[hope23]

Hello Everyone,

I don't even know where to begin, as my mind is racing and has been for about a month now with the possibility of having a disease for which there is no cure.

I apologize in advance for the length of this message.

I have only recently been tested and have yet to get the results of my bloodwork to begin the process of diagnosing me. All signs point to Lupus. I have no idea how this happened. I am 23 years old, was mainly in great health most of my life, very active, ate healthy, exercised, then maybe 4 years ago I started getting sick very easily, picking up things, in the past 2 years I would pick up a throat infection like strep or laryngitis or tonsillitis once a month it seemed. Also about 5 years ago I noticed I would suddenly start limping, as my knee would hurt, or my ankles, but assumed it was from dancing as a young girl and teenager, then within the past year the pain in my knee which comes and goes has been so painful I am in tears. Doctors thought maybe it was tendonitis.

One month ago, I got yet another throat infection, which the doctor assumed was tonsillitis and gave me penicillin (even though I told him I may be allgeric). After almost a week it went away, and then one morning I woke up with a rash on my chest that seemed like a heat rash, so I didn't think anything of it. Throughout the day it progressed, to when I woke up in the morning my entire body was covered. I got extremely worried and thought I had an allergic reaction to the penicillin. I was out of town and couldn't see my doctor for a few days who when I got to, told me it could be an allergy, or was Scarlet Fever and put me on a week's worth of Prednisone.

Now, the rash went away, the Prednisone gave me a few unlikable side effects, but for about a week I forgot about it. Naturally, I couldn't help wanting to self diagnose, though knowing it can never be correct without seeking actual medical advice, while searching allergies and Scarlet Fever, Lupus kept popping up, so I read more and more and more about it, and I fit the bill for almost each symptom. I even had a butterfly type rash.

I still decided not to see the doctor again, they never mentioned Lupus, so why should I? Then I noticed my skin getting worse again, not a rash, but mottled looking, discolored circles, like as if I had been suntanning with my rash and it left a tan around each bump and sore, but it wasn't raised at all. It would come and go, I would noticed it better in certain light, in the bathroom, after a shower, after a day in the sun or a tanning salon.

So I finally saw the doctor a few days ago, and told them my concerns, made it clear I wasn't self diagnosing but I am a little worried and already depressed as of the appearance of my skin and being sick so often. They agreed, and wrote up a series of blood tests, ANA, etc.

At this point, I still wasn't worried, and still wasn't that concerned though, thinking there's no way I actually have Lupus and it was just an allergy that hasn't let my skin go back to normal yet. But then today I woke up, looked at my arms and they looked clear, I was happy, put on a dress and walked to the beach. After 30 minutes, sitting down on a grassy area by the water I looked down and my skin was red and mottled again. That was the moment I realized I could really have this, as I used to be a sun fanatic, grew up in the lake, around a pool, in a resort town, and suddenly my skin was sensitive to light. Now many hours later my skin is still hot and burning, yet cold at the same time in other areas. I still don't have my results back.

I guess I am just seeking comfort, perhaps knowing someone else shares a story like mine and I am not going crazy, and that it did more or less come out of no where for someone else.

I can't stop reading statistics on Lupus life expectancy. If I have Lupus, I literally, am dying. Someone's dying friend. Another statistic. Regardless of maybe not dying tomorrow, and dying 20 years from now, my quality of life would be greatly diminshed. I am 23 years old, female, sporty, active, used to model, and am already self concious of my body, of what will happen to me when I get a flare again, when I rash breaks out all over me, when years of damage to my body has taken place will I be happy and in love? I want to get married, have children, watch them grow, feel beautiful.

I am rambling now, I am sorry. I am just trying to wrap my head around this.

Thank you for your time, and your input if you have any. Bless you.

 

[Pink Pearl]

Hi and welcome to the board.
First, let me clear up something. Lupus is NOT the death sentence it was 50 years ago. Currently the life span expectancy is the same as a non lupus person. Current medications and treatments have made huge changes in what used to be considered a dread disease. Yes, some people do die, but they are usually battling a major organ failure of one form or another. My first cousin lost her battle some years back, but in our family lupus is hereditary. She also died at 36 of her 10th heart attack, had diabetes also and who knows what was the actual cause of her health challenge. She also was NEVER active, had weight problems in extreme, and did not take care in her diet.

Your body condition will go a long way to helping you battle the challenges of lupus. Like you, I was active, would ride my bike 15 miles before I went to work, then ride my horse at night, taught skiing, started the first blind riding program in our area, etc.

If you have lupus, you will need to make changes in your light exposure. You are not, however, sentenced to a life indoors. Most of us find that being outside before 10 AM and after 4 PM is pretty much safe. There are a few companies which now make sun protective clothing which helps for some. You do need to use a sunscreen of 30 spf. Early on, when I was very sun sensitive, I would keep a heavy beach towel in my car and cover my arms over the steering wheel when I had to drive during the bright hours of the day.

Daniel Wallace, MD, has written a very beneficial book for lupus patients. It is called The Lupus Book. I highly recommend you either buy it or get it from your library. We also advise that people not put a lot of credibility if the literature is over 5 years old. The reasoning is that research changes so fast that if it is over 5 yrs that the chance is very high of the info being out of date.

One of the advertisers on this board is National Jewish Hospital in Denver, CO. They were a major source of info when I was first diagnosed. Their # is 1-800-222-lung. They have nurses who can answer questions and give you the most up todate info on research. I relied on them a LOT when I was first diagnosed. Of course, your local LFA or UK lupus chapters are beneficial. The people here are superb about sharing with our own experiences. Odds are that at least one other person will be online at most given days.

I hope I have relieved some of your fears. fyi: I have had lupus since I was about 5 years, but not diagnosed until 20 years ago. With current medications and treatments, the odds are very good that you will live a normal life span.
Sally

 

[Katharine]

Hello hope and :welcome:

Before we go into the rest, let me please reassure you on one thing - If you do have lupus you are NOT dying!!!!

One of the problems of looking into things oneself is that you can find a whole heap of outdated and incorrect info, especially on the internet.

Life expectancy for the very large majority of lupus sufferers is exactly the same as it is for anyone else.

I would also like you to bear in mind, when reading this site, that most people who post here are either looking for diagnosis, newly diagnosed or the rarer more severely affected people (who will also live long lives ). The vast majority of lupus patients are out there working away and far too busy with life to have the time to post much here.

Treatment has also improved hugely over the years and most lupus patients will go back to a normal/near normal lifestyle once they have the appropriate treatment.

Your symptoms merit investigation and I would see if you can get a referral from your GP to see a rheumatologist who specialises in auto-immune diseases.

If it is looking like lupus, please don't expect results immediately. It is a complex disease and diagnosis is complex even for experienced doctors.

I could write so so much more but just wanted to start by reassuring you if I can. Life is not over if you have lupus and it can be long, fruitful and fun

Huge hugs to you and we do really understand you being scared so feel free to ask any questions and lean on us a bit, that's what we're here for.

:grouphug2:
Katharine

 

[donna kosk]

ello hope can i just say that you will never be alone every 1 on here is so so helpfull and all can relate to each others problems.


i was dx in january this year and have been on here for aprox 2months im still trying to get some form of treatment that does work and with out side affects but in saying that i wake up every day and think to my self smile and all is not as bad. it does,nt stop my pain but smilin i think is the best meds i can av . its not a nice thing to have but once under control so im told things get better .



hope all goes well and pop in to chat and just see what people say


good luck

 

[oesa]

Hello Hope!

Wanted to join my voice to the others - you aren't dying, or at least you're not coming any closer to the end of the road any sooner than the other 6 billion people on the planet! :rotfl:

I've been dx'd for about 23 years, and treatment options have improved dramatically since my diagnosis - I lead a relatively normal life (graduated university, have a career, travel, hike, ski, etc..) There have been bumps along the way, but bumps are part of life, no?

I also wanted to let you know that lupus is NOT caused by anything you may have done or not done. It seems to be caused by a combination of genetic and environmental factors - I was about as healthy as it's possible for a 14 year old to be before I was diagnosed - danced seriously (ballet), rode horses, ate a pretty healthy diet due to my hippie parents not liking packaged food,:lol: ran around our acreage more or less constantly instead of watching TV, etc, etc. In fact, I thought my first symptom was a ballet injury to my achilles tendon. You can make yourself crazy if you play the "what if" game, so please be gentle on yourself.

I know you are concerned about your appearance, and don't have any really reassuring words of wisdom, because lupus or the meds we take for it can change the way we look (but don't always.) A while ago I was really worried about some (actually really tiny) stretchmarks I'd gotten from one of my meds, and my boyfriend at the time told me that anyone who was close enough to notice should be close enough to not care. My own addition to that is that anyone who is so shallow that they are a problem isn't someone I want close to me anyways...

Let us know how you're doing, and hang in there.

Lisa

 

[hope23]

Thank you, all of you thus far, who have replied to my thread! I suppose that freak out I had is just one of many to come :wink2: . Though I haven't gotten my results back, I am trying to educate myself with legitimate sources on Lupus now, such as my Canadian Lupus organizations and what not! So I won't scare myself any further. I do get the idea though that despite it not being a death sentence persay, it is extremely scary and can lessen the quality of your life, but all your stories, all these threads, I can tell they help people, it puts a face to Lupus, shows me that you can indeed live a healthy, long, HAPPY life.

Lisa, I really like what your boyfriend at the time said to you, "anyone who is close enough to notice should be close enough not to care", and that is absolutely true! My vanity should be the least of my concerns.

Does anyone recall how long it takes to get blood work back? I had my blood taken on Thursday, and we had a long weekend here just now, so I was hoping before Friday I would hear something from the doctors. I also am worried because I moved to a new city, and left my life long family doctor in my hometown, which worries/bothers my parents, because I see a different doctor in a walk-in clinic each time I go. Is is customary to refer me to a specialist if the results come back as Lupus or is that something I'd have to look into myself?

Also, I have a question in regards to sun sensitivity, would regular light bulbs in your house, bedroom, etc, cause your skin to flare up? I again woke up this morning with my skin looking good, barely mottled or discolored, and remained inside all day, mainly in my bedroom, and towards the end of the day my skin became red and blotchy and HOT, and has remained HOT for hours, basically since being in the sun yesterday too. It is almost as if my blood feels hot, and I touch my arm and they are cool, it is super bizarre. And thus far my only joint paint was my knee and ankle, and now my wrist is acting up. Sigh!

Is burning skin, or hot skin, common?

Thank you all again!

 

[Lily]

Hi Hope,

I'm glad the others have managed to reassure you This site in many ways is not terribly representative of all Lupus sufferers anyway. Reason being is that a lot of people here have quite severe disease, have not got adequate management of their disease or are in the process (like you are) of trying to find out just what they have got

I am only guessing but if it's your GP who has run these tests on you then he probably isn't doing a whole lot more than the ANA test and some inflammation markers. If that's the case then they should be back within a week. More specialised tests are usually done by Rheumatologists and some take a little longer than a week to come back.

Even if your ANA test is positive it doesn't mean you definitely have Lupus. Whilst it is positive in somewhere around 98% of Lupus patients it's not specific to Lupus. You can have it in some other conditions. The number and pattern of it can give more clues though. The higher it is the more likely it is to be some kind of autoimmune connective tissue disease providing you have symptoms of that. However still more tests need to be done to narrow it down and that's when you would be sent off to a specialist.

In regards to light sensitivity yes some patients are sensitive to fluorescent lighting and halogen etc. but not all. It's for that reason I wear sunscreen inside and out :wink2: all year round. However if you were in the sun yesterday with no protection it could also be a delayed reaction from that. One of the Lupus expert docs said it can take a few days sometimes to exhibit the effects of photosensitivity. When I get my rashes they are very hot an feel 'burnt', that seems to be fairly common.

Hope this helps, good luck with your results and do let us know how you get along.

love
Lily

 

[hope23]

Not a good day...

Hi guys,

Thanks Lily for the test info!

So I am not having a good day right now and want to know if anyone else is having this problem, I know I am not diagnosed yet, and may very well have another medical issue that isn't Lupus, but regardless something is quite wrong with my body that is scaring me and no one seems to understand. I just, I can't seem to get it through friends and families heads that something IS wrong with me and it isn't in my head, isn't me needing more sleep, isn't me needing to get my skin used to the sun from after winter, isn't nothing, isn't me overreacting.

I applied a ton of sunscreen today to head to the store for 15 minutes and that helped, still got a bit blotchy and red, but now back at home I feel drained, and my head is now pounding and I feel almost like, sick to my stomach, and just telling a friend now, and telling my family members this, they literally change the subject, tell me it's nothing, tell me "oh summer's just starting your skin isn't used to it", MY WHOLE LIFE I HAVE BEEN IN THE SUN AND WAS "USED" TO IT. I don't know if they think they are helping me not freak out, but them not awknowledging it or even asking how I am doing, how I am coping with this weird time, is making it worse and making me feel more alone, more sad, and frustrated.

I understand they can't see me, can't see my skin, see my eyes, see the fatigue, hear it in my voice, understand that anything is actually wrong because I am walking, talking, not dying in a hospital, don't have a rash anymore, but I am having a very difficult time trying to get someone to understand WITHOUT being dramatic and all woe is me and everything.

Last night I was awake until 4am hearing/seeing things, thinking someone was breaking in, but of course wasn't, pain in my jaw all night, head pounding, feet burning, skin hot, I just... I don't know. I just want my results already I guess, then I can actually sit my family and friends down and show them information on lupus, email/facebook websites, explain it to them so they understand. Or explain whatever is actually wrong with me.

Can things really get worse and worse every few days, or is it just in my head? Every day something new hurts, something new is weird, off kilter in my body, I notice something different, is my mind just overreacting now on overdrive? Ugh.

 

[doris999]

First, you are going mad, it's not in your head.
I to feel sick after going in the sun.
People don't understand what they cannot see, as i have found out, just because i don't have a rash & i may look well, Does not mean that there is nothing going on inside my body.
I have given up trying to get people to understand what i am going through, i get asked how i am, i just answer good even if i feel crap, cos i don't want to have to explain again why i feel like crap. I have even told them to look at a lupus web site and read what is said, and maybe they will get an insight as to what i go through everyday.
Don't give up hope, just keep pushing to get an answer.

Sandra.

 

[oesa]

Hi again.

I also find that time in the sun can make me nauseous and feeling generally "flu-ey", especially if I'm in a flare.

I'm quite fortunate in that I've had long periods of remission when my sun sensitivity goes away - I'm still careful about exposure in those times, but I'm really a mountain person at heart, so I just try to be sensible about it while still pursuing some of the outdoor activities that I love - doing more treed hikes for example. I also find ways to avoid the outdoor activities that I like less - someone else mows my lawn for me these days!

Getting people to accept that it's not all in your head may be challenging. My dad in particular did not want to accept that I was sick, until I was really really unwell, I remember near the beginning of my journey he gave me a "pick yourself up and stop feeling sorry for yourself" speech that took years of therapy before I could start to understand a bit of where he may have been coming from. It's hard for loved ones (parents in particular I think) to watch us going through illness, and so denial can be a normal part of their process too. All you can really do is keep the lines of communication open.

Didn't mean to write a book so I'll stop here - take care!

Lisa

 

[Katharine]

Hello hope,

Just a quick word on results. Lupus results do usually take about 2 weeks to come back as some of the tests they do take longer so don't worry too much about it being a bit longer.

Even though you mustn't stress about results nor try and analyse them yourself (only the most experienced doc can do that), do ask for a copy of your results each time and start your own medical file.

I would also look into a longer term GP solution where you see the same doc each time. GP follow up is important.

In most countries you will need a referral to see a rheumatologist but you usually have a choice over who you see. You must try and find a rheumy specialising in auto-immune diseases. It is important to see a rheumy, normal GPs just don't have the know-how to deal with lupus (or another auto-immune disease). The rheumy is the one who can get you onto the correct adapted treatment.

I'm afraid others do find it hard to understand even for those of us who have a definite diagnosis. There are many people I never mention my disease too, some I'll mention it to in passing if asked for example why I work (or I'll just tell them that I'm being kept by my husband :lol. This site is a great way for me to talk about what's going on for me without overburdening others.

Some people are surprising and you'll find friends where you least expected them. On the other hand you will also see that some are only interested in you if you are a specific person that they want you to be. I don't miss the latter type at all.

It's also good to remember that we, ourselves, would not have understood before actually "feeling" what it is like - after all, most of us, most of the time look fine.

Remember, one day at a time

:hug:
Katharine

 

[onetay]

Hope,
It is not uncommon to have all these questions and worries go through your head all at once. I too was in the sun all the time as a kid and teenager (I loved the sun and bathing in it from rise to set). I started getting rashes when I was in the sun mowing the grass, so I thought it was the grass that made the rash (that I could handle). We spent over a year trying different things and elimanating them. Finally my dermy did a lot of blood tests and a biospy. He said as he was walking out the door we will hope it is not lupus. I though nothing of it. I had no idea what lupus was.

I got the call and was asked to come to the office. He took me into his office and said have a seat. I knew this was not good if you have to sit down for the news. He said that the biopsy came back possitively sle with severe sun sensetivity. Ok how bad could that be right, give me a pill and we will be done with it? That is when I learned that it has no cure and can be life taking. I ran home did a search for sle and cried and cried. It was not till I came here that I found out most of the information about how long you can live with this is grossly understated.

I am sure you have read some of the posts on the site and are thinking how can you live with this? The answer is easy, You have to. You make adjustments in your life to cope with the changes you have to make in order to stay alive and as healthy as you can. You may not have lupus and that is the best you can hope for, as your user name implies. If you do get the lupus dx we are here for you and will be for the whole journey of living with lupus. Be well and take care of yourself.

 

[hope23]

Hi Everyone,

Thanks for the replies. I haven't heard back from the doctors yet, this thursday will be two weeks since the blood tests so I really hope to hear something soon. I am of course still not doing great, it is summer and the weather is gorgeous and I moved into a home minutes from the beach only a year ago waiting for the best summer of my life.... now I can't even seem to go in the sun without crying and coming back inside.

When I am in the sun, walking around, simply to and from the bus, to work, etc, 15minutes at a time, my skin still turns discolored. Now, it isn't a rash, it doesn't become itchy, scaley, it almost appears as if its underneath my skin, it turns red, blotchy, mottled looking, bizarre tiny circles. Is that what happens to anyone on here?

I started a new job, I have no intention of telling them I have Lupus if the diagnosis comes back positive (at least not yet), but I am already struggling trying to tell people that no I don't want to have lunch with them outside today, no I dont want to walk down to that park there, no I don't want to meet up this weekend at the beach.. It's BOILING in my office, under hundreds of flourescent lightbulbs, and I wear a short sleeve top, and in a couple hours my arms are just simply so blotchy and red and mottled looking I put on a sweater and sweat to death because I am so self aware and embarrased thinking everyone is wondering what the **** is wrong with this girls arms. I hate this.... so much.

It also has been hurting to breathe lately, a bad cough seems to be coming as well, It almost feel likes bronchitis but deeper or something.. can't describe. Sigh.

Friends and family keep saying "well what if it's not lupus, stop freaking out", but they don't seem to realize if it ISN'T lupus, it almost scares me even more. Something IS indeed wrong with me, my immune system, my skin, everything has suddenly changed for the worse in almost only a month or two and that is not right. In a weird way I want to know its Lupus, as opposed to some awful skin cancer, or cancer in general, or god knows what other disease accompanies these symptoms matching Lupus.

Thanks for the support again!