View Full Version : Newbie

04-03-2013, 07:15 PM
Hi. I'm new here. I don't have a diagnosis yet. Just suspicion from a doctor and told to 'get to a rheumatologist'. In the process of trying to do just that.

My symptoms started with sore hand joints, progressed to the worst fatigue I've ever experienced. Then my hair started falling out. Just recently I have had mouth lesions, weird bruises, sore tissues on my feet and blisters. Just this month the redness/butterfly redness came up on my face. It is also on my chest and shoulders. For two weeks I've been unable to get rid of what I thought was a cold. I'm nauseous constantly lately.

I've tried using herbs and vitamins. Had a lot of success until last month. Now I'm depressed and having trouble finding a doctor that wants to accept me as a patient with my illness. Found another today that is considering taking me. I'm so ill that I'm ready to beg. We live in a rural area and most doctors here don't gave the 'proper facilities' to help.

Sorry for the long post. I'm just at my wits end. I was determined to beat this when the symptoms were milder. I can't believe how fast things went downhill. All I want to do is be well and the harder I try to be healthy the worse I seem to feel. Up until this started I was always doing something...hiking, gardening, playing with the kids. Now I find it hard to get out of bed. This past week all I want to do is cry. I'm NOT a cryer...now it's all I do in private.

Thanks for reading this far.

04-03-2013, 10:04 PM
hi dazed. unfortunately it can be a very long road to getting a diagnosis. some of us have been lucky, and been diagnosed quite quickly, whilst others (myself included) have tried for many years to get a diagnosis. I lived with my complaints for 35 years before I was able to find a doctor who could understand my complaints. one of the main reasons it can take so long..... is many of the symptoms are not specific enough for doctors to use. and there is so many possabilities. in the auto immune disorders there is 63 different conditions. many have overlapping symptoms, and it is quite usual to have more than 1 at the same time. I also wanted to comment on herb remedies. herbs and the like are designed to boost your immune system. if you have an auto immune disorder, then your immune system is already in overdrive. so you need to slow it down, not boost it. we have a member here who is very involved in holistic medicine. one of the hardest things for her to come to grips with.... is that her holistic training cannot help with her lupus. please be careful with this type of remedies. also please read the guidelines that we have lupus have..... as we do not accept open discussion on non approved medicines. it is one of the few things we are very passionate about. this website was formed after our founder lost her daughter to holistic remedies. again welcome we are here to help you and to listen to your questions.

04-04-2013, 07:17 AM
Hi Steve,

Thanks for your reply. My mention of those remedies was more of a shaking my head at them. I was so convinced that I was doing the right thing. The main thing I took was Vitamin b12 to boost my energy and fish oil to protect my heart/joints because I didn't have insurance. It did NOT work. As for the mention of holistic - holistic just means a whole mind body approach from real doctors. Scammers like to use the word to describe their 'snake oil' (I did read the guidelines and warnings) as holistic, which is is NOT. Holistic is a good thing, alternative medicine and bogus cures is not, because holistic means a doctor is taking in consideration the mind, body, and outside forces (like educating your family, etc). I was trained as an herbalist (certificate in 1997), spent years learning in the field with my grandfather, learning wild herbs and their uses. NONE of it (the herbs) work on Lupus. I've tried it and I'm sicker now than ever. I was always into treating yourself, being all 'the body will heal itself, blah blah blah' and you know what? I'm killing myself.

That's the only discussion of alternative medicine you'll hear from me. Don't do it. Stay away from it.

Hoping to hear back from the doctor I called yesterday. Cross your fingers they don't turn me away.

04-05-2013, 01:10 AM
fish oil has been proven to assist in joint issues.
(if muscular swelling is an issue)
i suffer from fibro, as well as lupus, and it is prescribed by my doctor, to compliment my other medications.

vitamin b12 is great for a majority of the population.....
but is not always a good thing for people with auto immune disorders.
i would suggest not taking it without reffering to a doctor first.