The Lupus Forum banner

1 - 6 of 6 Posts

·
Registered
Joined
·
2 Posts
Discussion Starter · #1 ·
I am in desperate need of advice. I am 17. I have two aunts on my dads side who have been diagnosed with Lupus many years ago, one who has passed away.
So my family has always been on the lookout for any symptoms due to my family history.
For I'm not sure how long.. maybe a year, I've had Raynaud's. It's not severe, just a bother. I went to the doctors in May and he confirmed I had Raynaud's and had me run blood tests so he could check my thyroid, blood counts, ANA, etc. It took him maybe 6 weeks to get the results back and he said everything was normal. He didn't give me ANY report about my ANA test. My mom called him maybe 10 times, left notes in his mailbox just saying 'Please call us back we have questions on the ANA results'. We got NOTHING. NO phone call. It's been 3 months now so we have concluded everything is fine. But I feel no support from my doctor and I have another concern that I need advice on.

For the past 3-4 days I am completely exhausted. I'm a healthy, active young girl and this is not normal at all. I sleep 8-9 hour nights and I wake up and still just so tired during the day. For example, I slept roughly 9 hours last night. Woke up this morning, ate breakfast. I was up for maybe 45 minutes then all I wanted to do was just lay in bed. Nothing else. This is not normal :( Now I've read stories here about Lupus fatigue and how some people have to sleep in their cars before they drive because they are so tired. Now I am not that sever at all. I'm just tired throughout the day and have no energy.

Is this something else going on? My thyroids were fine. I don't have mono. Am I being too paranoid about this being Lupus??

I'm scared to tell my mom and doctor because I feel like I am being dramatic and paranoid.

Please help!
thank you so much!

-Melissa
 

·
Registered
Joined
·
7,800 Posts
Hello Melissa and welcome :)

It is difficult to say precisely what you should do but it is clear that you are not happy with your doc and don't feel supported. I think that your Mum would agree there as she has been trying to obtain results and not had them. With that in mind, it might be an idea to get a second opinion, even if it is simply for your peace of mind.

Although family history is important when someone consults a rheumatologist for a collection of symptoms, it is also important to bear in mind that lupus is not, strictly speaking, hereditary and that the risk for close relatives of lupus patients is only very slightly higher than that of the general population. That is not saying that you shouldn't keep it in mind but that you simply shouldn't stress about it too much.

Usually for excessive tiredness to be taken into account as a symptom it would have to persist for a lot more than a few days. Also, it would have to be accompanied by several other typical lupus symptoms. I'm not sure from your post whether you have those or not.

If you follow this link you will see the ACR lupus classification criteria

http://www.thelupussite.com/forum/showthread.php?t=33123

Please don't understand that I am taking your concerns lightly. I think simply that right now you have a few questions that need answering and that the best step is to find a doctor that is willing to look into things in more depth.

Katharine
 

·
Moderator
Joined
·
4,436 Posts
Hi Melissa... if you have been checked for thyroid and mono, then you really need to get the results of your ANA test... have you looked at the criteria on here for lupus? I have Mixed Connective Tissue Disease and thats a mix in my case of lupus, raynauds, scleroderma and myositis..I also have hypothyroid... anywa, if your body is not right then do say then people can help get you checked out..though it seems you may need to go to a different GP and if that sheds no light and you are still suffering, a referral to a rheumatologist, they are the experts in auto immune stuff...or at least some of them are!!:( going to one that is recommended is best. Start doing a daily diary of your symptoms including fatigue and grade them 0-10..10 being unbearable.. or worst. If you get any rashes or swollen joints photograph them. This all adds up to documented evidence because often you look great at appointment time and sit there and tell them ' Im ok' because you hate to cause a fuss... like you are doing now with not telling your parents.. please include them, they will know you are not at the top of your game anyway by now, so let them know what is going on they will be worrying about you...I sound like a nagging mother!!:lol: Hope you get some relief soon and push for some answers...you deserve them.
Claire XX
 

·
Registered
Joined
·
2 Posts
Discussion Starter · #4 ·
Thank you very much both of you for your advice.

Katharine- I really don't have any other symptoms besides digestion problems so that's why I was hesitant to tell my family/doctor cuz my tiredness probably isn't related to lupus but I guess I was freaking out and wanted advice :) So thanks! I will keep watching for any other symptoms if they occur.

Claire- I have tried sooo many times to get my ANA results back with no avail which is very very very very frustrating. GP never called back. AH! So for that reason my mom said that for my Raynaud's she would take me to a rheumy once a year so I will moniter my symptoms like you said.
Thanks!!!!

I feel less stressed now :)
 

·
Moderator
Joined
·
4,436 Posts
Hiya Melissa... to go to the Rheumy you need referral from your GP... so could be a problem if your GP not very efficient. You have legal right of access to your notes, I would write to them if you haven't done so already requesting the results.. that way it is a documented request, rather than just by phone and proof you have asked.... no wonder you are fed up! what a palaver!! I hope your tiredness improves, but keep an eye on everything in the meantime so you have a good picture of how things are. I am glad you are feeling less stressed about it all..don't forget you can pop in here anytime to pick peoples brains....take care.:)
Claire X
 

·
Administrator
Joined
·
7,566 Posts
Hi Melissa, just wanted to welcome you to the site. The others have given you excellent advice!

Take care

Deb
 
1 - 6 of 6 Posts
Top