For a year now I've been dealing with this crazy illness. I look the same on the outside but feel terrible on the inside, the symptoms have changed and become progressively worse over time and no one could figure out definitively what was wrong with me.
I'm going to try to list the symptoms in order of appearance, although a few did go away after several months either on their own or due to medicine prescribed by one of my doctors. Large bruises that I couldn't remember getting, chronic headaches, several migraines a week, EXTREME fatigue, depression, muscle soreness, severe neck pain (it feels like someone is strangling me all the time), tingling and numbness in my hands, coughing, shortness of breath, insomnia (mostly due to so much pain), joint pain all over, painful sleep (like someone is beating me up with a baseball bat while I'm sleeping, nightmares, pain sensitivity (even a small bump hurts a lot), scalp tenderness to the touch, muscles aches and pains throughout my entire body including the bottoms of my feet, intolerance to sugar/dairy/caffeine and significant memory and concentration problems (if I don't write it down and keep it in front of me I WILL forget it).
I'll try to keep the summary of my journey through the doctor gauntlet as short as possible: My primary care physician told me I was fine and they would draw blood at the next annual exam (10 months away) so I promptly found a new one in the phone book-big mistake. The second doctor ran some tests, got a positive ANA and felt pretty certain it was lupus, he did not refer me onto anyone else or have any answers for how to treat, he didn't even seem to want me for a patient so I visited my daughter's ENT and he also suspected lupus after ordering some other tests that only showed silent reflux. So this time I made sure to ask around and get a referral for a good primary care physician. While I do really like her and she has tried extremely hard to figure out what is wrong with me (tons of tests including blood tests, a biopsy and x-rays that have only revealed anemia and low vitamin D) she was stumped. She was able to write some prescriptions to help me deal with the symptoms, but ultimately ended up referring me onto a rheumatologist which is a six month wait in my area. In my desperation to get into a rheumatologist, I found one four hours away that could take me right away so I went to see her (with both kids in tow). She didn't seem very knowledgeable, didn't really listen to my symptoms and kept insisting it was most likely lung cancer (something we had already ruled out) and referred me for a CAT scan, which of course was clear. I did not return to her and waited for my appointment to come around here, it was a long wait. In the meantime, I adjusted my diet based on the book "The Anti-Inflammation Diet" which basically has you take everything out that could be upsetting your immune system and then once your slate is clean you add things back one at a time to see which ones your body reacts to. After several months I learned I couldn't tolerate any sugar, dairy or caffeine. FINALLY I had a full week and a half of feeling somewhat normal (I had energy and didn't crash at my children's naptime full of pain and fatigue). In my excitement and pent-up desire to clean I decided to spring clean my house and went hog-wild gardening outside. At the same time, the new year started and my doctor's office nurses were dragging their feet calling in my prescription refills so I ended up going 5 days without 4 of my 6 pills. One of these things, a combination of them or maybe something else altogether made me completely crash and has put me in more pain than I have felt in months. Very discouraging after I was finally making some progress.
Last week I finally got in for my rheumatologist appointment here and was thoroughly impressed with my doctor-she really took her time and listened to my situation, didn't brush off my concerns and also didn't jump to wild conclusions (like lung cancer when I'm not even a smoker). After some discussion and an exam she told me she felt pretty certain that I have fibromyalgia and that it's a lifelong disease that I will need to manage with medications. Since I didn't know anything about fibro I went home and started researching, only to find that what she said was correct you do have it for your life and it's only likely to get worse.
That answer depressed me more than anything, I could not imagine going several more months let alone my whole life taking 6-7 medications each day and still feeling like my insides were rotting. At that point I started to search for an answer, a cure, ANYTHING. I stumbled upon the book "What Your Doctor May Not Tell You About Fibromyalgia: The Revolutionary Treatment That Can Reverse the Disease" on Amazon and started to read the reviews. I was amazed that so many people who had lived with the disease for 20+ years (I don't know how, I would go crazy!) have been able to "cure" themselves following Dr. St. Amand's advice.
All I could think is, I have nothing to lose and I will try anything at this point so I ordered the book...(more on that tomorrow)