Hi, I'm 18 and have been going through a difficult year or so due to what I believe to Lupus. I got a blood test today and must wait 10 or so days before I can be seen by a doctor. I was hoping if I shared my story and symptoms that some members of this forum who know more about Lupus may be able to help.
After leaving a foster home where I was being treated badly and being put under extreme stress by the people I lived with I was prescribed anti-depressants by my doctor and they didn't work out well. I came off them after about six months of use and went through horrible withdrawal. A few months after the withdrawal ended I began to get really sick. I felt weak all the time and dizzy, but this subsided and I got better. Then a few months later I got sick again, it felt like the flu. I was again weak and dizzy, but I felt strange mentally. I could not sleep even though my body was aching and sore and I felt mentally drained. I also felt as if I was bipolar, going through a phase of mania. I was constantly up and going and never felt the need to sleep. This went away after a few weeks and I was fine again. The next two months I was my usual self again and felt alright other than fatigue and body aches, but every now and then I would have phases of complete restlessness.
A few days before New Years Eve this year I had gotten very ill. I felt like I had the worst flu I had ever had. I just assumed this was due to the cold weather and normal flu that many people get during the holidays. But, then it got strange. I began getting extremely painful headaches, which was odd because I never have headaches. I was also very paranoid and anxious. So, for about two weeks I was having these extreme headaches every few hours that advil, tylenol or motrin just would not ease. I also began seeing flashes of lights, spots and shadows and not sleeping for more than two hours. My mom told me this may be an aura migraine, but it should not last this long. I was very scared. It has gotten a bit better, as the flu-like symptoms have subsided, but the headaches are still very bad and they are now accompanied by weakness to the point where I need to sit often because I feel as though I may pass out, ulcer or blister type things in my nostrils, sore muscles, body aches, numbness in my hands, legs, fingers and toes, sleeping much more but awaking feel as though I have sleep apnea and can't breathe, petechiae on one of my shoulders, chest pain, a slight rash/redness on my face, not urinating often, getting overly warm and overly cold at different times of the day, abdominal pain, extreme sensitivity to any type of light, and pains in the veins in my hands. It has been very overwhelming.
I have also noticed that I feel alright when I first wake up, maybe just a bit tired, but as the day goes on I feel as though my brain and body break down. I begin to get the headaches which causes me to see shadows, spots, etc and get really weak. By the time I arrive home, my boyfriend needs to assist me to get undressed because I am so dizzy and unsteady. This usually happens around 4 pm. I feel mentally strange the longer I am out in the sun. I just don't feel like myself and then I get paranoid because I am so worried.
I'm sorry for it being so long, but I just want some help. I feel too young to be dealing with these problems and no one seems to understand. I have talked to my doctor about these symptoms briefly which prompted a blood test for lupus, rheaumatoid arthritis, and thyroid problems. But I am worried she will assume I am a hypochondriac if I tell her everything. I have been to the hospital a few times, but they never take me seriously and seem to push me aside. I would truly appreciate it if someone could tell me if my story and symptoms sound similar to their experience in being diagnosed with lupus.
Hi and welcome to the forum. I'm so sorry to hear about your struggles. I think at this point we need to sit back and see what surfaces w/ your lab. I do know that sometimes stress can do crazy things in our body as well as trigger some things. For example, I think stress triggered lupus to surface in my body. I look back and recognize the symptoms for many years, they just weren't screeming until I went throug some very stressful things.
Are you having joint pain or just muscle aches?
Some of your symptoms sound like fibromyagia.
Sweetie, I'm praying for you. I know how frustrating it can be when you feel really bad and it seems like nobody cares. Please keep us posted on your lab results. Meanwhile, stay out of the sun. Try to keep calm. I mean that - stress can trigger symptoms. Also try to take really good care of yourself. Like eat good and drink plenty of water. Take your vitamins, that sort of thing. And try to smile and laugh. I know that may sound silly, but a positive attitude can go a long way, especially when you are faced with something you might think is serious.
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