too. Luckily I still have a few good days but I have that problem where I think I’m cured and clean like a mad woman and then am in bed the next few days. I am learning not to push myself. I hope we all have a few good days during this wonderful awareness month. Stay blessed.
Thank you Destiny Scott that is exactly what happens to me. I will have one good day and either clean or take my 79 year old Mother to the store and I come home and I am laid up in bed for days. Even my own Mother does not understand. She keeps asking what's wrong and I keep explaining to her the same old thing for the past 14 years since it has gotten really bad.
Destiny Scott said:
I read all the newest replies. I like to see peoples thoughts and input. I understand where you come from xena. Know that we definitely understand you hun. I can't wait until someone can make a machune that tranfers all we endure onto someone else. Heck hand them your shoes. Knowledge is such power. Print out literature and put it around the house if you can. I have teenage girls and had the hardest time getting them to understand. I know they care but it's hard when they see what I go through. Anyway I made a choir chart and said for each choir they do they get money towards paying their cell phone bills. I don't feel to bad about it because it's teaching them they need to work for things too. Luckily I still have a few good days but I have that problem where I think I'm cured and clean like a mad woman and then am in bed the next few days. I am learning not to push myself. I hope we all have a few good days during this wonderful awareness month. Stay blessed.
Welcome to you. What do you think about changing up your gardening business a bit? Take the business but outsource it to the other businesses instead of giving it all to them? Be a manager of the services, instead of doing all the labor? Maybe you can find someone to work for you? So you don't have to give up your passion, just change how you handle it?
Please let us know your outcome from Friday's visit, its an emotional time to get a diagnosis finally because you're relieved that you know - but then you're also sad that know.
I was diagnosed when I was 17 so my family.was able to see the hell I suffered. I had the blood disorder and was bleedinf internally from low platelets. I had so many transfusions. I was glad I did have that support then. I have some still. I pray things get easlier for you dear. God bless.
xena said:
Thank you Destiny Scott that is exactly what happens to me. I will have one good day and either clean or take my 79 year old Mother to the store and I come home and I am laid up in bed for days. Even my own Mother does not understand. She keeps asking what’s wrong and I keep explaining to her the same old thing for the past 14 years since it has gotten really bad.
Destiny Scott said:
I read all the newest replies. I like to see peoples thoughts and input. I understand where you come from xena. Know that we definitely understand you hun. I can’t wait until someone can make a machune that tranfers all we endure onto someone else. Heck hand them your shoes. Knowledge is such power. Print out literature and put it around the house if you can. I have teenage girls and had the hardest time getting them to understand. I know they care but it’s hard when they see what I go through. Anyway I made a choir chart and said for each choir they do they get money towards paying their cell phone bills. I don’t feel to bad about it because it’s teaching them they need to work for things too. Luckily I still have a few good days but I have that problem where I think I’m cured and clean like a mad woman and then am in bed the next few days. I am learning not to push myself. I hope we all have a few good days during this wonderful awareness month. Stay blessed.
Thanks so much, everyone. I was diagnosed today with mild lupus and osteoarthritis. I start plaquenil tonight, and the doctor gave me a steriod shot (not sure what kind?) today to help me until the plaquenil takes effect. My most debilitating symptom is fatigue. Unfortunately she said that plaquenil rarely helps with that, and that really I just need to honor it and rest when needed. I guess those 5 cups/coffee per day need to be reduced! And while prednisone might help, she basically said that we should save the big guns until my disease progresses. I agree with her. After reading some of the long-term effects of prednisone, I'd rather try to deal with the fewest drugs possible then step it up if necessary.
I feel relieved to have a diagnosis after 2+ years of mysterious illnesses, and optimistic that since we caught it early maybe I'll have a chance at a normalish, though more relaxed, life.
Right now my biggest concern is trying to figure out how to talk to my kids (3 & 7). I am scouring the internet for advice and welcome any insight you all might have about that.
Your welcome from us all and after 2yrs in a way your minds settled more now knowing what's been causing your issues and thank you so much for updating we all on how your appointment went.
Plaquenil is a none steriod drug and helps DLE besides SLE regarding joints and pain and i take mine at night, it does carry some side affects but not all members have had much but a friend advised me for night time and nothing except for the odd nausea and i really hope the steriod shot eases any pain your going through at the moment...regarding prednisone you are correct there can be long term affects with prednisone.
Lynn did the specialist say what form of osteoarthritis you have because i have that but mines to do with cervical spondylosis...regarding your fatigue we all suffer it, when it's not so bad and you feel better to do things do them and pace your body besides resting in between but otherwise rest helps the body.
Lynn regarding advice telling your children i can't give you any as i've never been blessed but members with children can offer good advice on that direction for you.