Tuesday, January 25, 2011

To Those in the Process of Diagnosis

I'm still in the process of diagnosis.

It's been 12 years.

I'm tired of it.

If I was starting the process over, I think my situation would work out a little differently.  Information about fibromyalgia, celiac disease, gastroparesis, chronic fatigue syndrome, and autoimmune illness is abundant on the Internet these days.  I would have likely been able to narrow my symptoms down, and may have had less worry. Mind you, many of the symptoms are quite vague, so a monumental amount of testing would have had to occur either way.

For those who are just going through the process now, I recommend:
  • Patience. Illnesses build on top of illnesses.  It becomes a full lifestyle change.  It's a list of changes that is incredibly hard to accept, but they are necessary all the same.
  • Keep up on your medical research.  Not all doctors have the same amount of knowledge on certain subjects, and as someone who has taken unnecessary medication for my illnesses, I recommend keeping ahead of the game.  However, I let the doctor lead, as I've run into too many doctors whose egos rule the appointment.
  • If at all possible, get a second opinion.  That way you can be quite sure the diagnosis is right and be more confident in your treatment.
  • If you suffer from brain fog, try to bring someone with you to the doctor appointments. That way the information is doubly enforced.
  • Try both natural and pharmaceutical treatments.  Learn what works for your body.  The sooner you know the sooner you can ease the pain.
Hopefully these tips can help the newly ill and/or diagnosed in their struggle ahead!

Wishing you all the luck in the world,


Baffled said...

Thanks for the information. I've been struggling with the whole medical thing this week. I just got my fibro diagnosis last week and I suspect I have CFS but I am still in the middle of all the endo testing. No one seems to know a good CFS doc around here even though I'm right outside of Boston one of the medical capitals of the world. It is very frustrating. Particularly since the FM is launching into a major flare and I can't exercise due to the other stuff that is not working with my body right now.

Anonymous said...

Baffled - don't rule out the importance of diet in FM - sometimes by testing for food sensitivities (MRT-LEAP best for this) you can regain a lot of function - doctors don't give this enough credit but many FM patients can get their lives back by the right kind of elimination diet and then additional integrative therapies after that. Start with food, you'd be surprised how much it matters.