Hello, this site is new to me. I have not been diagnosed with lupus I am actually still waiting to see a doctor. ( and they all say I'm a mystery ) I'm just looking to discuss things with people who may understand. .
I guess I'll give a little background on my concerns.
When I was 18 I began having joint pain,and fatigue. Simple things made me very tired,like making my bed, or even sweeping the floor. I wouldn't need to be on my feet all day to become exhausted. Nothing I would do would help my fatigue. It would get better when it wanted to. I also have some bone pain in my legs and arms. I also started noticing that I would swell up a lot and my body would become very tender,especially if I had been outside. I would also get worn out easier and get migraines when outside and my eyes were so sensitive to the light ( indoors and outdoors),even if it wasn't very sunny. I would also get flu like symptoms and they would be off and on but, I would never actually get the flu. I still have this, There would be times when I would be sick to my stomach, and lose my appetite ( this has lasted about a month before),when this would happen my stomach would feel "inflamed" as would the rest of my body. It would be very difficult to eat and I would throw up sometimes even without a fever. When this would happened it seemed like everything else was magnified and then it would all calm down together. I am now 21 and have been waiting for all of this to just go away! But instead it has only gotten worse and not only that I have new things popping up. First, my joints, ( all of them,mainly knees ) are stiff and even swollen. My keens have been giving out on me. I now have muscle pain ( mainly my left shoulder area and down my back a little and my arm) that can have a slight burning sensation to it.It also feels stiff and there's times when I can hardly move my left arm at all. My muscle pain is even in my feet, I'll wake up with it. I will have pain when just writing a few sentences. I'm noticing that I'm not walking and moving around as well as I use to. I ache all over. It's like my joints are against me. My hands swell up with I'm cold and kind of lose color. I will also go slightly numb everywhere from both my feet, hands , arms, and even my lips. I've broken out in hives for 4 days, and around this time I noticed I have a red rash on my face from the bridge of my nose to both my cheeks and it is hot. I only went to look at my face because of how it felt. I've had it for a few days now and it seems to get a little redder when I am in more pain.The rash feels different then the rest of my face . It feels smooth. But I have noticed this last year when I would be outside for a little bit I would get red in the face, only in the same area and no where else, but I completely ignored it. Now its concerning me because I first noticed it at night and earlier in the day I wasn't even outside. I was too busy being itchy because of the hives, which by the way, never made it to my face. Anyway. The rash wont go away completely. I notice that when I begin to feel pain, it wont just be one thing It will be my joints, my muscles, my head, my body will be very tender and my stomach will give me problems, I will lose my appetite and I will be so exhausted. My entire body is tired and in pain. I get lightheaded a lot. I eat very healthy. I don't smoke, drink or use drugs, and I'm not even on a prescription. I am currently looking for a doctor but I am also nervous about going because I don't have to walk away with no diagnoses or explanation like I have so many times before. I'll be sooo tired and be in a lot of pain for days,weeks to a month and then randomly things will start to clear up and without me changing anything. Anyway that's some of what I experience. I'm so frustrated with all this right now.. I can't get every little detail of what happens to me in this one message, I think I would be writing forever! But I think this is enough. I know no one can tell me what I have, but I'm curious to see if anyone who does have lupus can relate me to or I to them
Hello and Welcome to our family;
You are not alone and, I would say that, many of us can relate to almost everything that you've described. Every symptom that you've listed is familiar to us. Lupus is an auto-immune disease that can attack every single part of your body- organs, muscles, skeletal, brain, skin, tissues, joints, etc. So, it can be quite common for us to have the complaints that you've listed. Also, Lupus is a disease that changes - symptoms may get better, others may get worse, some may go away, new ones may appear.
Also, there are quite a few skin disorders in Lupus, they can be raised and red, smooth and itchy, bumpy and burning or combinations of all of the above. We all are very sensitive to sun exposure and doing so can almost always cause some symptoms to worsen or for the entire body to go into a flare-up (worsening of all symptoms). It is imperative that we avoid sun exposure as well as exposure to fluorescent lighting. So, we wear sunscreen (minimum 50 SPF) every day- indoors and out. We also wear protective clothing so that our bodies are not exposed to sun exposure. Sunglasses and hats are also a common apparel for all of us.
Debilitating fatigue is also a common symptom of Lupus and one of the most difficult ones for others to understand (many tend to label us as lazy). It is a form if "tired" than is indescribable to any one other than someone else who suffers from it.
One heinous thing about auto-immune diseases is that, once you have one of them - like Lupus - others want to join the party. You will find that most of us have overlapping diseases. I, myself, have Lupus, Raynaud's (fingers, toes, nose ect. get very cold, turn blue and sometimes hurts), Fibromyalgia (full body muscle pain with extreme fatigue), TMJ, IBS, and others. So, your symptoms could be from overlapping issues occurring simultaneously.
I do hope that you get some answers when you see your doctor. However, even if you don't, it is important that your symptoms be treated because another common feature of this disease is the fact that, if left untreated, it will most definitely get worse. It is a chronic disease and it IS NOT going away. You need to get treatment, take care of yourself, make some lifestyle changes and do all that you can to avoid allowing the disease to get worse.
I wish you the very best and I hope that you get some relief very soon.
Peace and Blessings