Lupus Community

Hi Everyone!

This is Lupylisa

I was diagnosed with lupus 28 years ago. There's an autoimmune party going on in my body! I also have Lupus Nephritis, Fibromyalgia, Sjogrens Syndrome, Raynauds, and Hypothyroid There is a plethora of other stuff going on as well.

After all these years, I have become quite knowledgeable about this stupid disease and how to navigate the treacherous waters of the medical establishment!

It is my hope to share the knowledge I have acquired to help other people dealing with lupus, doctors, insurance companies and to answer questions to the best of my ability. If I don't know the answer, I will try my best to find one!

I have been coming to this board since 2001.

Lupylisa

Well hello there

Names Brenda but everyone just calls me B. I was diagnosed with Lupus (SLE) and a blood disorder (Prothrombin Gene Mutation) two years ago (I am now 21). I suffered from chronic migraines and Rheumatoid Arthritis since I was 13.

Having Lupus and etc. has made me much more mature and wiser and stronger than those of my age.

I've learned so much about Lupus and I wish to share what I know to other people. So many people do not know what Lupus is. I'm totally up for Lupus awareness. I even made a support group on facebook for those who have Lupus. I volunteer at a local hospital for another support group of teens and parents that have Lupus.

We all need to stand strong together.
~B~

Hi, I am Diane,
I am 36 and haven't been diagnosed yet but as of yet still to find out. I have had pretty much all the symptoms and also an issue that has recently started about 2 months ago where my stomach or between the breast bone area at times when I eat the pain between my breast area is seriously painful that it almost drops me. I have had esophageal problems where I was put on Dexilant without tests to see if it would work. It did for a bit but now, I live on tums, muscle relaxers, pain meds, anti -seizure meds and more. Just curious if anyone has had the paIn I have had in that area. It almost feels like I am having a heart attack. Just depends on if I eat anything with gluten or anything like that.

My name is Lisa, another one. I had had Lupus symptoms for going on five years. No one took me seriously until it started getting really bad. Leg cramps, dizzy spells that knocked me down, hair loss, muscle and joint pain and anemia. Finally got a referral to a Dermatologist for the hair loss and she said my problem maybe autoimmune related and ordered test. Sure enough they came back and I had an autoimmune disease.

It's scary when you don't know which disease and whether the medication is going to hurt or help. I had my first appointment with a Rheumatologist a month ago, she outlined treatment and then asked if I had ever had cysts. I told her yes and in fact had one on my thigh. Turns out I have Lupus based on a biopsy of the cyst. I'm glad to be able to put a name on my disease and I have my Dermatologist to thank, she got the ball rolling.

Started Plaquenil and am shocked by all the appointments and testing I will have to face in my life. I even have a Nephrologist because the Lupus and hypertension is effecting my kidneys. I love this website because it gives me a chance to hear from other people who have the disease and what they are going through. It's a chronic disease so I know I can't be cured but I am hopeful that it will get better and my symptoms will disappear or at least get better.

Hello! I am Heather and have found myself wanting to scream! After testing positive 2X's for lupus, having nearly every symptom except problems with my heart (thank God) I cant get one Rheumatologist to say I have lupus. Call me crazy but after more than 10 years of pain and it getting progressively worse I just want someone to say this is what it is and even though we cant fix it we can explain it and give you ways to deal with it. I have been given every anti inflamitory drug there is, Take tylenol #3 daily for pain, Flexeril at night to sleep, zoloft for anxiety and when it gets really bad ativan. Had cortozone shots in my hips which made it worse, been asked to take self injected TNF shots weekly but not diagnosis. Can anyone lead me in the right direction?

I'm a seasoned oldie. I've been around here for more years than I can count. I was dxed with autoimmune thyroid disease at age 16.

At age 35 they added SLE, RA, Secondary Sjogrens, auto immune hepatitis, and more recently Raynauds and now wheat allergy (aka Celiac disease).

My experience with lupus is that it sent me to a new dimension of life as I had known it; and it changed the trajectory of my husband's and children's lives.

I don't have a lupus "tip." I have no advice on how to get lupus to "sit" or to "stay." You have to learn to balance. You have to learn to tell people "no I can't do that." You have to learn to listen to your body and when it says to rest, you better listen.

Lupus will enforce parameters you don't want to live within. It will sap your energy, as in you can't do everything you want to do. You also can't do everything others expect you to do. Please note that I did not say you won't do those things. I said you cannot . . . and that is a difference that is extremely hard to swallow.

I am a type-A , get-er-done personality. I don't quit and I don't stop until my goal has been accomplished. And then there was lupus. My tip to new lupies is to hang up your super woman cape. You ain't gonna be needing that particular garment for a while.

Please listen to your Rheumy. She / He has experience with this disease backed by many patients. If they ask you to try a med, give it some serious consideration and research before you nix it. That one tip could've saved me a boatload of heartache. No one wants to take meds everyday. We equate that as "being old." Skip the age block and TAKE YOUR MEDS.

You have to understand the importance of prevention. Once you have lost something (peripheral nerves, an organ, or damaged a joint) you don't get it back. What's gone is gone so part of lupus is protecting what you have and stopping the immune system from damaging something else.

K2

Hi Diane, I am relieved to see your post to be honest. Tonight is the first time I have ever been to this webpage and I actually found it by accident. I was diagnosed with Discoid lupus three years ago after a biopsy was done by my dermatologist of some lesions came up on my scalp. He told me that I would only have skin problems and just sent me on my way. I have been struggling with extreme digestive problems for at least 10 years and am actually unable to even work now because of my exhaustion and pain. I suffer from what I call my "heart attack" pains quit often. I have such intense pain in my chest that it takes my breath away and often I can't get any breath in b/c the pain is so bad. Sometimes it cause me to become sick and then I'm unable to eat for some time. Since I don't have health insurance I am unable to see a doctor about this problem but I am constantly looking for answers and help. The only thing that I have found on lupus.org is a discussion about pleurisy which seems to explain the symptoms and it is common in lupus sufferers. My pain doesn't always occur after I eat though. The pain starts in my chest and even shoots from my back too. I hope to find out if I do in fact SLE too b/c I feel that I desperately need to be on medication so that it doesn't hurt my organs in the long run. I'm sorry that you too are suffering this way but am glad also to find out that I am not the only one. By the way my name is Christi and I am 28 years old. I also take lots of pepto, a zegerid a day and I also take phenergan when symptoms are especially bad.

I was diagnosed with SLE in 2008 at age 47, but had neurological symptoms since my early 20s after a bout with meningitis with paralysis from my waist down. Occasional seizures followed over the years until joint pain set in.

Now I also suffer from other autoimmune connective-tissue diseases that often come with lupus, Sjogren's, Reynaud's, Ankylosing Spondilitis (which causes intense pain in my neck, shoulders and sometimes my lumbar spine).

Most recently, my rheumatologist suspects I may also have another connective-tissue disease called polymyositis, which breaks down and causes weakness in the muscles closest to the trunk of the body (Hips, making it difficult to stand from a sitting position; and shoulders, making it hard to keep my arms raised to wash or put up my hair and lift anything above my head.).

I am also a new member of the pain management community as all these conditions cause me moderate to severe pain and constant fatigue. I am a moderator for an online lupus support group called LifeWithLupus, which has been so helpful in dealing with all my symptoms, especially the depression that comes with chronic illness and the frustration of living with the capricious nature of lupus.

pax, pj

K2, I couldn't have said it any better.
I've been suffering for at least 354 years, but only Dx'ed in 2002. I presented in the ER with no platelets (ITP), 14 positive Lupus criteria, bruised body, alopecia etc. Massive migraine b/c I was bleeding in my brain stayed in a coma for days. I too have lost organs, living with other organs struggling to keep me alive, had joints reconstructed. I've lost a husband, a home, cars, career and my social life. I now live on drug coctails, I lay in my bed in a small apartment in pain and lonesome. Friends get tired of inviting me and I have to cancel plans when I don't feel well. The true friends can be counted on one hand now. Lonely life!
Your advise were lessons I learned the hard way. Many Lupies will be grateful for suggestions.
Keep well...
Peaches

Hi! I'm Jan and I have had lupus since 2001. I was on 2 pills of Plaquinel up til a month ago and my doctor said that my arthritis was getting a little worse so he put me on methotrexate, 2.5 mg 5 pills a week. Does anyone out there take this med and what are the side effects, if any. Thanks, Jan

Hi! I have had those pains you are having. My gastro doctor said that they are esauphgus spasms. He gave me meds to put under my tongue and it starts to work right away. I only get the pains every now and then, not very often now. He said that they will go away after awhile, and i think they are now. See a gastro doctor and ask him/her about the med hyoscyamine. Works for me.
By the way, hi everyone out there! My name is Jan and I've had lupus for 10 years, only taking Plaquinel for it. but now taking Methodrexate, too. So far no side effects. Let me know if this is helpful! Jan

Hello my name is Lolita I found out I have Lupus I've been living with symptoms for 10years after my son was born and my doctor still not sure but the ache and pains. are real. I also have a herniated disc in my neck and both lumbar. so I know pain very well. but I keep in prayer cause that all I have to keep me going. I'm glad I join cause I'm no alone.

Hi everyone. Diana in Oklahoma. All symptoms of Lupus but have a negative ANA. Going to specialist

What kind of cysts are you talking about. I have two on my leg and one behind my ear. Nobody has ever asked me about having cyst. I always have thought that it was from damage to my skin. Mine are small hard knots under the skin that just appear for no apparent reason