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]

Results of a one year pilot using APS Therapy for pain in MS

It’s out!! So proud of this, the report on our results for the first year of using APS Therapy at the MS Therapy Centre in Bedford. So, ahead of publication, here’s:

Action Potential Simulation Therapy ( APS Therapy) for pain in people with MS; Report on a One Year Pilot Study.

Miranda Olding RGN MSCN, Denise Kehoe

 

Abstract

People with MS commonly suffer from both nociceptive and neuropathic pain, and the latter is often resistant to treatment, or hard to resolve due to the unwanted side-effects of most of the appropriate drugs.

We carried out a one year pilot using the electrotherapy device APS Therapy to treat pain in people with MS, at the voluntary sector multi-disciplinary MS Therapy Centre, in Bedford, UK.

An 8 week course of the therapy 3 times a week was offered initially, and 38 people used APS Therapy to treat 61 different pains.

Within  8 week periods, 28 people (76%) got beneficial reduction in pain. Of the 58 pains, 50 (86%) had a reduction of at least one point on the Visual analogue Scale (VAS) for pain. Of the pains that improved, 17 (30%) were reduced to pain free. The average reduction in points on the VAS was 4.7 points. 12 people reduced or discontinued medications as a direct result of the effects of APS Therapy;  with more structured review and supervision, we feel that this number could be higher, and have adjusted our practice accordingly.

Many participants reported improved sleep and enhanced energy, and the improved quality of life that this afforded.

Many of the participants who benefitted, especially those with chronic neuropathic pain, felt that they needed long term treatment, but were able to maintain the benefits sustained at a reduced frequency of treatment ( once a week or even fortnightly), and elected to carry on. We were able to offer this as an ongoing service.

Robust research on APS Therapy is scant, but based on the outstanding results of this pilot is a very promising area for further research and clinical treatment.

Introduction

The problem of pain in the UK

Pain is defined as ‘An unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage’ (1)

Chronic pain is defined as continuous, long-term pain of more than 12 weeks or after the time that healing would have been thought to have occurred in pain after trauma or surgery.( 2)

Almost eight million people in the UK have chronic pain, or an estimated one in 5 Europeans. (3) As well as the human suffering, it also represents a significant burden to wider society and economies.  Chronic pain accounts for 4.6 million GP appointments every year at a cost of £69 million. Expenditure is on referrals, appointments, prescribing, consequences of ineffective home prescribing and adverse events. (4)

Current medical treatment centres around medication, but drug treatments often cause unwanted side effects or other medical problems, and the costs of drugs for managing pain alone in England in 2009 amounted to £449 million. (5)

Access to pain management services in the UK is inconsistent and available health services for pain differ markedly in the type of care they offer.(6)

Although in some chronic pain clinics, TENs, acupuncture, physical, psychological techniques, invasive treatments, and complementary therapies are offered, availability varies widely, rates of successful pain resolution are low, and 38% of people with chronic pain report  inadequate pain management.(7,8, 9)

 

The problem of pain in MS

Estimates vary as to the proportion of people with MS who suffer from pain, with some reports suggesting that up to 80% of people with MS may suffer from pain at some stage. (10,11,12)

People with MS commonly suffer from both types of pain; both nociceptive (‘normal’ type, after injury or with inflammation) and neuropathic. Neuropathic pain is defined as ‘pain caused by a lesion or disease of the somatosensory nervous system’ (13) is often characterized as burning, severe shooting pains, and/or painful numbness or tingling. It is commonly a long term or chronic pain, and effective treatment is difficult as the classes of drugs to which it responds best are associated with various adverse effects. ( sedation and weight gain most commonly)  (14)

The aim of treatment is to minimise the level of pain and to develop coping strategies so that the individual can carry out normal day-to-day living. Treatment options include drugs and non-drug treatments such as physiotherapy, electrotherapy or a combination.

Electrical therapies

There are many modalities of electrical therapies currently in use within physical therapy for pain relief and injury repair, which have been categorised into 3 broad areas(15)

Electrical stimulation agents, including Transcutaneous Electrical Nerve stimulation (TENS), Action Potential Simulation Therapy (APS Therapy), Interferential Therapy (IFT), Functional Electrical Stimulation (FES), and Microcurrent therapy (MCT),

Thermal modalities,  including Infra red Irradiation (IFR), Therapeutic Ultrasound and Laser Therapy, and

Non Thermal Modalities including Pulsed Ultrasound, Pulsed Electromagnetic Fields (PEMFs) and Microcurrent Therapy (MCT)

The most commonly used form of electrotherapy in healthcare is TENS. This uses an alternating current to affect pain gate mechanisms. A Cochrane review concludes that ‘despite the widespread use of TENS machines, the analgesic effectiveness of TENS still remains uncertain’(16)

There are many studies demonstrating its’ usefulness, however, in my experience with MS it has only occasionally been effective for mild or moderate pain, but has been limited to the duration of treatment with the electrodes, or a one or two hour carryover at best.

We heard about some exceptional case studies carried out in Hull using the electro-therapy Action Potential Stimulation (APS)Therapy showing effectiveness in reducing both pain and fatigue; drastically reducing the medication used, and increasing mobility, independence and quality of life in people with MS(17) and decided to investigate.

 APS Therapy

 APS Therapy ( Action potential simulation therapy) is a type of micro-current therapy.

These therapies involves application of electric currents of similar form and magnitude to those produced naturally by the body and there is evidence that this can promote healing in a variety of damaged tissues. (18)

The APS Therapy device uses an electrical current that supposedly mimics the normal physiological action potential of nerve conduction.  The device is said to produce action potentials that are four times stronger than those naturally occurring in the neuron. When swelling, inflammation, poor circulation and pain occur due to mechanical, chemical or electrical disturbances, by stimulating the body’s natural regenerative processes (as in depolarisation), it is postulated that these conditions are encouraged to resolve. (19) See discussion.

Literature review for micro-current and APS Therapy

A literature review on over 70 papers on micro-current therapy in 2009 concluded that there was evidence for its use with non-uniting fractures, spinal fusions and a skin ulcers, particularly where other forms of treatment had not been successful; that In vitro studies also suggest that there is unexplored potential for its use in musculoskeletal disorders. However, higher quality and more comprehensive research is needed. (20)

An assessment of APS Therapy on 285 Patients with Chronic Pain in 2002 reported  a mean average VAPS was 6.8 before treatment and 3.3 after treatment in the over 50s, and 6.3 and 2.2 respectively in the under 50s.  Out of the 285 patients,44 (15%) ended with a ‘0’ VAPS and 199 (69%) with a score of 5 or less. (21)

A trial of APS Therapy in patients awaiting or having neurosurgery for intractable spinal pain concluded that the number of patients treated was too low to reach a statistical conclusion, but that the trend was very promising and they recommended that  patients waiting for destructive surgery should first be put on a thorough trial of APS Therapy.(22)

In a 1999 randomized, patient blinded, placebo-controlled study, on 76 patients with chronic osteoporotic back pain, reported pretreatment baseline VAPS value average of of 57.79, and post- treatment value after the sixth treatment of 9.7 (p= 0,0001); 6 patients maintained benefits 6 months post treatment.(23)

A study in 1999 on APS Therapy compared with TENS in 99 patients with osteoarthritis of the knee did not find a significant difference between the two treatment groups given just 6 treatments over a 2 week period. The authors did note, however, that the APS group showed a significant improvement in measures of knee flexion and swelling, which persisted even 1 month after the last treatment. (24)

Methods

Sample

People with MS who presented with pain in the MS Nurse’s clinic were screened for suitability and contra-indications, and offered the chance to trial the therapy. Pain due to spasticity/muscle spasm , or pain whose origin was uncertain, where more investigations were needed, were excluded.

Contra-indications include having a Pacemaker, epilepsy, pregnancy, or cancer, or in the past 3 months, stroke, heart attack, deep vein thrombosis or pulmonary embolus. One participant had a baclofen pump; after discussion with the manufacturers of both devices, this was allowed in this case. We also checked that participants felt able to drink the recommended litre and a half of water daily during therapy.

All the participants gave their informed consent to take part in the study; it was made clear that this was optional. 39 had MS, 3 did not. ( 2 were members of staff, and one a volunteer)

An 8 week course of APS Therapy, with 3 x sessions a week, comprising of 4, back to back 8 minute electrode placements, was offered, in a clinic room at the multi-disciplinary, voluntary sector MS Therapy Centre in Bedford, UK. We had first one, and then 2 APS Therapy clinic machines. People who could apply the electrodes themselves had one teaching session and then self-treated, with floating supervision from staff.

During the 8 week course, 6 people dropped out. One had vomiting and headache after 1st treatment, decided not to proceed. Detoxification reactions ( usually headache) are possible, although not common if drinking the recommended amount of water, and are self-limiting.  One experienced flickering in her vision and decided not to proceed. Although there is no documented precendent for this, and the cause was uncertain, electrotherapies can trigger migraine in susceptible people. Three people became unwell, two with existing other conditions and one with an MS relapse since starting treatment and either unable or decided not to proceed. One struggled to travel for treatment and felt discouraged after no benefit felt at 2& ½ weeks.

36 people in this study went on to use APS Therapy to treat 58 different pains.

25 of the pains were neuropathic, including 2 sciatic type pains, and 34 were nociceptive, including headaches, fibromyalgia type tender spots, backache, joint pain and arthritic type pain.

32 were women and 4 were men. The average age was 52 for women and 51 for men. 11 people had relapsing remitting MS, 22 had primary or secondary progressive, and 3 did not have MS.

We measured pain using the visual analogue pain scale (VAS), asking each participant to score for the average, or constant level of pain, and the worst level of pain, and how much of the time the pain was average, how much of the time worse. Medication use was recorded.

Results:

 

In  8 week periods;

Of the 36 people, 28 (78%) had reduction in pain.

Of the 58 pains, 50 (86%) had reduction.

Of the pains that improved, 17 pains  (30%) went down  to 0/10, or pain free.

pie - people whose pain improved

pie - pains that improved with APS Therapypie - pain free with APS Therapy

 

Reduction’ was quantified as 1 or more whole points on the VAS for pain. Neuropathic pains appeared to respond almost as well as nociceptive pains to the treatment12 people reduced or discontinued medication as a direct result of the results of the APS Therapy, on reflection, with more supervision, we feel that this could have been more.The mean pre-treatment score on the VAS for ‘Average level of pain’ overall was 5.56. Mean reduction in pain was 4.7 points, to a mean post-treatment VAS of 2.3.Average reduction for ‘worst pain’ scores was 4.1 points on the VAS scale.

APS Therapy results chart

Neuropathic pain

nb. in the charts below, a score of 0 or pain free, has been represented by a score of 0.01, in order to show up as a colour.

APS Therapy for neuropathic feet and leg pain

‘Average pain’ in the 14 cases of neuropathic feet and legs had a mean pre-treatment score of 6.3, which reduced by 3.8 points on the VAS on average to 2.5.

2 individual’s pain did not respond at all, 12 people experienced a benefit, and of these, 5 people went to pain free.

APS Therapy for worst pain, neuropathic feet and legs

‘Worst pain’ for neuropathic feet and legs was a pre treatment mean of 8.03, and reduced by 5.17 on the VAS on average, to a post treatment mean of 2.46, with 5 people at pain-free.

Combined ‘average’ and ‘worst’ pain scores gave a mean reduction of  4.5 points on the VAS.

Other neuropathic or nerve pain:

In neuropathic pain of the trunk, arms, hands and face, reduction in ‘average pain’ was a mean of less, at 2.5, but still had a reduction in ‘worst pain’ of 4.9 points on the VAS.

charts - APS Therapy for other neurogenic pains

APS Therapy - charts - Worst pain, other neurogenic

 Joint pain or injury

‘Average pain’ scores for joint pain or injury had a pre treatment mean of 5.1 and fell 2.9 points on the VAS to a mean of 2.2 . Actual results were quite polarised, with 4 people having no response, and 7 going  to pain free.

joint pain or injury results with APS Therapy

‘Worst pain’ for the 16  joint type pains had a pre treatment mean of 7.5 points on the VAS, and  fell by an average 4.9 points on the VAS to a mean of  2.6. 2 people’s worst pain did not respond, and 7 pains went to pain free.

APS Therapy for worst pain - joint pain or injury

 Headaches

People with headaches responded particularly well to APS Therapy; the reduction in ‘average pain’ as scored by the VAS was 4.7, but our data does not catch the reduced incidence in those still experiencing headaches.

APS Therapy for headaches chart

Back pain

‘Average pain’ for back pain had a response of 3.3  points reduction on the VAS on average; 2 people’s pain got worse, one was unchanged, 7 benefitted, and of these, 2 went to pain free.

APS Therapy for back pain in MS patients

Other pains

The remaining pains were 2 cases of muscle fatigue type pain and one pain from metalwork post pin and plate, which did not respond, and 1 psoriasis pain and 1 varicose vein pain, both of which did benefit.

APS therapy charts other pains

‘Other benefits’

For this report, we have not managed to keep accurate data about other benefits reported  during APS Therapy treatment. These have been: 4 cases of significant improvement in energy/reduction in MS fatigue, 2 cases of significant reduction swollen legs and ankles, 1 report of improvement in skin discolouration due to poor circulation, reduction in size of ‘fatty lump’ on hip, swollen gland in neck, and fluid under the skin on the scalp, 2 cases of alleviation of life-long insomnia, and many reports of improvement in sleep quality. 2 people reported no further urinary tract infections, which had been recurrent, and which they attributed to the APS Therapy, and 1; reduction in dizziness and improvement in cognitive function, which again they attributed to the therapy, and reported as a post-treatment effect.

We have identified reliable and valid outcome measures that we will be using for future clinical governance to measure sleep quality and energy levels, and the effect of pain on everyday life and mood.

Discussion

One of our concerns when starting this project was that people might benefit, but need long term therapy, which we would not be able to offer long term. We hoped to be able to use the NHS one-off personal budgets to allow people to purchase their own machine if necessary, but the scheme was only available for people on continuing health funding in our area. In actual fact, we found that although we did have a group of people who needed to maintain therapy to maintain the benefit; but they were able to reduce the frequency of their treatment to once a week, or in one case once fortnightly, and still retain the effect, and a such we have been able to continue to provide a service for these people.

We did not have research funding for this study, there was no control group, and many variables. Our sample, as typical in MS, often had to cancel appointments due to health problems, transport or general difficulties, but still achieved a remarkable result.

It was interesting to note that effectiveness was similar between the neuropathic and nociceptive type pains when using APS Therapy.

The mode of action is not fully understood, but injury or disease can cause oedema, inflammation, neuronal dysfunction, circulatory disturbance and lack of oxygen supply to the tissues or organ systems. Inflammation in tissue also promotes the build-up of chemicals, known as the “inflammatory soup” which may  interfere with neural transmission.

If there is poor transmission or even cessation of activity along the neurone, as a result of injury, inflammation, or disease process, the system cannot conduct its action potentials, and the homeostatic and regenerative mechanisms are disturbed.

It has been postulated by Papendorp (25) that  introducing external action potentials through the use of APS Therapy may result in the metabolic catabolism  and subsequent excretion from the body of inflammatory substances. As inflammatory metabolites may be a major cause of pain, removing the cause allows for pain reduction. Circulation is also improved  and thus antibodies, enzymes, neurotransmitters and hormones are conveyed at an increased rate to the treated area, stimulating the body’s own healing mechanisms.

Conclusion

APS Therapy seemed to be a safe and effective therapy to try in cases of both neuropathic and nociceptive pain. Participants in this study, most of whom had MS, achieved positive results using APS Therapy in 76% of cases. The therapy was safe, and in the main, people were extremely happy with mode of treatment, preferring it to drug therapy, and in some cases reducing and discontinuing analgesic drugs as a result.

We hope that by presenting our pilot study of an APS Therapy service in the context of available research on the subject, we can stimulate further clinical use and research.

 

 

References

1) H. Merskey and N. Bogduk, Eds,.Classification of Chronic Pain, Second Edition, IASP Task Force on Taxonomy, IASP Press, Seattle, 1994.

2) British Pain society 2014 For media, FAQs http://www.britishpainsociety.org/media_faq.htm ( accessed 3/2/2014)

3) Breivik H, Collett B, et al. Survey of chronic pain in Europe: prevalence, impact on daily life, and treatment. Eur J Pain 2006 10( 4):pp 287-333

4) Belsey J. Primary care workload in the management of chronic pain: A retrospective cohort study using a GP database to identify resource implications for UK primary care. Journal of Medical Economics 2002 . 5, (1-4) pp 39-50

5) NHS Information Centre. Prescription Cost Analysis for England 2009. Available at: http://www.ic.nhs.uk

6) Harris M, Spence A, et al. (2000) Clinical Standards Advisory Group (CSAG): Services for patients with pain

7) Breaking through the Barrier’, Chief Medical Officer 2008 Annual Report, March 2000

8) InSites Consulting. Pain Proposal Patient and PCP Surveys. July – September 2010

9)Collett, B. Betteridge, N., Semmons, I , Trueman, P. Pain Proposal, Improving the current and future management of chronic pain 2010 http://www.arthritiscare.org.uk/…/main…/PainProposalUKSnapshotFinal.pdf

10)  Ehde DM, et al.The scope and nature of pain in persons with multiple sclerosis. Multiple Sclerosis 2006;12(5):pp 629-638.

11) Hirsh AT, et al. Prevalence and impact of pain in multiple sclerosis: physical and psychologic contributors. Archives of Physical Medicine and Rehabilitation 2009;90(4):pp 646-651.

12) Archibald CJ, et al.Pain prevalence, severity and impact in a clinic sample of multiple sclerosis patients. Pain 1994;58(1):89-93.

13) International Association for the Study of Pain,  2011 http://www.iasp-pain.org/AM/Template.cfm?Section=Pain_Definitions (Accessed 3/2/2014)

14) Neuropathic pain – pharmacological management: the pharmacological management of neuropathic pain in adults in non-specialist settings. National Institute for Clinical Excellence November 2013

15) Watson, T. Narrative Review : Key concepts with electrophysical agents Physical Therapy Reviews 2010. 15(4): 351-359.

16) Cochrane Database Syst Rev. 2008 Jul 16;(3)

17) Van der Plaat, L. unpublished case studies using APS Therapy on people with MS in a day hospice setting. 2013

18) Berger P. Electrical pain modulation for the chronic pain patient.  South African Journal of Anaesthesiologyand Analgesia. 1999;5:14-19.

19) Van Papendorp DH, Kruger MC, Maritz C, Dippenaar NG.

Medical Hypotheses- 2002 Elsevier

20) Watson, T. Narrative Review : Key concepts with electrophysical agents Physical Therapy Reviews 2010. 15(4): 351-359.

21) Papendorp DH van. (2002). Assessment of Pain Relief on 285 patients with chronic pain. Biomedical Research 2002; 26: 249-253.

22) Du Preez, J. Neurosurgical Pain Conditions University of Pretoria

23) Odendaal & Joubert APS Therapy- a new way of teating chronic backabacke, a pilot study South African Journal of Anaesthesiology and Analgesia.1999; 5 1

24) Berger, P. Matzner, L Study on 99 patients with osteoarthritis (OA) of the knee to investigate the effectiveness of low frequency electrical currents on mobility and pain: Action Potential Simulation therapy (APS) current compared with transcutaneous electrical nerve stimulation (TENS) and placebo.South Africa Journal of Anaesthesiology and Analgesia

1999 5: 2

25) ) Papendorp DH van. (2002). Assessment of Pain Relief on 285 patients with chronic pain. Biomedical Research 2002; 26: 249-253.

 HOPE YOU LIKE IT!

Article published as of now. Thanks to the guys from the MS Therapy Centre in Bedford who’ve been game to share their stories. We’ve had lots of new stories generated even since this too! APS Therapy article New Pathways magazinenp80FINAL (1)  Here’s the PDF to the full article. Going to try to get just my bit, as this file is huge.

My 2 roles. Just to be really clear

Recently we had a local newspaper article that started off so well, about the exciting results we’ve been getting with APS Therapy at the MS Therapy Centre in Bedford. Then in the last paragraph, it said that I was now offering to rent APS machines to MS patients, which made it sound as though I was renting them to my own patients, and was an unintentional mistake by the journalist.

local newspaper article on APS Therapy

To be clear, people with MS who live in Bedfordshire or Northamptonshire can come to the MS Therapy Centre and have this therapy for free, and I will be involved, as the MS Nurse there.

In my private business,  I do a variety of therapies, not aimed at people with MS, and I tend to keep the 2 separate.  I have  added renting APS Therapy machines to my business, and this is available for anyone from the general public who has pain. I am advertising this in local papers and on my business facebook page.

At the moment, I am the only UK supplier of APS Therapy machines. However, if & when people with MS want to purchase a machine, I supply them direct from the manufacturer, without taking commission, as long as they can prove that they have MS. People who are not members of the Beds & Northants MS Therapy Centre will still need to pay for their training, treatment plan and follow up time. This is important to know, as in June/July there will be a peice in the MS magazine New Pathways about what we are doing at the MS Therapy Centre, and also about my business.

Hope this makes things really clear

Groundbreaking results for significant pain relief with APS Therapy

APS Therapy update; our first results for people with pain

APS effective for pain chart

At the MS Therapy Centre, we are trialling a new electrical treatment for pain, called APS Therapy (See previous issues for an explanation!)

Here’s a round-up of our results so far.
Some people have completed a course of treatment, some are ongoing, and some have only just started and had a few sessions. We are working hard to make sure we collect better data in future so we can answer more questions. We used the ‘Visual analogue pain scale’ which measures pain out of 10, with 0 being ‘no pain’ and 10 being ‘the worst possible pain’

Neuropathic pain in limb:  7/10 down to pain free; complete pain relief which lasts 4-5 days, but appears to need long term treatment as comes back after this time.

Neuropathic pain in the feet  and feeling  ‘like walking on hot sand’, constant, 6-7/10 down to 3-4/10 in 3 weeks, hot sand feeling down to ‘not very often’ and improvement in blue-ish discolouration due to poor circulation..

Hip pain 6/10 constantly, complete relief since the first week, has not returned, and a decrease in neuropathic pain in the leg from 4/10 to 2/10 in 3 weeks.

Back pain, 8-9/10, worse on exercise, down to pain-free, 2-3/10 on exercise. Treated x 2 weekly for 6 weeks. Has not returned, 1 month after end of treatment. Leg pain, ‘pounding, throbbing’, 8/10, down to pain-free, has started to creep back since recent sensory relapse.

Long term shoulder pain, 2-7/10 to ‘much better’ but has since had to stop treatment for personal reasons.

Hip pain 10/10 plus, no benefit. This could be because there’s a serious problem that needs attending to underlying the pain, or because high doses of opiate painkillers make the treatment less effective. We’ll be helping this person get the right investigations and treatment, and maybe try again later.

Arm pain, possibly radiating from shoulder, no cause detected by GP, 2-3/10 with episodes of stabbing pain 5-6 x a week at 10/10; down to 1& half/10, no episodes of stabbing pain after 2 weeks of treatment

Headaches, constant, 7/10 down to pain-free, and back pain 7/10, down to 1/10, plus complete relief from insomnia.

Chronic pelvic pain, 2-4/10 normally, 7-8/10 when bad, happening less frequently, tramadol usage has dropped from daily to 2-3 x a week, now reducing Amitryptilline also.

Hip pain, 8&1/2 /10, very severe, ‘sickening’, no change, although improvements in sleep pattern. We are helping this person get investigations carried out.

Hip pain, 7/10, 8/10 when worst, down to 4/10 after 3 treatments, but also had deep physio manipulation prior to starting!

Severe muscle spasm and spasticity, no change after 12 weeks +

MS fatigue; no change

MS fatigue; no change

Headaches, 4-6/10, 9/10 when worst, 2-3 x a week, for most of life, worse since starting Rebif, down to pain-free; has had one headache since starting therapy, when had not drunk enough water. Has not taken regular painkillers for weeks. Back pain, 4-6/10, 7-8/10 when bad, down to 3/10. Stopped Naproxen and Co-codamol use. Knee pain (which was unreported, as forgot about it) has disappeared. Much more energy, staying up past bedtime, cleaning.

People who’ve just started:

‘Squeezing’ altered sensation feeling, 7/10, 9/10 when worst, no change yet after 4 sessions; muscular pain in shoulder blade area, 4/10, 8/10 when worst, down to 2/10 after 4 sessions.

Shooting, stabbing, intermittent pain in knees, 5-10 -11/10 down to 4/10 max after approx 2 weeks

Tennis elbow, 8/10, worst 10/10, now 6/10, worst 8/10, significantly improved range of motion and no sleep disturbance due to pain, after one week’s treatment ( and also carrying on with Bowen treatment)

So in summary, in our study so far, 18 people have used the APS Therapy at the Centre, 17 with MS and one member of staff. 2 tried APS for fatigue, and 1 for spasticity, and disappointingly, these conditions have not experienced a significant benefit to date.

15 people used APS Therapy for pain. Of these, 13 have felt a significant reduction in pain, and 2 have not. 2 also report a significant increase in energy. Of the people with pain, 5 have achieved pain-free. Of these, 2 people’s pain has not come back since completing the course, one needs to maintain therapy once a week, and 2 are still completing their course of treatment.

We’re delighted that Denise, who many of you will know already from the Gym, has now been employed 3 days a week to also help run this project and help people to use the APS machines at the Beds and Northants MS Therapy Centre. If you are having a problem with pain, you can come and see me (Miranda) for a full pain assessment. If APS Therapy seems like an appropriate course of action and you:

a) Can get in 3 x a week ideally; twice if necessary, and

b) Can drink 1&1/2 litres of water a day, and

c) Have none of the following: heart attack, deep vein thrombosis, stroke or pulmonary embolus in the past 3 months, cancer, epilepsy, or pregnancy.

I will refer you on to Denise, to start a 6 week treatment plan. For some pain, APS Therapy may be able to completely and permanently resolve the problem. For some people it may not help at all, and for others, it may significantly reduce or resolve the pain, but need to be continued to keep getting the effect. In those cases we can help you to purchase your own machine direct from the manufacturers if you wish, and also to apply for charitable funding if money is a problem.

It’s very exciting to be working with such a new, drug-free treatment. We intend to start helping people to review their medication once they get a good result, with a view to reducing pain medication.

APS chart, pain, fatigue, spasticity

APS chart, percentage pain-free

Hello world!

This blog has grown from my work as an MS Specialist Nurse, 3 days a week at the MS Therapy Centre, Bedford, UK. I love my job, especially as I’m allowed the freedom to continuously explore ways you can optimise your health and life when you have MS, from both a ‘conventional’ and a more natural perspective.

Specifically, the blog is an expansion of my regular feature in our MS Therapy Centre newsletter. I’m going to upload all my old ‘posts’ so you can see what I’ve been thinking/learning about over the last few years; the new stuff will go in both places.

This last month has been an exciting one for me, new things that have happened are:

  •  Learning about APS Therapy ( Action Potential Simulation therapy)
  • Doing a teaching session on MS & the bowel on a Peristeen course;  I’ll try to upload it here.
  • Also I am still rounding up the feedback from those people who tried the natural detox product; more on that later!
 I should stick to one topic at a time.  So – APS Therapy
Recently met up with a friend, a nurse,who is now the leader of a fantastic pain management team in Hull.
She told me about the very very good results – people coming off medications completely – that a doctor working in a hospice in Hull had been getting with people with MS who had severe neuropathic pain, and severe muscle spasm, using APS machines. Their team had organised for  someone from the Dutch company who manufacture and supply the machines and training, to come and do a training day in Hull – which I managed to attend.

Basically this therapy looks a bit like TENS, but it’s a different type of electrical current. You put sticky pads on your skin, which are connected to the machine via wires, and then a direct current of micro-amps is directed to travel through the cells of your body, from one pad to the other.

APS machine for the MS Therapy Centre

The current simulates – ie is just like, Action Potential – which is the name for the way that electrical signals pass along a nerve. This apparently stimulates the release of more ATP, which is needed to create energy in the body, and also speeds up the detoxification from cells, and the result, after a period of treatment, is said to be reduced pain and increased energy.  So obviously I am excited!!

In Hull, a proper clinical trial is going to go ahead with a rehab team, pain management team and university in collaboration. In Bedford (!!) the doctor with the hospice experience has been kind enough to offer to come down and share her experiences of using this in clinical practice, so that we can find out

  1. how to use it
  2. how it works
  3. how we can use it effectively
  4. how we can use it fairly
  5. whether we can help people who benefit from it to fund ongoing treatment (?personal health budgets)
  6. whether we can add to the body of knowledge being gathered about it.
So this is happening on July 27th – can’t wait!
I will definatley post again on our experiences, and on everything else I think might be interesting to you!  All the best, Miranda