Hi everyone
I just wanted to share some of my story with everyone to see what your thoughts would be.Im a 20 year old female, I have been having symptoms for almost 2 years now and have not gotten a proper dx yet. I have ofcourse been researching the heck out of every possibility and lupus has been thrown my way several times. Some of the symptoms that I have been experiencing are:
* Fatigue( feel like falling asleep while driving)
*Brain fog
*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
* Migraines
* 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
*nausea( new)
*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)
The crazy thing about all of these symptoms is that they all never happen at once and come in flares. Ill have good days/weeks where I feel semi-normal and then ill get hit with a flare and not be able to get out of bed bc i just feel like crap. But i have just noticed lately that i feel like im getting worse. What ever is going on with me now just really seems to take a toll on my head and chest and vision really. Its kinda scary.
The thing that really drives me nuts about all of this is that i think an autoimmune disease runs in my family. My mom suffers from very similar symptoms as me as well as my sister ofcourse all of us are undxed and im the only one that is really determined to figure this out s my symptoms are alot worse and affect my life more. I know that my mom was briefly diagnosed with Rheumatoid arthirtis but then when they tested her again it didnt show up.. so im not sure on what to think.
I should say that i currently dont have health insurance. I am working on getting a decent afforable one asap. I lost it back in December but saw some drs before hand and tried to figure this out but ofcouse i got no answers. I didnt get a chance to see a rheum. which i was told to see. I work in a internal med drs office part time so i get to see the nurse pract. there which is great for free and they do blood work and anything else possible for me but there is only so much they can do .Everything in my bloodwork seems to comes back fine. The only thing that i did find out was that i carry a gene for celiac disease(HLA-DQ8(DQA*03/DQB1*0302)was positive. Lyme was ruled out. She really wants me to get a MRI of my head to rule out MS. Then see a rheum. and nuero dr to see what else can be done.. I was having bad GI problems in the beginning but that seemed to go away . The dr that i am seeing now possibly thinks that i could have MS but i have also read that LUPUS can mimic many things including MS and the joint pain and photosensitivity are more of a lupus symptom. Right now Im on Metoprolol(blood thinner) to help me withmy high heart rate and palpitations, the possible conditions that my DR thnks i have right now for the way I feel is either carotid disease( bc of my heart rate, migraines, and visual disturbances) which i dont think i have because it doesnt explain all my other symptoms or MS which could be possible but doesnt explain the joint/bone pain or skin issues. I was also wondering if anyone has had weird things go on with their skin. I have these small rough patches of skin on my arms that kind of feel like a scab and itch a bit. When the rough part eventually goes away it leaves my skin whiter in that area. I have a few of these white spots now on my arms. I have no idea what they are from. No amount of moisturizer makes them go away. Also, this past week I have noticed this reddish/purple blister looking mark on one of my toes thats painful to touch and itchy. I have no idea what it is at all! its not a bump or anything it seems flush with my skin but its just odd because its only on one toe. ALso a few eeks ago i noticed these small blood spots show up on my sides of my abdomen and on my arms but they seem to have gone away now too. I just feel a bunch of weird stuff is happening to me.. its driving me nuts!! IM sorry if all of this is kind of scattered but i guess you can say that another one of my symptoms. But anyway i would really appreciate any feed back from anyone that has been through the same thing as me. Thanks in advanced!!