Chronic fatigue syndrome is the elusive "mystery" diagnoses within western medicine. It is often accompanied by fibromyalgia, another "mystery" diagnoses. The diagnoses usually have to be made by a rheumatologist, who typically cannot diagnose either condition without a great deal of testing by other doctors first. The rheumatologist diagnoses by a process of elimination through these tests, not by signs and symptoms. The reason for this is because both chronic fatigue syndrome and fibromyalgia are not understood. They are the names of diagnoses given to seemingly healthy patients (based on positive blood work, nerve tests, MRIs, X-Rays, and other tests) who complain of a constant lack of energy and chronic widespread pain.
I spent most of 2013 in doctor offices at the local hospital for various reasons: wrist pain, MRSA abscess, heart palpitations and chest pain, menstrual issues, widespread constant pain, allergies, brain fog, and plummeting energy. I didn't feel healthy. I felt pretty awful, and I couldn't necessarily tell what wasn't feeling right - it was just a general sense of not feeling well. I saw an internal medicine doctor (at the walk-in clinic,) neurologist, cardiologist, orthopedic doctor, allergy specialist, occupational therapist, ER doctors, gynocologist, and rheumatologist. Due to the extra long waiting list for the two local rheumatologists (what does that tell you about the city I live in?), I traveled out-of-state to see one. The simplified results, in general? "Idiopathic." I'm "the golden image of health." I was told by one doctor to see a psychologist, and she set me up for an appointment with one the very next morning, nearly forcing me to go. I didn't go, because I knew it wasn't all in my head. I had never been more insulted in my life (I have a great deal of respect for psychologists - I even worked for a couple and felt it was the most rewarding job I could have!)
I did gain a few things from these doctor visits, such as healing my wrist (temporarily, the same issues came back a year later,) finding out I do actually have arthritis damage and possible fractures, being saved from the worst possible pain ever that is a MRSA abscess in a location I do not need to disclose to you, getting recommended for a laparoscopy to confirm a diagnosis of endometreosis, finding out that my heart murmur hasn't grown any worse despite the heart trouble I've had, and gaining some helpful diagnoses. The diagnoses are fibromyalgia, chronic fatigue, depression, anxiety, and arthritis. Though these diagnoses didn't tell me anything I didn't already know, they gave me labels to give to my employers. That was worth a lot.
I received the diagnosis of arthritis back in 2011 in Idaho, when my wrist pain was first getting out of control. Seeing that doctor was worth it, as I learned a great deal (though he put me in horrid pain by injecting my wrists with cortisone, which crystallized in my wrists, but that's another story.) I saw a doctor who specialized in hands - in fact, he only took patients who had hand issues in his clinic. He took x-rays, and the results were obvious. I had white lines around my inflamed wrist bones that were obvious even to my untrained eye. My right wrist was in worse shape than my left wrist, and I could see that the bones in my right wrist were more inflamed than in my left. That was the easy diagnosis to get. I found in late 2013 through my naturopathic doctor that I wasn't stuck with the arthritis. Within a couple months of his treatments, diet, and supplements, inflammation throughout my entire body went down substantially. My wrist was feeling better than it had in years.
Getting the other diagnoses was harder, and cost me a lot of money. Based on finances alone, I do not recommend going through all the hoops to get diagnosed. Why? Because medical doctors can't treat you, even with a diagnosis, because they don't understand the conditions. I gained information, but I did not gain any help. None whatsoever. Long story short, I went back to the internal medicine doctor at the walk-in clinic after running every possible test she could think of. I was the one to ask her about the possibilities of Multiple Sclerosis, Lupus, or fibromyalgia. She said, "Oh, well I'm comfortable diagnosing fibromyalgia. I just have one test to do first. Do you want to try?" It was the infamous "tender point test." She tapped 18 points on my body, and if I responded "ouch" to at least 11 of them, I got the diagnosis of fibro. Keep in mind, she wouldn't do this test without first doing all the other testing I did. This was a "last resort" test, but it was my idea, not hers. I passed the test with flying colors (what are flying colors anyway - we keep using this expression, and it sounds odd.) It was at the time that she added the diagnoses of chronic fatigue, anxiety, and depression, saying I exhibited all the symptoms and they tend to go hand-in-hand with firbo.
She put me on the lowest dose of Cymbalta, an anti-depressant, saying that she's seen her other fibromyalgia patients improve with it. Before Cymbalta, I was at least able to go to to work. I wasn't feeling well, or even doing a good job in many instances. But I showed up, did my job, and got paid. On Cymbalta, I couldn't get out of bed. It caused me to go from bad to near death. I missed over a week of work. I couldn't get out of bed to feed myself, so my husband brought me breakfast and tea. I couldn't read, I couldn't play a game, I couldn't day dream, I couldn't sleep - I was a zombie. I lost my will to live, and to this day I wonder how I actually survived (thank you, Holy Spirit!) After 13 days of taking it, I quit. I refused to take anymore. The problem was that it did damage to me that I believe I'm still recovering from. I hardly improved after cutting myself clean of the drug - even months later, I was still feeling like a complete zombie.
The problem was... she wasn't techincally qualified to diagnose fibromyalgia, and so insurance wouldn't accept it. Technically, a rheumatologist has to diagnose. I had my first appointment with a naturopathic doctor in New Hampshire (he came highly recommended, worth traveling for.) I decided that while I was traveling anyway, I might as well see a rheumatologist. I was able to get an appointment the day after I saw my naturopathic doctor the first time. I really liked the rheumatologist. He listened well, he asked a lot of detailed questions, and he examined me very thoroughly. He confirmed the diagnosis of fibromyalgia with mild confidence. He told me I certainly had the symptoms, and through process of elimination based on all the testing I had done, the diagnosis made sense. He also did the tender point test on me. His recommendation? He quite seriously, honestly, said, "Do what your naturopathic doctor says. I bet it will work." My jaw hit the floor. He also recommended seeing him again after several months of working with my naturopathic doctor, because he wanted an update. I never felt the need to go back to him, because my naturopathic doctor was actually treating me, and was actually getting results (and still am!)
Since my rheumatologist told me to follow "alternative medicine," I've made the decision not to bother with MDs anymore. I won't be doing my follow up appointment with my cardiologist (he had a few concerns, but I already got my answers - allergies cause heart distress.) I decided not to get the laparoscopy, because my issues are clearing up on my ND's regimen, slowly but surely. I will not get more blood work done, despite the recommendation of my internal medicine doctor. I see no point, whatsoever. My allergy testing was a complete and total joke - it showed I wasn't allergic to corn, and corn allergy reactions have put me in the ER before! I lost my trust in "testing" methods. Why would I return to spend money on an institution I don't trust?
The entire experience of seeing medical doctors wasn't a waste, like I said earlier. It made me much more willing to trust my naturopathic doctor without wondering if I was taking too extreme of measures of traveling to see him. I did learn my blood sugar and blood pressure levels (which I was told were very healthy levels, but after my own research and 3 alternative medicine doctors, I found out I was hypoglycemic, which is NOT healthy - doctors and nurses are only trained to treat high blood sugar and pressure.) I also ruled out all sorts of medical issues and had a few treated, like I mentioned earlier. It gave me peace of mind. Occupational therapy did help me recover motion in my wrist when I had lost all motion (but I now know a MUCH cheaper and faster way to solve the problem.) Was the whole process worth the $7,000 (after insurance) I'm paying off? No. My money was more valuable.
Oh, and by the way, I no longer have any fibromyalgia symptoms, unless I eat sugar in any form. Sugar is my worst enemy. I have a great deal of respect for my naturopathic doctor. ;) This is the topic for another post.
I tried to spare you a lot of detail in this so I could focus on the overall point of the story. If you want more detail on my experiences with doctors, I would be happy to talk to you about it. Leave me a comment or email me: Sarahmlanger@gmail.com.
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