View Full Version : feeling lonely

11-13-2011, 05:14 PM
I am new to the site. Haven't officially been diagnosed with anything yet but have been hit with a bunch of tests, etc. I have seen a dermatologist without much to say and see a rheumatolgist next week. I feel very frustrated, scared and alone right now. I have a wonderful husband who is completely supportive, a family who has their own problems to deal with and friends who just don't get it.
My story has been a long one. I am someone who doesn't get sick often but always gets the random things. I have vitaligo, a vitamin D deficiency, ovarian cysts, GI issues, chronic allergies and have always been sensitive to the sun. I have been diagnosed with Androgenic Alopecia and wear a hair system because of it. It hasn't been until recently when I went on a vacation and came home with these weird rashes on my arms. Went to the doctor and she wasn't sure what it was. She put me on a steroid cream which after a few days of cracking flaking skin, the rash disappeared. She suspected something more of an autoimmune disorder based on my history and sent me to a dermatologist first to look at the pictures of the rashes which didn't help anything since he couldn't look at a picture and tell what it was. Since the vacation my life has turned upside down health wise. I am dealing with fatigue, muscle aches, unexplained itchy skin. I have memory issues and anxiety. I have had mouth sores and most recently dealing with chest pressure and heaviness. At night my face turns red on the cheeks and forehead and I feel in general achy and sickly, mainly at night. My bloodwork is normal with a very mildly high CRP. I had a chest x-ray today which indicated inflammation in the lungs and was put on an inhaler. My heart looks good and the EKG is negative.
I don't know what is going on but needed to vent to someone who could maybe relate or at least understand. I am 31 years old and am very scared that this could be what my life is now. If anyone has any input it would be great. Glad to know that places like this exist. Thanks.

11-13-2011, 05:27 PM
Welcome! I hope you find that you are not alone! We here are here to listen, chat, understand, really understand and arnt judgmental. I hope you have fun reading here. Try not to self diagnose take each day on it's own merit and look for the positives is all I can say to help. Have a read of the new posts, Stickies, and topics that may help you feel not so alone. Keep us posted and have as best of a day as you are able and look at each positive. Good Luck! We are here at all times of the day as we are all around the world!

11-13-2011, 07:29 PM
Welcome to the forum and I hope that you can find answers here which will help you. You are not alone - most of us started out with "weird" symptoms and no definitive diagnosis. It took me .....(uhm, wait a minute, my brain fog is kicking in and I need to figure this out, lol)....it took something like 4 years before I got a "final" diagnosis and all that time was filled with going from one doctor to another. But it will come, just hang in there. Keep a diary and write down your daily symptoms/body aches/changes, etc., no matter how small or strange they might sound. What may be inconsequential to you may make a lot of sense to a rheumotologist. No matter the diagnosis, you can survive this and even thrive - we'll all be hear to support you and help you through it!

Again, welcome! and hope to talk to you soon,

11-13-2011, 09:43 PM
welcome whl and you are not alone anymore you have us to vent your frustrations

11-14-2011, 04:20 AM
hi goonie,
i wanted to add my welcome and say you will never be alone.
please read a few threads, they are our personal experiences.

welcome to our cyber family.

11-14-2011, 04:32 PM
I don't have a definitive dx either Goonie. Mine started with the rashes as well. I still get them, but never when it's time to see the derm. Also my symptoms wax and wane and I seemed to be in a "remission" type state over the last three months, altho I can feel the joint pain coming again and as per usual, it was preceded by a rash. My symptoms seem to be worse at night, but I really think that's because I am sitting quietly and watching TV or reading so it's more noticeable.

11-15-2011, 08:51 PM
Hey Goonie, welcome to the forum. I'm tryin' my hand at typin' and thinkin' and makin' sense all at one time, and it probably won't come out right, since it's been a while since I tried to "converse" with someone on here. But...

You're def not alone, especially in the "I don't know what it is" game from the docs. But also in the fact that there are all sorts of folks that are here all the time that know *exactly* what you're going through. Vent to us. I spent the better part of 20 years going from one diagnosis to another, dependant upon which doctor I was talking to. Supposedly (2 out of 3 doctors agree...), once you're RA positive, you're always RA positive. Not me. I've been ANA positive and not - or more specifically - borderline or "non-descriptive" (along with various other test results) more times than I care to remember. (All I can say, is it's a good thing you're not here to see me "type" this thing... I have to go backwards almost as much as I do forwards with these keys anymore... lol)

Anyway, one big thing to get checked is your thyroid, especially since you mention low on vitamin D. Don't let them do just a TSH or maybe adding in a T3 test. You want the whole she-bang with T4 and lipids, CBC, etc. You want to know the funtionality of your thyroid, and if it's been hammered by something, what that something is. My guess would be auto-immune of some form is what you're dealling with. Don't let the docs poo-poo your aches and pains, or your "feelings". Express yourself to them. Take someone with you to the doctors' office visits - to the exam room - for back-up and another perspective, and write things down. You could also ask the docs to print you out their reports. It's your records, after all. I've got one doctor that wants to charge me a nickel for each page. I argued with him, but pay for them anyway, 'cause I want them for reference. I forget more than I remember within five minutes of leaving the office, and when I've had a few issues over the last few months, I don't remember NUTHIN 'cept what my wife has told me - and I believe her too!... lol - I'd better, eh? tic. Anyway, take care, wishing you well, and lots of prayers.