A. Postexertional neuroimmune exhaustion (PENE pen’-e): Compulsory
This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. Characteristics are as follows:
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.
2. Postexertional symptom exacerbation:e.g.acute flu-like symptoms, pain and worsening of other symptoms.
3.Postexertional exhaustion may occur immediately after activity or be delayed by hours or days.
4. Recovery period is prolonged, usually taking 24 h or longer. A relapse can last days, weeks or longer.
5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.
Operational notes:For a diagnosis of ME, symptom severity must result in a significant reduction of a patient’s premorbid activity level.Mild(an approximate 50% reduction in pre-illness activity level),moderate(mostly housebound),severe(mostly bedridden) orvery severe(totally bedridden and need help with basic functions). There may be marked fluctuation of symptom severity and hierarchy from day to day or hour to hour. Consider activity, context and interactive effects.Recovery time: e.g. Regardless of a patient’s recovery time from reading for ½ hour, it will take much longer to recover from grocery shopping for ½ hour and even longer if repeated the next day – if able. Those who rest before an activity or have adjusted their activity level to their limited energy may have shorter recovery periods than those who do not pace their activities adequately.Impact: e.g. An outstanding athlete could have a 50% reduction in his/her pre-illness activity level and is still more active than a sedentary person.
PENE is also known as Post Exertional Malaise (PEM) or Payback.
I expected the PENE from the Specialist Appointment would be very bad and would last long. I’m not complaining about it because I have accepted this is the way of my life now. When I think about how successful the appointment was, the degree of PENE I’m suffering now is somehow worth paying. I know some (healthy and able-bodied) people think it is a negative thinking, but I say it is just the fact of my life. Although having said that, it would be nice if we don’t have to suffer like this…
The next two days, my whole system was in chaos. It made me scared sometimes. Generally, I consider it’s a blessing if I drop dead. However, now that I have a Specialist who understands my problems and there is a possibility of treatment in the future, I would like to hang around a little longer to see what my future would be like.
Despite of the utter exhaustion, I couldn’t sleep that night. Over-stimulated nerves needed extra time to calm down. In the early morning, Migraine started. So, I was a paralysed zombie the next day from Migraine medicine. I’m pretty sure that I would have been the paralysed zombie without the Migraine medicine due to the severe PENE.
My whole body, inside out, ached with inflammation like pain. Joints ached and were stiff. Tinnitus became loud. My neck, shoulder, and back became stiff and in pain. Both sides of whole neck became extra painful, but I wasn’t sure if it was tender lymph nodes or something else.
Muscle cramps got worse and spread out to whole body. I also got the sensation like restless leg syndrome that I feel cramp like pain in muscles and my limbs jerk if I try to move the muscle to comfortable position. Twitches and tremor came and went.
It felt like an elephant sitting on my chest. Chest was tight, heavy, in pain, and my breathing was an effort. My air way felt half blocked. I suspect it was something to do with exhausted and weakened muscle blocking the airway, as if I have sleep apnea while I am wide awake and conscious.
My appetite has decreased, but I wanted to eat every now and then. I was too ill and weak to prepare proper meal or clean up afterwards, so I just had to scavenge for easy to eat food. I lost thirst or some degree of ability to drink. I got scared to see dark brown urine and its strong sweet smell. With the difficulty/uncomfortable drinking and swallowing, I stopped taking supplements and some medication for a couple of days.
My heart beat was weak and pulse dropped to 55. When I’m like this, feeling the occasional heart palpitation and sensation of skipping heart in bed was also scary. The readings of blood pressure and pulse were actually all over the place.
From the past experiences, I leant that I would be okay as long as I keep resting no matter how scary the symptoms are.
Eventually, the worst of the chaos calmed down. The chaos kept coming back when I needed to get out of my bed to look after myself and my dog. But, I felt the critical period was gone and I wouldn’t drop dead now.
It’s almost 4 weeks since I had the Specialist Appointment. PENE is still going… My energy/stamina level is alarmingly low and I can do things only for a short time, and I need to urgently come back to bed to rest and recover from the small task. I also notice the significant deterioration in my eye sight. I hope this is just a part of PENE, and the problem will be reversed once muscles regain the normal strength.
My gut and digestive system are in confusion, too. So, I’m having alternating constipation and diarrhoea, indigestion, nausea, bloating, wind problem, pains that shifting around at different part of organs, and etc.and etc…
All I can do now is to wait. I’m waiting for the PENE to disappear. (I wonder, though, if this is how I am now in general regardless of PENE.) And, I’m waiting to hear the confirmation of appointment with the Cardiologist.
And I wait while I’m trying to tackle the never-ending-list-of-things-must-be-done in between frequent and prolonged rests…