Update 35 - Pains & Fatigue Explained

This follows on from my previous post and the unsatisfactory answers I received about fatigue from a neuro-consultant. I know a physio who deals with GBS/CIDP on a daily basis, so I asked her the questions I asked the useless consultant. Below are my questions and her answers:

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.