Crazy VS Lupus
Hello, my name is Carrie, i am 31 and live in Oregon. My story begins in June of 09. I was 8 months along with my daughter Penelope, I was working and doing ok when i started to get dizzy. it only lasted about 30 seconds so i just went back to work thinking it was just another thing to add to strange things that happen when your pregnant. It happened one other time before i went on maternity leave. Penny was born on july 21st and i almost bleed to death, they have no idea why but i guess it happens to some woman and that's all they could say about it. The same day i had penny i started feeling strange, it was like i was walking around in a fog, like someone pulled a blanket over me that i could kinda see out but nothing seemed right, I couldn't understand what people were saying to me the info was going in but not making sense. I told the doctor and she checked to see if i was anemic from the blood loss, I was not so she had no explanation. on top of the fog I was very dizzy. I went home with penny and started having problems breathing, I was shaking, couldnt hold still, I was jumpy and still in this fog. I went in and the doctor told me I was having panic attacks. Ok i thought i can live with that, but they wanted to check my thyroid. I was 1 point away from having hyperthyroidism <sp?>. The doctor told me i needed to see a psychiatrist, so i did. He checked my thyroid again because the results were just one point away from being hyper and these tests showed i was very hyper, ok so i can deal with that im thinking yeah im not crazy, boy was i wrong lol. I went on BP medication to slow my heart down a little and a lot of different meds to calm my nerves. I was still dizzy and sick feeling so i went to see an ENT and he said he couldnt find anything wrong with my ears, see a psychiatrist, so i did. I just kept getting sicker, my hair was falling out, I had a strange rash on my legs and i had to be put on iron because for some reason 3 months after i had penny i was anemic. then they found fluid in my lungs, the doctor said it was from having penny, ok so the joint pain got so bad i could not use my hands much and it was hard to even walk oh and on top of the pain in my finger joints i had a strange blister rash all over my hands and sores in my mouth. my doctor sent me to a rheumatologist<sp?> that said i have joint pain with no swelling, i said yes i know and that's the last i heard from him. For a few months i started to feel a little better. The rash has cleared up and my thyroid is functioning normally now. They dont know why my body was attacking my thyroid but it seems to be ok, still unsure as to why i had so much chest pain and fluid in my lungs but they dont seem worried. as for the joint pain its never ending pain but my hair stopped falling out. I took large amounts of iron for many months to try and get the anemia under control, it seems to be helping. Am I going crazy or should i try to find a different doctor? I really hate the idea of going to the doctor and self diagnosing but really lupus is the closest thing i can find that resembles my symptoms. If i dont go then i could just continue to be ill, but if i do go and they are right i am just crazy then thats a lot of time wasted for the doctors. I can feel myself getting sick again at the moment, any ideas on how to stop it befor it gets out of control if it is lupus? anyway thats part of my story im sure i left a lot out my memory is shot. If you have any questions though im sure i can dig up the memories lol
Oh sorry one other thing that seems to be my biggest problem is the fatigue. Doctor says its from just having the baby. im not so sure of that though, i wasnt even this tired when i had my twins.
I am so sorry you have had such a hard time. I know that feeling when you know something is wrong but no one seems to listen. All I can do is keep educating yourself and going to the doctors. It takes a while for them to diagnose Lupus. That may be what you have and it may not be, try to find a doctor that will listen to your suspicions. I can't imagine having the pain, fatigue and trying to care for a newborn... I felt like I was crazy too. When so many things are going on and the doctors just look at you like you are nuts. For me my regular doctor actually suspected Lupus when he'd checked me for everything else (and I do have several other illnesses) he knew to check for. The bloodwork pointed to Lupus and he sent me to my Rheumy. I guess it took a year and a half to two years before it was a for sure diagnosis. Keep searching for the answers... its your body and no one knows whats going on better than you. The doctors won't know if you don't tell them. Best wishes, Congratulations on your baby that's a special gift in a little package! Take care, Billie
Hi Carrie, welcome to the Forums.
Your symptoms do sound like an AI disorder such as Lupus.
It takes time to diagnose this and many are very alike to eachother.
There are specific tests such as bloodworks says a lot and a skin biopsy, ...
Keep searching and dig for answers, I hope you'll find out what's wrong soon.And even better, get a diagnosis.
Best of luck and big hugs!
Hi Carrie, Welcome to WHL.
I have a suggestion, you might want to see an endocrinologist. I have Lupus, but I also have Hashimoto's Disease. This is where your body attacks the thyroid. I feel where a GP is great for overall sickness, the specialist is needed for understanding the labs. My Endo goes beyond the labs and listens to how I feel, even to how I sound. the symptoms you've mentioned sound a lot like a berserk thyroid. Mine went from overactive to being nonfunctional and removed.
Please take care of yourself,