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 April 12, 2009, 03:33:35 PM
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So I just got in a huge fight with my mom..She says that I need to stop "believing I'm sick" and go on with my life..Which I would love to do except I can't. She said that I will live like this until I die..looking for a diagnosis.. and the thought of this scares me..
She asked me what if I do all the tests there is, and they all come out normal. Then what? I don't even know that answer to her question. I mean, what if she's right? What if in the end, all the tests are normal...and I'm 50 years old..will I still believe something is wrong with me?
Should I suck it up and put this whole thing behind me? Live my life normally without anymore doctors, appointments..
I know I have an illness..I'm not the same person I used to be. Nothing traumatic happened to me, I was never abused as a child, but it happened suddenly one day, without any warning.
I don't know guys, I'm so depressed. I'm starting to think I'm crazy. Maybe if I think positive and try to leave this all behind me, maybe I can be "cured" later on. The mind is stronger than the body, my mom says.
Some things she said makes sense..but I'm not sure what to do.
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April 12, 2009, 10:28:23 PM
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Group: Administrator
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I Will Be Diagnosed !
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Sorry Jenny that's a bit harsh  you'd think your own mum would have a little more compassion and understanding...after all she's your mum.... Always, always Trust your own body, what's it telling you ? ? ? While it's all good to say "Carry on with life" somethings stop you from doing that ... PAIN While I agree to some extent that you do have to continue on with life the best you can until help arrives, there are parts of your life that will have to be left behind (for now anyway) The mind is stronger than the body, but the mind is listening to the body saying "Help" somethings not right. Just take each day as it comes, if you feel 100% there is something the Doctors are missing, then don't let anyone else make you feel bad for thinking that way, you're the one who suffers day in and day out, they have no idea of the struggles you go through. Are you booked in for a Colonscopy yet? Be strong Jen 
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April 18, 2009, 12:00:59 PM
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The amount of times i've heard that or "you just need a job" or "You just need a hobby" not to forget "You don't look sick". It's a bit hard to carry on when you have pain or problems. I know sometimes i will actually be sitting in a position where i think I'm not to bad, and thoughts of jobs, and fun come back and then i'll move and it all comes flooding back.
Tell your doctor how you are feeling if you can, Some days, it gets to me too, but don't put up with it lasting to long. If you are depressed the doctor can help you with that.
You wouldn't think it would be so hard would you, to find an answer. I know i don't care if there is a cure for me anymore (Though I'd truly love one), but just an answer, I'd settle for an answer.
(Then i'd get Jas to find me a cure, lol)
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April 20, 2009, 01:09:44 AM
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Jenny. You sure are having a rough time. Swelling sure sucks, Sure sorry you feel so drained, i hope it settles down soon. (((Hugs))) I get that smelling thing too, so does my mum, It's really annoying. We just presumed it was bad teeth, or something in the gut. Both of us seem to get it for a couple of days, then it'll go away for a couple of weeks. I seem to smell things before other people do, like toast, bbq's stuff like that.
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April 26, 2009, 12:26:50 AM
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Hey Jas, about the "smelling spells", I smell the same odor, except the intensity of the smell varies all the time. The smell is kind of hard to explain.. a metal/gasoline smell? It's one of those "sharp" odors you smell in a mechanic shop that makes you want to get some fresh air. Even outdoors in the fresh air, I smell it. It often leaves me VERY fatigued. After a long nap, it disappears.
I am 100% sure that the smelling spells, edema and fatigue are directly related to each other. Usually when the edema gets really bad, the odor intensifies. I smell it from "inside" of me..if that makes any sense.. When I breathe OUT through my nose, I smell it. Not so much when I breathe in through my nose.
I've noticed a cycle.. For 3-4 days following an intense exercise session, I notice is that my edema gets worse, I'm "constipated" (even though I have soft stool), and I have decreased urine output. Then the smelling spells start to show up, and then the fatigue..
After a nap, I feel less tired, and my edema slowly (but not completely) goes away because I'm starting to get more urine output. However, I start to get diarrhea that won't go away until I take an anti-diarrheal medication. Then I try and exercise again..and then the cycle starts again!
It was 3 years ago that I exercised one day all these symptoms started showing up. I think when I exercise, whatever I have gets worse or is triggered somehow. That's why I think that an MRI is necessary (not just because of my missed periods), but because my brain might not be responding to exercise normally..It also could be my adrenal glands too.
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April 26, 2009, 02:51:19 PM
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Hey Jenny I was just going to ask if you had been to an endocrinologist? to have your adrenals checked and your levels in the blood checked for cortisol and other hormones. Some of the stuff you say really hits home for me, not sooo much the smelling spells but I DO have heightened smell which sometimes makes me feel sick like a pregnant person. I have been like that for years. You also said you skin is getting darker? like is it getting tanner?? but without the tanning in the actual sun? The increased and decreased output of urine could have to do with the adrenals too. I am sorry your mom is not supportive. My family isn't all very supportive either honestly. Just like my doctors they think its all in my head. Sometimes I start to believe them and feel like i am crazy and do move on with my life and just say.. ok fine. I guess I just will PRETEND to feel normal and healthy since all my tests say so. I can only do that for so long and then I am back on my quest again to find answers. People unfortunately sometimes have a hard time being compassionate for things they dont experience and understand. It still is not fair to us but at the same time our loved ones maybe just upset because they want us healthy and they see us go through so much just to be told we are fine. Then they jump to the conclusions because its not thier body and they don't feel what we do. I have been undiagnosed or misdiagnosed now for almost 15 years but only actively searching for about 6 years. I may take "doctor breaks" for like 6 months but I won't give up. There is SOMEONE out there with the answer for me. This cannot be normal what I experience. There is no way that all different organs of my body are acting haywire for nothing and they DEFINATELY all or most have to be related some how. Trust your intuition and what your body tells you. Sorry this got long..  Take care of you
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**Kristin**
First Struck with Anorexia on and off for about 6 years beginning in 1993. 1995 Diagnosed with GERD, IBS, Anxiety. 2006 Diagnosed with CFS, 2009 Diagnosed with Sleep Apnea and Circadian Rhythm Disorder and Hypoglycemia. 2011 Diagnosed with Vitamin D Deficiency and Hyponatremia. But... why?! I think I am one step closer to that answer ON my own. Your are your own advocate for your health! No one can tell you how you can or can't feel!
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