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Lupus/My friend says to go to the doctor for lupus? PLEASE HELP!

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So, I may be overracting but I'm not sure at this point.
I've been sick for a while. Earlier this year (like early November) I had a severe kidney infection that had me in the hospital for abou a week. It's pretty much been downhill from there. After I left the hospital, I kept aching. Like all over in my joints and muscles. I'm fatigued pretty much all the time. It's not only my joints and muscles that hurt but also my abdomen and back flanks (kidney area I believe). I feel like that usually not supposed to hurt lie that (stabbing pain that's sometimes just a dull persistent ache) but I've gone I the doctors and they've done a lot of tests and have come up with no conclusive answers. Yesterday was my latest doctors appt. which ended with the doctor scheduling me for even more tests. Frustrated, I went and vented to my friend. Her father went to medical school so I assumed she would understand chronic pain more than anyone (he father talks about medical issues nonstop). She asked what all was wrong and I told her:
-I'm fatigued almost constantly
-I have joint and muscle pain a lot of the day
-my headaches have worsened
-I have this random stabbing chest pain that sometimes goes all the way to my shoulders. It's weird, it's like on my left side but if my left side had a center, that's where it hits
-it hurts to breathe at times. My mother dismissed this as a bruised rib, but I haven't really been doing anything physical lately (fatigue)
-I get stabbing sharp pains in my chest/lung area
-my lymph nodes are swollen
-I've lost aTON of weight (not through dieting or exercise)
-my hands and feet sometimes swell and turn red. It's excruciatingly painful to walk at times
-my nailbeds turn blue
-I get these weird red splotches around my body (arms and legs mostly) sometimes they hurt but sometimes they're just red and swollen without pain
-my hands and feet and neck stiffen a lot (sometimes they get swollen and sometimes they do not)
-when I'm not swollen or red or stiff my skin is always cold and I feel like I'm shivering half the time. Sometimes that will happen and (I know this will sound crazy) but I know that my body is warm, but I feel cold...if that makes any sense?
-I sometimes have trouble catching my breath
-I get numb a lot. In my face,hands, arms,legs,fingers, feet, and toes. Like right now as I type, it's hard to type with my left thumb, it feels all weak and numb?
-I feel like I have difficulty swallowing a lot, like my throat is closing but not really?
-I get dizzy randomly a lot lately


***mind you, not all of these symptoms come on at once. That would be really awful haha. But it's usually a few happening at the same time and almost all (like 98% of them) happen everyday***

She was quiet for a bit then asked how long it had been going on. I told her I've been aware of them since August, but before that I couldn't remember. She then told me to get my mother to get me to the doctors office right) away because she's heard her father talk about lupus in the past. The only thing I know about lupus is that House talks about it a lot. I told her that I don't want her or anyone else overreacting, but she insisted.

This is a really silly thing to come to people over the Internet for help for, but I really don't know what to do. The "symptoms" are getting worse by the day but I don't want to be labeled as a hypochondriac. Practically all of my family members have dismissed my previous attempts to let them know what's going on so I've stopped voicing my concerns, which makes it hard to talk to a doctor when I'm actually infront of them about what's happening because I don't want the doctor thinking I'm attention seeking or overreacting. I hate even asking this but I had to know as silly as it sounds.

So, if anyone can help me out with this, that'd be wonderful. Am I overreacting or should I really go get checked out?

Thanks so much!

Answer
Hello-

I'm glad you wrote.
I would definitely go to a rheumatologist if I were you. Or any doctor who will test you for lupus then send you to a rheumatologist (there is often a wait to get to see a specialist like that).

Obviously I can't diagnose you over the internet, because 1) it's over the internet 2) you need to have lab tests run and 3) I'm not a doctor. But, this sounds very similar to how I felt when I first developed lupus. It's definitely worth asking to have that diagnosis considered.

Your blue fingernails are probably Raynaud's, an autoimmune disease that often shows up in people who have lupus. Joint pain, fatigue, headaches, weight loss, swollen hands and feet, numbness, rashes- all of these are classic lupus symptoms. And I had them all too.

Here is a webpage from the Lupus Foundation about diagnosing lupus http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.asp

Lupus, untreated, can become very serious. It can attack your organs- your lungs, heart, kidneys, brain. It can even kill you if it gets completely out of hand and untreated. It can be very serious.

That being said, if you are diagnosed with lupus, please know that you can get it under control with medication. I developed lupus 20 years ago and chose to use medication then also use alternative medicine (acupuncture, diet modification, massage, and some other stuff), so that I could get back off the medication once I was well.

I've been very very sick (kidney failure, stroke, congestive heart failure, anemia, joint pain, weight loss, fever, nerve pain- all caused by lupus) and on as many as 9 drugs plus transfusions, chemotherapy and shots for anemia. I am now only on a low-dose blood pressure medication, and I do aerobics 5 days a week. I got my health back.

The one thing I hope you will get from my response is this: left untreated, lupus will not just "go away" by itself. It gets worse and worse if it's left untreated. So, please, go to a doctor, bring this list of symptoms you just typed up for me here, and make sure you give them the whole picture. It took me 2 years to get diagnosed, because lupus symptoms change from minute to minute and day to day (just like what you're going through). One day I'd go in complaining about shortness of breath and pain in my chest. Then I'd go back in, see a different doctor, and talk about my swollen feet. It wasn't until I saw someone who took time with me and got the whole picture that I got a proper diagnosis.

My very best wishes for you-
Carla

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

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Lupus

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Carla Ulbrich

Expertise

I can answer questions such as "what is lupus?" (How common is it? Is it contagious? What are the symptoms? etc.). Also, I can answer questions such as "what are the available treatments for lupus?" (both standard and alternative). Really, I'll take almost any question on lupus, though. If I can't answer it, I'll be very surprised, but I'll also go find someone who can.

Experience

I've been living with lupus (SLE) since 1992. I've had three severe bouts with it, including symptoms such as kidney failure and stroke (if you can call having a stroke a "symptom"). I have completely regained my health, though I have to be mindful to take care of myself, lest I get sick again. I use both mainstream and alternative medicine, and have tried just about everything under the sun to alleviate symptoms. A lot of it worked.

Organizations
Lupus Foundation of America Association for Applied and Therapeutic Humor Toastmasters Folk Alliance

Publications
How Can You Not Laugh at a Time Like This? (Tell Me Press, pub.) What is Laughter Lupus Sundial Newsletter

Education/Credentials
BA in music (UNC-Greensboro)

Awards and Honors
Novelty Song of the Year, Just Plain Folk Awards Winner, South Florida Folk Festival Song Competition Lupus Foundation of America Seal of Approval (for book)

Past/Present Clients
Medicaid Conference Alaska Palliative Care Conference Right at Home Health Care SePHIMA Anritsu Club Med Nursing in Practice

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