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Internet medical advice are a bad idea, but.....

Something has been eating me for the last few years. The doctors can't seem to find a cause and I'm getting desperate and tired of just taking more pain-meds as I turn into a prisoner of my own wasting meat.
So, if this sounds familiar, feel l free to share.

Extreme fatigue.
Dizziness, problems with the balance.
Memory problems. An inability to focus.
Stabbing headaches, pain in the right eye and throbbing pressure over the right side of the face and temple.
Sensitivity to light.
Irritability and mood-swings.
Pain the chest, snaking around the shoulder, neck and then down in the chest again, which doesn't really respond to movement - it just lingers there.
Occasional shortness of breath, from no remarkable activity.
(the weight loss could simply be the result of spending 99% of my free time tying to rest)

In simple terms it feels like I got very drunk while having a fever, then someone bashed me over the face with a bat and I'm trapped in the of the seconds right afterwards, stretched out for days or weeks.
I can't wake up.

The symptoms are verging on chronic. Most days, if I work one hour, I need to sleep for at least thirty minutes or risk passing out, again. (fortunately I have an understanding boss who hasn't fired me, yet)
Used to work full time. Now I fail on a regular basis to meet the quota of half-time. (like I said, I have an understanding boss)
On the rare days the symptoms ease up I can still run for nearly two hours, or work a normal full-time day without taking naps. But those days are getting fewer and further apart, and my recovery is slower.
At this rate I'll be hospitalized by 2020.

Ring any bells?

MLinoge 7 Jan 8
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5 comments

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1

Any scans yet(MRI and CAT)?Tumors may be some of the causes,just a guess....

1

Hold your doctors accountable! I can remember my mom complaining about stuff. When I asked her what the doctors said she would give me, "They always want to just rush me out without telling me anything!"

I started going with her and I saw immediately what the issue was... She wasn't asking questions! She wasn't holding them accountable. Doctors can't guess how you feel. Get in their face and demand information. Make sure they communicate with each other. Hold them accountable. If they fail... Find a new doctor.

You are your own patient advocate!

1

I have a friend with Ehrler-Danlos & POTS. She has some of those symptoms. I think you can learn about those disease on a Facebook page called The Mighty. She's a member there. There are a lot of other rare diseases like those. Have you been checked for Lyme Disease? I'm sure you have...

Carin Level 8 Jan 9, 2019

Read up about it. Got myself a home-test for Lyme disease. Positive.
Home-tests are not 100% reliable but it's worth bringing up with the dear doc.
Thank you.

3

they need to do a complete immune system workup, with an eye toward sle (lupus) but an open mind (could be almost anything, from a brain tumor to a thyroid problem). the main problem is usually getting the doctors to share information and look at the big picture. you need an eye doctor, an immunologist, a rheumatologist and a sleep study. you need ONE doctor to COORDINATE what everyone else finds, and if that doctor says it's all in your head, you need a new coordinating doctor.

g

Now THAT is good advice!

1

No one here can responsibly give you medical advice. If your doctors are not finding anything, be persistent with your complaints. Document your concerns in more detail. Request specialist referrals if indicated to evaluate specific symptoms. What you have provided could be related to a bazillion different issues as well as multiple separate issues at one time. We have a saying in our practice that even people can have ticks AND fleas, meaning there is not always just one cause to a set of presenting symptoms or diagnostic findings. Be persistent, and good luck.

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