Hello, I'm new and a bit scared/overwhelmed

General
1

Hi

I'm new and awaiting diagnosis but it is felt by my doctors that I have lupus, I'm just waiting for the first appointment with the rheumatologist to confirm it formally. It's been quite a rollercoaster till this point and I'm in a weird way hoping for diagnosis because even though it's awful it would explain everything and give more treatment options. I know hoping for the diagnosis is really weird!!!

I've had problems since I was a child, starting with heart rhythm problems, I was diagnosed with SVT at an early age. Then as a teen I developed Reynauds syndrome. I then went to uni and within the first year I noticed I was losing sight in my right eye but only when the lights went out, the right eye just never adjusted, I went through tests and was diagnosed with an Adies pupil. By the next year I was suffering from horrendous bowel symptoms and bleeding and went through more tests and was diagnosed with crohns disease. It wasn't long after that I started with joint pains and fatigue, both of which were attributed at first to the crohns. Then I had chest pains and ECG changes and I was told it was Prinzmetals angina. Then I started with photosensitive rashes and random weird rashes some were like plaques and discs, others like vasculitis and others like papules ALL OVER my body and they go away with steroids. A couple of years ago I started peeing blood and suffering severe kidney pain, biopsy showed similar to lupus nephritis changes but without the immune stuff, but I've been on immunosuppressants for years so they feel that's why there was little immune stuff on the biopsy. And now I'm anaemic and it looks haemolytic and autoimmune, again it improves with steroids. I've lost over 3 stone in a few months and have no appetite and feel sick all the time. I can barely stay out of hospital for 3 months at a time. :-( So now after all this I've been referred urgently to a rheumatologist and I've tested ANA positive so my GP says we're just awaiting formal diagnosis and better treatment. Currently I'm on so much medication for separate diseases so I'm hoping I will have to take fewer meds and feel better once this is confirmed.

There's part of me that's scared this isn't lupus and it's all separate stuff because there's fewer treatment options and that means I will continue to feel poorly. But then I'm also scared it is lupus because from all the reading I've done lupus is bad..... so my emotions are all over the place, but ultimately I'm just hoping to feel better soon. I still work full time but i'm worried I won't be able to for much longer because I'm so tired and achey. Every day feels like a constant battle. I guess I'm here looking for people who understand,my friends and family are fabulous and really supportive but no one really understands what this feels like and I suppose I'm looking for people who can relate.

Sorry this has been so long and boring!

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Hi Tinkerbell. Welcome to the site. You will find a lot of people here with a lot of experience and wisdom. I have neither- LOL- but I can offer you support. I hope you get some answers soon and some treatment that will offer you some relief. I am amazed that you still work full time. Good for you. Maybe they can get you on a treatment that will help you continue to be able to work. Hugs

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Not much more in treatment options just cause you have lupus- you have multiple auto immune issues and pretty much the same meds or meds in the same categories are used. Unfortunately there is no cure and treatment is geared to what is being attacked at the moment. Many of us lupus sufferers have to learn to cope with chronically feeling unwell. But this is a great group to learn some of our tricks for coping with this unpleasant chronic illness.

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Hi Tinkerbell

Their is nothing weird about wanting a diagnoses I was so glad to get mine I sang all the way home with the radio then reality sank in a day or two later. After I started treatment I work for several more years and have only been off for the last couple of months. It is so nice that your family and friends are supportive.

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Tinkerbell, your post was good, and very helpful to us all to know what you are dealing with. No matter whether you have a solid by the book lab test diagnosis, or a probable one, or one by symptoms like some of us here do, this is a wonderful place where we learn from each other, and share the downs and ups.

It's only natural to want a name for what you have, so you know what decisions to make working with your healthcare team! What matters most though is that you are able to live well despite whatever name someone puts on your condition. Often it is more than one, and that can change with time. I agree with MBPP and Poobie, here you can find support, information, practical experience, and tips.

So welcome, and warm hugs!

Louise

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<3

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Hi Tinkerbell.

Welcome. I am new to the site as well. I just want you to know that I DO UNDERSTAND..I am going through the same constant battle of making it through my day. Sending big hugs your way. God bless you.

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Thanks for the replies guys!!! They mean a lot to me. MBPP I have NO idea how I manage to keep working fulltime - every single day I wake up exhausted, drag myself out of bed, feel rubbish all day and all evening look for other options and always end up right back at just carrying on and pushing as hard as I can. I have a mortgage to pay for so it really seems like I have no other choice.

Poobie - I'm still hoping there's more than I have currently, all I can take atm is azathioprine as it has to be something that works for both crohns and glomerulonephritis - the current names for whatever is going on inside me!!! I'm hoping that we might try biologics or something for the lupus (if indeed that's what they eventually decide that this is).

it's so lovely that you all understand, I think the tiredness is the thing people just don't get. I had one friend tell me recently that it's ok having kidney disease, I can "just go on dialysis and plug yourself in every night and you will be fine" or "just get a transplant"!!! Lol if only it were that simple!

Anyway, another day at work begins! time to drag myself out the house and do another full day with night school at the end (if I didn't keep up with a hobby I think I'd go mad and mine is car restoration - I'm currently pretty much rebuilding a 1973 super beetle!!! :-P). Thanks guys, hope you all have comfortable days!! xxx

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Oh we do understand more than you know. I just got admitted back to the ER for internal bleeding. But before I could do that, I had to call babysitters and ex husband to make sure baby is taken care of. We do what we do. And it’s scary. And exhausting. But we do it. And we understand the run around. I’m glad I found this group. And I’m glad you’re here too. :slight_smile:

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I'm glad you're here Tinkerbell! Thanks for sharing your story with, and although we don't all experience the same symptoms, we do all know how you feel. I'm glad you're here.

Hugs, Trisha

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Hi

Its not boring, we're here to support you. I am so glad you have understanding family and friends., I do to and it makes a huge difference. I am not as sick as you but I sympathize with you. I know what you mean about just getting a diagnosis.

Hope you have good drs.

Stay positive

Cindy

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Hello,

we all have gone down the road you are going down now in one for or another. boring not so its just because you are talking to yourself about it. there is always friends here that understand when the rest of the world don't understand.

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I ditto everything the others have said. I am adding my prayers and gentle hugs to you.

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OMG-- the problems you are sound like a lot of stuff going on-do not let fear overcome you-it has a hold on you right now-remember if you know God please pray for him to lift that fear from you and overcome this. Lupus is not good- I too got diagnosed with RA first-then they saw my heart was inlarged and found HCM- I wasn't breathing well because of that-NEVER had heart or any other health problems in my life and was in really good shape. Then I started gaining weight and sweating and heatchces all kinds of stuff-it has been a roller-coaster-and hormones have something ( I don't know what) but something with this desease- Honey list your concerns-ailments-and keep a log(im terrible at this) TAKE it to the doctor for LUPUS - hand this to her this may give her more insight on what you are going through daily-yes its homework-ok, we lov you and I have felt welcomed here and understood the fear and things that sometimes are hard to hear and understand because they don't always have answers. I hope you can feel hope you will come to get better with the right meds and what ever you need to do, hang in there baby take baby steps one thing at a time-I hope this helps-g

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Welcome. It is wonderful to have caring, supportive,and understanding friends that care. Glad you you joined this helpful group.

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I've just had my latest immunology results; I'm confused. I still ANA positive with a coarse speckled pattern hn-RNP which im led to believe is a lupus indicator. I'm ANCA negative with an atypical pattern and I'm led to believe that's significant but I have no idea why! Also the Anti DS DNA etc is all negative. Does anybody have experience with this and can it still be lupus with just the ANA positive?????

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Sorry my computer for some reason did not show me all your lovely replies before I posted the above post! Thank you all so much, you're all lovely amazing people! it's so rubbish that we all have to suffer this!!!

xxxx

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I have been there- just wanting a dadgum diagnosis, so I could start making a plan to deal with it.

I was relieved to get a definitive diagnosis after 2 years of being misdiagnosed.

I also relate to having to wait for the appointment with the specialist. a very unfortunate part of our health system, that I wish were not reality.

AND I relate to being in the bind of having to work, but having no energy to do so. I encourage you to start disability filing the minute you get the diagnosis. And get some help form a nurse or someone else who knows what key words to use so that your disability is approved the first time, rather than dragging out. You can always come back off disability. But go ahead and apply, and get help doing it

At that time, I moved in with my parents. I was too sick to take care of myself. So if there is any way you can get some kind of help, like renting out part of your home, or some other relief from your bills, that will give you more resources to use (energy, time, money) towards getting your health back together.

I had to work for myself after my diagnosis. I need the flexibility. My energy is best in the afternoon and at night. So I teach guitar and perform. And the teaching, I can cancel students if I need to, and I never see anyone before 2pm, so I have all morning to sleep and/ or try to wake up :)

The hourly rate for teaching private lessons is more than what I was making working retail when I developed lupus in 1993 and got fired for being sick (blessing in disguise, as I really wanted to teach guitar but was worried the income wouldn't be steady enough).

I'm happier in my work. It's rewarding and fun and authentic, pays well, and allows me to be a night person, and take sick days if I need them without a boss giving me crap about it.

Lupus can be fatal, but it can also be mild. It can also be managed and even put into remission. I was diagnosed in 1993, put on prednisone in 1994. I was very sick- kidney failure, down to 80 pounds, very weak. I combined alternative medicine and using prednisone and was able to get off the prednisone after just 10 months, and maintain my health.

If you are willing and able, there is a lot you can investigate in the realm of alternative medicine. The most effective thing I've done is investigate my food allergies and eliminate those foods. Chi gung helped me a lot too (and it's free- I do it at home!) , and chelation therapy helped me detox heavy metals, and reduce inflammation.

One thing that will help you with your doctor is to bring in as much "data" as possible (list of symptoms, severity and frequency). I created one you can download from my website:

Health and Symptom Tracker

or you can get the app "symple" if you have a tablet/ smartphone.

Kudos to you for reaching out for help from people who understand!

Carla

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Getting the diagnosis is bitter sweet, especially when it takes years for them to figure what is wrong. You are happy to know your not crazy something is actually going on, but then again learning that you have a chronic painful illness to live with the rest of your life is not the best news either. Good luck!

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My understanding-Im no doc-Lupus is hard to just diangnosed as quickly as like RA-so they track your testing and the combinations like the indicator they are telling you about-ask your doctor - don't jump to that ask first ok-you'll give yourself another sickness or a heart attack girl deal with what you have-its not fair!!! but its there. so are we,

tinkerbell said:

I've just had my latest immunology results; I'm confused. I still ANA positive with a coarse speckled pattern hn-RNP which im led to believe is a lupus indicator. I'm ANCA negative with an atypical pattern and I'm led to believe that's significant but I have no idea why! Also the Anti DS DNA etc is all negative. Does anybody have experience with this and can it still be lupus with just the ANA positive?????