Bateman Horne Center: Treating COVID-19 in patients with ME/CFS & severe FM

This is a PDF file.

 

Typical document of what is produced in the US, without being perfect, I think it contains some good advice. But, something raised my eyebrows ... :

" Be aware of common comorbid conditions: small fiber neuropathies, hypermobility, autoimmune thyroid disease, euthyroid sick syndrome, Sicca Syndrome, pain amplification disorders (to include FM)... "

And what does the ACR (American College of Rheumatology) say about Amplified Musculoskeletal Pain Syndrome (AMPS)?

" Treatment of AMPS consists of a non-pharmacologic approach involving cognitive behavioral therapy, physical and occupational therapy, and regular aerobic exercise with a focus on stress reduction. Since AMPS can often affect the entire family, family counseling is often recommended as well. Typically, once a clear diagnosis is established and all unnecessary medications and testing modalities are stopped, the burden of the ‘unknown illness’ is lifted which can be a relief. Pain management recommendations are heavily weighted towards graded (gradually increasing) exercise programs, regular daily activity in the form of functional aerobic training, desensitization for allodynia and psychotherapy."

https://www.rheumatology.org/I-Am-A.../Amplified-Musculoskeletal-Pain-Syndrome-AMPS

Rather contradictory, with ME, isn't it? I don't quite understand how a person can have ME and FM simultaneously: either they have ME (with PEM) with or without pain, or they have FM therefore without PEM. The document strikes me as confused on this point.

 

I know a number of FM sufferers who have had a CFS diagnosis added to their original FM diagnosis due to their 'chronic fatigue' and I presume post-exertional fatigue and post-exertional increase in (pain and cognitive) symptoms.

 

Here also (Canada) I know that the 2 diagnoses can be affixed to the same person, that seems incompatible to me since the main difference is PEM. The pwFMs do not crash, even if they have "chronic fatigue" as you say (and their 'treatment' are the opposite as we know).

 

many doctors seem to give a f m diagnoses to people with widespread pain conveniently ignoring the myalgic part of m e .

 

I would probably qualify for both ME and FM.

 

I received a diagnosis from a UK ME clinic of Severe ME and FM.
Didn't seem unreasonable to me as the pain I suffered had a peculiar quality to it.
Over time the FM receded but rears its ugly head when I suffer PEM

 

Last visit to my GP, not sure why I bothered but it was mostly for excessive leg pain, we agreed that I probably do but it wasn't put in the record because it's pointless. I wonder how often that happens. I assume it's a lot. I pretty much assume it's the norm, with the weird obsession to reduce the entire illness to a single symptom and find a single cause to explain it all.

Hence the whole "a main symptom of" that makes no sense. What is the main feature of a car? A wheel isn't a whole car. It's the sum of its parts that make it what it is. Artificially reducing complexity by reducing information. Brilliant.

 

I myself have the 2 diagnoses (EM + FM). It was only a questioning.

At the onset of the disease, I was first diagnosed with FM (generalized chronic pain, severe sleep disturbance, exhaustion, etc.). As recommended, I therefore tried to gradually increase the pace of my steps during my walks. (Neither I nor apparently my doctor knew about ME. Previously, I observed that the more I exerted the more I seemed sick, sometimes forcing me to stay in bed but ...) I remember twice that I 've tried, and twice I almost passed out and had to sit on a snowbank at the last minute (it was winter!). My doctor then told me "Stop it". A cardiologist subsequently diagnosed me with POTS and then my doctor with ME.

Looking back, if I had known earlier about PEM, for example, it would certainly have saved me a lot of suffering.

 

The criteria for FM have been loosened over the years until it means "widespread pain" to many doctors. You see it used as a symptom nowadays alongside CFS used to mean fatigue that is chronic.

With the confusion we know exists about what ME actually is I do not see how a doctor can distinguish between the widespread agony of ME and that of FM.

FM became associated with ME when the US doctors started thinking of ME as fatigue losing the myalgic part. When patients then had myalgia they called it FM.

Perfectly possible to have the two diseases at the same time but the medical profession has no idea about either of them so diagnosis is unlikely to be accurate. The important thing is to avoid over exertion if you have the chance of having ME.