The Lupus Forum banner

I don't belong here (I think/hope)

308 Views 6 Replies 5 Participants Last post by  *~aurora~*

I expect I know some of you already... I've been sick most of my life and veeerry sick the past 4 years or so. One of my doctors (GP) swore up and down he'd tested done the lupus test on me and it had to be fibro, not lupus... come to find out he apparently never ran them! I also actually looked into lupus for myself and was horrified to see at least three diagnostic criteria lining up with my past/current symptoms and around half or a little over of the "common symptoms" matching me.

So, now my team of docs at a med school/university clinic are telling me that they won't give me any more flexeril and I have to go see a rheum to rule out lupus. Which I understand, I guess. but I 90% feel like if it is something incurable I'd rather just not know. I'm a bit scared getting a diagnosis of anything will make my dream of being a nurse/NP in China impossible.

anyways, I'm not really looking for advice or answers, though my list of symptoms (compiled for the rheum) is in my signature if you want to know my entire medical history (it's ok, I don't want to know yours either, I promise ;) ). I mostly just felt awkward posting around here without clarifying that I don't actually have lupus (or, I guess, don't honestly know if I do or not). I would feel bad if people assumed I was a "legit" member. :lol:

On a lighter note, I love dogs, cake decorating (and cake wrecks!), video games incl. Pandemic II, Hellsing, cross stitch, hula hooping, fanfiction, AMV's, facebook, mineral makeup, Chinese language and culture, black phoenix alchemy labs natural perfume oils, 80's and techno and Nightwish and Enya, roleplaying with my boyfriend, pimping out my mobility aids (lightup scooter wheels and spray paint are the best things since sliced bread!), my huge family, and... ginseng. Yes. Because without it I lie in the bed giving people confused looks with one eye half opened. :rotfl: Did I mention food? Yes, I rather like eating as well... nom.

Anyways, I probably/possibly/hopefully don't belong here. But, there's a very real chance I might, and I'd like to make friends and figure out the board rules while I'm relatively not braindead from a flareup and while I'm still in that outgoing positive mindset of "It's Not Lupus"! You all seem like a lovely group and I'll try hard not to interrupt things much. ^_^

See less See more
1 - 7 of 7 Posts
Hi Rachel

Welcome to the Forum :) Its lovely to meet you :)

First of all, dont feel awkward posting around here ;) This place isnt only for those with Lupus but its also an extremely valuable resource to those, like yourself, who suspect Lupus or who have a range of, so far, unexplained symptoms and need some support or advice.

I cant say if you have Lupus or not but Im very glad that you have a Rheumatology referral coming up. Of course nobody wants to be diagnosed with a chronic, long term illness like Lupus but the most important thing to remember that putting your head in the sand wont make one NOT have Lupus - but it can delay vital treatment that can get things back to an even keel for you if you do have Lupus. Hope that makes sense! I've only just woken up and saw your post.

I had a quick look at your symptom list and I will reply on that post shortly. You sure have had a difficult health history :hugbetter: :sad:

Anyway I had best go and get my wake-up coffee so that I can start the day properly!

Even if you get a diagnosis of Lupus it doesnt have to mean that your life-long dream comes to an end completely. Yes there are lifestyle adjustments to be made but, over time, these just become common sense decisions. The right treatment is the key to managing many aspects of this disease and that can take a while to sort out.

I have Lupus, Fibromyalgia, Hypothyroidism and Hypertension by the way and I work as a Director of a Drug Rehabilitation Project. Its not easy at times but I still manage it :)

Just a tip by the way. If you dont have things like life assurance sorted out its a good idea to do this before you get any formal diagnosis. Its very difficult, if not impossible, to get insurance companies to take on someone with a Lupus diagnosis :rolleyes:

Better go get that coffee....!

Take care for now
See less See more
Morning, Rachel!

First off...I do believe the biggest mistake any of us can do, is to lay in bed feeling not only pain, but alone!! I'm sure no one on this site is going feel as if you're intruding!! I just started on this site a couple of days ago and I'm already feeling better mentally!! Sometimes, just writing stuff down helps to heal our heads. With so much that goes on with all the physical doo-doo we have to put up with, the last thing we need is to let our heads get torn up. I'm sure I'm not the only one here who can do a pretty good number on myself if left alone for too long! I've got a guy who is really good about all that's going on with me, but he really doesn't understand because he's not actually going through it. At least here, I've got people I can truly relate to. Pain is pain.
As for a life-long dream being dashed...we dash our own dreams!! Lupus isn't the end of the world!! For me, it meant I got my life BACK!! Yeah...sure! It's forever. But, I wouldn't go to the shed for shovel just yet! If it turns out to be lupus for you, think of it this at least KNOW now! I went through almost 5 years of horrendous pain complicated with mounting mental anguish. Not only didn't anyone believe me, I began to feel like I was just imagining all that was going because I was actually just a lazy person. (Until all this began, that was sooooo not true!) For me, it was actually a blessing when I was diagnosed! It explained everything!!! Now that I'm on the proper meds & have begun to change my lifestyle accordingly, I've got my life back! Or, at least, well on my way. I don't think very well when I'm in a flare-up and this site has really helped put me back on course! When I got here, I now realize I was in the middle of a flare-up! I took a few suggestions & what do you know! This morning seems to be the beginning of a good day that I may not have had without this wonderful site being here!
Anyway, a bit of background on myself...I've had 3 bouts of cancer, I've got hypothythoidism & epilepsy since shortly after birth. I've also been through 4 miscarriages & 3 divorces!! I don't look at any of that as bad things or reasons to feel sorry for myself. They just happened & they've added to my personality of today. If anything, all that stuff has made me stronger & built more character into who I am today. And, I'm told I'm quite a character when I'm feeling well!:lol: The's just something else to conquer! As Joan said, don't put "your head in the sand"! Trust me...there's no weapons there! There are, however, numerous strengthening tools here with a whole army to help us all in this war! Yeah, yeah. I know...real corny. But, I just woke up from the first decent night sleep I've had in 4 days! All because I took some advice from someone on this site!
Take care & I hope to "see" you soon!
See less See more
thank you both!

joan: thank you for your warm welcome! I found the list of famous people with lupus on wikipedia and feel a lot better about things with a lupus diagnosis. I'll get on making that rheum appointment. ;)

sue: it's so true! misery loves company I guess. :lol: I do hope that I can eventually get my life back if I get a diagnosis... it is so hard when people think it's all in your head. I had a psych diagnose me with somatoform right before I discovered the hypothyroid with likely autoimmune cause... needless to say she's not my psych anymore. ;) Isn't true somatoform really really rare? These "professionals" need to understand this stuff better before they try to hand out ideas that might prevent someone from getting tested for medical problems!
Hello Aurora, I am new to this site also but I wish I had known some place to ask questions the first three years of symptoms that I knew were not like me at all.

Finally after deciding my doctor was never going to listen to me I asked some nurses that I knew who would be a good doc that would listen. With the new doc, I was one of the lucky ones that got diagnosed right away because my blood test: DsDNA and ANA was positive.

I live in the USA where I can choose. I don't know where you live but hope this helps some.
Take care,
Hi Rachel,
Welcome to the site, and hope to see you in chat room sometime. It sounds like you belong here from what I read. I want to thank you for being honest with all of us about not having a dx yet. It may take a little while to get what you are looking for. There is a wonderful support here if it deos turn out that you have lupus. I can't believe your doctor did not run the tests for lupus, but then I can as lupus often acts like other diseases. I hope you are not in too much discomfort with the wait of finding out what is going on with you. It will be very important to find a really good doctor to follow your care and maybe more than one. I hope to get to know you better and that you find yourself doing well these days.
Thanks Tammy! I logged into chat for a while but no one was around... hm. I must have picked a bad time.

Yeah, what annoyed me most about this doctor was that he swore up and down he'd run them and double checked the results! My boyfriend was really upset, lol. "If he's cause irreversible damage to your heart or kidneys or something I'll come down and-- sue him. Yeah, I'll just come down and sue his sorry behind." :lol: Hopefully it's nothing that serious. But it is frustrating to have to redo everything!
1 - 7 of 7 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.