Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
In August of 2015 I saw a rheumatologist about the inflammation markers in my blood work and muscle pains I have. He barely listened to anything I had to say. He did the tender point test. It hurt a bit in some places, some places not really. He told me I had Fibromyalgia and sent me on my way.
Since then I've been getting more ill. I keep getting infections that need to be treated with antibiotics. Yesterday I was in the ER because my bladder felt inflamed and I was sure of myself I had a UTI. The ER doctor said I had a few white cells in my urine, but there was no infection.
This isn't the first time this has happened to me. And now to add to my list of symptoms, my eyes, nose, mouth and other places are usually very dry.
I live in a small city and the health care here is terrible. I've been getting the run around with no answers for over a year. I am demanding that I get a ANA test when I see the doctor Monday.
I don't have the classic Lupus rash, but the sun hurts my eyes and gives me a headache. My vision sometimes blurs. I am in pain everyday, some days worse then others. I've had hair loss since I was 25. I leak urine with no control. And there's the question of what is causing inflammation in my body?
I guess I am in need of some support. I feel very alone in all this and I feel no one is taking my problems seriously :(
Since then I've been getting more ill. I keep getting infections that need to be treated with antibiotics. Yesterday I was in the ER because my bladder felt inflamed and I was sure of myself I had a UTI. The ER doctor said I had a few white cells in my urine, but there was no infection.
This isn't the first time this has happened to me. And now to add to my list of symptoms, my eyes, nose, mouth and other places are usually very dry.
I live in a small city and the health care here is terrible. I've been getting the run around with no answers for over a year. I am demanding that I get a ANA test when I see the doctor Monday.
I don't have the classic Lupus rash, but the sun hurts my eyes and gives me a headache. My vision sometimes blurs. I am in pain everyday, some days worse then others. I've had hair loss since I was 25. I leak urine with no control. And there's the question of what is causing inflammation in my body?
I guess I am in need of some support. I feel very alone in all this and I feel no one is taking my problems seriously :(
Have any of your doctors tested you for nutrient deficiencies? Deficiencies often are present in people with autoimmune diseases. Also, I would suggest that you keep a food and health log to see if there is a connection between what you eat and how you feel. Doctors are not perfect and can make mistakes. But you know how you feel. So keep advocating for yourself and keep searching for a doctor in whom you have confidence. Best wishes to you, and keep us informed of your well-being and progress.
And no, my doctor hasn't checked me for nutrient deficiencies in awhile but I did have low iron and b12 a year ago.
And thanks for the info. I'll keep a health log and show it to mu doctor. I never thought of doing that.
I have every symptom you listed. I'm sure you have others that you didn't think of. I have a fine ANA but my doctor and I know I have Lupus. It affected my bladder as it did yours. It affects my heart (pericarditis) and lungs (pleurisy). I have IBS. Then there is the pain from the fibromyalgia. Forget about touching my body most of the time. My feet hurt constantly, my back is sore, etc. This is all nerve pain. To me the difference between Fibro and Lupus is very clear. Fibro is the nerve endings that hurt and Lupus effects the main organs it decides to attack.
No matter what a doctor says you have to listen to your body and do what feels good. I have started to watch what I eat and how I feel. I have limited my physical activity to see if that helps. It is all up to you.