View Full Version : Hello all :)

06-06-2011, 04:07 AM
Well, here I am, confused but in good spirits! I just joined a little while ago. I don't know if I have lupus or not and I guess I'm just here to get more information. I'm 21 years old and have been suffering from migraines since I was 18, probably before then. I've had other strange things happen with my health (random vomiting, intense dizzy spells, flu-like symptoms on a regular basis for weeks on end...) but it's hard for me to say if those are normal occurrences that happen to everyone or if they indicate that there's a problem. I'm pretty good at just shrugging it off and calling those instances "24 hour bugs" or whatever. Anyway, what has brought me here? Well, I started experiencing pain in my left wrist toward the end of April, which went away after a day. Last weekend, however, I started to feel...bad. I can't explain it any other way. I didn't have any symptoms really, I just didn't feel like myself and stayed in bed most of the weekend. Of course, this is after 2 weeks of crazy insomnia where I was getting approx. 3 hours of sleep each night. Anyway, I decided to go out with my friends on Sunday and, after about an hour in the sun, I got a mind blowing headache. I felt nauseous and like I couldn't walk anymore, so there I was, kneeling in the middle of the street before jumping on the metro and hobbling up to my apartment. I fell asleep immediately, woke up the next morning, and my body felt like I'd been run over twice. Every joint in my body was aching, every muscle was sore, I had chills...just everything. 10 days later, I'm still feeling aches and pains. I haven't left my apartment in 5 days, as I've just been trying to feel better. In the time between last Sunday and now, I've developed a runny/stuffy nose that keeps coming and going, very mild headaches at random points in the day, pain and discomfort in my right ankle, and a moderately sore throat. Both of my wrists and all 10 fingers are full of aches and the pain in my back is unreal. My left shoulder blade is completely sore to the touch.

My mother has rheumatoid arthritis, as does a cousin of mine who is only a few years older than me. My grandmother and an aunt both had/have lupus. I'm trying to be proactive about getting checked out and will make an appointment to see a doctor this week. I know that something is wrong, as this sort of thing just doesn't seem normal, but some people I've spoken to say that it sounds like I have the flu. Plus, I've been living in Europe for the past year so others think that I'm developing allergies or having a reaction to the new environment. I'm starting to feel like I'm overreacting because all of that could be true. All I know is that none of what I'm feeling now makes sense to me. When I am sick with a virus or infection, it never lasts this long or comes with such intense joint pain. Also, honestly, it's freaking me out because I've read that lupus is more likely to affect someone like me (young, female, African-American, family members who have had lupus). I'm tired and sick and achy and a bit scared. I'm just eager to put a name on whatever this is and get it to stop making me feel like this. I hope all of this makes sense and sorry for all the babble!

06-06-2011, 05:23 AM
Hello Magnolia welcome to a great group of people who help me so much. I am new here also. Magnolia, I can only tell you what I did to get diagnosed and treated. I documented everything for weeks, took photos of when I was flulike and had butterfly flush. I took this info to my PCP and asled her to refer me to a rhumey. In short order I was diagnosed and treted. I honestly remember feeling better after only @ 2 weeks on the meds. It was amazing. My sister and great aunt have RA. I have a distant cousin with lupus. Hope this helps you and you get the doctors to take a serious look at you. Blessings.

06-06-2011, 05:41 AM
Hi Magnolia,

Welcome to WHL, I am glad you have joined us.
This IS a great group of people, as you will find out soon.
Well your symptoms have Lupus written all over.
BUT, you have to see a doctor, take bloodtests and go from there. There is no sense in speculating and worrying, it may be something else. It could be a virus or something totally different.
Your first move should be an appointment with your family doctor, he will decide what to do next.
Again, welcome .


06-06-2011, 05:52 AM
hi, and welcome.
if you do or dont have lupus............
you are still welcome here.

both of the ladies before me, have givern great advice.
please do not borrow trouble, (as a few of us say)....
if something is wrong, let the doctor worry about it.
if it is allegies, once again the doctor can fix that.

please stay a while and read some of the posts, join in where you want to.

06-06-2011, 10:11 AM
Hi Magnolia! Let me be another to welcome you to the WHL Family! Whether you have Lupus, another AI disease of something else completely you know there is something going on with you! As those before me have said "document, document, document". Please know that even with doing that it may take 1 trip to the doctor or months worth to get someone to give a forum diagnosis. It all depends on the doctor and how we he understands how to diagnose lupus (they all say they do but...). One of the things that I did was to type a single page synopses of what I feel are the highlights of my illness. The longer it goes on the more medical records you have and too often the doctors won't read those but they have to read the highlights when you hand it to them right in the office!

I hope you get an answer very soon and I look forward to getting to know you! Please make yourself at home and welcome to the WHL family!

06-07-2011, 04:32 AM
Thank you all for the encouragement and support. I will be sure to take a look around the site and am doing what I can in the meantime to get an appt somewhere out here with an English-speaking doctor. I don't think I could effectively describe my symptoms in French at this point. Again, thank you all!

06-07-2011, 06:42 AM
Hello Magnolia,

Welcome to WHL and your more than welcome, none of we are doctor's but what your describing alone seems like a good link to Lupus.

I had symptoms from a child, then more at 14 and when i was 18 a large amount of ailments kicked off which Lupus can cause, i was diagnosed 3yrs back and was also told i had inherited it from my parent's and if your relatives have had it, there's a strong chance you may also have it.

Don't mess about and see your GP and get yourself sent to a good Rheumo but when bloods are took with Lupus it can play with the bloods and you could have tests come back negative when they could be positive, so where the condition is concerned it can be along waiting game where results are comncerned.

I wish you all the very best and please keep we all updated.

Terri xxx

06-08-2011, 07:26 AM
I will be sure to describe my symptoms thoroughly for the doctor, I have an appointment set for tomorrow. I've been waiting to see if everything would go away, but it's not. Today, I'm experiencing a lot of stiffness in my knees, particularly if I sit down for more than 2 mins and then try to stand up again. Also, I figured I'd ask this here, but would it be important to mention to the doctor anything about my TMJ? I ask because I used to have it really bad, before I got braces, but it hasn't given me very many problems since my teeth have been straightened so I don't know if it's even relevant to anything. I'm just nervous that the doctor will tell me I have a virus, there's nothing that can be done to make it go away except time, and send me on my way, which has been the case every time I get sick and go to a doctor. I want some tests done, blood drawn, something to prove that this isn't in my head.

06-08-2011, 08:19 AM
Hello Magnolia,

Fire the questions at your doctor mate and refering your stiffness i get that and all you can do is sit for abit then move about, it's like your in a circle.
Yes mention your TMJ Disease because that can develop natually and Lupus can cause it also because i've got that myself and i've got to go myself tomorrow to ENT. Your doctor should'nt think like that just a virus because TMJ Disease never goes and if they do operate on it, the most the operation lasts for is from 2-5yrs.

Push it for bloods to be done but like i've said before if you do have anything connected to Lupus, it's terrible for playing with the bloods at times and giving false readings, so it's really going along with it all the best you can.

I do wish you all the best for tomorrows appointment.

((Hugs Terri)) xxx

06-29-2011, 02:34 AM
Just a mini update. My doctor gave me a prescription for anti-inflammatory and pain meds. Seeing as he couldn't come up with any cause of the problems, he gave me referrals to get x-rays and other tests done. I'm going home, back to the states, in 2 weeks though, and I'm opting to wait until then to see another doctor since my insurance doesn't cover much out here. The meds work well enough for the time being. The joint pain is on and off in spurts, but nothing as bad as I was feeling earlier this month. I'll keep checking in and will hopefully have some answers soon.

06-29-2011, 03:12 AM
Hi magnolia, I just love that flower! So good to hear from you again! I am glad the doc gave you something for the inflammation but you need so much more I believe. It would be like giving you an aspirin for a blood clot but never really looking in to why you got one in the first place. I hope and pray that when you get to the states yo can get a good rheumy to run the full AI bloodwork and more importantly listen and hear the correlation between the sun and joint pain, plus family history. Bless you on this rough road.

06-29-2011, 04:59 AM
i am glad you got some meds.
did you get a copy of the doctors report.

follow it up when you get home.
i hope all gets sorted out.
lupus when left untreated can cause major organ issues.
when treated anything is possible.

06-29-2011, 06:47 AM
Hello Magnolia,

I do hope the anti-infammatory help till your able to get home and sort a doctor from your home town.

Yes the pain can come like that hitting you in spurts, then somedays it's never ending pain but i really hope you can get a descent doctor when your back to get you sorted out and a full diagnosis on what's happening.

Please keep we updated in the meantime.

Terry xxx