View Full Version : Currently Seeking a Diagnosis

05-13-2013, 08:29 PM
Hello! I am new to this forum and looking forward to bieng a part of it. I am 39 and a mother of 3 that has been struggling for some time now. I have been sick for at least 5 years now with what I believe is Lupus. Five years ago when I first went to my primary care doc telling him of my fatigue, joint pain, low grade fever, heat intolerance, night sweats, hair loss, and many other symptoms he said he believed I was suffering from the epstein barr virus. A year later when I was still complaining of ridiculous symptoms he diagnosed me with fibromyalgia. The following year after that I was diagnosed with hypothyroidism. To this day I am still miserably sick and my symptoms are more numorous than they were 5 years ago. I have noticed the last year that it seems as if what ever is going on with me coincides with my menstrual cycle. It seems to flare up most when I am ovulating.
I was tested by an allergist a year ago who told me that everything he tested me for came back negative and that I have no allergies. However, at times when I feel as if things are really flaring up I feel as if I am having the most severe allergy attack. My eyes burn and my eyelids swell pretty bad, clear dripping from my nose, odd burning/tingling in my nose/throat, and my ears feel like they get really hot or are burning. For the past two months I have started to have the most ridiculous burning and tingling deep in my tongue and my lips. It feels like they are burning fire and at times it is completely unbearable. I am wondering if anyone else has experienced this type of feeling?

05-14-2013, 02:54 AM
I'm 39 and a mother too (I have 5). I understand the frustration of living so long without a diagnosis or without one that fits. I was ill at 17 and since then I've been diagnosed with M.E., luecocytoclastic vasculitis and now Lupus. I know it's hard living under the shadow of uncertainty, knowing that you 'aren't right' but uncertain that any doctor knows what they're talking about anymore.
I found that I just had to take each day as it comes, tho its always been hard for me to make decisions, plans and commitments. I've been finding it hard to accept that I have lupus since I've been used to living with my own diagnosis and waiting to get better and start my life again.

The people on this site are lovely. Sorry to hear you're so poorly. Xxx

05-14-2013, 03:27 AM
I have only just been told I have lupus and have similar symptoms.
I was poorly for a year being sent to different doctors and given every pill. Although knowing I have lupus is hard it also more comforting knowing what's going on with my body. You just have to take each day it comes with this disease. I to find I get worse when my menstrual cycle begins and I hate that time of the month. It's hard and understanding why is also harder. I hope you find out exactly what you have soon . People on here are extremely helpful.

Good luck Sarah xx

05-14-2013, 05:15 AM
Thank you so much for your replies. Jaynie I agree with everything you said, especially the part where you said its hard living under the shadow of uncertainty, knowing that you 'aren't right'. It makes me so sad, I have been telling my best friend for years now that I miss the old me so much, the me I was BEFORE I became sick. I have just recently told her that I have officially given up hope that the 'old me' will ever show her face again. This illness that has taken over, and taken ahold of my life, and my body, is the me that I am left with. I was very ill in early April and had to go to the ER, the ER doc told me based on my symptoms he believes I have lupus, hearing a doctor say those words for the first time in what seems like forever made me break down and cry. When I go to a new doc I never tell them my opinion at first, I wait to see what they come up with. After I was in the ER I was referred to an Internal medicine doc and at my first appointment with him earlier this month he said without a doubt I believe based on everything you have told me that you have lupus. He referred me to a rheumatologist and my appointment is May 20 so we shall see what the rheum says.

05-15-2013, 08:29 AM
I am so sorry that you have been dealing with so much! Many of us found that we were relieved to finally have a name for what we've been suffering from for so long. No one wants to have a chronic illness, but if we do, at least we know that we are not crazy and that there is a name for our illness.
Like you, many of us have lost "the person that we once were!" However, the important thing is that we do not lose the capacity to find "The Person Who We Can BE!" We fondly refer to it as "the new me". This is the person who is an advocate for their own health care, a person who learns as much about the disease as he/she can, a person who makes the appropriate lifestyle changes in order to manage our illness and to prevent flare-ups, a person who finds a reason for joy each and every day, a person who does all that he/she can to make "the new me" the best "me" that he/she can be.
Please know that each and every one of us here at WHL are here to help you to accomplish these things. We all care, we understand and we will help to guide you with answers, advice, and information!
Welcome to our family!

Peace and Blessings