Dear Doctor, I Have ME/CFS — Do You Know What That Means?


I have always had better than 20/20 vision. One year during my regular eye exam, I was evidently having a “fibro bad vision day,” and regardless of what I said about having myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), I had failed the test. And so, it was determined that I needed to wear eyeglasses. When they arrived, I could not wear them, and the lenses tested correct for what had been ordered. However… no one bothered to re-test my eyes! You see, on a Monday I might have slightly impaired vision, but on Tuesday I’m back to being 20/15!

Had I listened without question to an eye doctor insisting that I needed to wear them to “get used to them,” I could have either fallen, or worse misjudged while driving!

To me, that experience was no different than the “pain specialist” who thought he knew my body better than I do, when I have 59 years experience with this body. After five to 10 minutes of asking me trick questions, he prescribed me a medication that I assured this man I am allergic to, as I had tried it twice in the past, and had a severe reaction to it on both occasions. I was told to try again! Indeed, there is more than one way to deny that our pain is real, and that our symptoms are genuine.

It seems that we can never win. If you say you are active, you’ll be told to rest, and if you say that you take frequent breaks, then you’re told that you need exercise. I find it rather odd that when I broke my leg in three places, the x-ray provided the hospital with proof that I was in pain. Yet on the other hand, the “pain specialist” which I saw, told me that the x-ray of my severely arthritic spine did not prove that I was in pain!

When I began to cry in frustration, his reaction was to double my dose of antidepressants, and suggest that I need to see a counselor. But the reason that I was there in the first place was never addressed. My problem is that I was put on a supposed 12-hour medication, that has since been documented and proven to only last four to five hours, and he admitted that this was true. This gives me only eight hours of pain relief out of every 24. All that was needed was for the specialist to authorize my GP to prescribe a four-hour pill instead. Simple, one would think. Not so simple when you’re invisible, and your pain can’t be seen even on an x-ray.

A dentist pulled an infected molar out of my head on a holiday, at a hospital. I told the dentist three different ways that I have a chronic illness. I said I have ME/CFS, to a blank stare, I then said that I have myalgic encephalomyelitis, to another blank stare. When I finally said fibromyalgia, it was received with a look of annoyance as though I were wasting his time, or trying to get a prescription for pain meds which I was not. I was swollen and in more pain than my meds could handle. He pulled the tooth and showed it to me, saying that he had gotten it all, when I could only see blood and pus, and then turned and said “we’re just going to let it drain” even though I had told him that I have a chronic illness! Days later, it was either see my GP or go to the ER. My GP put me on the strongest course of antibiotic and an antibacterial, which may have saved my life.

While I understand that legally he could not give me anything more for pain, he needed to understand that if my meds had been working, I would not have known that I had a bad tooth or a raging infection in the first place, so his assurance that my “regular meds” would be enough is just ignorant. It is also very ignorant to ask me what drugs I have been smoking because you believe that my receding gums are due to drug use rather than a symptom of my chronic illness!

I think I may have the infection under control, but I still need to see another dentist as there is a lump still in my swollen gums. It is most likely a part of the root which has grown into my jawbone, and which I did warn my dentist about, since this has happened at least four times in the past with my teeth.

I sincerely wish that my GP were able to do everything that I need. Unfortunately he can’t, and even a letter from him is useless as in the case of the “pain specialist.” I often wonder what it will take for all doctors to first believe, and then understand chronic illness, rather than assume that we are doctor shopping for pain meds. And if I had one wish, it would be to have the ability to trade bodies with others for just five minutes, I think that would be enough to make the point that I am not faking, and not making it up.

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Thinkstock photo by domoyega


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