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Discussion Starter #1
Hi Everyone,

My name is Jess and i was diagnosed with Lupus just over ten years ago at the age of 17. I have never been onto any of these websites before but i have had a bad bout of health recently so thought that it was time for me to really come to terms with the condition and start taking care of myself a bit better.

My diagnosis came about when i was constantly going to the doctors with the most horrific joint pains in my legs. It got to the point where i couldn't actually walk with the pain so i would crawl to my mum's room in the middle of the night to get her to help me. I also have Raynaud's and my fingers go blue in the hottest weather which is quite amusing but weird! I suffer from extreme fatigue from time to time where i can't get out of bed for tiredness.

Anyway, great website with lots of good information and it's good to know there are people here that you can talk to. I think i've just tried to ignore it to be honest but i can't really do that anymore. All the best to everyone on here, i hope that 2009 brings good health to you all! :) :)

Jess
 

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Welcome to the forum Jess
I am glad you have found your way here because you will get support and understanding as well as information that could help you on the road to better health. We do need to be proactive in our care to get the best out of our doctors. Are you taking any medicines and are you seeing a good rheumatologist?

Looking forward to hearing from you ! :)
Bye for now
Clare
 

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Hi Clare,

Thanks very much for your message. I find that one of the drawbacks of having Lupus is that i can catch any virus going very easily and that it hits me quite hard. In November i was admitted to hospital for emergency sugery on an infected abscess and i was recovering for about two weeks with that.

About two weeks later i was unwell again with severe laryngitis where i was sent to A&E because my throat had closed so much and that's taken weeks to fully get over that. I was feeling very low and weak for a while after and even now i am struggling to get my energy levels back up.

The only meds i am on is plaquinil for the joint pain that i suffer and it's brilliant. I don't get any pain at all when i take it but if i forget it soons starts to creeo back. I am trying to get my immune system boosted at at the mo but not too sure of the best way to do that. Do you have any suggestions?

Thanks again

Jess
 

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Hello Jess, I am glad you feel ready to face your Lupus. My Daughter was diagnosed at 16 after years of ill health. She is nearly 18 now. Like you she does not want Lupus to define her as a person! She has come to terms with it more lately though.
I also have Lupus and am quite badly affected.

Some things specifically advertised for boosting the immune system such as Echinacea, mung beans etc. are definitely not good for people with Lupus. The more the Immune system is boosted the better it will be at attacking you. I am sure others here can give you a better idea but this is just my understanding of it, but based on reliable information from good sources.

Here to help you if I can,
x Lola
 

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Hi Jess

Welcome to the Forum. I just wanted to echo the advice that Lola has given you. The very LAST thing you want to do is to take any products that boost the immune system. Lupus is a disease characterised by a mis-functioning immune system and taking something that will boost our immunity will only boost the antibodies that we carry - thereby increasing the inflammatory attacks on our system.

All the drugs used in Lupus are designed to dampen down the immune system so be very careful what you take. Check everything out first with your doctor or ask her for advice.

Eating a healthy balanced diet is always going to be good for us. I personally find that if I eat too much dairy I suffer much more pain but Im not sure if this is because of the Lupus or the Fibro I have (or something else!) The onset of pain after eating dairy is fairly immediate and concentrates on my back and arms for the most part.

There is a Forum here on Complementary Therapies and you may find some useful suggestions here on old threads :) Here's a link to one thread, for example, on the benefits of Fish Oils

http://www.thelupussite.com/forum/showthread.php?t=67266

Take care for now
Joan:rose:
 

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Thanks to everyone for your replies and helpful comments. You know, thinking about it, i don't know why i haven't cottoned on to that before. It makes perfect sense that if you boost your immune system then there will be more antibodies to attack with!!!

I'm pretty sure that no one has said that to me before, not even my consultant! Oh well, just as well i haven't gone out and bought a load of Immunace or anything like that! I have been concentrating on my diet a lot more than anything else so that should help and also my consultant did say that excercise is good to help bring up the energy levels and it also lifts my mood when i'm feeling low. So i have been going to the gym about 3 times a week which i quite enjoy.

Thanks again everyone! Much appreciated! :) :)
 
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