Dude, where is my vocabulary?

Just a short observation:

One thing I have noticed how utterly inadequate my vocabulary is, when I try to describe my daily problems to any of the doctors I have seen so far.

Now I may lack training the fine art of being a patient, but what I notice is that my doctors did not display much expertise in inquiring about these kinds of symptoms. Yeah, I have "unrefreshing sleep". Yeah, when I finally get up in the morning my muscles "ache" and feel "stiff". Yeah I feel "fatigued" even before I do something. Yeah, I have "a bit" of "short breath" when I actually do physical activity.

I tried once to convey to a doctor the impact these problems have on my life. Doctors don't like alarmism, I had to learn. Only people with visible disease signs are allowed to state that they are severely impacted by disease, it seemed to me.

Since then, I try to be dry and factual, but lacking a nuanced vocabulary, I get the feeling my doctors don't receive the message I have to transmit. And that they don't ask questions to get the nuances that are missing – e.g. "How strong is the shortness of breath?" or "How unrefreshing is your sleep?" – and don't offer anything in the way of nuanced vocabulary is a bad sign.

I guess one could talk about pain for hours – dull pain, diffuse pain, focal pain, burning pain, just a little pain, feeling like being crushed – but for symptoms related to fatigue? No such luck.

This is a problem that needs to be addressed.

ME/CFS and Depression can be co-morbid

Purely on a anecdotal level:

I used to have depressions. I got rid of the depression over a year ago – I think my depression was caused by grain-products.

When ever I did something, I felt emotionally better, but bodily worse. When you have "just" depression, you feel not worse after doing something.

So I think depression and ME/CFS can be co-morbid. Having one does not rule out the other.

Historic ME/CFS Outbreaks: Los Angeles 1934

Names used:
Atypical Poliomyelitis (Gilliam, 1938)
Epidemic Neuromyasthenia (Ramsay)

Location and Date:
Los Angeles County General Hospital, 1934

Described by:
Alexander Gordon Gilliam (1938) – Epidemiological study of an epidemic, diagnosed as poliomyelitis, occurring among the personnel of the Los Angeles county general hospital during the summer of 1934

Symptoms:
First considered as poliomyelitis (polio).

Initial symptoms similar to polio, but some features differed from polio:

• Localized muscle weakness in 80% of cases, yet no muscle wasting (unlike polio)
• No evidence of damage to the lower motor neuron
• Sensory symptoms (persisting far longer than in polio)
• Muscle pain, tenderness (persisting far longer than in polio)
• Fatigue on walking short distances
• Lapses of memory
• Loss of concentration
• Sleep disturbances
• Emotional lability (with "hysterical episodes")
• Reoccurrence of both systemic and neurological symptoms, some cases more disabled by recurrence than by original illness
• No mortality, but high morbidity (55% of staff off duty six month after peak of peidemic)
• Vaso-moto and trophic disturbances
• Excessive sweating or abnormal dryness of the skin of the extremities
• Coldness and cyanosis
• In more severe cases exfoliation of the skin
• Hypertrichosis and brittleness of the nails, with retardation or acceleration of growth

The outbreak in the Royal Free Hospital in London in 1955 was an almost exact replica of this outbreak according to A. Melvin Ramsay.

Source:

A. Melvin Ramsay – "Myalgic Encephalomyelitis – The saga of the Royal Free disease", page 12

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Other historic synonyms.