Managing MS symptoms
Making sense of MS: In this film we ask people what advice they could give about managing the symptoms of MS.
Managing MS well usually involves using several approaches at once. As everyone’s multiple sclerosis is different, the best combination of MS treatments will be different for each person.
Treatment for MS may include medication, therapies, such as physiotherapy, and self-management techniques. Some people explore the use of complementary or alternative medicines (CAMs). Please consult with your neurologist, MS nurse or GP about the best treatments for you.
This section deals with treatments for symptoms of MS. There are also disease modifying drugs (knowns as DMDs or DMTs) which can reduce the number and impact of relapses.
MS Decisions, our interactive decision aid can help if you are considering a DMD.
Treating MS symptoms
Treatments for the symptoms of MS include:
- drug treatments like painkillers
- therapies, such as physiotherapy to help with muscle stiffness, or cognitive behavioural therapy for anxiety or depression
- management techniques, for example pacing yourself to minimise fatigue
- rehabilitation which can improve day to day living if your symptoms are making this difficult. You may be given aids and equipment that can help.
Only symptomatic treatments are discussed here. There is a wide range of possible treatments so we will point you to the relevant resources for more detailed information.
You may prefer to focus on information about the symptoms that are troubling you now. It can be a bit overwhelming to read about all the possible symptoms of MS. Not everyone experiences all of them so you might like to leave aside information that is not relevant to you.
Complementary and alternative approaches
Complementary approaches are used together with conventional medicine and are generally accepted as improving overall physical and mental wellbeing. Alternative medicine is seen as outside the mainstream by medical professionals. Where to draw the line between the two types is debatable and everyone sees it differently.
If you are considering using complementary or alternative approaches, it is important to assess any risks and the costs, as well as the posible benefits. Some alternative medicines, for example St John's wort, can interact with prescription medicines so you should have a discussion with your health professionals if you are considering taking anything.
There is increasing evidence that exercise can help with MS symptoms. This doesn't have to be energetic and you may find that gentle approaches like yoga, Pilates and Tai Chi which focus on flexibility and balance, are helpful.
Practices such as meditation and mindfulness can help you deal with stress, anxiety or depression. Aromatherapy, reflexology and massage may also be helpful.
What if a treatment isn't working?
You may need to give a new treatment some time to work, as the effect may not kick in straight away. Your health professional may have said how long this might take – perhaps several weeks but, for some treatments, it may take a few months. They may have scheduled an appointment to review how you are getting on after an appropriate time.
Secondly, are you doing exactly what was suggested? If you're unsure, you can take a look at the label on your pack of pills and the leaflet inside or at the instruction sheets from a therapist. If in doubt, ask your health professional or a pharmacist. It may be hard to remember, or a bit of a nuisance, but sticking to the treatment plan should give it the best chance of working well.
For some medicines, the dose has to be increased gradually until the right level is found. In this case, you may be started on a low dose then either given instructions on when to increase the dose, or invited to a review before any decision is made about whether to increase the medication.
Lastly, if the treatment is still not working, it is worth asking if there is something else that you can try. Not all treatments work for everyone and it can be a case of trying several to find out which one works best for you or whether a combination of several drugs is the best option.
Can you explain the naming of drugs?
Drugs often have more than one name which can be rather confusing. Each drug will have a generic name, which is the official medical name for the active ingredient in the medicine, but it will also have a brand name, which is the trade name given by the manufacturer.
There may be more than one brand name if the same, or very similar, medicines are produced by more than one manufacturer. Brand names always begin with a capital letter but generic names do not. An example is the treatment for neuropathic pain called gabapentin, which has the brand name Neurontin.
Do I have to pay prescription charges?
In England, people with MS have to pay the usual prescription charges for any medication, unless they qualify for free prescriptions for some other reason. Anyone can buy a prepayment certificate which will cover all their prescription charges for the next three months or for one year, no matter how many prescriptions they have. This is often cheaper.
Prescription charges are reviewed by the NHS every year and we up date our A-Z of MS entry when they change.
In Scotland, Wales and Northern Ireland, there are no prescription charges.
When should I seek treatment?
It can be difficult to know when to seek treatment and when to sit things out. There are a few things you can look out for which may explain why your symptoms are worse at the moment:
- Do you have an infection such as a cold, flu, tummy bug or a bladder infection? If so, this can cause a flare up of symptoms. Your symptoms will improve as you recover from the infection so you should look after yourself in the usual way for a cold, flu or tummy bug, or visit your GP or MS nurse to see if you need antibiotics for a bladder infection.
- Are you too hot? Many people with MS are sensitive to heat. You may find that hot weather makes your symptoms worse and the same can happen if the central heating is too high. Do what you can to get cool and symptoms should improve.
- Are you too cold? Some people find that being too cold makes their symptoms flare up although this is not as common as being too hot.
- Are you feeling stressed? Stress can make your symptoms harder to live with and, for this reason, it is a good idea to manage stress as much as possible.
When to seek support from a health professional is a personal decision, but here are some suggestions:
- If you have new symptoms or your symptoms are suddenly much worse or if you are having serious difficulty walking and none of the above applies then it is probably worth contacting your MS nurse straight away especially if you experience relapses. If you are not sure, you can wait a few days to see if symptoms improve.
- Sometimes, symptoms worsen gradually so, after a number of months or years, this adds up to a big change. In this situation, don't ignore symptoms for too long but ask your MS nurse for advice. You should have your MS reviewed about once a year but, if this isn't happening or your appointment is a long way off, you can ask for a review.
- If your symptoms are worrying you or interfering with your normal daily activities or your quality of life then don't suffer in silence. The same applies if your symptoms are impacting negatively on your family and friends.
- New symptoms may not be due to MS so speak to your GP or MS nurse if you're concerned and make sure you have all the usual health screenings, such as for diabetes, high blood pressure and cancer.
Why do MS symptoms vary from day to day?
Making Sense of MS: Lindsay Harrison, MS Specialist Nurse, and Ben Turner, Consultant neurologist, explain why MS symptoms can vary so much.
Who will support me?
MS services work differently in different areas. it's a good idea to check with your MS team in advance so that you know who you should contact, and how to contact them, if you are concerned about symptoms.
Your symptoms may be reviewed by your neurologist, your MS nurse or someone who specialises in a particular therapy or in the management of a particular symptom, for example pain, continence or spasticity (muscle stiffness). Your MS nurse, neurologist or GP can refer you to other serivces if you need them.
Health professionals should be happy to work in partnership with you so that you can select the best treatment option. You will be in charge of managing many aspects of your MS, like taking medication as prescribed or undertaking exercise as suggested by a physiotherapist.
Family and friends will want to support you. Occasionally, it may feel like they are pushing you to adopt a particular treatment. If you're over 18, it's your decision how to manage your MS, although it's good to listen to the views of those around you.
Are there new or experimental treatments I should consider?
Watch out for anyone, including on the internet or in the press, who claims that they can cure MS. At the moment there is no cure. Also be careful of people selling treatments or supplements and don't buy anything that doesn't come from a trusted supplier. The alternative treatments market is poorly regulated and going abroad for treatment can be risky as well as costly.
The most important thing is to use reliable sources of information, such as the MS Trust. Other sources may sound very convincing, but may jusst be opinion, marketing hype or someone's personal experience, presented as if they were facts that will apply to everyone.
If you find a treatment of interest, do further research on the websites of the main MS charities. if there's been a breakthrough, they will be reporting it too. If they haven't, or have a different take on the research, then consider what is being said. Look to see if the research is at an early stage as it may be a while before that treatment becomes available to everyone and it may not get to that stage at all.
It can be tempting to try an experimental controversial treatment but the risk of harm, significant side effects and high costs should be considered. Try not to be pressured into something by well-meaning friends or family. If in doubt, have a chat with your MS nurse of GP.
MS is a very active area of research and new treatments are coming through all the time.
Don't feel that you have to put up with all your symptoms and that this is an inevitable part of having MS. Keep asking if there are any treatments, including any new ones, since your last appointment.
Life with MS
Living effectively with MS means using all the resources available to manage your condition well. Find information on diet, exercise, family and relationships, travelling and more.
What is MS?
Multiple sclerosis (MS) is a lifelong condition that affects the central nervous system with different people experiencing different symptoms.
Life after diagnosis
A diagnosis of MS can affect the choices you make about your life and future goals. Find out about making life choices after being diagnosed.