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Negative test results

Jul 04, 2017 11:40 AM

I'm wondering if anyone else is dealing with this, and if you are, maybe we can commiserate.

I've been sick for six months. Stabbing, gripping, unbearable pains in my ribs mostly, but also throughout my abdomen, chest, back, and shoulders. The longer it goes on, the more of my body hurts - armpits, elbows, full arms, now down into my legs and up into my neck. I've had fevers regularly, and my blood pressure is through the roof. I'm a 29 year old woman, and I've lost almost 50 lbs in 6 months.

I've been in hospitals in two countries, and they always run the same tests - CT, ultrasound, endoscopy, full blood screen, urine analysis. Every time, the doctor comes in to give me the great news that the tests came back totally normal - there's nothing wrong with me! Except that I'm laying in front of them writhing and screaming in pain - debilitating pain that means I can't do my job anymore, that means I'm scared to eat, that puts my blood pressure sky high until I have spells of disorientation and confusion.

And the doctors are always so happy, and I'm am always so angry. They see me get upset to get negative test results, and then they assume that my issues are emotional - I'm a hypochondriac, I'm med seeking, it's all just anxiety. I got sick 6 months ago. Before that, I was a respected academic and professional. Now, I'm suddenly a woman with emotional issues and negative test results.

How do you all deal with this? What coping mechanisms have you developed to get through undiagnosed illness? I could use any advice you've got.

Jul 04, 2017 2:40 PM

I refuse to give up on finding a diagnosis, I will run every test covering some of my symptoms before I say it's related to my mental Illnesses

Jul 04, 2017 3:38 PM

First thing you need to do is write everything down, not just your pain, what level it is and how it makes you feel but what you was doing leading up to it or what your having to do to "push through" to get your basic needs met like toileting habits, eating habits, sleeping habits, what meds you take and when you take them, when you go out if you can, even down to the good moments when you're able to eat, find something funny, etc.... the more you can journal the better.
Also you need to do some research on your symptoms, look at what can cause them....remember that being in that much pain will also cause depression and anxiety.
Go to you doctor and give them everything you have....journals, possible diagnosis and ask them questions, write them down in case you forget when you go in to see them. If they aren't giving you any satisfaction about possible conditions/illnesses then ask to be referred to a specialist who may have possible diagnosis and research them to find one who you think may know.
No matter what keep that journal going even if you can't write it yourself ask your partner/roommate/friends/family to write what they see and what you tell them. The more you have the more chance you'll find out something.
And don't let your doctor fob you off, keep going back to them, ringing them or find a more compassionate doctor unfortunately too many of us have been and still are in your shoes, I wish you luck on your journey through this hell and you find the answers that will help you to either cure whatever the issue is or manage it to give you a better, less painful quality of life.

Sending you positive vibes and warm healing hugs xx

Jul 04, 2017 4:55 PM

Thank you. I appreciate it. I have already had my gallbladder out to no avail, and had to give up my job in the U.K. and return to the US to be near my family, as I can't really care for myself with this pain. I'm seeing specialists and GP here, but everyone keeps telling me I'm fine because of negative tests, and my pain and symptoms are getting worse. I've journaled everything, maintained my pain reports, bowel movement and menstruation reports, everything I can do to bring them data. Every doctor I've been to yet has either laughed at me or refused to look at them. It's infuriating. I'm losing the entire life I've built for myself, and in constant debilitating pain, and they won't take it seriously. Just wondering how everyone else deals with this. It seems impossible to get through.

Jul 08, 2017 1:02 PM

I'm so sorry. It is truly awful. I don't have any suggestions.
I understand your frustration. I too have been dealing with chronic pain, fatigue, muscle spasms, etc for 6 months & all tests are normal or expected age-related changes on MRI, aka "normal".
The loneliness & despair I feel has gotten worse in the last couple of weeks. I don't know what to do anymore except seek others in the same condition& hope we can help each other cope when no one else cares or understands.
Best wishes.

Jul 08, 2017 3:59 PM

Thank you for responding. If none of us have answers, at least it's somehow comforting to know that it's not just us. I posted a blog about my experience, and I got more than 30 private messages of people I know - friends and family - sharing their stories of similar health difficulties. It's sad to know how many people go through this, but helpful to see people who came out the other side, who are living full lives - I never knew they were sick.

Solidarity, my friend.

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