Manage your condition & health
Nothing, yes nothing can help deal with the fatigue that MS brings to many. I mean, DOING nothing - sometimes you need to accept that doing nothing is the best option. You are not giving in, slacking, being weak - this is MANAGING YOUR CONDITION. That said, some things you can consider trying include:
APS therapy aka Action Potential Simulation - APS therapy is not suitable for all so seek advice on whether you could try this therapy offered at BMSTC which some find helps with peripheral neuropathy, pain and fatigue.
Ataxia is the medical term for lack of voluntary coordination of muscle movements. In MS this can be seen as clumsiness, unsteady gait, impaired eye and limb movements, and even speech problems. Research suggests as many as four out of five people with MS will have ataxia to some degree at some point. Ataxia is usually treated with a combination of rehabilitation and compensatory strategies.
Rehabilitation via an exercise programme to strengthen the core muscles may help. This is because many people with ataxia have poor balance and will spend much of their day sitting down. This can lead to weakness of the muscles which can make the problem worse. A physiotherapist may be involved to identify exercises that help you to build up core stability and strength in your muscles.
Brain fog - Not everyone with MS will develop memory or thinking (cognitive) problems, and many who do will only be mildly affected. Cognitive problems can be caused by MS, but they can also be affected by other things, including stress, fatigue and infections. The kind of problems that are more common in MS include difficulty concentrating, being unable to find the right word (‘it’s on the tip of my tongue’) and short term memory problems. There is a lot of information on coping mechanisms and ideas to help day-to-day on the MS Society site.
Brain health - Shift.ms offer a guide written by an author group which includes world-renowned physicians, it is a resource to help people with MS understand how they can keep their brains healthy and request the highest possible standard of care from healthcare professionals. The aim of the guide is to help people to take control and take positive action to maximise lifelong brain health. Click here to view a copy. Get a free DVD of exercises designed for people with MS – Move it for MS – from the MS Trust website
Cognition problems in everyday life generally fall into one of six types of problem. You can work out which type of thinking is tricky for you, and get the right tips and advice by clicking on one of the everyday problems below. Each tile links to information that is helpful for that type of problem. See the MS Trust site to learn more.
Complementary therapies - Wellbeing is a big part of good health. Many people find complementary therapies very beneficial and help to manage their symptoms. As with all treatments, the benefits vary from person to person so try them and see what they can do for you. As well as treating individual symptoms, complementary therapies help lower stress which may be a trigger for relapses and therefore is an important part of managing MS:
- Acupuncture – available at BMSTC
- Hydrotherapy – MS Society service held at the Royal Berks hospital, talk to Diane Goodlock 0118 9267174
- Pilates – available at BMSTC
- Advice from a specialist if experiencing choking when drinking/eating – talk to your MS nurse.
- Hydrotherapy - at the Royal Berkshire Hospital, see here for details
Counselling - anxiety, depression, stress and phobias are common in people with MS, counselling can help - here are some options for support
Disease Modifying Drugs - DMDs - whilst there is no cure for MS, there are a number of drugs available which aim to reduce flare-ups, the intensity/outcome of them etc. See the MS Trust site for details and talk with your MS nurses.
Eye checks - if you can't get to an optician, they may come to you. Try Regular checks by an optician are key for eye health. However, getting to an optician and into their chair can be an issue for some. You could try Visioncall Home Visiting Opticians on 0845 050 1831, delivering free NHS eye tests at home. Or the Outside Clinic on 0800 60 50 40 or 01793 64 22 00. Specsaver also offer this service.
Fatigue - There are periodic Fatigue Management programmes run by the MS nurse with input from physiotherapists and dieticians – talk to your MS nurse if you are interested. One-to-one fatigue management is also provided by the community MS Specialist Occupational Therapist, contact Wokingham 0118 9746800 or Reading on 0118 9373737.
Foot health care – available at BMSTC, especially important if you have peripheral neuropathy (numb feet) so may not notice an infury risking infection. Bamboo socks are naturnally anti-bacterial and worth considering; a selection is on sale in the BMSTC shop
Foot drop – when your normal gait changes due to the foot not rising when walking, foot drop can lead to trips and falls as the foots scuffs on the ground. FES - functional electrical simulation - might help, see more here.
Gluten & diet - Some patients with MS pinpoint wheat gluten as a cause to many of their symptom outbreaks, and once they remove it from their diets, they notice a drastic decrease in their symptoms. Eating gluten-free and anti-inflammatory foods can help you better manage your MS symptoms. Try eliminating key ingredients from your daily meal plans, like gluten, dairy, and sugar, and note if there are any changes in your symptoms. It is important to make these changes slowly, removing one ingredient at a time. This will not only help you narrow down the possible influences over your symptoms, but it will also reduce the stress on your body.
Dietary changes can throw off the balance of your body and cause new symptom outbreaks, so discuss with your doctor the best way to approach a new diet and implement it healthily. However, finding the right approach is entirely up to you. Talk with your doctor and others in the MS community in order to find the approach that’s right for you. Only you know how your body will respond to certain behaviours, and this is important when deciding how you will reduce your MS numbness.
Hot chocolate has been shown to help reduce fatigue in some folk. But, it is the dark, flavonoid, anti-oxidant kind to reach for.
Hydrotherapy - Hydrotherapy is physiotherapy in a warm water pool where a physiotherapist works with you as you gently exercise in the pool. Hydrotherapy makes physiotherapy much easier because the warm water relaxes taut muscles enabling you to do exercises that you could not do out of water. The water also bears your weight making your body feel lighter. Sessions run at the Royal Berkshire Hospital on Wednesday evenings.
Keeping active - Try the fitness advice service offered through the Berkshire MS Therapy Centre. An experienced Physiotherapist can assess and discuss your fitness requirements and help you to carry out a programme at the MS Therapy Centre or advise on appropriate exercise which can be done at your local gym or recreational exercise facility and referring you through the GP prescribed exercise programme if desired. Call them on 0118 901 6000 or email email@example.com. Wokingham Council and Reading Council offer classes for those with long term conditions – please talk to your healthcare professional regarding any rehab that would suit you as some of the sessions require a referral
Leg weakness - "Legs like jelly or noodles" and "legs that feel heavy like cement" These are some of the ways MyMSTeam members describe leg weakness. Leg weakness can come on suddenly, and may happen after exertion. For people with multiple sclerosis, leg weakness can contribute to problems with walking and make it harder to avoid falls. In a survey conducted among over 1,000 MyMSTeam members, two-thirds reported struggling with walking, mobility, or balance. Leg weakness can also contribute to feelings of tiredness and fatigue that are common in MS.
Mindfulness can help us cope with the stresses and strains of everyday life - find out more here.
Monthly MS nurse clinics at BMSTC - held once a monthly, contact the team direct for an appointment on 0118 322 5369.
MS Hug is also known as banding or girdling, is a symptom of multiple sclerosis in which someone feels as if they have chest pain, rib pain or a tight uncomfortable band around their chest. It can be felt anywhere between the neck and the waist and may feel so tight around the chest that it’s painful to breathe. For some people, it can be pressure on just one side of their body. Others experience a symptom similar to the MS hug but in their hands or feet, where it feels as though you are constantly wearing gloves or boots. For others, the tight feeling is around the head. The feeling can range from annoying to very painful. The feeling is different for everyone and may be described as pressure, an ache, a tickle, a pain or a burning feeling. It may be sharp or dull and can be short or long lasting.
Newly diagnosed - Being newly or recently diagnosed with MS (multiple sclerosis) can feel overwhelming. The first thing to remember is there's a whole community of people here to help. Check out the guidance from the MS Society.
Numbness is one of the most common symptoms those with MS experience. The numbness can manifest in a myriad of ways. Some will experience a tingling of pins and needles across their body, others may feel burning sensations, and still others may lose complete sensation of one or more parts of their body. There is no way to predict how numbness will affect you, and there is no treatment proven to eliminate the numbness completely. However, there are many ways you can cope with and reduce your numbness - Find out more here
Oxygen therapy – Available at the Berkshire MS Therapy Centre (bmstc.org) – I go once a week, and do a session on the outside of the tank. ‘Dives’ inside the chamber are either 33ft. 24ft or 16ft, some go fortnightly while others go twice a week.
PEEP or Personal Emergency Evacuation Plan - If you needed to evacuate a building due to an emergency, could you? And could you evacuate in a safe way, in a reasonable time, without risk to yourself or others? A PEEP is an individual escape plan for anyone who may not be able to quickly reach a place of safety unaided in the event of an emergency. The Health and Safety at Work Act 1974, the Management of Health & Safety at Work Regulations 1999 and the Disability Discrimination Act 1995 require employers to implement effective arrangements for emergency evacuation for all employees.
The purpose of a Personal Emergency Evacuation Plan (also known as a PEEP) is to provide people who cannot get themselves out of a building unaided with the best possible escape plan in a fire emergency. Find out more here www.worksafe.uk.com/personal-emergency-evacuation-plan and think about how you could evacuate your home in an emergency too - be prepared!
Physiotherapy – Strengthening your core will help with balance – talk to your MS nurse and/or the physiotherapists at the BMSTC. You’ll need an initial assessment – call Berkshire MS Therapy Centre | (bmstc.org) to enquire. They offer one-on-one sessions and there are classes at the centre and by Zoom too, such as chair yoga.
Relapses & flare-ups - A relapse is where symptoms suddenly appear or become significantly worse, for a period of time. The symptoms usually come on very quickly over a period of hours or days. People call relapses by different names including an attack, episode, flare up or an exacerbation.
Relapses can last anywhere between a few days, up to weeks or even months. In between relapses are periods of remission where you may have no symptoms, or your symptoms are relatively stable. In relapsing remitting MS periods of remission can last from months to years until they're interrupted by a relapse. They tend to happen most often in the first few years after being diagnosed with MS but people can experience a relapse at any time. See here for more information.
Rest - Don’t fight it; don’t try to work through it. When fatigue hits – and for me that might mean my speech get slurred, my legs feel heavy, I can’t concentrate – the best thing is to have a lie down (resting does not mean sitting down with a cuppa in front of the telly) so you can relax your whole body. It is all about managing your condition. Sometimes you need to accept that doing nothing is the best option. You are not giving in, slacking, being weak - this is MANAGING YOUR CONDITION.
Rosemary - Herbs have played a part in medicine and folk lore for years, but what is true and what is myth? Lavender is generally known to aid relaxation, even improve sleep. But what about rosemary, or is it just for use when cooking lamb!? Visit www.organichomeremedies.com to search for rosemary and see an article which looks at the impact of sniffing the herb and an increase in memory function. And the MS Trust has a view too, see this article https://www.mstrust.org.uk/life-ms/wellbeing/thinking-and-memory-problems). Of course, you decide if you believe in it, or take it all with a pinch of, er, rosemary?
Sequela Foundation - Supporting neurological well-being in East Berkshire, the Sequela Foundation was set up in 2012 to provide support for people with neurological conditions such as Parkinson’s, Multiple Sclerosis, Stroke, Ataxia – to name but the most common ones.
Sleep - Poor sleep is common in people with multiple sclerosis, with about 50% of people with MS reported to experience some form of sleep disturbance. Despite this being well known, sleep disorders are under-diagnosed and under-treated in people with MS. And some folk find increased anxiety or uncertainties affect sleep as well. See the MS Trust website for further information www.mstrust.org.uk/a-z/depression.
If you have trouble getting off to sleep, or getting quality sleep check out the hints and tips on offer from Michael Mosley. Podcasts, video clips etc might just offer ways to get those 40 winks, or more, we all crave.
Stay well in cold weather - Medically Reviewed by Carol DerSarkissian, MD 09/20 - After the hot, humid days of summer, the colder temperatures in the autumn and winter can come as a shock to our bodies. If you have a condition like multiple sclerosis, cold temps can make your symptoms worse and make you flat-out uncomfortable. You might find that it’s harder to move your limbs, you get more muscle spasms than normal, or your muscles feel tighter. If your symptoms get worse in cold weather, it’s usually for a short time. A few simple tips can help you stay comfortable and warm in the fall and winter.
- Try to get moving. When you have MS, there may be times when you find you can’t move around as easily as you’d like. When you can, try to get some moderate physical activity like walking or stretching. It’ll help you burn energy and warm up.
- Dress in layers. This will help keep you warm. And if you get too hot, you can easily remove layers and stay comfortable. When it’s very cold, it’s a good idea to wear hats, thick socks, or lined boots. This will keep heat from escaping through your head or feet.
- Keep your hands and feet warm. Doctors believe that MS can cause blood vessels in your hands and feet to overreact to cold temperatures. If you have MS, you may also be at risk for Raynaud’s phenomenon, a condition in which your fingers and toes lose heat. They turn from white to blue to red as the blood begins flowing again. You may feel numbness, pain, or like someone is sticking you with pins and needles. To protect your hands and feet from the effects of the cold, try wearing hand warmers or using a heating pad. But don’t place the heating pad directly on your skin. It could cause burns or blisters.
- Warm your insides. The easiest way to do this is to eat hot meals like soup. You can also sip hot drinks like tea or coffee. Pour them into an insulated mug to keep them warm longer and help limit your trips to the kitchen.
- Get some sunshine. Even on crisp autumnal and cold winter days, who doesn’t love the feeling of sunshine on their shoulders? Step outside and soak up some rays. You’ll warm up, and you’ll help your body make some much-needed vitamin D. An added benefit? A little sunshine might help boost your mood.
Symptoms - Some MS symptoms may go unreported to doctors as people with MS don't realise problems they might be having are MS-related. See a video of some of the lesser-reported symptoms. Help is out there if you know to ask for it. https://www.youtube.com/watch?v=ChAXCz8LpyM&feature=youtu.be
Talk health are one of the UK’s leading online health communities, providing free interactive support and information on a wide range of health conditions. They offer a host of tools and materials to help you better manage your health, chronic condition or disease. From treatment options to care tips, check out our expert clinics and community discussions from fellow members sharing experiences and knowledge on how to make life easier. See www.talkhealthpartnership.com/.
UTIs- A urinary tract infection (UTI) can exacerbate MS symptoms. Keeping well hydrated is important in the heat - check you output against the 'tinkle test' dehydration urine colour chart to check if your fluid intake is at a healthy level. You can buy the test strips to check for infection online and in pharmacies. This information sheet tells you what to check for.
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