Ask the expert: Coping with MS fatigue

If you have MS, it’s likely you’ve experienced that overwhelming feeling of tiredness or sudden lack of energy that defines MS fatigue. It’s one of the most common symptoms of MS. We put your questions on fatigue to occupational therapist, Kate Hayward in 2018.

Kate says: Taking regular rest breaks, making sure you have your lunch and eating and drinking regularly can help you to manage your fatigue at work. Early disclosure of your MS in the workplace has been shown to be beneficial in research studies.  If you’ve told your employer about your condition, you can work with them to agree how you’re going to manage fatigue at work. Taking additional rest breaks can be agreed as a reasonable adjustment. 

Another thing you could perhaps think about is the commute to work. Are you finding that really fatiguing? Are you getting to work and you’re already exhausted? Perhaps you can agree with your employer that you can work a couple of days from home to reduce the impact that the commute might be having on you. 

You could also consider contacting the government’s Access to Work service for an assessment. They might be able to look at whether your work station is set up appropriately so that it’s as efficient as possible. This might involve exploring things like voice activated software which might help you to save some energy from typing, or perhaps looking at the chair you’re sitting in and whether that’s as supportive as it can be so that you’re not wasting any energy there. Access to Work also has a taxi to work service which you might be able to use if the commute is really fatiguing.

Kate says: Lots of people with MS can experience heat sensitivity fatigue. This is because the myelin sheath around the nerve acts an insulator and to work efficiently, sending messages from the brain to the body, the nerve needs to maintain a constant temperature. It only needs to increase in temperature by about half a degree to not work as efficiently so it can take longer for the messages to get through. This tends to quickly reverse when you cool down. 

It can be useful to think about how you might try and keep cool so perhaps having a cool bath or shower rather than a hot one, having a window open when you’re cooking and sometimes even avoiding large spicy meals, which can increase your body temperature, can be helpful.

Kate says:  Fatigue management requires a coordinated approach. There are several evidence based strategies for managing fatigue. These can include a combination of exercise, psychological therapies and energy conservation techniques. 

One of the main things you can do is think about how you can plan and prioritise where you want to spend your energy. People with MS fatigue often fall into a ‘boom and bust’ pattern of activity where they’ll try and do lots of things when they have some energy but that then tends to lead to a crash in energy levels later. What you want to try and do is get a consistency in the activities you’re doing so you can maintain your energy as best you can through the day and week. That involves resting regularly throughout the day to keep topping up your energy levels. 

It can be helpful to speak to someone about how you manage your fatigue. You can ask to be referred to an occupational therapist, maybe to physiotherapy or to psychology as well, so that you can get some advice on how to manage fatigue and then start to test out the strategies which might work best for you.

Kate says: Managing fatigue with a young family can be really difficult, especially when your sleep is disturbed. Planning and prioritising what you’re doing can be really helpful. It’s good to try and have a coordinated approach with your partner or with other family members. Try to agree with them who’s going to do what childcare duties on which days and plan around the times when you might have more energy so that you’re not asking them to do things when you’re at the point of exhaustion. 

You might also want to think about getting some outside help, so perhaps getting a cleaner, especially for the heavier household chores. Maybe there’s things that you’re doing each week that you perhaps don’t have to do at all. Could you perhaps do online shopping instead of going to the supermarket? Could you buy pre-chopped or frozen vegetables? Sometimes doing batch cooking, where you cook all the meals for the week at the weekend when you have more time, can be more useful than cooking from scratch when you come home from a busy day at work.

If you have older children, you could think about different activities that they might be able to help you with. You could also consider talking to your children about how fatigue might be impacting on you. Help them to understand why you’re perhaps not able to play with them or help them at a specific point during the day, but that you’ll be able to help them later.

Kate says: There are no drugs that are licensed in the UK that are specifically for MS fatigue. There are some medications that are used for other conditions that may be prescribed to help with MS fatigue but the evidence behind them is actually quite small at the minute and there’s no real clarity as to how helpful they can be. 

One of the medications that is available is called amantadine, but it’s only effective for quite a small group of people with MS fatigue, so not everybody. Another medication that some people might be prescribed is called modafinil but this isn’t actually recommended at the moment for MS fatigue. It’s only licensed for people with narcolepsy so it’s being prescribed less often but some people with MS might still be on it.

Medications are not the first line treatment for MS fatigue at the moment because the evidence base is small. Self management strategies are still the first way to go. However if you’ve tried these and fatigue is still impacting you, you can speak to your neurologist about perhaps trying some medications to see if they do have an effect for you.