I am just so sad for you dear. You have been through an incredible amount of trauma over the past years. I have also been through similar issues--but they kept saying it was due to a pituitary tumor I had because it causes crazy hormone changes. I had two surgeries to "resect it" or remove the tumor and it is not very big now and I even had a pregnancy where I had my first child (had miscarried before) and so it was a good sign the pituitary was better. Yet I also have dealt with the severe debilating migraines/vomitting for years. Even my husband doesn't bat an eye anymore when I wake up vomitting daily. It has become a "normal" part of life. After my baby came my arms and legs went completely numb with a wierd prickly feeling in them all the time. I was extremely dizzy (felt drunk) and had a bad ringing in my ears. It took almost 5 months and a heap of steroids before it got better. I did not know what was happening to me and had a newborn to care for and was extremely frustrated. At one of the most special moments of my life that I had dreamed of my entire life--I was too sick to "enjoy" it. But then it just magically went away. A couple months later my stomach bloated out (over last summer) and we were working on fixing our new house--doing a lot of construction so I was out in the sun a lot but did not think twice about
it since that's what we do for a living! But then the numbness and tingling in my hands and feet have never completely gone away and then gradually I started getting a very excrutiating pain in my central pelvic area. It turned out I had Interstitial Cystitis. I am just now starting treatment for that after a slew of tests (GI, colonoscopy, endoscopy, cystoscopy, laproscopy, etc.. etc..) and I am grateful for this, but I still have extremely swollen glands every where (around my neck, underarms, groin) and very painful joints (especially my wrists and ankles), and definitely have a malar rash as they call it which gets much worse under 2 conditions: stress and going outside (even on cloudy days which is illogical to me why)?! But anways...there is a host of other complaints I could list including lumps popping up everywhere on me that they continue to remove as they show up and have never been cancerous or dangerous--just in the way...
When I read what you went through though, I just completely felt for you and wanted to cry. I can completely understand your frustration. As soon as one symptom is gone, the next one pops up. And then you feel like a total idiot going to the doctor saying: oh, by the way, I am doing better with this but now that is a real problem for me. And never could understand why or what was wrong with me. I have not been tested for Lupus. I don't know if I have it or not, but finally last week I started going online at my husband's advice to look for a support group for the IC which has a very strict diet and treatments I am starting and I have been incredibly frustrated over everything with it. One person there said that often IC is secondary to Lupus and that many of my symptoms sounded like Lupus. (Not that I am trying to "self-diagnose" here or anything either!!!) But it rung a bell when the only thing that has ever consistently helped me is ... you guessed it... corticosteroids!!! That was what helped me last spring with the bad episode of whatever I had and they did diagnose me at the time with "an autoimmune reaction of unknown etiology" but that doesn't help much to have a "band-aid" diagnosis when you are in extreme pain daily and trying to function. I am not one to sit still, go to bed, or stop for any reason so I think that also confused the doctors why I would not quit school--they kept telling me to---but I am working on my doctorate online right now and despite how painful it is to type--I am determined to finish up!!! I don't care what is wrong with me, what the diagnosis, I am going to get better because my now 15 month old son needs me to provide for him and be there for him. I am very grateful and thankful for an incredibly supportive husband as well, but I also feel like you at times that I don't want to talk about
it too much because it gets so old "moaning and groaning" about
all these issues and don't want to make him get sick of it. Periods are extremely painful for me and heavy. Migraines frequent. My ankles are bruised all the way around them and swollen from just trying to walk around the house yesterday to do a little laundry and dishes.... no huge housework either--just that little bit of stuff. I have to keep them up a lot now during the day just to be able to walk on them.
So far blood testst the doctors have done have all looked "great"... but I did notice my RBC count is on the very low margin and my WBC count is on the very high margin....right on the limits themselves... so I don't know if that even is lupus since I read that it makes your WBC's low! But all I do know is that this is something that regardless of whether I get a diagnosis at this time or even in my lifetime, I have to live with. I am just trying to keep a sense of normalcy in my home, keep up with housework, working as much as I can, and my college work. Some day--something has to give. I am going to ask my family doctor for a bloodworkup, but I guess I am also scared that too will show that it is all "great" and then what?! What explains all these symptoms? My neck is so sore from the swollen glands that it is hurting into my ear and I cannot even lay my left side of my head down on a pillow it hurts so bad from 2 swollen lumps behind my left ear that have turned really hard-feeling like bone.
I just want to share all this with you so that you really DON"T FEEL ALONE. I don't want to burden you further with my own problems either, but know that it has helped me a lot to see there are many out there who are dealing with similar issues that we have--symptoms that come and go with NO explanation for them, problems that continue and continue, and worst of all--feeling just terrible the whole time with no real explanation for it. <snip> I just need to turn to God and I'll be better and give me a blanket excuse for dishing me off and not caring anymore--trust me---I know that feeling... that is not what I am describing here though. I am describing to you that at times like this we can find comfort in knowing that although NO ONE ELSE may understand what we are going through, physically, mentally, and worst of all--emotionally for all the trauma it causes not knowing and why no one can explain to us what is wrong with us-- we can know that <snip> So I am with you in understanding what you are going through and cannot tell you enough again how sorry I am you are going through all this. It is not YOUR fault!!!! <snip> it may be that your story may save others like me from reaching complete despair about
our own situations because we see how strong you have been and how you have not given up!!!! So please keep your courage up. All the best and my prayers are with you sweetheart!!! Nicki (Btw...I am also 37) [img]/community/emoticons/yeah.gif[/img]
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Post Edited By Moderator (Lynnwood) : 3/28/2011 10:12:49 AM (GMT-6)