5 Hacks that Help Me Manage MS Fatigue

Article By: Lyfebulb Ambassador Trishna Bharadia

Originally published on Life Effects by Teva  | 07 February 2019

Fatigue has been the one MS symptom that has been a constant for me from the point of diagnosis. It’s not that unusual, since fatigue is one of the most common symptoms of MS which means I know that I’m not alone in experiencing it.

What can make it harder to cope with though is that people experience fatigue in different ways. So just like there’s no “one size fits all” method of managing your MS in general, the same can go for fatigue.

When I try to describe fatigue to my friends I say it’s like “walking through quicksand with boots filled with water whilst experiencing the world’s worst hangover.” Fatigue hits me in two ways – physically and mentally. Physically my entire body slows down, to the point where every movement feels like a monumental effort. Mentally, I’m overtaken by a thick fog and just putting a single sentence together becomes a full-on workout for my brain.

People who don’t experience this often misunderstand the severity, so people – even well-meaning ones – sometimes have frustrating responses. I’ve made a list of the things people say about fatigue that I really wish they wouldn’t.

5 things not to say to someone with MS fatigue

Fatigue isn’t like regular tiredness. It can be completely arbitrary and disproportionate to your activity levels. Plus, it feels different; I can quite easily tell the difference between regular tiredness and MS fatigue.

Sleep doesn’t always help. In fact, a lot of the time a nap is no more than a sticking plaster. Even if it might make me feel better for a few hours, very quickly I’ll be back to square one. It’s like never being able to fully recharge the battery on your phone.

Seriously?! I would love to be able to do everything that I want to do, when I wanted to do it. When I think about having a “lazy day” it often involves watching a movie, eating ice-cream, reading a book or chatting on the phone with a friend. When fatigue hits, even doing those things uses too much energy.

Everyone with MS is different and can experience different sets of symptoms. While fatigue is common, not everyone experiences it. People also have different coping mechanisms depending on how fatigue affects them. So it might not always be obvious if someone is experiencing it, if they’ve been able to manage it effectively.

The way an individual views each of their MS symptoms is personal. Someone I know with MS once told me that for them, losing their ability to walk properly and having to use a wheelchair was by far the lesser of the two evils when compared with his debilitating fatigue. For someone else, the opposite might be true. So, if you’ve never experienced it, don’t make a judgement on it.

Things I wish people would say when I experience fatigue

If you do know someone who is experiencing fatigue and you’re wondering what you could say or do for them to offer solidarity and support, I have listed three of the most important things that I would find useful:

I dread getting invitations and having to turn them down because the place is too far, the timing isn’t right, or I feel like I can’t cancel at the last minute if I’m having a bad fatigue day. Being able to do things closer to home and at times when I know my energy levels are likely to be at their best can make things easier when planning social occasions. And being understanding if I have to cancel at the last minute also goes a long way. I wouldn’t cancel unless I really had to and I’ll already be feeling rubbish because I know I’m going to miss out.

Offering a lift, picking up some shopping and suggesting an alternative if we’ve had to cancel plans are all things that can make things easier. I was at a wedding this summer and it was going to be an all day/late night event. The couple whose wedding it was offered me use of their hotel room during the day to be able to rest if I needed to, because I’d told them I might not be able to stay the whole time. Knowing that there was an option to rest if I needed to, meant that I could relax and enjoy the day much more. But please, don’t assume you know what will help – just ask me!

When fatigue hits I feel rubbish. I feel frustrated. And my mood completely dips. Something as small as receiving a nice text message from someone, making exciting plans for a future date, or doing something that will make me laugh or smile just helps to lift my mood. It won’t cure the fatigue but at least my mood might improve!

Hacks to help you manage your MS fatigue

There are no real hacks to cure fatigue, there are just ways to try and manage it. I’ve had MS for ten years now and fatigue was one of my first symptoms – I’d been experiencing it for quite a while even before my diagnosis. I can’t actually remember what it’s like to feel 100% full of energy anymore! But over the years I’ve learnt what works for me and what can help to optimise my “battery levels.”

I make lists. Lots of them. I prioritise. I schedule. I keep an appointments diary for EVERYTHING. I colour code. I cross-off and tick. Writing things down not only helps me to remember things when my brain gets foggy, it helps me to see very clearly what the most important things are, and which things are going to need the most physical and/or mental energy. I can then do those things when I know my energy levels will be at an optimum and do the “easier” or “lesser” tasks when my battery is running lower. This also helps me to pace myself – if I know I have a particularly busy day scheduled, I’ll make sure that the following day is more relaxed.

I find that waking up at around the same time (even on weekends), eating my meals at around the same time, and having a regular bedtime routine can really help my body to know what’s happening and when. This can also help with other symptoms that can exacerbate fatigue, such as bladder issues. So not drinking too much before I go to bed means I’m less likely to have disturbed sleep due to getting up to use the bathroom in the middle of the night.

It sounds counter-intuitive but regular exercise actually makes me feel better. Muscles which aren’t used regularly become weaker, which means that more energy is needed to carry out general tasks. This makes fatigue worse. Exercising regularly will keep my body in as good a shape as possible. I’ll adjust what type of exercise I do depending on my energy levels. I love dancing, and that’s something I’m able to adapt if I’m having a “bad energy” day. Otherwise, a gentle walk or stretching and muscle strengthening exercises are just as good. Exercise also helps me to sleep better and feel good about myself.

This has been really hard for me. I’ve always been very independent and I like to do things myself. However, I’ve learned that accepting help often means that I can get more done or enjoy things more because I’m conserving precious energy. I have a few people who are close to me who I know I can really rely on for support. They understand me and my fatigue and I know I can call upon them if necessary.

In time, I’ve learned to accept things more, deal with the frustration of living with fatigue (even though it’s still annoying!) and develop alternative interests that fit around the ups and downs of my energy levels. I now enjoy being at home just as much as being out. I’ve learned to enjoy my own company, so when I do have to stay at home I’m not as sad about it.

Most of all, I’ve learned to be kinder to myself. If I can’t get something done, I just let it go.

UK/MED/19/0001 January 2019

A blood test for multiple sclerosis? Expect one in late May

Six panels of an MRI scan.

The medical toolbox for treating multiple sclerosis (MS) has progressed in leaps and bounds over the last two decades, as highlighted by the recent approval of Ocrevus for the most severe and treatment-resistant form of the disease.

Despite this success, the underlying disease mechanisms and triggers are not well understood. This makes diagnosis a challenge — with very high stakes. The longer the disease progresses without treatment, the more irreversible neurological damage can be done.

To that end, Nashville, Tennesee-based IQuity will launch a first-of-its-kind blood test for MS in late May. The technology, originally licensed from Vanderbilt University, analyzes long non-coding RNA (lncRNA) in the patient’s blood to identify patterns indicative of the disease.

“To our knowledge, we’re going to be the first blood-based RNA test for multiple sclerosis, and definitely among the first – if not the first – in the field of autoimmune diseases,” said Chase Spurlock, CEO and cofounder of IQuity, via phone.

Spurlock said the test, dubbed IsolateMS, has proven accuracy greater than 90 percent. It can also deliver results in as little as seven days. What’s more, the disease markers were present at the earliest stages of the disease.

“This was pretty exciting because, a lot of times, the molecular patterns that we can discern from the immune cells precede the physical manifestations of disease,” Spurlock stated.

By comparison, today’s diagnostic criteria actually include “the dissemination of space and time.” In other words, neurologists look for disease progression in successive MRI scans and lumbar punctures (spinal taps), an invasive process that can take months or years.

That’s far from ideal. Some 80 percent of patients have a relapsing-remitting form of MS, characterized by cycles of disease remission and flares or “attacks” when the immune system does irreparable damage to the brain. By rapidly diagnosing the disease, physicians can intervene more aggressively to prevent a loss of function.

“Early scans paired with blood tests like ours would give more information to the provider that they have traditionally had,” Spurlock said, noting that it’s intended to be used in concert with tools such as MRIs for a faster, more definitive diagnosis.

A spokeswoman for the National MS Society said the organization is still…

Roche’s new MS drug Ocrevus is already a remarkable success

An arm with drip infusion. therapy intravenous IV

Late Tuesday, the FDA gave Roche subsidiary Genentech the final green light to market Ocrevus (ocrelizumab), a monoclonal antibody for the treatment of multiple sclerosis (MS).

We’ve seen this drug before. It’s an updated version of Rituxan (rituximab), first approved in 1997. Both share the same anti-CD20 mechanism of action, though the manufacturing is slightly different (Ocrevus is fully humanized to reduce the likelihood of an immune response).

It’s an old drug, with a lot more to give. Here are just some of the ways Ocrevus and Rituxan are changing the medical landscape.

It’s the first disease-modifying drug for the most severe form of MS

Approximately 85 percent of patients are diagnosed with relapsing-remitting MS. This subtype is characterized by periods of disease stability, ‘attacks’ when symptoms worsen, and then a gradual recovery of some of the lost function as the disease subsides once again.

By comparison, primary-progressive multiple sclerosis (PPMS) is a downward slope with no flat ground. It affects around 10 percent of MS patients, who experience a steady worsening of symptoms.

Since the 1990s, many different therapies have been approved for relapsing-remitting MS. However, none have been able to alter the course of PPMS.

In a study of 732 patients with a primary-progressive diagnosis, Ocrevus substantially delayed the advance of the disease. It’s far from a cure and many patients didn’t respond — but something is better than nothing.

It runs counter to the longstanding belief that MS is driven by T-cells

Both Ocrevus and Rituxan target a specific receptor called CD20, which is expressed on the surface of mature B-cells. This means the drug can selectively eliminate a core component of the immune system, which gives rise to certain lymphomas, leukemias, and autoimmune diseases.

After gaining approval in 1997 for the treatment of non-Hodgkin’s lymphoma, scientists began researching Rituxan’s potential to treat rheumatoid arthritis (RA), a B-cell mediated autoimmune condition. In 2006, it won approval for RA patients that didn’t respond to…

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