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Old 10-02-2012, 03:23 PM   #7
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Re: constant pressure in head/neck, chronic pain & fatigue, weakness, etc.

You don't have to thank me, I am sorry we are going through this It was nice to read your posts as well! I was the exact same way when all of this first started with me. I am glad you have been successful in composing yourself - I have found that it helps. I was pretty shocked and really very ill at the beginning, I tried to do everything I normally do in my life and tried to hide my illness from everyone but my doctor. That really did not work in my favor though. It wasn't until I realized I wasn't getting better overnight or ever on my own that I really broke down. It just became harder to hide as I became sicker, and everyone including my doctors and family just assumed that the psychological part was getting worse instead of the reality that the physical illness was getting worse. I then became really upset as the illness began actually interfering with my life and I couldn't just ignore it. The actually admitted me to the hospital for a week as I was so sick with elecrtolye imbalances, low blood pressure, nausea, swollen joints, etc. but the doctor I saw for followup after I was discharged was the worst doctor I have ever met. It seemed like all of the sudden when I needed them the most the doctors decided to as you put it "poo poo my symptoms away due to stress" and I was left with no real followup or hope and I really felt like I was on a sure path to dying. Overall it sounds like you have had more useful and unique tests than me in a shorter time so that is good! I hope that people keep paying attention to you.

It is really frustrating to be struggling with the system and all of these non-believers when we are also struggling so much with our health - I totally understand where you are coming from. There is absolutely nothing fun about this.

Do not be afraid to go to a psychiatrist or a counsellor. I hope that your doctors will appreciate it because I think it sends a sign that you really do want to get better - from all of your symptoms - no matter what the cause is. They also may take more risks in testing you for things as they know that you have support should they find something scary for people our age. I think that most of the doctors do care - they honestly don't want 20 year olds to be so sick - but I think that their fear about finding something serious or potentially causing us more problems through complications from tests or procedures really holds everyone back from getting real answers in any sort of timely fashion. It is actually proven that young adults have the worst cancer prognosis - worse than pediatrics and worse than geriatrics. We are really a forgotten demographic in the medical world.

I hope that you can find a psychiatrist that is not medication focused. Be completely honest with the psychiatrist right from the start about what is going on, what you think and feel and what people have been saying (especially your doctors). Say that you do not want medication, tell them what you told us. No one can force treatment upon you unless you are a potential harm to yourself or others. I told mine that I do not want to try medication because I do not want it to confuse any test results and I do not think that I could deal with any additional physical symptoms from side effects. Psychiatrists have the same first 4 years training as other doctors - so they do know a bit about medical tests and medical conditions and may have some of their own insight as well. They can either help you learn or refer you to something like mindfulness meditation or cognitive behavioral therapy to help you deal with the stress of all of this while your other doctors are hopefully helping you to get answers.

Hopefully the rheumatologist will have some answers for you, or at least a direction you should go in. Unfortunately many of the rheumatic illnesses take years to diagnose and the tests are not all that sensitive. I hope your life turns up soon I will be hoping that your appointment goes well! Thank you for thinking of me also!