Professor Peter Moskovitz

Naar aanleiding van het gesprek donderdag 3 juni, in het VU MC, hebben wij contact gezocht met de professor Peter Moskovitz in de USA. Hij is de schrijver, samen met Linda Lang, van het boekje "Living with Rsds". In dit boekje wordt beschreven dat de RSDS (CRPS) op de organen kan slaan. Mijn hele ziektegeschienis hebben we naar hem gemaild. Nog geen uur later hadden wij het zijn eerste reactie en binnen een dag een uitgebreide reactie (in het Engels):

I cannot prove, to any reasonable degree of medical certainty, what I
am about to write. Stick with me, however, and I hope that it will make
sense to you.

I'm sorry to read your story. CRPS is a terrible disease, and your
experience with it has been awful. Every person's experience with CRPS
is unique. There are patterns, of course, but there are so many
variables that to precisely define each person's experience is
impossible.

First, I cannot offer a detailed analysis of your situation from afar.
What I have is suggestions.

Second, CRPS is a disturbance in the transduction, transmission,
encoding, storage and, most importantly, the experience of "pain". The
best theory of how CRPS happens is that the inflammation of injury,
superimposed on genetic predispositions, alters the balance and
function of neurotransmitters in the process of transducing,
transmitting, encoding, storing and experiencing pain. There are dozens
of neurotransmitters, and the balance of free and bound
neurotransmitters in the central nervous system, as well as throughout
the body proper, has profound effects on what are commonly thought of
as "automatic" functions of the autonomic nervous system. Such
functions include cardiovascular and respiratory regulation, as well as
bowel and bladder regulation.

So, your CRPS specialist and the group of other specialists caring for
you are both right. It appears highly probable to me that the
disturbances you report are due to an imbalance in neurotransmitters
that is both the cause of your CRPS and the result of it. The problem,
of course, is that we are unable to measure the concentrations of
neurotransmitters in an effective way. The science is incomplete, but
there are some clinical hints.

Third, and here's the hint, one of the effects of neurotransmitter
imbalance is disturbance of mood and emotions. Sometimes the only way
we can understand neurotransmitter imbalance is through such
disturbances of mood and emotions. There was a time when practitioners
thought that CRPS was caused by either anxiety or depression or both.
Now we understand that anxiety and depression are almost universal
effects of CRPS, or, arguably, anxiety and depression are
manifestations of the same neurotransmitter imbalance that causes CRPS.
It is through the evaluation and management of anxiety and depression
(and other disturbances of mood and emotion) that practitioners can use
pharmacologic agents to rebalance disturbed neurotransmitters, although
they are probably not treating the right neurotransmitters to affect
the CRPS. Modern medications are now developed to specifically affect
such neurotransmitters as serotonin and norepinephrine. It's not much,
but it's a start. Ketamine therapy is all about NMDA.

Therefore, you should explore with your treating doctors the presence
of changes in your mood and emotions since the onset of your CRPS. Be
not deceived, you would be an extraordinary person (and I should think
rather weird) if such changes are not profound. Treating them may help
to rebalance your autonomic nervous system functions
(cardiorespiratory, bowel and bladder). I would not be surprised to
learn that your sexual function has also been seriously altered. Most
people don't like talking about sexual function, but if my hypothesis
is true, it makes sense. It's not proof of anything, but it makes sense.

Most RSDers, at first, recoil from a discussion of CRPS associated
emotional impairments. For so long the false idea that CRPS was caused
by emotional disturbance prejudiced the discussion. Don't fall into
that trap. I hope the discussion above helps you to steer clear of it.

Fourth, I'm hard pressed to recommend a better place to get the most
advanced CRPS care than in the Netherlands. There are superb centers
for CRPS care at the University Hospital in Amsterdam, in Leiden, and
Rotterdam. I don't think you have to go as far as Groningen or
Maastricht.  There is an excellent CRPS treatment program at the Royal
Nnational Hospital for Rheumatic Diseases in Bath, UK.  I don't know
that any of these centers has specific experience with autonomic
function disturbance, as you have experienced it.