Lupus

First of all.. I'm trying to face this with a positive attitude. I've already cried my eyes out for probably the longest I have in my life.. And I'm ready to deal with things.

Ever since 2007, I've had epilepsy along with arthritis in my ankle and wrist. These alone have left me unable to work or go back to college. The seizures aren't controlled by medicine (they are from a head injury in a car accident) and my team of neros is thinking of doing a surgery..

Of course I have had a hard time dealing with all this.. I'm in severe pain constantly (a nasty headache is the worst) along with neck pain I cannot bear most of the time.

The thing I hate most of all about being in pain is talking about it.. I hate sounding like I am whining.

When I was 16, before any of the other problems.. I found out I was pregnant and ended up loosing my child. After several tests.. I was sent to a rheumatologist. My blood test showed I might possibly have lupus, but I had no other symptoms, so I was told to keep in check with the doctor.

Over the last several months my joints started aching in areas where I didn't have arthritis. I also started getting a rash when I was out in the sun. I assumed the rash was from my medications since I am on so many and just thought the joint pain was normal with everything else I am dealing with.. Regardless, I mentioned it to my nero and she ran a blood test, and sent me to another rheumatologist up at the Medical center a few hours away where my main team of neuros is.

After a few visits, tons of blood taken, and a million x-rays.. it was determined that I do have lupus now..

So now I have to deal with this too.. Luckily I do not have any kidney damage "yet." And yet is the key word. I am already on plaquenil. It scares me a bit to take this medication because of how it can effect your eyesight.. But part of me just doesn't give a crap anymore.

I realize with how long this post is I probably won't get a single reply but in a way I ended up venting without even realizing it...

My point was to find out if anyone here has lupus? I am really feeling quite alone at the moment.. In such horrid pain, the pain pills are hardly helping.. So absolutely exhausted ALL the time. I'm only 21 and I feel like I am facing the end of my days. Lay around most of the time so miserable, but what other choice do I have? I try so hard to force myself to do other things, and I do make it to the theatre every once in awhile and I make it to concerts sometimes (thank goodness for disability access nowdays!)

 

Well, I don't have a lupus but I understand how it was to have a disease. I have seen it from others. In my younger years, I'm unhealthy. I easily get fever, cough, running nose and some minor irritations. So when I was informed of the solutions that, to have a strong immune system against diseases, you have to be healthy. So, I started to be health conscious.

 

Everyone goes through something at one point or another. At least you know what you have and how to take care of it. You just got to deal with it the best you can and not let it get you down for too long.

 

Sorry to bring this thread back to life, but since you are still fairly active I don't think it's a big deal.

I'm so sorry to hear about all your medical issues, and I send you positive energy.

I had my first appointment with a rheumatologist yesterday after putting it off for a long while (my mom was scared of diagnosis)/having to wait forever to get an appointment. It was a very thorough first appointment, they did blood work and x-rays while I was there and I saw the results of x-rays and most blood work already. I haven't gotten a diagnosis yet, but my doc is leaning towards Lupus, possibly RA (which has been my fear for 7 months).

I received a cortisone shot (first ever) yesterday and I'm praying that it helps my pain. I have had wrist pain in my right wrist for about 5 years, nothing too bad, but I knew I had some form of arthritis (or assumed so). As of October 2010 everything drastically changed and it became equal pain identically in both wrists (hence my fear of RA)....Just in the past week, my ankles have started to hurt (and I've fractured both ankles many times, while playing aggressive soccer for many years). the pains feels like i have stress fracture. All my x-rays were normal, as the rheumy had expected; even if I have RA he said the x-rays wouldn't show damage yet.

anyway after reading about lupus i think i'm thankful to potentially have lupus as opposed to RA- though as I said already we aren't certain yet. I had read about lupus prior to my visit, but i didn't think my symptoms were too much of a fit, now I do.

but i'm curious you mention having arthritis as well, do you? if so what kind? or do you think your joint pain/arthritis like symptoms are a result of lupus. According to the Lupus Foundation of America's website, apparently the first sign of half of lupus patient's is joint pain. that blew my mind! So i'm curious as to whether you have also been diagnosed with arthritis. I realize everybody's body is different, but i'd like to know. plus i've read about how lupus can have cross-over similarities with other rheumatic diseases including RA.

As for plaquenil, did you take it? Did it help? I'm scared to take it for fear of ruining my vision as well (how will I read/drive--fuck i'm already limited in jobs I can apply to due to my joint pain too-this is all terrifying to me too). I have good vision now, requiring glasses or contacts, but I've noticed blurred vision occasionally especially when reading books- and occasionally I already get rings around light....this makes me extremely nervous to take plaquenil. (My doctor said that this might be his next mode of treatment, not certainly, but he wanted to put it in my head...and i just don't know!

If you're taking it/did take it, how long did you/have you? how has it benefited your joint pain? Have you had any negative effects anywhere, but specifically in your eyes?

As for whining about pain I know the feeling! Right now i'm working part time at a job that aggravates the pain in my wrists drastically, but I just moved 800 miles away and have yet to find a new job. But there are things I need help with and i usually don't say "Ah my wrists can't handle this" I just blame it on lack of strength, which usually works considering my weight is at an ALL time LOW for me...i've never weighed so little, in fact my Rheumy thinks I might have an ulcer- i pray i dont!

but trust me i know what it's like to constantly think about pain. it's to the point where the pain is so drastic (during flare ups) that every moment that my mind is somewhat clear and i'm not thinking about anything in particular my attention goes directly to the pain i'm feeling...it makes me moan it makes me want to complain, sometimes it brings me to tears. every time i close a cupboard door, wash my hands, turn on a sink, lift a pan- whatever I want to mention the pain i feel. I feel so bad for my boyfriend, who i've only been living with for 3 weeks now, because he's the person I complain to the most- used to be my parents. Thankfully he understands that i'm not exaggerating. The first 2 weeks I was here, I guess the flare up was down; I wouldn't have constant nagging, throbbing pain, but if i tried to lift a cup or a plate in one hand I would squeal with pain. but now that i am in a state of constant pain it's hard not to acknowledge it constantly, simply because I am in a constant state of pain---so I feel you lady, if you are ever feeling pain and need to RANT to someone who won't ridicule you or doubt you or who just might understand you better than someone in your everyday life, please please please please please feel free to PM me!!

My friends back at home were very sympathetic to me, but no one really could comprehend it, though one of my best friend's mother and grand-mother both have RA so she was an amazing person to have around. She'd offer to do things for me that she knew pained me. Thankfully my boyfriend understands to some extent, I do a lot of the housework, since he is the money-maker right now, but he helps me with the pots and glass dishes that I just can't deal with. I hope you have people around you that understand and help you minimize the things you do that aggravate your joints.

It's been a few years since you made this post I hope somethings are helping you. Also thinking about it now, even your seizures could be a result of Lupus, has your rheumy ever mentioned that?

Anyway i hope this wasn't too much of a tangent, but I too am dealing with a lot of this, and the pain is what scares me the most. My dream is to become an organic farmer, I'd even been accepted as an apprenticeship at an organic farm for this growing season but had to turn it down after things worsened in October. I know I couldn't handle six days a week doing work that would utilize my wrists, cutting crops, digging, harvesting...hell i don't think i could even push an empty wheel barrow if I wanted to.

I'm going through a lot of changes, having just moved 800 miles, and knowing pretty much my boyfriend, his family, and his friends, and having difficult time finding jobs, all the jobs I really want require lifting 35-50 pound boxes regularly, which i just can't do. Plus the pain it just makes me depressed you know?

I didn't get a chance to ask my rheumy, because as I said before, I wasn't too knowledgeable about lupus, but is the joint pain constant with lupus, does it get better or will it continually progress throughout my life. If the joints could be strengthened I don't know what I would do, but I'd give a lot of things in order to have full strength in my joints. The fact that I am just now noticing my ankles too, is even more terrifying. sorry just can't stop thinking about how frustrating all this is.


once again i apologize for bringing this thread back to life, but i figure maybe we can help/motivate each other and please know that i'm only a PM away

good energy to your body and life :sunny:

 

Goodness, I don't remember even making this post. I'm so sorry to hear about what you're going through.

My health has changed dramatically in the last two years. It's been a year and three months since I had a seizure. Which, is practically a miracle. We don't know what made them stop. It could be the medicine I'm on now.. No idea. As to lupus being the cause of the seizures, that's something we'll never know. I'm going to assume their not related.

I've been on the plaquenil for two years now. I am on a lot of other medications but have been lucky enough to not have any symptoms from this one. I haven't had any major changes in my eyesight as well.

When it comes to arthritis, I have it in my wrist and ankle. I had to have subtalar joint fusion on my right ankle because of the arthritis. I also had to have the arthritis scraped out of my right wrist. They both had been previously broken.

I don't know if it's the plaquenil that has made the difference, but my pain levels are a lot lower than they used to be. My ankles and wrists and lower back pain have all greatly improved. I still have an insane amount of neck pain though. And killer headaches.

I'm lucky also and have really supportive friends and family. My friends are really understanding when I have to cancel plans with them because I'm hurting too bad to go out. My boyfriend is pretty understanding too, but we have only been dating for a short time so he hasn't had to deal with me being in a lot of pain yet.

Don't feel bad about bringing this all up! I'm glad to be there for you. It's hard to find people who really understand chronic pain unless they have dealt with it themselves. I hope they find a way to manage your pain soon!!