im not sure if i have lupus or im jus... - LUpus Patients Un...

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im not sure if i have lupus or im just crazy and its all in my head?

kkgirl profile image

i have pain in all of my joints, no sign of swelling i dont think but have alot of popping , i get a weird numb feeling in arms and feet/ legs (almost like its asleep) i have swollen lymph nodes, rash on chest cheeks and across nose. also im extremely tired. i was diagnosed with raynods a few years ago. I had blood work done a few years ago and it was negative. I am to have lab work this friday but if the last test was negative wouldnt this one?

i feel like nothing is really wrong with me from the tests last time, but im so sick of the pain.

7 Replies
Hidden profile image

It does sound like lupus to me, certainly some auto-immune problem. I also get a fizzing feeling sometimes in my feet, I feel as if taps at the end of my fingers have been opened, draining all the energy out of me, and I have rashes on my face that prick like needles sticking into me. My hair is still falling out after 3 months of hair loss and is now thin and wispy. My hands are completely stiff in the mornings despite being on hydroxychloroquine. If this sounds familiar we may well have the same disease. You need to keep pestering them to check your blood for antibodies, when they find them they willmake adiagnosis. Good luck!

kkgirl profile image
kkgirl in reply to Hidden

What you described sounds a lot like what I have. I have blood work Friday but I have a feeling its going to be negative and im going to look like an idit still but who knows. My new doctor thinks its some autoimmune

Hidden profile image
Hidden in reply to kkgirl

You are not an idiot, just some-one who needs a diagnosis. Write down all your symptoms and give the medics the list, and keep asking for blood tests until they find the antibodies. Fingers crossed for you.

Go to your GP and tell the your concerns. Hope it all goes well for you.

Basic facts on lupus for you }

What Is Lupus? The immune system is designed to attack foreign substances in the body. If you have lupus, something goes wrong with your immune system and it attacks healthy cells and tissues. This can damage many parts of the body such as the:

Joints Skin Kidneys Heart Lungs Blood vessels Brain.

There are many kinds of lupus. The most common type, systemic lupus erythematosus, affects many parts of the body. Other types of lupus are:

Discoid lupus erythematosus—causes a skin rash that doesn't go away

Subacute cutaneous lupus erythematosus—causes skin sores on parts of the body exposed to sun The above are what I have suffered from for 30 years.

I just got my ESR back and the value was 1 and the std range is 0-20.. well i guess im fine. no swelling are anything.. in a way this is very frustrating im not going to lie!


Yes unfortunately it is extremely frustrating...just know u are not alone! :-) I'm right there with ya. I've heard this a million and one times... listen to your body, you know your body best. Keep going back to the Dr. If you don't have a good rheumatologist, find one. I have all the same problems as you and have recently been diagnosed lupus s.l.e. ... its an uphill climb and seems like u will never get there. Ever single day is a struggle, I know...when I first started having my first symptoms 3 years ago, maybe 4... I went to a not so good rheumatologist who said he wasn't convinced that I had reynauds which I clearly do have as stated by my current rheumy who apologized about my previous experience with the other rheumy.... anyways, about the SED rate, read up on it. A diagnosis cannot be made on a used rate alone. A used rate of 1 is not unusual for fibromyalgia. Also a SED of 1 does not totally rule out lupus. The pain u have is not all in your head... I think every lupus patient feels that way and just tries to push on thinking the next morning "oh, you mean I'm still alive, as they wake up". Or at least thats how I feel. I cannot think clearly, have daily nausea, severe joint pain, neuropathy and a laundry list of other stuff...also lupus messes with people psychologically. Please make sure when u get your blood work or any test done for that matter, get copies of the report... good luck. Hope ij didn't make u feel worse.

Atibrat profile image

I know it is very frustrating for the first couple years my symptoms started before my blood work showed anything. I was first diagnosed with chronic fatigue and then fibromyalgia. Finally my blood work starting to catch up and show that it was an autoimmune disease that my Rheumatologist had already told me that is what he thought I had. He did say he thought it was the start of lupus. if it is an autoimmune disease eventually the blood work should show it but for me it took a long time.

I started the first year with extreme fatigue, the second year the stiffness joint and muscle pain started in. Then last year I got the butterfly rash, sores in my mouth, very itchy scalp with hair falling out, purple eye lids and over this time chronic bronchitis and asthma, I just never know what new thing will pop up.

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