Hi Im New here!!
I am new here.. My name is Ivana im 20 years old. I have not been diagnosed with lupus yet... but i do beleive that I could have it. I really just wanted to see what your opinions of my symptoms would be and if you think that I could have possible lupus. About 2 years ago I started noticing that I was not feeling like my usual self. One summer it hit me.. I couldnt go outside in the heat or i would get a tremendous headache and nausea where i would actually have to go back inside in AC and bury myhead under covers and go to sleep to get rid of it. No NSAIDs would work. I also suffered from fatigue at that time, Which im not really sure if it was relative because i also suffered from cystic ovaries at the time. But that was really the extent of my symptoms at that time. Now the beginning of 2009 is really where i feel like everything started going wrong. I was under alot of stress previous to all my symptoms so im not sure if this is what brought it all about. But what first started out of no where was the GI problems. I started having a lot of trouble having BMs( sorry if tmi)and really bad abdomen oain and going to the bathroom right after I ate. This was causeing me to lose weight quick.Also, I noticed i was starting to lose my hair!! now being a young girl thats just heartbreaking! so i went to the gastro and got dx with IBS-- got put on Miralax and scheduled a colonoscopy along with bloodwork-- needlesss to say they found nothing wrong with me. The only thing that came back was that i carried the gene for Celiac disease. So,, I decided to go on a gluten free diet to see how i felt. didnt really make a difference but stuck to it for a bit. Now around the same time my stomach issues started in walked the rest of my symptoms--
* Fatigue( feel like falling asleep while driving)
*sensitivity to hot and cold temperatures
* Change in periods( they are so messed up and off its rediculous)
* Night sweats/ insomnia( barely make it through a night without waking up either because im hot or just wide awake)
* Photosensitivity( break out with a red leather-like bumpy rash on arms, neck/chest,and face that is extremely itchy and painful when in the sun)
*Memory loss ( more short term )( forget thoughts or words)
*loss of concerntration
* A change in vision( blurryiness, sensitive to lights, UV lights to be specific)( i cant really wear contacts anymore or my vision just BLURRSS all the time)
*eye pain and cluster headaches
* Pretty much always cold- my hands, feet, and nose are always freezing. Im always freezing in my house when its 72degrees)
*Shortness of breath
* chest pain
* higher heart rate than usual ( ranges from mid 80s-high 90s)
* Joint pain and stiffness( hands actually get stuck closed and ill have to open it with my other hand- not painful thou)
*Tingling in arms when I use them( its really a struggle to do my hair in the morning half the time)
* muscle weakness
*moodiness, slight depression( just an overall change in my mental state)( i feel like a differnt person)
*hair loss( i was developing a baldspot for awhile but now it seems to be ok but my hair is everywhere!!!! so much comes out in the shower and when i blow out my hair and straighten it)
* When I move semi-too fast or just at a normal speed really- like getting off the couch or out of bed i get dizzy and my vision goes fuzzy
*increased sense of smell ( so sensitive to chemicals and fumes)
* burning sensation on my ears and face ( sometimes they turn red)
* Itchiness on the sides of my ribs( no rash or anything)( doesnt go away with cream)
*possibly butterfly race ( quite faint sometimes thou)i just started noticing this about 2 weeks ago and its only happen twice)
* i just basically cant do anything i use to anymore because it leaves me short of breath or leaves me arms and legs tingly and tired) (walking up stairs, cleaning, basic everyday things are a struggle)
Now ofcourse this all didnt hit me one day when i woke up... i felt like i developed a new symptoms sadly every month. I honestly felt like i was dying. Now that im getting use to everything im just fustrated and "dealing with it". Ive had blood work done numerous times but nothing seems to show up in it. My PCP that i am currently seeing thinks that it could be MS or Lupus and wants to rule it out by getting an MRI and seeing a rheum. However, I lost my health insurance in December and didnt get the chance to do so... right now im working on getting affordable insurance so once and for all hopefully i can get a dx and meds and start feeling better.I know some sort of Autoimmune disease runs on my moms side of the family bc unfortuently my mom suffers from siimliar symptoms as well as my sister.. but none to the extent of mine. Im hoping that maybe getting your opinions will help my fustrations. Im currently living with my boyfriend who has cystic fibrosis, and my current condition is making it hard for me to help him out. I feel worse then him most days!! Anyway IM SORRY about the length of this!! I hope to hear from all of you. Thanks in advance!
Welcome to WHL! Yup, very familiar story. I and many others on this forum can relate to many of your symptoms, right down to having family members with similar symptoms. We're not doctors, so we can't diagnose, but I would say that you have good reasons to see a rheumy. I had to keep getting blood work done and change rheumys before I got a dx of Mixed Connective Tissue Disease. Hang in there, and keep insisting that the docs find something. You know your own body, and you know that something is wrong.
Feel free to read any threads that interest you and read the stickys - they are full of information. Arm yourself with lots of knowledge before you see the doc again. Also, come chat with us whenever you like. Many of us love to talk.
Good luck with the insurance issue - I hope that you can see a rheumy soon.
Hi Ivana! I was diagnosed with SLE and APS in 2004. I have a lot of your symptoms. They come and go. I was never really sick until I moved to Nevada after 1995. One of the first symptoms was really bad migraines that would come and go. I was an avid mountain biker and I started gettting really bad migraines the kind with the visual problems. I would also know when I would have one coming on because my vision would start messing up. It was as though, I was looking through one of those kalidescopes. I never thought much about it because the migraines went away. For many years after that, everything was ok. I started noticing some joint pain. One day I noticed that my thumb was really red and swollen. It felt like it was going to explode! I wondered if I had smashed it and forgot about it. It went away, so I didn't worry about it. I did start noticing joint pains in my wrist, but thought it was related to my job. Then in 2000, I developed pnemonia. I was hospitalized for 8 days. Eight months later, I got pnemonia again in the same lung. They ran all kinds of test, CT showed a mass. I had a foreign object removed(doctor never told me what it was) No more problems until I developed a blood clot in lower right calf in 2003, then another one in the same leg a year later. This time the doctor ran more test. He told me that he thought I had lupus and APS. He wanted me to see a rheumatologist to confirm the diagnosis. I went, but the guy was a jerk, he said he didn't think I had lupus and to come back in 6 months. Well I never went back to him and just kinda of lived in denial. I stayed on blood thinners to prevent anymore clots.
For the next 3 years, I lived with more pain in my joints than before. It seemed like it was getting worse. There was days when I felt like I couldn't walk and I would cry. The joint pain would always move from my fingers, wrist, elbows, knees and ankles. The ankles were the worst because it was so hard to walk. I remember one Christmas feeling so bad and depressed. I finally decided to go to another rheumatologist in 2007 and she confirmed my SLE diagnosis. She told me I had a mild case of it. She didn't put me on any medications in the beginning. I started taking Plaquenil at the beginning of 2009, and it has really helped me.
I would recommend that you go see a rheumatologist to confirm your diagnosis. They are really more knowledgeable about autoimmune diseases. My symptoms come and go and can be different every time. I just got over another bout of pnemonia this Christmas. I guess the positive about that is that I went for 8 years from the last pnemonia. Chest pain and lung problems are common with SLE. I sometimes get the chest pain. Feels like burning and it's hard to breathe. That is scary. I have had that probably about 4 or 5 times in the past couple of years. It never last more than a couple of days though. I have ALOT of problems sleeping. I usually don't get more than 4 to 5 hours at one time! I really hate this because I am so tired. I deal with alot ofanixety and depression.
I hope you can get some answers soon, it did help me to finally learn why I was sick. Dealing with a chronic illness like SLE is very hard, but it can be managed with medication and treatment. Hang in there and know that your not alone! This site is great for providing support and valuable information.
God bless you!
H & welcome Ivanna & Jennifer!
I can identify with most of your symptoms. Like you Ivanna, I don't have a Lupus diagnosis (yet) but I do have a history of autoimmune diseases. You have found a wonderful little corner of the cyber universe here. A place were even talking about your BM's is not TMI b/c we all understand how important those "little" details are.
Living with AI disease can be very frustrating, frightening, overwhelming and depressing, but WHL helps offset most of that with help, encouragement, understanding, support and love. It's a one-day-at-a-time kind of lifestyle (having an AI disease). Ivanna, I applaud you for seeking out insurance. When you fill out your application for medical insurance, know ahead of time which diseases are exclusionary to the company you are applying for. Not being dx yet is better in your case since you might be able to get your insurance without having a "pre-existing condition". Make sure you speak with your dr about what your medical records say. Health insurance companies can be really creative with how they spend their $$$$ and are always looking for ways to save less (like excluding care for pre-existing conditions). Talk to your health insurance broker to work with them for the plan that is best for you.
As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.