Bad energy, exhaustion or fatigue?

For a long time I have been thinking about what is wrong with me. People in general credit me with much more than I can perform. At the beginning of my illness, even before my diagnosis, I often thought I was simply listless and lazy. As if my butt and my sofa had a built-in magnet. I enjoyed cancelling meetings. I remember when my sister came to visit me and wanted to go shopping with me in the city, my first thought was “How do I survive this?” I felt guilty because I never felt like doing anything. I remember my last New Year’s Eve before the diagnosis, I was glad when it was all over and I could go home.

As the illness progressed, this lack of energy got worse and worse, every kind of movement made me sit down and out of breath.

So I dealt with this tiredness, also called FATIGUE, which belongs to MSA.

Fatigue affects many people who live with MSA, so it is important to look for ways to deal with it. Occupational therapists can assess fatigue and, if necessary, work with a multidisciplinary team to help deal with the problems.

Fatigue can present itself as an overwhelming feeling of tiredness, a lack of energy and a feeling of exhaustion and is different from the feeling of tiredness in people without MSA. Fatigue can have a significant impact on a person’s ability to cope with everyday activities. Fatigue can also affect a person’s cognitive abilities, speech, well-being, mood.

If one suspects that one is suffering from fatigue, the following symptoms may appear:

  • Weak energy or increased need for rest, which is out of proportion to the current stress
  • General weakness or heaviness of limbs
  • Reduced concentration and attention
  • Reduced motivation or disinterest
  • Insomnia or excessive sleep
  • Do not consider sleep to be restful
  • Big effort to tackle a task 
  • Problems with short-term memory
  • Long period of discomfort after exertion 

There are numerous causes of fatigue in MSA. Fatigue is often listed as a symptom for most diseases. We do not know yet what causes it in MSA, but it is probably a number of factors that are related to other symptoms.

Having MSA means that it requires greater effort to move around. This can cause muscles to quickly become exhausted, due to lack of exercise, leading to fatigue. It is important to talk about this with your physiotherapist.

Many factors influence fatigue and well-being.

Blood pressure – this can certainly lead to fatigue and should be controlled and treated if possible.
Sleep disorders – sleep problems are common with MSA and treatment of these problems can help to improve sleep, which in turn can help to reduce fatigue.
Extra effort – Increased energy output due to the extra effort of doing normal activities, such as taking a shower.
Depression – Bad mood can reduce motivation to be active, which in turn can lead to fatigue. Depression should be treated in general and also can be the reason for many other symptoms.
Lighting – poor lighting conditions cause increased visual effort, which can lead to fatigue.
Temperature – Extreme temperatures, such as a heat wave or excessively cold temperatures in winter, can cause fatigue. Be aware that MSA patients have lower body temperature and may feel different depending on how and if the temperature balance in the body works.
Noise – too much auditory stimulation can cause fatigue
Medication – it is important to monitor whether changes in medication worsen fatigue. Side effects or drug interactions can also cause or aggravate fatigue. Medical advice can help.
Infection – any infection can worsen MSA symptoms. It is therefore important to be aware of the risk of infection and to treat infections immediately. It is very important to be aware that the absence of fever does not rule out infection.

A good, balanced diet and as much exercise as possible can help to reduce fatigue. It is advisable to talk to a nutritionist about a balanced diet and a physiotherapist about safe, beneficial exercises. Drinking plenty of water is also important. Adequate fluid intake is important for many aspects of MSA and is also known to help against fatigue.

A good night’s rest is very important, but it can also be difficult. The chances of getting a good night’s sleep can be increased by learning good sleeping habits and addressing problems such as anxiety, pain and the problem of frequent nightly urination.

It is important to maintain your own speed and take plenty of time for rest and relaxation. So don’t be afraid to accept help or to delegate things to others, be it to family, friends or to external agencies. It is difficult to ask for help, people around you will be happy to help. Planning a weekly schedule, coordinating activities and establishing quiet days will help. It is important to know your level of activity so you can develop a realistic weekly schedule and prioritize activities.

Trying to avoid stress, eliminating all factors that cause stress, is elementary. Fatigue is known to be caused by bad mood and irritants. A therapy can be considered. Creating pleasant conditions, this way you have the best chance to fight fatigue.

As you have noticed, many things can have negative effects. The motto is “try by study”. To find the right measure for you is important. And no guilty conscience, to accept that things have changed is part of it. Accepting that a simple change of bed linen or cooking a meal. can take a lot of energy.

But it is also important to consider that persistent fatigue can have other causes such as iron in the blood. MSA is usually the root of all ills, but not always.

The simplicity of walking

It happened. I can’t gloss it over anymore, I can’t blame it on the time of the day or on the psyche, my gait has become worse. I don’t think it affects my balance, simply my legs do things they shouldn’t. And although my legs are healthy and certainly not the weakest, they feel weak and powerless. In other words, my legs do not obey me. They make movements, totally random, which makes me loose my balance. So I have to be very careful, walking on my legs is like walking on a minefield.

At night and in the morning right after getting up it is especially bad. I start running with a swing, I am glad that the wall is there to stop me. Until now I only knew this from hilly roads, snide paths when I start in one direction and I can’t stop.

The whole thing upsets me of course. Actually, I already look like a penguin that has been shot. I remember times when I used to strut around on high heels, wagging my ass – that’s finally over now. No men turn their backs on me, except out of pity.

Then I also think that even little babies learn to walk, what’s the problem? Now I am threatening to fall over while standing, closing my eyes is not allowed. 

Most of the time I pull myself together, everything works better with concentration. But then I think, walking used to be no special challenge, now I have to switch off everything else so that it works for a few steps. Not even talking and running at the same time turns out well. Either one or the other.

Of course my next thought leads to the study drug. Does this mean that I am on placebo? In other words, do I get sweets instead of the active ingredient? Looks like it, who knows. Admittedly, I don’t do much at the moment, going outside is problematic, walking on the treadmill has become more dangerous because of balance and I don’t do it every day like I used to.

The whole thing already bothers me. At least I can still go on my own to the toilet and back, everything else requires planning. If I want to go shopping in front of the door, on the terrace, or further away, maybe to the post office or the hairdresser – nothing works without planning, companionship, spontaneously. A few years ago, this was not an issue, of course, for me it is especially independent person, especially bad. On top of that I am stubborn and offended and often I don’t want anything anymore, no compromise. Instead of walking in the forest and walking over the damp forest floor and leaves, not even to the terrace, and sniff a little fresh air.

Of course there is still the hope that it can be turned around, that with more practice and more relaxation the situation will improve. At the moment I am thinking about wheelchairs but I also want to drive a car. I hope that it will get better, I will report. Because who gives up, has already lost, as is well known.

A short note on the Biohaven study (BHV 3241). In user groups the news is spreading that you can get a prescription for the drug. I wrote to Biohaven directly and wanted to know how this is handled in Europe. Not at all. The drug is only available in the USA, it is generally not shipped across the border. That means you have to travel to America and find a doctor willing to prescribe it, pay for the stuff yourself (unfortunately I didn’t find out what it costs), and I guess you have to go there more often or you get a year’s supply… Whether the stuff helps is the other question. I personally don’t feel anything, but I have heard a few positive voices. However, no reports about a miracle. Of course, patients with positive experiences keep a low profile – especially here in our country. For whatever reason. In any case, the fact is: still no medication.

As far as my running skills are concerned, I am counting on a miracle. The most important thing is not to fall badly and to stay mobile at all costs. Of course, you avoid a stick or a walker. I will never forget the first time I rode the subway with a cane. I had the feeling that everyone was staring at me. In the meantime it doesn’t matter anymore. Without it I look like a drunk anyway, so the question is what is better. With aids, people might help me up, but without them they won’t.