[Hollie]

Hi, im 14 and in the past few years (espeically this year though) i've had extreme fatigue, joint pain and kidney problems aswell as some (but not all) of the other Lupus symptoms,
including heart pains. I have even been taken to A&E and then put for regular hospital appointments because of the symtoms and yet was told 'Teenage girls make things up to get attention'.
And then the symptoms go away over a few weeks/months and im fine so i look like im making it up even more!

Do you think it could be Lupus or am i going crazy?
And what do i tell the doctor to convince him i really am ill?

Thank You

 

[Maia]

I doubt you are making it up, and it's a shame the doctor has not taken you more seriously. In your case, you will probably need a parent to stand up for you and insist that some basic tests be run to look into the possibility of an autoimmune disease causing these symptoms. Ask if there is any history of autoimmune illness in your family - this does bump up the liklihood that you could be affected by an autoimmune disease too.

It may be lupus, or it may not. Some tests will have to be run (like the ANA test), and if your GP has no clear answers then I would have your parents insist that you be seen by a rheumatologist to hopefully get to the bottom of this.

Good luck - what kidney problems did you have exactly?

 

[cath]

Hi Hollie,

Welcome to the forum.:welcome:

Do your parents know about the health problems you are having? Are they supportive of you getting to the bottom of them? It would really help you if they can help you with doctors appointments and in planning what you discuss with the doctors.

Doctors generally divide 'symptoms' into two sorts - objective and subjective.

Subjective symptoms are things that you describe you feel, so pain, nausea, fatigue etc.
Objective symptoms are things that someone else can see or measure, so blood tests, rashes, joint swelling etc.

When a doctor is trying to diagnose, they will need to look for both sybjective and objective symptoms. So, you need to tell the docotr what you are feeling, but they also need to do tests. They will need to take blood from you, to look at your joints and skin, listen to your heart and lungs, measure blood pressure and to test your urine. On the basis of what is found (the big picture) they may be able to make a diagnosis.

For most people with lupus, it takes a while for there to be enough evidence to convince a doctor that the problem is definately lupus. You also need to be seeing a doctor who is a specialist is diagnosing lupus. These are rheumatologists: and some rheumatologists are better at diagnosing lupus than others.

Where do you live? Do you think you and your parents could convince your family doctor or paediatrician to refer you to a rheumatologist?

You wrote that you have kidney problems. What were they? Do you know the results of tests you had? Lupus can cause a specific problem caused nephritis. This is inflamation in the kidney, not caused by infection but by the immune system attacking the tissue in the kidney. Usually someone with lupus nephritis doesn't have symptoms early on and the first problem found is protein in the urine.

What other symptoms are you having that you suspect might be lupus (asside from the joint pain, heart pain and fatigue?). You've probably already read through information about lupus. The info at the home page of this site is pretty good. Read through it and make a list of the symptoms that you have, especially if there are things that can be objectively measured like abnormal blood tests or rashes.

At this stage it is impossible to say whether you do or do not have lupus, but it sounds like there is something wrong with you. Most teenagers aren't worried they are really ill, so what ever you do have, I think it needs to be investigated better than it has been so far.

Keep in touch,

X C X

 

[LolaLola]

Hello Hollie,
I have Lupus. so does my Daughter now aged 17. She also has a slight heart murmur and deformed renal tract. She had the misfortune to see a GP who was totally unsympathetic. He just asked her at every appt. if she was pregnant!
He did not say she was making it up, but certainly left her feeling that way.
There are good GPs out there and good Rheumatologists but they can be hard to find.
If your Mum would like to talk to another Mum I would be happy to do so. Mums need to be able to push for the best treatment.
Feeling ill is no fun at any age, but I feel it is worse for you young ones.At least I was in my early 20s when I got ill and had done some of the things I wanted to do.
x Lola

 

[onetay]

Hollie,
I don't think you are making it up and yes to answer your question teens and even younger children can have lupus. Have you really spoken with you parents, it is important that they understand what you are going through all of the pains. They can be a great help to you with the doctors. I would encourage you to keep a journal of what is going on with you to report to your parents, teachers, doctors, and anyone else that will listen. I offer to also speak with your mom and/or dad to help you in anyway that i can. You may not have lupus but it sounds like you have something going on that someone needs to listen to you. I wish you the best of luck.
Tammy