Having an illness without a cure is a situation filled with dichotomy. You want to get better, but most of the time you can’t get better. You try things that you think will make you improve, and sometimes they make you worse. It’s hard on the head (to say the least!). This is a glimpse into my story.
At first, my doctors told me that I was crazy and that no such thing exists (especially regarding Fibromyalgia and Chronic Fatigue Syndrome…). I got referred to a psychiatrist, and can literally say that I have taken nearly every anti-depressant, anti-epileptic, and anti-psychotic on the market. Most of these drugs make me incredibly sick, and there is a marked decrease in bodily functioning from this point in my life forward. Alas, there is nothing I can do about that time period but leave it in the past, and continue the struggle.
Eventually, doctors and specialists came to terms that this behavior had been lasting for years and years and that more and more tests were coming back wrong.
Types of doctors I have seen:
- General practitioner
- Specialty allergist
- Pain Management Physician
- (soon to be) Endocrinologist
- OB-GYN (PCOS and infertility issues)
- ER doctors (of course!)
Honestly, I can’t even remember if this is all of them! I’ve also had nearly every test known to man done on me – bone scans, EEGs, ECGs, gastric emptying studies, endoscopies, colonoscopies, MRI’s, CT scans, bone marrow extraction, skin biopsies, epic amounts of blood drawn, etc…
Now, I have more of the answers. I have more diagnoses. But this doesn’t make life any easier, as none of these illnesses can be cured. I am taking an enormous amount of medication right now, that I am detoxing off of in the attempts to get to the bare minimum.
In addition to Fibromyalgia and CFS, I also fight some vaguely diagnosed autoimmune disorders, as well as a severe chemical imbalance in the brain. We are currently investigating a tumor on my pituitary gland that may be releasing its own set of hormones. I am also being investigated for Narcolepsy.
Even though the ups and downs of medication trials (as multiple chemical sensitivity means each new one could potentially kill me), I work hard to stay positive. I read positive things, I cultivate positive actions, and I try to live the lifestyle I preach. Sure I break down and cry. But like every other woman on this site, I am a fighter. I will not back down, and I will not let this get the better of me.
Do not let doctors boss you around my loves. You know your body better than anyone else, and you will know when something is wrong with it. Keep fighting until you get the help you need. It’s worth it.
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.