Questions:
I have a number of questions
specifically about CIDP:
1.
Why do I still feel
fatigued doing normal things and if I do a bit more it seriously takes
it’s toll? (I am like a battery and if I use the charge too quickly the
re-charge timeframe is significantly longer than if I keep to minimal running
levels)
2.
My toes and feet
still get stabbing pains at night which wake me up and so I don’t get too much
sleep, is this normal/usual?
3.
My improvements in
feeling seem to have either slowed down or stopped, since I came off the
steroids – maybe that is a co-incidence – will I ever get close to full feeling
again?
For all these questions I wonder
whether I have now reached what will be “normal” for me from now on?
I saw a different consultant a
short while ago and his answer to the first 2 were “It’s because you’re getting
older and to be expected” which I found to be totally unhelpful and whilst
relevant for people in general, wasn’t necessarily relevant to people like me
who are supposed to be recovering? I am now waiting to see my usual
consultant Dr Gibb as I really felt this new one was a waste of time and
frankly condescending towards me.
I am aware that you are not a
consultant, but you have real experience about CIDP and see it every day (and I
trust your opinion and that you will be honest with me).
Answers:
As you rightly say, I am not a consultant; I shall attempt to answer your queries based on my clinical experience and research knowledge. Please remember these answers are my opinion and far from definitive.
1.
Fatigue:
this symptom is a tricky beast. Fatigue in CIDP is likely to be a
combination of central neurological fatigue and peripheral neurological
fatigue. The mechanisms of these phenomena are not well understood. Current
understanding is that peripheral fatigue acts much as you describe: activity
beyond a certain threshold leaves you feeling fatigued with an extended
recovery period. These effects can be measured in the muscles. Central
fatigue is more complicated; it involves changes in the brain in response
to signals received from nerves in the body. Central fatigue causes the
perception of fatigue without corresponding physiological fatigue exhibited in
the muscles. Obviously each individual with CIDP is different and the course of
the disease and the symptoms are variable from case to case.
Your CIDP fatigue symptoms are probably a combination of
peripheral fatigue (thanks to the interrupted conduction of your damaged
peripheral nerves) and central fatigue developed as a knock on effect to
"signal failures" in the body. So if normal activities are leaving
you exhausted it may be logical to assume that you are suffering mainly from
peripheral fatigue: if you do more activity than a certain threshold you
become exhausted. The best way to treat peripheral fatigue is with very
gradually progressed exercises during which you work to your threshold (and
expect to feel tired afterwards). Gradual progression can slowly lift your
threshold. The idea is to maintain exercises (which tire you out) in order
to keep your peripheral fatigue threshold above that of normal daily
activities. Thus normal daily activities cease to drain your batteries, but
exercise still does and should (up to a point of course).
As you have also had CIDP for a while now, so it is very likely
that central changes have developed too. This makes your fatigue more
complicated, because central fatigue can make you feel exhausted even when your
body has not reached its threshold. Central fatigue is like a programming error
in a computer, so your brain receives "normal signals" and interprets
as them as exhaustion, this makes you feel dreadful and is just as functionally
limiting as peripheral fatigue. Central fatigue is more complex to manage.
Cognitive Behavioural Therapy has been demonstrated to be effective in some
neurological conditions, as has gradual exercise (to a certain extent). However
central fatigue takes much longer (years) to reset than peripheral fatigue, and
it often seems like it is unconquerable. This can lead to people becoming
discouraged, which frustratingly can actually make the central fatigue worse.
This is because mental wellbeing has a significant impact on the brain changes
involved in central fatigue. Because central fatigue is such a complex process
of brain changes and it is influenced by such a wide range of factors, it is
difficult to unravel for each individual and results in unpredictable episodes
of fatigue even when peripheral fatigue is well managed. The best advice I can
give is allow yourself time and keep a positive mental attitiude (much easier
said than done of course!)
2.
In my
experience night pains are not an unusual symptom to be reported in CIDP. It is
important to try to mange these symptoms however because quality of life and
central fatigue are both majorly impacted by chronic sleeplessness. There are a
number of strategies you can try. The pain is likely to be caused by one of two
mechanisms (or a combination of both): either small localised muscle spasms due
to abnormal motor nerve conduction or abnormal sensory nerve activity giving
rise to parasthetic sensations. The first can often be considerably eased using
Quinine tablets (quinine is present in small amounts in tonic water too). The
second can often be reduced using neuropathic pain killers (such as Gabapentin
or Amiltriptyline). A third option can be sleeping tablets. It would probably
be a good idea to discuss some of these options next time you see your consultant
or your GP.
3.
Your
sensory loss may stay the same, it may worsen or it may improve. Sorry to be so
vague on this one. Every person is different and every case of CIDP is
different. In general CIDP is a progressive condition, but it can be stable for
long periods at a time and it may never change at all for some people. On the
other hand some people experience huge improvements in response to therapy or
reduced stress. The only way to know how it is with you is to
"experiment". You could discuss with Dr Gibb going back on
steroids at a low dose and monitor your sensation for a while;
but bear in mind the side effects of long term steroid use. Also using
steroids may not help the sensation at all anyway.
Alternatively you
could try sensory therapies, although there is little evidence to support
these. Sensory therapies include deep tissue massage, sensory challenges like
putting your feet in warm water then swapping to icy water and back again
and using different textures to run over your skin alternating between
light touch (like feathers, silk and fur) and scratchy "pin-prick
touch" (like hessian, sandpaper, Velcro hooks).
I hope this information is helpful to you.
Personally the above makes much more sense to me and I can cope with because I have an understanding of what is/has happened to me. I have said a great big thank you to the Physio who provided these excellent answers and whilst she is not a consultant she certainly knows more about the real issues and impacts.
