Fatigue in MS – and what to do about it

Fatigue – that horrible overwhelming inability to do another thing, sometimes even to think straight, is one of the most disabling invisible problems of MS. When I took a poll of the top symptoms that people wanted to troubleshoot in a holistic way, Fatigue was top. So here goes:
fatiguedWhy do people with MS experience fatigue?

Fatigue in MS is  of 2 types. Motor fatigue, or ‘short-circuiting’ fatigue, is when the difficulty of transmitting the electrical nerve signal down demyelinated, or damaged nerves, overwhelm the body’s ability to produce  ATP ( the energy molecule). Fatigued muscles just have to stop; you feel as if you’ve run a marathon, it’s like hitting ‘the wall’ for an athlete, and you have to sit down. After a short while, energy is replenished, and you can go again.

The second type of fatigue is more of a  widespread, overwhelming all-over fatigue, described here by MS campaigner, Shoshana Pezaro in 2015:

“It’s an absolutely crushing physical and mental symptom that cannot be overcome through will-power. When fatigue hits, I feel like my plug has been pulled out. Physically my body suffers extreme weakness and heaviness and every tiny movement, even raising my hand, is like fighting through thick treacle. But the mental effects are worse. The world separates from my consciousness. My brain is shrouded in a deep fog. It is a dreamlike state where I can hear people and see people, but I somehow I cannot connect. Fatigue cannot be fought, only managed through rest and care.”

Lots of research and debate has been carried out about what causes this type of fatigue; an interesting study reported at this year’s ECTRIMS conference investigated whether fatigue was more strongly linked to lesions in the brain, or to inflammation. They found a strong correlation to inflammation as the driver of this type of fatigue.

So to address Fatigue, we need to address the MS itself, and take both a short and a long view. The good thing is, there is a lot you can do to address both MS itself, and the problem of fatigue.

Starting with the most simple, here’s my list:

  •  Obviously read all the MS Society  ( you can download here)

http://www.mssociety.org.uk/ms-resources/fatigue-ms-essentials-14  and

pace yourself, budget your energy, and:

  • Get your groceries delivered online
  • Call a family meeting, explain that fatigue is a physical problem in MS, and give the family information about it, set rules and boundaries and share out the chores!
  • Save your energy for the stuff that counts – if you can get a cleaner, do so!
  • Fluids – ensure you drink plenty of water
  • The drug  Amantadine can be tried for fatigue in MS but it only seems to help about 20% of people, and sometimes causes unpleasant side-effects

Sleep

Baby smiling in bed with eyes closed and arms out.

It seems obvious, but if your sleep is poor, you will have fatigue!

Sleep problems:

  • No caffeine drinks after 6pm
  • Consider having something to eat before bed to prevent low blood sugar
  • Try to get outside as early as possible (once the sun is up) in the day, and making sure you are outside for at least ½ an hour a day; this helps to set your body’s circadian rythm( wake-sleep cycle)
  • Address causes of waking if possible – eg bladder, worrying, spasm, pain
  • Consider natural sleep aids like ‘Nightall’ etc which are made from hops and valerian – check that its ok to take these with any medication you are on
  • Use the HeartMath technique, for 10 minutes every morning, plus whenever you experience negative or worrying thoughts, or mind is free, and when you’re going to sleep at night.

heartmath-pic

  • Lock into a positive emotion

  • Focus on heart area

  • Breathe in for 5 seconds and out for 5 seconds in one long continuous cycle

  • imagine blowing up a balloon in your belly as you breathe in – your abdomen should rise first, then abdomen squeezes in as you expel the last bits of air out.

HeartMath is wonderful – I can’t find a good website to make it simple; you can buy all kinds of gadgets to allow yourself to see how you’re doing and coach yourself further, but the basic technique is this simple, and it has powerful and far-reaching effects on your resilience to stress, amongst other things.

Additional extras to consider.

mitochondria-2

Energy is created in our bodies by mitochondria, the ‘powerhouse’ of the cell. Each cell contains up to a thousand mitochondria. Mitochondria take fuel from the food we eat, and transform it into energy. They generate a chemical called ATP, which transports the energy for use by the body.

In order to function properly, mitochondria need the fuel of excellent nutrition and oxygen.

Dietary factors

  • Everything that we put in our mouths can either be pro-inflammatory or anti-inflammatory; what we eat has an impact on inflammation.
  • A study published in July 2016 showed improvements in fatigue over the course of one year,  in people with MS who adopted a low fat, plant-based diet

plant-based-diet

  • See www.overcomingmulstiplesclerosis.org  for this type of diet, which could be expected to reduce inflammation, www.fatfreevegan.com for recipes.
  • Also  have a look at the work of Terry Wahls, a medical doctor who reversed her own secondary progressive MS with advanced nutrition,  online. I prefer the overcomingms diet as above, but Terry’s extras like green smoothies and intense nutrition make sense to add in.
  • Be aware of food intolerances. More people with MS have full blown celiac disease than in the general population, but you can also have a milder food intolerance that is not picked up by clinical allergy testing. Experiment to find out if some foods worsen your fatigue, by excluding them for 3 weeks and then bringing them in and noticing. Common irritating foods are bread, cheese, dairy products, gluten grains, sugar, and sometimes beans, but many people have individual things that they don’t tolerate.
  • Vitamin D3 at least 5000 IU daily & consider minimal erythmal dose sunbed. Some people may need more to get into the optimal range of 150-200nmol per litre; you can get your blood checked at http://www.vitamindbloodtest.org.uk
  • A study published this year found a significant reduction in fatigue in people with MS who took 500mg of Co-enzyme Q10 daily.
  • Omega 3 fatty acids are found in oily fish, nuts, seeds and whole grains, and help to calm down and prevent inflammation, aswell as helping to store and retain energy. 20g daily can be supplied by 2 dessert spoons of cold pressed flax seed oil used cold, and make sure it’s fresh; one example; www.flaxfarm.co.uk
  • B vitamins – some people are deficient in these, which can mimic symptoms of MS; some people report these help with fatigue; probably when there has been some deficiency present.
  • Probiotics & fermented foods– very important to restore health of gut, especially after antibiotics, which contributes to health/ energy

Exercise  &  Oxygenation hyperbaric-chamber-10-person

  • Many people report that hyperbaric oxygen improves MS fatigue; if this isn’t possible, at least do deep breathing!
  • Just had great comment in response to this post by Frank:
  • “The very best thing for me has been taking Oxygen Therapy at the MS Centre. There are 56 centres to choose from so there’s almost bound to be one near you – unless you live in Northumberland or Cumbria. 
    With Oxygen Therapy and MS, lots of us find there there is an optimum pressure. The ascending protocol suggests that people should start at 1.5 ATA, move to 1.75 ATA and then try 2 ATA. After each session note down how you feel immediately afterwards and then again about 24 hours later. Once you’ve tried all three pressures you should know the one that suits you best.
    As you say, Miranda, it does not work for everyone, but then neither do any of the drug or dietary therapies – we are all different – however, I’ve found it great for reducing my fatigue and if I miss my weekly session, I certainly feel the impact. Some of my colleagues find they are really tired after the Oxygen Therapy but then feel full of energy the next day, others, like myself, feel the benefit within a few hours. Whatever your views, it’s definitely worth giving it a go.”
  • Regular cardiovascular exercise can help to raise oxygen and energy levels, in your own zone of tolerance. Exercise has been shown to be strongly anti-inflammatory – make it part of your daily routine in one form or another.
  • Some people with fatigue have reported improvement to fatigue by raising the head of their bed by 6 inches. Called ITB or inclined bed therapy – See New Pathways issue 62

APS Therapy

At the MS Therapy Centre where I work we have now had many cases of people’s MS fatigue, including post relapse, responding very well to APS Therapy. This makes sense as the treatment stimulates production of ATP, and is a replica of the wave-form of action potentials ( the electrical nerve signal.)active-nerve-cells-29027134 It hasn’t worked for everyone that’s tried it; it seems to be more effecitve for fatigue in relapsing remitting, rather than progressive MS, and we are still collecting data about this, but the therapy is available privately ( see ‘my other work’ button)  and at 7 MS Therapy Centres:

Bedford, Portsmouth, Kent, Sutton & Croydon, Leicester, Berkshire and Hertfordshire and MS-UK’s Wellbeing centre, Joseph’s Court in Colchester.

Therapies

Lots of therapies, including Shiatsu, Reflexology, Yoga and ‘EFT’ tapping are found by people to improve wellbeing, energy and sleep which may then help with fatigue.

Remember that Disease Modifying Therapies (DMTs) all aim to reduce inflammation and relapses, and by doing so, can have a marked impact on reducing fatigue and improving how you feel. If you are eligible, but not on a DMT, review and reconsider the situation. If you’re on a DMT but still having relapses, request a review, as per the the MS Brain Health Campaign. And when choosing a DMT, ask about the common side-effects, explore how other people have responded, and choose one that fits best with your needs and aims.

happy

In summary, with both long and short term strategies, there are lots of things you can do to beat fatigue and enhance your energy. Some of the long term strategies take longer to bear fruit – but keep going; many people with MS can remember a time when they were so much more fatigued than they are now.

All the best

Miranda

 

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Are your tablets destroying your brain? What to do about anticholinergics

OH NOOO!NOOO! I hate it when a drug that was a useful tool turns out to have really bad side effects!

In an ideal world, we’d all be drug free, of course, but hey – noone is taking this stuff for fun!

You may have seen in the news recently the reports linking drugs with an anticholinergic effect with dementia and cognitive problems. This type of drug includes over the counter anti-histamines for allergies/hayfever.  Many people with MS take anti-cholinergic drugs for bladder overactivity/urgency, which include:

Detrusitol / Tolterodine, Solifenacin / Vesicare, Oxybutnin / Lyrinol XL/Kentera patches, Fesoterodine fumarate / Tovias, or Darifenacin / Emselex

and many take a low dose of tricyclic antidepressants for nerve pain, which include

Amitryptilline, and its less sedating sister, Nortryptilline.

Awareness has been building about the link between anticholinergics and cognitive problems; in fact a review on the subject in 2009 found twenty-seven studies that met their inclusion criteria, of which, all but two  found an association between the anticholinergics  and either delirium, cognitive impairment or dementia. (1)

This month, however, the a new study on 3434 people provides the ‘strongest evidence yet’ that anticholinergic drugs may increase the risk for dementia in older adults.( 2)

All studies done on the effects of anticholinergics have been done in older adults  “There is no data on how these drugs may affect younger people, but I personally will avoid taking anticholinergic agents,” – Shelley Gray, author of the study.

What if you’re only on a low dose?

Unfortunately if that’s a continuous dose, it still counts. Eg 3 years of taking low dose medication with anitcholinergic effect for neuropathic ( nerve) pain counts as high use.

What to do if you’re on one of these meds?

Obviously, full blown dementia in old age is unlikely to be reversible. However, previous studies on people coming off anticholinergics found that the detrimental effects on thinking were reversible(3), so don’t panic!

What are the alternatives?

For the bladder, two of the alternatives I actually mentioned in a recent post: tibial nerve stimulation, and mirabegron,  a selective beta3 adrenoceptor agonist, which works in a different way to anticholinergics.  NICE has recommended mirabegron as an option for treating overactive bladder (OAB) “only for people in whom antimuscarinic drugs are contraindicated or clinically ineffective, or have unacceptable side effects”, which means that you may have to fight for it, or get the help of your continence service to request it, due to the difficulties these days in accessing medicines that are not the cheapest available.

As you will know, if you have urinary urgency with MS, you should never take medications for it before being seen and scanned by a continence nurse, as the problem can sometimes be cause by the bladder not emptying properly, and in this case, the drugs don’t work, they only make it worse!

If however, you’ve been assessed, and found to have a severely overactive bladder, one option, under urology, is to have botox injected into the bladder wall, which completely relaxes the bladder, and lasts for several months. You have to be willing and able to take on intermittent self catheterisation if necessary, and when it works, it can be a real life changer.

Non drug options?

One of the commonest (? rude?)- most common things that people report are being benefitted by hyperbaric oxygen at the Therapy Centre is bladder urgency.I don’t deal in ‘miracles’ but there’s a link in today’s telegraph online about it: http://www.telegraph.co.uk/lifestyle/11376969/The-miraculous-healing-powers-of-oxygen.html

Other little pieces of magic can be reflexology or acupuncture. Small studies have  shown positive effects for treating this problem, and I have had patients reporting good results after seeing our reflexologists, Theresa and Lorna but non are large or robust enough to become very official ( the studies, not Theresa and Lorna! )

Here’s one of the main acupressure points for self help: acupressure for bladder

400-600mg of magnesium can sometimes have a calming enough effect to reduce bladder symptoms, and reducing caffeine and bladder retraining can also have a good effect. (4) Your best source of expertise on the bladder is your continence service nurse, and its a good idea to go back every couple of years to stay one step ahead of any bladder problems in MS.

What about nerve pain?

Luckily, there are other effective medications for distressing neuropathic pain in MS, the most commonly prescribed being Gabapentin, and its updated ( and more expensive) version, Pregabalin. Although there are, as with all drugs, possible side effects, the most common for Gabapentin being weight gain, they are not linked with the dangers to cognition that the anticholinergics are.

At the MS Therapy Centre, we are lucky to be able to offer APS Therapy, which has had a great result for many people, and the therapies Shiatsu and reflexology also have potential to help. So – if you find that you are regularly taking medication with an anticholinergic effect, have a think about the alternatives, and work with your GP to change your prescription, for a clearer head.

1) Clin Interv Aging. 2009; 4: 225–233. Published online 2009 Jun 9. PMCID: PMC2697587

The cognitive impact of anticholinergics: A clinical review

2)

Cumulative Use of Strong Anticholinergics and Incident DementiaA Prospective Cohort Study

Shelly L. Gray, PharmD, MS1; Melissa L. Anderson, MS2; Sascha Dublin, MD, PhD2,3; Joseph T. Hanlon, PharmD, MS4; Rebecca Hubbard, PhD2,5,6; Rod Walker, MS2; Onchee Yu, MS2; Paul K. Crane, MD, MPH7; Eric B. Larson, MD, MPH2,7
JAMA Intern Med. Published online January 26, 2015. doi:10.1001/jamainternmed.2014.7663
3)

4)     Hartmann KE, McPheeters ML, Biller DH, Ward RM et al. Treatment of Overactive Bladder in Women. Evidence Report/Technology Assessment No. 187. Rockville: Agency for Healthcare Research and Quality (AHRQ). August 2009. [Full text] [PubMed]

‘More Oxygen Please, it’ll do wonders for my relapse’

Just spotted this is on the blog http://multiple-sclerosis-research.blogspot.co.uk/.  It’s research done on EAE – the experimental animal version of MS they induce in rats for research purposes.

Here they used normobaric oxygen – presumably that’s just oxygen at normal pressure. In MS Therapy centres across the UK you can use hyperbaric oxygen ( oxygen given at pressure so that it permeates the tissues of the body more effectively), and many people feel a great benefit from it. I must dig out all the research that’s been done on it.

Here’s some people at the Bedford MS Therapy in the oxygen tank, and one of the volunteers manning the shiny knobs and buttons outside!

oxygen therapyhyperbaric oxygen therapy for MS

In terms of national guidelines, the research that’s been done in the past has not ‘cut the mustard’ to make hyperbaric oxygen a recommended clinical action. However, when you consider the practical and ethical difficulties of rounding up control groups ( who get fake oxygen), so that the research meets the standards required, it’s not surprising that this has not been managed.

More Oxygen Please, it’ll do wonders for my relapse

Posted: 18 Sep 2013 11:00 PM PDT

Davies AL, Desai RA, Bloomfield PS, McIntosh PR, Chapple KJ, Linington C, Fairless R, Diem R, Kasti M, Murphy MP, Smith KJ.
Neurological deficits caused by tissue hypoxia in neuroinflammatory disease. Ann Neurol. 2013 Aug. doi: 10.1002/ana.24006. [Epub ahead of print]

To explore the presence and consequences of tissue hypoxia in experimental autoimmune encephalomyelitis ((EAE), an animal model of multiple sclerosis (MS)).

METHODS: EAE was induced in Dark Agouti (DA) rats by immunization with recombinant myelin oligodendrocyte glycoprotein (rMOG) and adjuvant. Tissue hypoxia was assessed in vivo using two independent methods: an immunohistochemical probe administered intravenously, and insertion of a physical, oxygen-sensitive probe into the spinal cord. Indirect markers of tissue hypoxia (e.g. expression of hypoxia-inducible factor-1α (HIF-1α), vessel diameter and number) were also assessed. The effects of brief (one hour) and continued (7 days) normobaric oxygen treatment on function were evaluated in conjunction with other treatments, namely administration of a mitochondrially-targeted antioxidant (MitoQ) and inhibition of inducible nitric oxide synthase (1400W).

RESULTS: Observed neurological deficits were quantitatively, temporally and spatially correlated with spinal white and grey matter hypoxia. The tissue expression of HIF-1α also correlated with loss of function. Spinal microvessels became enlarged during the hypoxic period, and their number increased at relapse. Notably, oxygen administration significantly restored function within one hour, with improvement persisting at least one week with continuous oxygen treatment. MitoQ and 1400W also caused a small but significant improvement.

INTERPRETATION: We present chemical, physical, immunohistochemical and therapeutic evidence that functional deficits caused by neuroinflammation can arise from tissue hypoxia, consistent with an energy crisis in inflamed CNS tissue. The neurological deficit was closely correlated with spinal white and grey matter hypoxia. This realization may indicate new avenues for therapy of neuroinflammatory diseases such as MS.

Comment below is from the authors of the msresearch blog:
‘This study suggests that there is lack of oxygen in tissues during EAE, which has nothing to do with CCSVI, and if you give rats high amounts of oxygen they do better’