Top tips for managing difficult symptoms: MS Unfiltered

For the second year running, we have partnered with the MS Society, MS Trust, MS-UK, MS Together, the Neuro Therapy Network (previously MS National Therapy Centres) and Shift.MS, to deliver a powerful message of hope and support to more people during MS Awareness Week. 

This year we’re raising awareness of challenging symptoms which people with MS too often struggle to talk about, through our campaign MS Unfiltered. From bladder or bowel control, to sexual dysfunction, low mental health, cognitive or mobility issues and menopause, we want to create a safe space to open up the conversation and help everyone who is struggling with any of their symptoms. 

We’ve put together our top tips from for managing these types of symptoms and opening up the conversation so you don’t have to deal with them alone.

1. Speak to your Healthcare Professional

The first and most important step is to talk to your healthcare professional. It may feel uncomfortable but they are trained to handle all sorts of health issues professionally and will have heard it all before. Before you visit your doctor, remind yourself that they are there to help you, not judge. 

Preparation for your appointments can also help with the stress and difficulty of discussing uncomfortable symptoms. Before your appointment, let your GP know what you want to discuss so they’re aware in advance. Keep a symptom diary or a list of symptoms that you are experiencing. Note when they occur and anything that seems to make them better or worse. This can make it easier to talk it through in the moment, or you can hand it over to the healthcare professional. This information can be invaluable to your healthcare provider and can lead to a more productive conversation. Also, if it helps you, bring someone to the appointment with you for support.

2. Speak to others who understand what you are going through

Finding and speaking to others who experience similar symptoms can alleviate feelings of embarrassment and isolation. Support groups, whether online or in person, can provide emotional support and practical advice on how to handle discussions about your symptoms. Sharing your experiences with others who understand can give you confidence and might even offer new solutions or methods for managing your symptoms. 

If you are looking for a supportive community who understands what you are going through, you can join the Live Well Hub for free. You can also join a Circle, a group of people who live in the same area of have shared interests, who are there to support each other and create important connections with other people with MS. For more information about joining a Circle you can email us at [email protected]. 

3. Eat a nutritious diet and do regular physical activity

Proper nutrition and regular physical activity are essential in managing a variety of symptoms. For example, a fibre-rich diet such as the Overcoming MS diet can support in maintaining both bowel and bladder control. 

Studies have found that exercise improves bowel, bladder and sexual function. Regular physical activity can also boost mood and mental health, aid in cognitive function, and improve mobility over time. 

Pelvic floor exercises can help with some bladder symptoms as well. Speak to your healthcare professional or physiotherapist for some tips and exercises to try. 

For more information on how the Overcoming MS Program can help you, click here to read about the Diet and Exercise pillars. 

4. Practice stress management

Mindfulness and stress management techniques can have significant benefits for your mental health and daily life by relieving stress, improving sleep, concentration and focus. It can even improve fatigue and reduce the risk of depression. 

Stress management can take many forms, from a regular meditation practice, to journaling, spending time in nature, or practicing gratitude and mindfulness. Why not try one of our guided meditations to get you started? Read more about the ways you can manage your stress here.

5. Prepare for when you are out and about

Various charities and organisations offer helpful resources that can make being out and about less stressful and make it easier to communicate with strangers about your symptoms. For example, the MS Society provides tools like the ‘I Need Help Card,’ which you can use to discreetly inform someone that you have MS and urgently need the toilet. In the UK, you can also order a ‘Radar Key’ which offers independent access to locked public toilets around the country. The Bladder and Bowel Community also offers similar tools to help manage and communicate these specific symptoms discreetly and effectively. 

It’s also a good idea to plan ahead if you’re visiting somewhere new, and find out where the nearest toilet or place where you can rest might be. If you are out and about with others, if you feel comfortable letting them know about any MS symptoms that might affect you while you’re together, it’ll mean you’ll feel supported should you need their help. 

Tips from our community

We asked the Overcoming MS community to let us know how they manage challenging symptoms and their advice for getting the right support. Here are some top tips they shared: 

1. My advice to anyone is to talk to at least one person who understands, be it a loved one, parent, friend or even someone supportive such as a Shift.MS Buddy or someone in an Overcoming MS Circle. Talking makes everything easier and it’s really important to have the empathy of others and possible suggestions for coping.
2. Overcoming MS has helped me, mainly through the books, online resources and online support group in which many people have been candid about their symptoms and ways of coping.
3. If you are experiencing loneliness because of reduced mobility or other reasons, reach out to your local council to ask about local in person resources, events or support groups.
4. Try writing down your thoughts, concerns, frustrations and worries somewhere. Whether it’s in a journal or somewhere else, it can be therapeutic to get everything out and onto paper, it can often help to write when feeling stressed. 

Bladder and bowel difficulties 

There are a few things that MS has done to me that I don’t like talking about. One of these is incontinence, in the last few years since diagnosis, I need to “go” more often and sometimes don’t make it to the loo in time.

My advice for managing this is: 

1. Find sanitary supplies that work best for you.
2. Plan to be near loos when out and about.
3. Drink more fluids when loos are available. 

Mobility & Fatigue 

Less embarrassing but still awkward is the inability to stand for long. In social situations I am happy to grab a chair or something similar, but if nothing is available eg at a festival, this eats into my energy and has ruined the enjoyment of some events for me. In the past I have contacted event organisers to ask for additional support.

My advice: 

1. More should be done to make all events accessible, don’t be afraid to speak out to organisations or companies that aren’t doing enough to provide equal accessibility for you.
2. When you can, find a chair or somewhere to sit down to avoid becoming over fatigued.
3. Have naps during the day when you can, and get into a good sleep routine that works for you. 

Cognitive function 

Typing emails and having to check and correct each line takes me ages and is a sudden, recent change. The occasional message goes out with errors and I feel illiterate sometimes as my spelling and typing used to be pretty good.

Useful tips: 

1. Allow yourself more time to complete tasks that feel more challenging now, so you’re not putting pressure on yourself to do something quickly.
2. If you can, ask someone to check emails or messages for you so you don’t have to.
3. Take advantage of tools like spellcheck to help you.
4. Find easier ways to communicate when you can, for example try sending voicenotes more often with friends if written messages feel more difficult. 

Sexual issues 

Loss of libido can be worrying and can feel embarrasing to talk about.

Top tips: 

1. Speak to your GP or healthcare professional and ask for support. Let them know in advance that you want to discuss this and let them know if you feel uncomfortable talking about it, so they can be prepared to handle the conversation as sensitively as possible.
2. Try to be open and honest with your partner, having a conversation about sexual problems can feel like something you want to avoid, but a caring partner will want to support you and help you find something that works for you both.
3. Avoid times of the day when you know you normally feel more fatigued or stressed, and maybe try different ways to be intimate with your partner than you used to.
4. Don’t feel guilty or feel that you’re letting your partner down, you’re not and you shouldn’t feel the need to find a solution on your own. 

Do you have questions about any of your symptoms and want more advice, or have some useful tips to share with the MS community? Join the Live Well Hub and connect with others who understand what life with MS can be like. You are not alone.