Pain in MS – treatment and managment options

From paracetomol to transcranial magnetic stimulation, everything I know so far about pain in MS.

I’m not going to pretend to know everything about this huge topic, but here is my best shot at present! I started putting the info together for a presentation for MS specialists, with anaesthetist Dr. Sharmila Khot, and then I carried on, to try to compile all I’ve learned into a blogpost. Referenced version available on request.

miranda olding pain lecture

Pain affects around 63% of people with MS. In a 2012 article about the types of pain in MS, the authors state ‘We can think of no other disease that can result in so manyk different types of pain.’

They list 9 types of pain in MS, as:

  • Muscle spasm – (like cramp)
  • Spasticity – (tight / stiff)
  • Musculo-skeletal – (back or joint problems, often from walking difficulties, or sitting)
  • Optic neuritis – (pain in the eye due to inflammation of the optic nerve)
  • Migraine – (in fact, unless linked to beta interferon or fingolimod, MS does not cause migraine, but headaches are more common in people with MS than in the general population)
  • Treatment related pain – (injectable DMTs/ side effects)
  • Neuropathic pain & ongoing extremity pain – (prickling, tingling or shooting stabbing pains, and pins & needles, burning/freezing, often worst in the feet)
  • Trigeminal neuralgia – (agonising bouts of facial pain)
  • L’Hermittes sign – (like an electric shock when bending the head forwards)

I’d like to add to the list, the pain of fatigued muscles.

In  nursing, we have a process, whose acronym is ADPIE.

woman in pink white floral apron smiling while holding a white creme food during daytime

Photo by Pixabay on Pexels.com

It stands for

  • Assess
  • Diagnose
  • Plan
  • Implement
  • Evaluate

This process needs to go on continually, when assessing and treating pain. The first two steps, assessment and diagnosis, are essential to plan and implement the right treatment, and for this, your description of how the pain feels and when it occurs are essential.

The two broadest categories are ‘nociceptive’ (or normal type pain, which is often musculoskeletal), and ‘neuropathic’, (or nerve pain). Many people with MS have a mixture of different types of pain.

pain face

NOCICEPTIVE PAIN

Nociceptive, or normal type pain, is most likely to be described as gnawing, throbbing, aching, cramping, or dull, and in the joints, or muscles.

This includes the pain cause by muscle spasm, stiffness, or spasticity, which needs to be addressed by treating that problem; see mstrust.org.uk/a-z/spasticity-and-spasms 

and Natural options for MS spasms are discussed here

Key interventions are muscle relaxants and physiotherapy.

Musculoskeletal pain is not caused by MS primarily, but it can be a secondary effect of effortful walking, using a stick, sitting for long periods, or becoming deconditioned, and cause, for instance, low back pain, shoulder pain, hip pain. Having high tone or stiffness in the muscles can contribute to this pain, so seeing one of your MS health professionals to work out how much this is contributing, and work out a treatment plan, can be helpful.

For musculoskeletal (MSK) pain, standard medical practice is exercise, physiotherapy, and painkillers.

physio therapy

A physiotherapist can both treat you, and advise on the best form of exercise. A good physiotherapist will also be able to detect specific painful problems that may have specific treatments. For example, Piriformis syndrome can happen to runners, but also to people who have to sit for long periods of time, so can affect wheelchair users. In Piriformis syndrome, the sciatic nerve is pinched by the small piriformis muscle in the buttock, causing horrible pain and discomfort in the buttock when sitting, and specific stretches  are recommended to release it.( Post to follow)

Exercise is a cornerstone in treating musculoskeletal pain, and the most recent findings in pain science suggest that in chronic pain, doing exercise, even when it is painful to do so, can reduce pain in the long term, by reducing ‘fear avoidance’ of movement and further worsening and de-conditioning; by de-sensitising chronic pain areas which have become over sensitised; and also by stimulating the circulation of lymph and oxygen, lowering inflammation. If you have physical barriers to exercise, consider adaptive equipment – electric bikes, power assisted exercise bikes, swimming with disabled access, GP exercise referral, or MS exercise classes.

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Photo by Roman Davayposmotrim on Pexels.com

Painkillers vary in different conditions, but generally follow the World Health Organisation ladder of analgesia.

This ladder was initially put together to help cancer pain, and there is now lot of debate about how useful, or harmful, it really is to use opioids in chronic pain.

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Using Opioids

There are concerns about the prescription of opioids for long term pain, due to the problems of side-effects, tolerance ( the body needing a higher and higher dose to be effective), dependence ( when the body only functions normally with the drug, and trying to cut down or withdraw from it causes unpleasant symptoms)  and risk of addiction. Guidance for healthcare professionals is here: https://www.rcoa.ac.uk/faculty-of-pain-medicine/opioids-aware.

In summary,

  • opioids are most useful for acute pain, and end of life ( cancer type) pain
  • For best results in chronic/persistent pain, they should be low dose, and used only intermittently, to prevent tolerance
  • Above a dose of 120mg a day of morphine, or equlivalent, there is no increased pain relief, but increased risks
  • If pain does not respond to opioids there is no benefit to taking them, and they should be stopped, but all tapering down and withdrawing needs close monitoring and support.

Gels and creams

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Anti-inflammatories gels are also available, but remember that the doses count towards your daily allowance of the drug. The evidence for these is good in acute pain, but only minimal in long term pain.

Some people also find that over the counter heat rubs help; these work in a different way, as Counterirritants. Ingredients such as menthol, methylsalicylate (oil of evergreen), and camphor create a burning or cooling sensation that distracts your mind from the pain.

Salicylates. These same ingredients that give aspirin its pain-relieving quality are found in some creams. When absorbed into the skin, they may help with pain, particularly in joints.

There is less robust evidence for the above 2 topical applications.

Capsaicin cream  has good evidence to support its use, and can be prescribed for both joint and neuropathic pain. It’s made from chilli peppers, and burns when it goes on, but if persisted with over weeks, can provide relief by desensitising the nerves, and I’ve occasionally seen it work when other treatments have failed!


Complementary therapies

therapy

As well as standard treatments, many people with MSK pain benefit from complementary therapies, including, but not limited to, Acupuncture, Massage, Reflexology, Craniosacral, Osteopathy, Chiropractic, Bowen technique, Shiatsu and massage. The practice with the most published evidence, showing moderate but sustained benefit in one review of research, is acupuncture.

It’s worth knowing that there is a great deal of difference in the amount of training done by a traditional Chinese acupuncturist, who will have trained for many years, and the acupuncture you might receive as part of standard medical treatment, which may have been a very short course for doctors or physios.

Reflexology and acupressure work on the same principles, and acupressure is a technique you can do  on yourself at home.

point massage

Electrotherapies are also often used successfully, and include many types of device, either as part of physiotherapy treatment or privately bought home use machines, and there are varying degrees of evidence for efficacy of the different types. See Electrotherapies

Also see ‘For all types of persistent pain

NEUROPATHIC PAIN

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Photo by Killian Eon on Pexels.com

 

Neuropathic, or nerve pain is caused by ‘a lesion or disease affecting the somatosensory system.’ It is commonly described as burning, hot, icy cold, tingling, pins and needles, electric shocks, shooting or stabbing.

Neuropathic pain is a difficult pain to manage, especially as it can be worse with exercise, and normal painkillers aren’t effective.

Trigeminal neuralgia is a type of neuropathic pain that is treated differently from others.

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It’s is an agonizing facial pain which come in bouts, but can develop into permanent pain. This requires Carbamazepine as a firstline, but with a specialist, other medications can be tried, and there are both non-invasive and surgical procedures available. See https://www.nhs.uk/conditions/trigeminal-neuralgia/

For the other neuropathic pains,

Firstline medications

that can be prescribed in primary care ( ie by/via your GP) are in the following table. NB. Side effects are only potential side effects. ‘Common’ means between 1 in 10 and 1 in 100 people are affected.

Medication & example brand name

Description, Dose, Side effects 

Only  the most common side effects are listed; before recommendation or prescription, read full list of possible side effects at https://bnf.nice.org.uk/

Gabapentin (Neurontin)

Description: Antiepileptic Dose: Initially 300 mg once daily on day 1, then 300 mg twice daily on day 2, then 300 mg 3 times a day on day 3, alternatively initially 300 mg 3 times a day on day 1, then increased in steps of 300 mg every 2–3 days in 3 divided doses, adjusted according to response; maximum 3.6 g per day.

Common side effects: Anxiety; appetite abnormal; arthralgia; asthenia; behaviour abnormal; confusion; constipation; cough; depression; diarrhoea;     dizziness; drowsiness; dry mouth; dysarthria; dyspnoea; emotional lability; flatulence; gait abnormal; gastrointestinal discomfort; headache; hypertension; increased risk of infection; insomnia; leucopenia; malaise; movement disorders; muscle complaints; nausea; nystagmus; oedema; pain; reflexes abnormal; seizure (in children); sensation abnormal; sexual dysfunction; skin reactions; thinking abnormal; tooth disorder; tremor; vasodilation; vertigo; visual impairment; vomiting

Pregabalin (Lyrica)

Description: Antiepileptic Dose: Initially 150 mg daily in 2–3 divided doses, then increased if necessary to 300 mg daily in 2–3 divided doses, dose to be increased after 3–7 days, then increased if necessary up to 600 mg daily in 2–3 divided doses, dose to be increased after 7 days.

Common side effects: Abdominal distension; appetite abnormal; asthenia; cervical spasm; concentration impaired; confusion; constipation; diarrhoea; dizziness; drowsiness;dry mouth; feeling abnormal; gait abnormal; gastrointestinal disorders; headache; increased risk of infection; joint disorders; memory loss; mood altered; movement disorders; muscle complaints; nausea; oedema; pain; sensation abnormal; sexual dysfunction; sleep disorders; speech impairment; vertigo; vision disorders; vomiting; weight changes

Amitriptyline ( Elavil)

Description: Anticholinergic Dose: Initially 10–25 mg daily, dose to be taken in the evening, then increased, if tolerated, in steps of 10–25 mg every 3–7 days in 1–2 divided doses; usual dose 25–75 mg daily, dose to be taken in the evening, doses above 100 mg should be used with caution (doses above 75 mg should be used with caution in the elderly and in patients with cardiovascular disease); maximum per dose 75 mg.

Common side effects: Anticholinergic syndrome; (agitated (hyperactive) delirium – typically including confusion, restlessness and picking at imaginary objects) drowsiness; QT interval prolongation ( heart rhythm)

Caution in: chronic constipation, urinary retention

Frequency not known includes: visual disorders, confusion, constipation, dizziness, impaired concentration, peripheral neuropathy, urinary retention, altered sensation and depression, all of which can be confused with symptoms of MS; anticholinergics are also associated with dementia in long term use ( over 2 years)

Duloxetine ( Cymbalta)

Description: serotonin and noradrenaline re-uptake inhibitors (SNRI)

Dose: Initially 30 mg once daily, increased if necessary to 60 mg once daily; maximum 120 mg per day.

Common side effects: Anxiety; appetite decreased; constipation; diarrhoea; dizziness; drowsiness; dry mouth; fall; fatigue; flushing; gastrointestinal discomfort; gastrointestinal disorders; headache; muscle complaints; nausea; pain; palpitations; paraesthesia; sexual dysfunction; skin reactions; sleep disorders; sweat changes; tinnitus; tremor; urinary disorders; vision disorders; vomiting; weight changes; yawning

 Capsaicin cream ( Axsain)

Description: plant alkaloids Dose: Apply 3–4 times a day for 8 weeks then review, dose to be applied sparingly, not more often than every 4 hours.

Common side effects: abnormal sensation.

Caution: avoid contact with eyes; avoid hot shower or bath just before or after application (burning sensation enhanced); avoid inhalation of vapours; not to be used under tight bandages

Tramadol (Zydol)

Description: Opioid Dose: For use as short term ‘rescue therapy ‘ only

Initially 50 mg, then, adjusted according to response; Usual maximum 400 mg/24 hours, or use modified release over 12 or 24 hours preparations

Common side effects: Arrhythmias; confusion; constipation; dizziness; drowsiness; dry mouth; euphoric mood; flushing; hallucination; headache; hyperhidrosis; hypotension (with high doses); miosis; nausea (more common on initiation); palpitations; respiratory depression (with high doses); skin reactions; urinary retention; vertigo; visual impairment; vomiting (more common on initiation); withdrawal syndrome

 

Secondline medications

Medication & Example brand name

Description, Dose, Side effects

Only  the most common side effects are listed; before recommendation or prescription, read full list of possible side effects at https://bnf.nice.org.uk/

High strength capsaicin patch (Qutenza)

Description: plant class alkaloids Dose 179mg patch

Common Side effects: sensation abnormal

Cautions: avoid contact with the face, scalp or in proximity to mucous membranes; avoid holding near eyes or mucous membranes; recent cardiovascular events; uncontrolled hypertension

Lidocaine patch (Versatis)

Description: local anaethetic Dose: Apply once daily for up to 12 hours, followed by a 12-hour plaster-free period; discontinue if no response after 4 weeks, to be applied to intact, dry, non-hairy, non-irritated skin, up to 3 plasters may be used to cover large areas; plasters may be cut.

Common side effects in intravenous use – as systemic absorption can follow topical administration, should be borne in mind:

anxiety; arrhythmias; atrioventricular block; cardiac arrest; circulatory collapse; confusion; dizziness; drowsiness; euphoric mood; headache; hypotension (may lead to cardiac arrest); loss of consciousness; methaemoglobinaemia; muscle twitching; myocardial contractility decreased; nausea; neurological effects; nystagmus; pain; psychosis; respiratory disorders; seizure; sensation abnormal; temperature sensation altered; tinnitus; tremor; vision blurred; vomiting

 

Venlafaxine (Effexor)

Description: SNRI Dose: initially 75 mg daily in 2 divided doses, then increased if necessary up to 375 mg daily, dose to be increased if necessary at intervals of at least 2 weeks, faster dose titration may be necessary in some patients; maximum 375 mg per day. Common Side effects: Anxiety; appetite decreased; arrhythmias; asthenia; chills; confusion; constipation; depersonalisation; diarrhoea; dizziness; dry mouth; dyspnoea; headache; hot flush; hypertension; menstrual cycle irregularities; movement disorders; muscle tone increased; mydriasis; nausea; palpitations; paraesthesia; sedation; sexual dysfunction; skin reactions; sleep disorders; sweat changes; taste altered; tinnitus; tremor; urinary disorders; vision disorders; vomiting; weight changes; yawning

Tapentadol (Palexia, Nucynta)

Description: Opioid with SNRI: Dose: Modified release:Initially 50 mg every 12 hours, adjusted according to response; maximum 500 mg per day Side effects: Anxiety; appetite decreased; asthenia; diarrhoea; feeling of body temperature change; gastrointestinal discomfort; muscle spasms; sleep disorders; tremor; for all opioids: Arrhythmias; confusion; constipation; dizziness; drowsiness; dry mouth; euphoric mood; flushing; hallucination; headache; hyperhidrosis;  hypotension (with high doses); miosis; nausea (more common on initiation); palpitations; respiratory depression (with high doses); skin reactions; urinary retention; vertigo; visual impairment; vomiting (more common on initiation); withdrawal syndrome

A non – opioid medication that can sometimes help persistent pain which does not respond to other medications, is Nefopam hydrochloride. Possible side effects include nausea, dizziness, lightheaded, nervousness, confusion, dry mouth, urinary retention.

Other medications that may be offered include stronger opioids, eg morphine, oxycodone, buprenorphine.  See using opioids for more information.

NHS guidelines state that these should only be prescribed in specialist centres, such as a pain clinic or neurology clinic. This is not necessarily because they are stronger, but generally because they are not licensed for the treatment of pain, but for other uses, and have less evidence for use in pain.

Secondline medications for neuropathic pain that can be prescribed via specialist clinic include, but are not limited to:

For pain that does not respond to standard treatment, ask to be referred to a pain clinic. These vary greatly around the country in terms of what they offer, but may offer acupuncture, psychological therapies, electrotherapies as well as medications and injections.

Pain clinics, also offer various types of injections for different pains, the ones most likely to be suitable in MS are

  • Nerve block injections for neuralgias

 

Thirdline interventions

  • Intravenous lidocaine (relief only tended to last for up to 28 days)
  • Intravenous ketamine

The evidence for these two treatments is not robust, and there are only a few centres that offer them, but I have met people for whom it has been the only thing that has helped them.

  • Deep Brain Stimulation. This invasive procedure involves stimulating a precise area of the brain using an electrode to modulate the central processing of pain signals.

This procedure is carried out on the NHS, but as there are serious and well-known risks, it is reserved for the most difficult pain conditions.

  • Spinal cord stimulation (SCS) SCS is an invasive procedure where a small electrical stimulator is placed on the spinal cord, to modify the perception of neuropathic and ischaemic pain.
spinal cord stimulation

picture: Boston Scientific

SCS is also available as a treatment for chronic neuropathic pain, both on the NHS and privately, but as it has a cost of around £10,000 per patient and a life of around 3-4 years, it is usually considered after standard treatments have failed. It works in the same way as a TENS machine, so ‘accommodation’, or the body becoming used to the current and needing a stronger stimulus, can be a problem over time.

Implanting of devices to relieve pain is known as neuromodulation, and techniques are evolving. Newer techniques include Dorsal root ganglion stimulation, dorsal root ganglion paddle stimulation, and high frequency spinal stimulation.

  • Transcranial Magnetic Stimulation (TMS)

TMS

Also known as repetitive, or rTMS, is a new, non-invasive treatment that involves having a magnetic pulse sent to the brain from a plastic-coated magnetic coil held against the head. At present it has only been licensed o the NHS for treatment of depression, but there is also evidence for its use in neuropathic pain. At present it is only available for pain on the NHS as part of research at one centre in the UK; the Walton centre in Liverpool

  • Transcranial direct current stimulation ( tDCS)

TdCStDCS is a non-invasive method of electrical stimulation of the brain using a weak direct current applied to the scalp through electrodes, using a portable, battery operated device. At present it is only available on the NHS for treatment of depression. However, there has been one study in 19 people with MS, which found a 37% decrease in pain over around 4 weeks. tDCS is available privately, and hand held devices are available for purchase. People have been excitedly using privately bought units to make themselves smarter, more alert, or game faster, but there is a possiblity that units could be used for pain control.

 

Safe non-pharmaceutical options for home use

Some people find that cooling strategies give temporary relief, including wearing ‘freezer socks’ ( socks that have been put in the freezer!) cooling garments, and cooling gels

For allodynia, (pain from something that does not normally cause pain, such as shoes, clothing or bedclothes touching the skin) wearing things that provide a continuous stimulus, such as gloves, tight lycra clothing, or lycra splinting /dynamic movement orthoses may help. A bed cradle  can be used to keep duvet/bedclothes off the feet, and sheepskin booties can relieve the weight of  feet rubbing on the mattress.

Dynamic-movement-orthoses-DMOrthotics3

dynamic movement orthoses


Electrotherapies are the only non-pharmaceutical options with published evidence of effectiveness in neuropathic MS pain. There is ‘very low quality’ evidence (small studies, lack of comparative data) for use of TENS in neuropathic pain in MS, and this definitely helps some people. A TENS device can be worn for long periods, with the unit clipped to a belt. There is as yet unpublished data on a micro-current electrotherapy, Action Potential Simulation, or APS Therapy. We have had a lot of success with this in the MS Therapy centre where I work, and it is now offered by 11 other MS centres around the UK, or can be used at home.

Although evidence is limited due to the lack of randomised controlled trials, there are many other mind-body therapies that are used by people with MS; the two that have been studied in most detail are acupuncture and mindfulness. See complementary therapies,  and ‘For all types of persistent pain’

Controversial / less safe / possibly pharmaceutical

Cannabis and cannabinoids

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Photo by Michael Fischer on Pexels.com

Cannabis is a naturally occurring drug made from parts of the cannabis plant. It contains many different compounds which are known as cannabinoids, the most widely studies are THC ( the part that makes people ‘high’) and CBD.

In the UK, cannabis is a controlled drug, Class B under the Misuse of Drugs Act 1971,  and currently assigned to Schedule 1, so it cannot be prescribed or held legally with a prescription. Changes to the law are expected, see https://www.mstrust.org.uk/news/views-and-comments/medicinal-cannabis-%E2%80%93-a-potted-guide

In the meantime, many people with MS do find cannabis useful, and use it in various ways, including growing it, making tinctures, vapes, and using it in foodstuffs. There are certain risks to mental and physical health, specifically for those who are younger than 25 years of age, might be pregnant, have cardiovascular disease, respiratory disease, a history of psychosis, or a substance use disorder.

Cannabinoid medication Sativex contains both THC and CBD and has been licensed for spasticity in the UK, but not pain. It is not prescribed in most parts of the UK on the NHS as it is not considered cost-effective. In Canada, it is also licensed for neuropathic pain in MS, as are other cannabis based medications ( nabilone, nabiximols)

CBD oilCBD oil, which is available from health food stores and online retailers, is made from cannabis but has had the THC removed. Unfortunately, only cannabis preparations with a high level of THC have been found to be effective for neuropathic pain in MS in clinical trials. People sourcing CBD oil should be aware of possible interactions with other drugs.


For all types of persistent pain

Modulating pain

Pain is a sensory and emotional experience, not always related to damage in any physical structure. It occurs in the brain, and not in the part of the body that hurts.

All pain can be ‘modulated’ – turned up or turned down, at different places along the path of the nerve, and emotions have been found to affect how strong the pain feels at different times. Your brain is only able to cope with a certain amount of information at one time, and this includes pain.

pain modulatedFactors that ‘wind up’ or heighten the pain response include ;

˜Hyper-vigilance – focussing on the pain

˜Fear

˜Anxiety

˜Stress

˜Previous negative experience

˜Beliefs about meaning of pain

˜Criticism – being criticised!

˜Boredom

˜Depression

Factors that ‘wind down’ or de-escalate the pain response include:

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○ Relaxation

○ Distraction, enjoyment

○ Meditation/ Mindfulness

○ Meaning

○ Social bonding/ interaction

In chronic / persistent pain, the pain is no longer a warning about damage, and as such does not serve any useful purpose. In many types of persistent pain, the most useful approach is to focus on living a fulfilling life with pain, without giving up on seeking out things that help.

Free Resources

The best free resource that I have found to learn about managing chronic/persistent pain is ‘Retrain Pain’  at https://www.retrainpain.org/

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The Pain Toolkit can also be useful, but it’s more geared towards musculoskeletal pain:

These blogs contain a lot of insight about living with persistent pain; the first aimed at people with pain

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and the second for healthcare professionals

It may also possible to be referred to locally taught pain management / supportive courses such as:

  • Self management programmes (SMPs)
  • NHS pain management programmes (PMPs)

And for exercise, ‘Exercise on referral/prescription’ courses at a local gym.

You can also access online NHS exercise studio videos at https://www.nhs.uk/conditions/nhs-fitness-studio/

Privately bought pain management resources include

  • Book and CD set: Mindfulness for Health: A practical guide to relieving pain, reducing stress and restoring wellbeing, by Danny Penman
  • The ‘Headspace’ app pain management pack is introduced here:

https://www.headspace.com/blog/2017/03/31/headspace-for-pain-management/

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and the day 1 meditation is here:  https://my.headspace.com/packs/36

  • I have always found HeartMath biofeedback to be the most effective system for creating resilience to stress, and use in in my MS clinic, where I did a small piece of research some years ago. There are also some published studies showing reduction in chronic pain when using this system. This is a simple technique that can be taught using biofeedback software by a licensed trainer, or used with a privately bought app and biofeedback sensor.

heartmath wavesheartmath inner balance

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I hope that by reading through this you will find something that helps on your journey with pain.

-Please let me know about anything that you think I’ve missed out; or mistakes – the topic is so vast! Also your experiences with things that do help you, so that I can continue to increase my knowledge and understanding, and pass on useful information to the people that I see, both in my MS Nursing clinic, and in my business life with Action Potential Simulation therapy.

Thanks, and

All the very best!

Miranda

APS Therapy and MS pain

As an MS specialist nurse, I have always been aware of how much pain can be a problem in MS.  The big one is ‘neuropathic’, or unpleasant burning, tingling or shooting pains that are the result of inflammation, or scarring in the nervous system. ‘Normal’, or ‘nociceptive’ type pain in MS can typically include cramping muscle spasm, pain in stiff or very tired muscles, or the sorts of back or joint pains that can be caused by by being less mobile, or putting a strain on certain joints. Because the medications used, especially for neuropathic pain, can cause very problematic side-effects, including increased fatigue, weight gain, cognitive impairment, co-ordination problems and mood problems, I have always been on the lookout for new, natural, or left-field treatments.

I heard about APS Therapy when my friend, and lead for the NHS pain management team in Hull, called to say that I might be interested in a training they were having.

They had heard about some work being done in a hospice outpatient setting, by a palliative care consultant, ( Dr. Lia Van der Plaat, second from the right) which had managed to alleviate pain in some people, including some people with MS, with otherwise intractable pain.

This led to the team applying for and winning a commissioning prize to run a pilot study in people with MS, and people with rheumatoid arthritis.

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And now Maurice ( on the left) was coming to the UK to teach the team how to use their new machines. Did I want to attend? Of course I did!

 

Having had our training from Maurice, I was all fired up to get going; Dr Lia kindly agreed to present her findings to my team at the Beds and Northants MS Therapy centre, my boss proactively responded and got funding for our first APS Therapy machine, and off we went with our first users! We meticulously kept data on pain levels before and after a course of treatment, and quite soon the clinic was very popular, running at full capacity and needing  second machine.

It actually took a year before the Hull team were able to start their study, and by this time, we were able to share a lot of information in order to help them design their study. We had noticed that APS Therapy users often reported other benefits as well as pain relief, most commonly, improvements to energy, sleep and wellbeing, and recommended that they also keep outcomes for these.

Our clinic has now been running for  5 years, now using 4 APS Therapy clinic machines, and one home-use rental machine, and is very busy every weekday, with lots of really happy stories of improved pain and symptoms, and less use of medication.

 

 

Given that the APS has:
  • reduced my fatigue
  • Allowed me to reduce my intake of pregabalin
  • allowed me to come off the voltarol altogether,

I think it is a no-brainer that I should continue!    – Meryl Lovatt, Northamptonshire.

 

What is an APS Therapy machine?

mk4apparaat

APS stands for action potential simulation. An APS Therapy machine sends a copies of the action potential, or nerve signal, through the body, in between two sets of electrodes on the skin.

What are action potentials?

Action potentials are the tiny waves of electricity that pass down nerves and other cells, conducting the nerve signal and stimulating cellular functions.  Action potential simulation therapy machines send a copy of this wave, or ‘wave form’ , and also stimulate the body’s own action potentials, between electrodes on to the skin. This results in better communication between cells, improved removal of the waste products of inflammation, and increased production of the hormone melatonin, pain releiving neuro-transmitter leukine encephalin and the energy carrying molecule, adensoine triphosphate, or ATP.

 

What are the benefits?

The results to the user can include:

  • reduction in, or sometimes complete relief of pain,
  • enhanced energy/reduced fatigue,
  • enhanced recovery from injury,
  • faster recovery from exercise, and in many cases,
  • improvement to sleep quality and quantity.

 

 

 

So what were the results with our patients?

In Bedford, we have been running our clinic now for over 5 years, but at the 2 year point, we compiled and analysed the outcome measurements, and were able to show a statistically significant reduction in pain in our users, in a paper and also clinical posters, which were exhibited at a number of international MS conferences in 2016.

Poster Action Potential Simulation Therapy for pain in people with MS, report on a two year pilot study (3) (1) (1)

 

 

In the first 2 years we treated 60 people with a 6 week course of APS Therapy 2-3 x a week, for pain.

(We planned for 3 x a week, but in reality this was often 2) We found that 78% of those people had a reduction in pain; 23% to pain free.

The average reduction in pain was 3.22 for ‘usual’ pain, and 4.78 for ‘worst’ pain on the

10 point ‘Visual Analogue Scale’  (VAS)

In practice, there was a great variety, from no change, to dramatic drops from high pain levels to pain free, as you can see on the following charts. This is joint pain and injury at ‘usual level’ ( dark is before a course of treatment, light is after)

Joint pain and injury treated with APS Therapy

And here at ‘worst level’

Joint pain and injury, worst, treated with APS Therapy

Our biggest group was ‘neuropathic pain in feet and legs’:

Average VAS (0-10 scale) pre: 6.06                 Average post: 2.65

 

And here is the same pain at ‘worst’ levels:

 

Average VAS Pre: 8.3                                                 Post: 3.6

 

The other pain groups were ‘other neuropathic pain’, ‘joint pain or injury’, ‘back pain’ , ‘headaches’ and ‘other nociceptive pains’; all of these groups had an overall reduction in pain; the greatest was for ‘joint pain and injury’.

We found that whilst joint pain, musculoskeletal pain and injury sometimes needed only a short course of treatment to be resolved, neuropathic pain in MS is very often helped, but if it is long term, is likely to need maintenance after the first 6 weeks, of once a week treatment, which for most people, is enough.

In general, people were extremely happy with the treatment. 33 of these first 60 people reduced or discontinued medication as a direct result, which also added to their wellbeing.

We haven’t stopped keeping data, just haven’t stopped recently to collate it! One of the most enjoyable things about being involved in running an APS Therapy clinic at work, is hearing about people with MS  reporting not just pain relief, but many other benefits, and the positive impact this has had on their quality of life.

We’ve had reports of reduction in spasms, elevation in mood, improvement to sleep quality, cessation of recurrent UTIs when on 3 x week, disappearance of fatty/benign lumps, improvements to constipation, hormonal balance, and have just had some really big breakthroughs with trigeminal neuralgia.

The most common of the ‘other benefits’ have been energy improvement/fatigue reduction, and because of this, our clinic is now open for people who want to try APS for these reasons, or to help after relapse, when recovery seems to have hit a plateau.

APS Therapy is not a cure for, nor does it have an effect on the course of MS, however, it is a very exciting treatment for some of the invisible, but also potentially disabling symptoms of the condition, especially as there is no risk, and is generally free of side-effects.

We are lucky to have had a wonderful team of volunteers in our APS Therapy clinic, led by our clinic manager, Heather, to teach and assist people, and in my private business I hire, sell and allow people to trial APS Therapy, teaching them how to use it over Skype, Facetime or Whatsapp videocalling.

Action Potential Simulation could be thought of as a ‘natural pain treatment’. It’s not just for people with MS, but it makes sense that people with MS respond particularly well to it, as the problems in MS are due to the inability of the body to conduct its action potentials down damaged nerves.

At www.painfreepotential.co.uk there are lots of words from people with MS, who have successfully used an APS Therapy machine to reduce pain, reduce spasms, come off medication in order to start families, boost themselves back after relapse and improve energy levels.

As well as MS, I also Suffer with Anklosing Spondylitis which gives me quite a lot of back pain. The MS itself was making me feel exceptionally tired & I was struggling with bad head aches & a recurring sinus issue.

A treatment plan was put together for me & within 2 weeks of starting the treatment I was no longer waking up every morning with bad headaches. My energy levels were greatly improved & my backache was reduced.

… using this machine in addition to leading a healthy lifestyle has helped me to stay active & continue to enjoy an active lifestyle. – Kat Miller, Bedfordshire.

 

A recent one that made me smile was from Nina Pearce, from Chelmsford, who said:

Alongside my role as clinical nurse specialist in MS,  I have now also taken on the training and distributorship for APS Therapy in the UK, calling my company ‘Painfree Potential’.  In this way I’ve been able to train 11 other MS Therapy centres around the country, who now also offer APS Therapy:  Leicestershire, Berkshire, Hertfordshire, Kent, Hampshire, Cardigan, Exeter, Manchester, Sutton and Croydon, Suffolk and the MS-UK Wellness centre in Colchester.

centres that use APS Therapy

 

It’s my aim to attract researchers to conduct large scale clinical research so that we can explore the possibilities of APS Therapy and make it more widely known about; in the meantime, this year, with supervision from the University of Bedfordshire, as part of an MSc by research, I aim to carry out a clinical trial on the effects of APS Therapy in people with MS, with MS Nurse colleagues in the NHS.

 

 

You can learn more about APS Therapy at http://www.painfreepotential.co.uk
email miranda@painfreepotential.co.uk,
or call 01908 799870 and I will endeavour to call you back within a few days.

 

 

 

 

 

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.

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!

APS Therapy clinic in New Pathways magazine

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.

APS Therapy for pain, pilot study

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