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Terrified during the most exciting time of my life

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Old 04-27-2009, 04:37 PM   #1
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Join Date: Jan 2009
Location: United States
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dayandage HB User
Terrified during the most exciting time of my life

Hi everyone! Hope everyone is feeling well today.

I am an 18 y/o female. The past few weeks I have been feeling some symptoms that do coincide with lupus. I have had horrid back and shoulder pain which occasionally migrates to my lower back. The past two days I have had finger and toe pain. I feel the constant need to crack my wrists. My period is coming and felt very bloated so I took some diuretics. Though it is now debilitating, I attributed the joint pain to PMS and the diuretics.

Lupus never really crossed my mind until this weekend. I was outside in the sun all day at a track meet (it was very very sunny) and developed what I thought initially to be a sunburn on my cheeks and nose. Unlike my arms and legs, I had no pain/stinging in my face. It is pink/lightish red in color and from the pictures I have seen in books/on the web... could very well be a Malar Rash. I would be 100% convinced if it was not for how I wore my makeup that day. I usually put on a lot of foundation (it has spf15) and bronzer only in the hollow of my cheeks, along my lower jaw, forehead, and especially the sides of my nose. I do this to thin out my face (try it, contouring actually works) This may sound extremely silly, but could it be possible that it actually is just a burn that only affected the bare skin and not a malar rash? I did put a tad bit of highlighter on the bridge of my nose as well.

I have not been feeling well the past few months. I have been extremely run down and sore. I can barely run like I used to. I am significantly slower. I have been in and out of the doctors the past few weeks because of my asthma flaring up. I had to be put on corti. steroids because my fast acting inhaler was not working. I feel pain (it feels more like pressure than a sharp pain) when I take deep breaths. My glands in my neck have been swollen ever since a bout of pneumonia in January. I also have frequent periods of muscle twitching that has lasted the last few months. I have a doctors appointment with my GP this friday, is Lupus worth looking into? My joints have just been aching me!

I must add, that I am an admitted hypochondriac and have been suffering from anxiety since this summer. I am a mess around my menstrual period. Embarrassingly, I have thought that I have had cystic fibrosis(never ending congestion), renal failure, and even leukemia. Basically a new disease every month. It is very possible that this is all psychosomatic, but it is hard to ignore the joint pain, muscle pain, and the possible Malar rash. This time it almost seems to actually be rational and I am terrified!

I don't have to tell you this, but some people live life with Lupus to the absolute fullest. Others do not. It can be a very debilitating disease. I have heard so many stories of people forcing to give up their jobs do to the pain and mental deterioration. Lupus is manageable, yes, but I feel like a Lupus dx would be devastating. Every since I have been a little girl I have had the dream of becoming a doctor. It really has been my passion; science has become my life. I am devoted to this dream. I have gotten the highest grades and really worked my *** off in high school. How would I ever be able to realistically handle the stresses of med school (and the profession!) with such an illness!?!? I have been accepted into one of the best BS/MD programs in the country with almost a full ride. My dream is finally becoming a reality. To have this dream shattered would absolutely kill me. I am so scared.

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Old 04-28-2009, 01:19 PM   #2
Join Date: Mar 2009
Posts: 99
*erica* HB User
Re: Terrified during the most exciting time of my life

Hi dayandage
First off, welcome to the group! I can relate to you, I'm also an eighteen y/o female and I have lupus. The best advice I can give you is don't jump the gun, you don't know if you have it yet and the only one that can tell you if you do is a rheumatologist. I would make an appointment and express your concern about the possibility of lupus. That way the doctor can run the tests and do the exam and let you know what's actually going on with your body. I know it can be very hard not to worry but try your best to stay positive until you know for sure. Hang in there and I hope you feel better soon Also if you have any questions feel free to ask!

Old 04-28-2009, 02:50 PM   #3
Angel MJ
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Join Date: Apr 2009
Location: Johannesburg
Posts: 221
Angel MJ HB User
Re: Terrified during the most exciting time of my life

hi dayandage ...
it is natural to be scared ... ebunselmeyer has given you some sound advice ... there are tests that can be done by a rheumatologist

being dx was probably one of the best things for me as i was made to feel like a hypochondriac and usually always had something, my bedside was a pharmacy ... i was dx at 27 y/o and now am 33 so my journey is relatively new ... but the treatments do work ... takes time sometimes to find the right one
Also if you do some more reading you will find that ppl succeed no matter (even with SLE) it is generally considered 'bad' when there is organ involvement

Don't think about this as shattering your dream but a way to help you understand your body and a way to help you cope while going for your dream
Good luck ... keep posting

Old 04-29-2009, 09:17 AM   #4
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Join Date: Nov 2004
Location: UK
Posts: 1,558
goldenwings HB User
Smile Re: Terrified during the most exciting time of my life

Hiya, just to add my thoughts on this. Only a rheumatologist can say if you have lupus or any other type of illness. Symptoms you speak of could point to a whole lot of things. This is why it is always best to consult a specialist in the area you are concerned with. Do not make the mistake though of 'telling' him you have/think you have lupus, but you must ask him what he thinks. He is the doctor and listen to him first and then if he then asks you what you think is wrong with you, by all means mention lupus, but don't go in there and 'tell' him - he will not be happy with that. Some doctors might think that you have read up on it and then told him about things - even though you will not have done, so be very careful. He should if he feels it necessary then arrange for the appropriate tests.

The other things you speak of are so very common and understandable. Any type of illness makes you feel so frightened. The thing is I am a lot older than you and was diagnosed with SLE when I was 16 years old. 'They' told my parents and myself that I would never do a, b or c in my life. My parents and I decided that this wasn't going to be the case for me. We knew it was going to be a hard battle, but we went for it. I say 'we' because they supported me in all ways possible, home physio, love, care mopping up the tears when things were hard and just being there.

I have lived a full life, worked, travelled, married and done a heap of things because I was determined that nothing was going to beat me as far as working to make things the best I could whilst having SLE. Sometimes it was and still is hard but I try to do things the best way I can and feel such satifaction when I achieve anything.

Ok I have now lots of disabilities and medical problems that are not lupus related, but I still fight and live, live and fight. This is the way I personally cope with my day to day world.

I was so very lucky because I had the most loving, caring and understanding parents and we fought together to get me on my feet literally - I was in a wheelchair for almost a year + 8 months the first time in hospital.

Thing is though that was a long time ago, but I count myself very, very lucky to have been diagnosed within 3/4 days of being hospitalised. I was put on a strict basic treatment regime which was the only thing that was available to me then. Now though treatments and medications have come on in leaps and bounds so nobody now should have to be fearful of not having the right programme of treatment sorted out for them.

Go to a doctor and ask and ask questions and don't come away until you are satisfied with the answers you are given. Of course remember you can come back here and there will be help for you for whatever you might be feeling - anger, fear, anything at all you might want to ask or discuss.

If I can be of any further help as an 'oldie' with SLE, let me know either on here or through a pm.

Take care,

I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 04-30-2009 at 04:57 AM.

Old 04-30-2009, 06:30 PM   #5
Junior Member
Join Date: Jan 2009
Location: United States
Posts: 13
dayandage HB User
Re: Terrified during the most exciting time of my life

Thank you all so so much for the support and reassurance! Your stories are proof that it is possible to live your life without SLE getting in the way! And for that you are inspiration!

I went to my Pediatrician who immediately thought of Lyme Disease. She decided to run a lot of bloodwork (for Lupus, Rh. Arthritis, and even Mono) I am hoping for the best and will keep everyone posted!!

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