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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Photo by Linda Prebreza on Pexels.com

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

What is an MS relapse? How do you know if you’re having a relapse?

This post is just a little film that the MS trust made, interviewing me about relapses. I put it on social media, but forgot to share it here.

There is some editing that happened; for instance one thing that didn’t make it into the final cut but that is important to know is, that there is a rare, but real risk, which increases with the number of times that you have high dose steroids for relapses, of a very painful condition in the future, called avascular necrosis of the hip. This causes severe hip pain, is only diagnosable via MRI ( ie it doesn’t show up on Xray), and can only be resolved with a hip replacement. Otherwise, I hope it’s helpful.

 

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?

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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.

 

 

 

 

 

Preventing the risks to a person with progressive MS of an acute hospital admission.

A Pathway.

For the past few months, we have been working on a ‘pathway’ to help protect people with progressive MS when they are admitted to hospital with an acute illness ( such as infection) . We know that when people with progressive MS have an unplanned hospital stay ( due to becoming unwell – obviously all problems are not caused by being in hospital ), they often take a step up in disability, and sometimes this can be permanent.

Once someone is in hospital, all kinds of helpful aids and routines, like their own electric wheelchair, intermittent catheters or bowel irrigation can be stripped away, causing problems and complications, but that shouldn’t be the case. Once a person is in bed, they are also at risk of the complications of immobility, such as increased spasticity, pressure areas and constipation.

We based our work on issues and stories that came from people with progressive MS, with a view to helping to improve education and finally, care, and with a final aim to help people get home again as safely, and as quickly as possible.

We have created a ‘pathway’ on one A4 sheet, which can be adapted for use in any locality, to be laminated and kept on the ward, and act as a prompt for the key actions that should be taken when a person with progressive MS is admitted to hospital. If these actions are taken, then the hospital stay itself should not be contributing to any worsening, and should be able to play its therapeutic part.

This is the Pathway:

Pathway for progressive MS in acute admission

And this is the poster which both introduces and shows the pathway, with references.

Progressive MS Poster

Our aim is to introduce this into our local hospital along with some training, to raise awareness for front line staff in the needs of a person with progressive or advanced MS.

C53CC87D-2E6D-4987-8ABD-FED2AE6D724D367B97D4-5B98-4CC5-8EF9-A7C378A1E4D9

 

 

 

 

 

 

 

Yesterday,  I presented this at the MS Trust annual conference, and it was received very positively by the MS specialists attending; lots came to the poster display to take away a paper copy. It was great to get positive feedback from colleagues, and also from Stuart Nixon MBE, MS ambassador and his wife, who pointed out immediate tweaks we need to make ( like ensuring we consistently use the word Person rather than Patient – good call!)

This pathway has been part of a wider project undertaken by the Beds and Northants MS Therapy Centre, funded by Central Bedfordshire Council, to improve quality of life for people with long term conditions. We are also running 3 hour interactive sessions for both family and professional carers, ‘Caring for the Person with Advanced MS’, which have been very warmly received and positively reviewed. We intend to develop this training for hospital staff, to go along with the launch of the pathway.

This is a work in progress so if you have suggestions for improvement, please get in touch! msnursemiranda.olding@gmail.com. We also had assistance from Sanofi Genzyme with putting the Pathway into VISIO format, so Thankyou to you guys and hope you like what we’re doing with it!

All the best, Miranda ( Olding)  and Emma (Matthews)

 

 

 

 

 

Sex and MS

Just as in anyone’s life, sex with MS can be fun, intense, routine, boring, passionate, flirty, dirty, easy, comforting, fraught with difficulties, or all of the above!

Sexuality and sensuality is an integral part of being human and, depending on the individuals involved, has varying degrees of importance at different times in a relationship.

For this article, I’m leaning heavily on an excellent publication for healthcare professionals, ‘MS, Sex, Sexuality and Intimacy’; link at the end of the article, and the fantastic work of MS Nurses Denise Middleton & Lesley Catterall.

Screenshot 2018-11-03 14.37.09denise & lesely (2)

 

The chance to discuss issues with sexual function is an important part of your MS Nurse appointment, and if you have a concern, always raise the subject.

Problems with sex that can affect people with MS are divided into:

Primary problems, which occur as a direct result of MS lesions, and can include numbess in the genital area, and problems with orgasm, erections, or vaginal lubrication.

First of all, both partners should understand that mutually expressing sensuality, through loving touch, with affection and humour, can still be deeply rewarding, even if  sex does not necessarily end in orgasm.

Then, it’s worth checking that problems aren’t being caused by one of the commonly used in MS medications that can cause problems in libido, erection/lubrication, or achieving orgasm, which include:

medicationAmitriptyline, Carbamazepine, Gabapentin, Pregabalin, and Baclofen as well as opiod painkillers, antidepressants, blood pressure drugs, statins, and cannabis.

This is not an exhaustive list! If therefore, you can find a way to decrease the need for these medications, that’s ideal.

For problems with erection, men with MS qualify for the medications Viagra, Cialis, including the once a day Cialis that allows for a bit more spontaneity, Levitra and Spedra on the NHS, and if they are not suitable, ask to be referred to  the local erectile dysfunction clinic, where different options like implants, creams, injections, and vacuum pumps can be discussed. Pumps can also be bought privately, and work well for many men.

To help achieve orgasm, and for numbness, exploring the use of sex toys can be helpful. These include vibrators for both sexes and different sexual areas, and vibrating rings; ‘sleeves’,pulse_iii_duo_top_2

or artificial vaginas, which can also be during foreplay instead of hands for stimulation, and stimulant lubricants (‘play gels’) which can strengthen sensation, amongst others, and are available via tasteful online shops like lovehoney.co.uk, beecourse.com and emotionalbliss.co.uk.

 

Photo from Spokz.com

 

 

There is another product, the Eros Therapy, which has been marketed as a medical device, rathereros than a sex toy, whose aim is to improve blood flow to the clitoris, using a little suction cup device, making orgasm more likely! In a study of (only 15) women diagnosed with sexual dysfunction, more than 80% reported increased sexual satisfaction, and 55% achieved orgasm; they also reported more genital sensation and vaginal lubrication, when using Eros.

 

For problems with ejaculation, there are no specifically licensed medications, however,  in 158 men with spinal injuries; 65% did achieve ejaculation when taking midodrine.

champagne

The NHS choices website mentions that Baclofen can cause delayed ejaculation, and that Amantadine, bupoprion and yohimbine are suggested are suggested when this problem is caused by SSRIs. Pseudoephedrine has also shown promise but hasn’t been licensed for this use. Interestingly, Amantadine is also used for fatigue in MS.

For problems with lubrication there are a variety of products available to help , such as Replens, SYLK, Yes VM.

sylkreplensimages

Secondary sexual problems describe when MS symptoms interfere with sex; for instance, bladder, pain, spasticity or fatigue.

These problems can often be got round with a bit of planning. The most common problem I hear in clinic from people with relapsing remitting MS is fatigue. When tired, libido can be the first thing to go, but where sex is important to your partner, try to plan for it: is it possible to have morning sex, at least on the weekends, a nap in the day, or a super early night together..?

dreamstime_s_31163319 couple

With pain and spasm, timing medications to get the most relief at the right time, taking an extra (agreed with your prescriber) muscle relaxant, or using CBD oil for instance, can help.

If you have more advanced MS, with disability, thinking about positioning may be important. You may want to use pillows to raise hips or get comfy. Spokz.co.uk is a disability equipment site that includes sex products, including a gripper, for when hand function is an issue, and sex furniture – swings and swinging chairs, that sound exotic, but take the effort out of sexual moves, and can make positioning easier.

 

If you have a catheter, adding a flipflow valve means the bag can be removed, and this can be taped out of the way underneath nice underwear. Absorbant bed pads can be placed underneath if you’re worried about bypassing.

Remember, not all sexual difficulties are caused by MS. The http://www.nhs.uk website gives broad pointers to other causes, and http://www.sexualadviceassociation.co.uk offers more detailed advice,  your GP may be able to refer you to more specific services, and sexual and relationship counselling is available privately.

Tertiary sexual problems refers to cultural, emotional, psychological and social aspects; for example, inhibitions due to beliefs, or losing confidence.

Keeping the channels of communication open is probably the most important factor here, and has a direct effect both on successful sex, and on maintaining intimacy. After spinal injury, the important factors in maintaining a positive and satisfying sexual relationship were found to be “emotional factors such as honesty, trust,
closeness, mutual respect, communication, caring and appreciation”

A fulfilling sexual relationship is about more than intercourse or orgasms, and a fulfilling relationship is about more than sex. There are many couples whose relationship does not involve sex at all, but who maintain a high level of intimacy, with warmth, and fulfilment on both sides, and many others whose sexual relationship involves creative solutions and may not culminate for both partners in orgasm, but is still a deeply enjoyable expression of love and care for each other and each other’s needs. 

 

 

 

 

The document below has a full list of resources for support with sexual and relationship difficulties including the excellent booklets for both sexes by the MS Trust, downloadable from www.mstrust.org.uk; sexual and relationship counselling, books, films and organisations.

https://www.mstrust.org.uk/sites/default/files/MS%20%26%20Sex%20Guide%20INTERACTIVE.pdf

Happy bonking!  Miranda. Blog: ‘MS Nurse with a holistic approach – useful things I’ve learned’ http://www.mirandasmsblog.com

 

MS bowel problems and what to do about them!

Now I have your attention with this picture of Fake poo – Bowels! Trouble with the bowel can be the bane of your life, so here we’re going to have a look at what can go wrong and what you can do to prevent or rectify things!

For the bowel to work perfectly, there must be intact nerve pathways from the inner and outer anal sphincters, all the way up the spinal cord, and down again. Any interruption to these messages can cause problems.

picture from Aliexpress.com

Let’s start with constipation. As well as changes to the nervous system, reduced ability to exercise, difficulty getting into a good position, reducing fluid intake because of urinary urgency, and medication, can all contribute to this problem.

Of course we always start by looking at diet and fluids, adding plant-based fibre, fruit, vegetables, pulses and seeds. Some old school wisdom that can be very effective include: 1 ripe pear daily, figs, prunes, and adding linseeds to cereal or porridge. Cold pressed flax-seed oil can have a 2 fold role as it’s the highest source of omega 3s, strongly anti-inflammatory, and for some, has a loosening effect.

 

 

 

 

 

However, in MS, sometimes, you can be doing everything just perfectly re diet and fluids, and still have a serious problem with constipation.  If you need to use laxatives, it’s important to understand how they work. The longer the stool stays in the bowel, the more your body draws water out, causing a hard, dry stool.

There are four types of laxative; bulk-forming, osmotic, stimulant, and stool softening. If you have enough dietary fibre, bulk-forming shouldn’t be necessary, and we hope to prevent the hard dry stools that stool-softeners treat.

In my experience, an osmotic, ‘macrogol ‘ product, like Movicol or Laxido, which contains indigestible plastic molecules to stop your body from absorbing water from the stool, is often helpful, but do find the daily dose that works, rather than first getting constipated and then taking it, as this can cause the opposite problem.

Senna or Bisacodyl are stimulant laxatives, increasing the luscular action of the bowel, and can also be used to add ‘oomph’, but if taken on their own, may just give you cramps. Try taking them at night, with the aim to catch the time that the bowel is most active naturally; after the first hot drink in the morning…

Some people find suppositories helpful; these can be glycerin, a simple oily substance that can loosen dry stool, or bisacodyl, to stimulate the bowel.

Constipation that has not responded to these measures may be treated with mini-enemas, (eg Fleet) which can reach a little higher.

 

Did you know that the natural position for humans to poop is in squatting? There’s a brilliant demonstration in this video, https://youtu.be/YbYWhdLO43Q advertising the ‘Squatty Potty’, a peice of bathroom furniture that helps get you more in that sort of position. Of course you can make your own position support system, and there is more than position at play in bowel problems in MS; however, it’s a good start.

For intractable constipation, one of the irrigation systems, discussed below, may help.

 

 

 

Bowel urgency and accidents

Sometimes, the nerve damage in MS can mean that it’s not possible to ‘hold on’, and for some people, constipation alternates with bowel urgency or incontinence. Sometimes, just solving constipation and getting into a routine can be enough to prevent accidents, but sometimes it’s not enough. Nothing can be more upsetting than having a bowel accident, but luckily, there are now very effective products available on prescription, which can help to prevent this happening.

For occasional looseness, Loperamide ( Immodium) can be used, either in tablet or liquid form. However, it’s not advisable for long term, especially if you also get constipation.

For longer term problems, trans-anal irrigation systems provide some people with MS with a life-changing solution. These are basically kits for pumping some body-temperature tap water into your lower bowel, using a soft, disposable rectal catheter or cone, whilst you sit on the toilet.

 

Once you remove the catheter or cone, the water is also released, and any stool that was sitting in the descending colon, is washed out. The action of the water can also stimulate a bowel movement within the next 10-15 minutes.

Once you’ve used the irrigation system, you know that the descending colon is clear, and that it would be very unlikely to need to go for the next 8 hours, unless you have a problem with diarrhoea or loose stools.

Peristeen:  https://www.coloplast.co.uk/peristeen-anal-irrigation-system-en-gb.aspx

Qufora: http://www.macgregorhealthcare.com/index.html

For people who would find hand-pumping impossible, there are motorised systems, including the ‘Navina’ by Wellspect, and the Irypump by B-Braun.

Speak to your continence nurse or MS Nurse to discuss your problems and be referred.

Qufora also has a bed system, that can be used for people who can’t sit on a toilet,

and a mini pump, which is very handy for people who just cannot get started, or can’t seem to finish off properly.

Posterior tibial nerve stimulation (PTNS)

PTNS is a drug-free electrical treatment for both bowel and bladder urgency and incontinence, which involves having several weeks of weekly, tapering down to less frequent, sessions, sitting with a tiny, ( hairs breadth ) needle attached to an electrical current, inserted at the back of your ankle.  From here the current travels to the sacral nerve plexus. It has about an 80% success rate. I recently had the chance to experience this and me and my colleague Emma, got to stick needles in each other, as Alison from Cogentix ‘Urgent-pc’ came to demonstrate. It didn’t hurt… very much at all! – and many people, ( including Emma)  don’t even feel it! It’s not currently available in our area on the NHS at present, although Bedford, Luton and Northmampton hospitals all have business plans to introduce it. It is available in some NHS hospitals, and also in many private clinics, and I have previously had someone referred for it for bowel incontinence, who did very well.

See http://www.cogentixmedical.com/patients/products/urgent-pc

 

 

 

 

 

 

 

 

Bowel accidents due to loose stools, is a different type of problem. Medical problems need to be excluded by seeing your GP, and you may also need to explore whether items in your diet are upsetting your digestion. The sugar Lactose in milk is a common suspect, and some people have a problem with almost all the simple sugars in foods, and have to follow a very strict diet which eliminates ‘FODMAP’s; see:

https://www.nhs.uk/Conditions/Irritable-bowel-syndrome/Pages/Treatment.aspx,

If absolutely nothing else works, and you are still being plagued with problems, then there are surgical options, including elective colostomy.

There are now so many options to help with bowel problems in MS , so ask for help,  and if you’re not getting anywhere, ask to be referred to a specialist bowel clinic.

 

 

 

 

Urine infections in MS – an integrated approach to prevention & treatment.

I always discuss the need to stay one step ahead of the bladder in MS with my patients, as having a urinary tract infection (UTI) can mimic a relapse and cause real setbacks.

Explain this to your GP, request they prescribe antibiotics at the first sign of infection, and that NICE guidelines recommend a longer (5–10-day) course for these ‘neurogenic’ UTIs.  It’s also worth taking at least a prescription away with you on holiday to prevent losing days trying to see a doctor.

Check! Whenever you experience new or worse symptoms of MS, always check for a silent UTI. Aswell as  visiting your surgery or MS nurse, you can also buy urinalysis dipsticks for home use. A change of colour to Leukocytes or Nitrites may indicate infection, which should be treated.

dipsticks

If you take antibiotics, top up with probiotics (good bacteria), during and afterwards, to prevent digestive problems and thrush, and boost your health and resistance to future UTIs. Lactose-free capsules or powder are better than sweet probiotic drinks. In fact looking after the good bacteria in your gut is a huge and important topic for all of us, and particularly if you have an auto-immune condition, and there’s lots of ways you can do this.

bacteria (1)

Also drink plenty of water, pee frequently, and cut out sugar to help your immune system fight back.

Causes.

One cause of UTIs with MS is the bladder not emptying fully, because the muscles involved are not working together properly. Struggling to start passing urine, feeling there’s some left, urgency, and UTIs can all be signs of incomplete emptying. This needs to be identified by ultrasound scan, generally with the continence service.

bladder ultrasound

Try peeing twice every time, but if a residual (left over) volume of 100mls or more is found, you may need to learn how to use intermittent self-catheterisation with small, lubricated, disposable catheters, to empty fully.

ISC can be liberating, but also potentially cause infection; technique and catheter type are important, so stay in touch with your advisor.

ISC

Prevention and natural treatments

If you seem to keep getting urine infections one after the other, it’s quite likely that you are just not completely throwing off one infection.

It’s a very dispiriting situation, However –  there are lots of things you can do to shake off and help prevent recurrent UTIs.

The most common bacteria causing UTIs is E coli, which can cause recurrent UTIs, as it can burrow into the bladder wall, and release spores after antibiotics are finished. However, it’s important that your urine goes to the lab, as rarer bugs are also possible, including from candida, which we’re not covering here today. GPs are recommended not to prescribe low dose daily antibiotics, but they sometimes help as a last resort.

e-coli bacteria

Sometimes antibiotic treatment no longer seems to work, or some people prefer to try herbal remedies with antibiotic properties. Stopping the bacteria from sticking to the bladder wall and flushing it out when it does is the aim of these natural agents. There are many, with varying degrees of research to back them, but the ones that I have seen most success with are: (Nb I don’t get any benefit from these companies!)

For prevention:

  • Concentrated cranberry tablets,  eg Cysticlean

http://www.cysticlean.co.uk/main/index.phpcysticlean 2

For prevention ( low dose) and/or treatment ( full dose)

  • D-Mannose; a simple sugar that e-coli latches on to and can be flushed out on, and is now being tried by consultants at the national hospital for neurology and neurosurgery.  https://www.waterfall-d-mannose.com/dmannose-options.html

d-mannose

  • SOS advance; a colloidal solution of antibiotic herbs that can be used preventatively or at times of infection.

http://www.sosessentials.com/s/

sos-advance

For recurrent UTIs with an indwelling catheter

If after a catheter changes, with symptoms, ask District Nurses to test from the port after 48 hours, and have an antibiotic at the ready; test again 48 hours after completion.

The ‘Bardex IC’ ( infection control) silver tipped catheter has been shown to reduce UTIs, (reports infections 3.7 x more common in those catheterised with a normal catheter vs a sliver tipped one) as it prevents a biofilm forming. It becomes effective after around 3 months ( and has to be changed regularly like all indwelling catheters), so don’t give up too soon.

Uro.13.BardexIC2way.0165SI (1)

If all else fails, ask for a referral to urology, to check for bladder stones, and possibly for bladder washout, and to discuss possible treatments.

See a doctor if you have a fever, chills, pain in the flank area, nausea or vomiting, and always check any natural/herbal remedies are safe to take with your condition and medications.

UPDATE: – I thought this comment from Jenny was important enough to update the blog with:

“I thought I’d let you know about some other treatments for UTIs that are being tried on me that no-one seems to know about (not even doctors in Oxford, nor the MS specialist nurses – I’m keeping them posted too)..

So one is Uromune, supposedly a vaccination against four strains of UTI including e-coli. It’s inactivated bacteria taken in pineapple juice under the tongue once a day for 3 or 6 months. They’re doing a trial in Reading and there are details here http://www.readingurologypartnership.com/uti-vaccine/4594063839 – you can’t get on the trial if you self-catheterise but can pay privately for it (not cheap – including seeing the consultant it was about £600 for me).

And the other is iAluRil, a GAG layer replacement, which you stick inside directly with a catheter, to replenish the non-stick lining of the bladder, and keep in for as long as poss (I do it at night and sleep with it in – it’s only 50mls). There are apparently two places in the UK which don’t do this and Oxford is one, so I go to the Royal Berks for that, on the NHS. Info here http://ialuril.co.uk/

Apologies if you knew all this and that just took up time that you’ll never get back! But I thought, if you don’t know about it, you’re the sort of person who will be interested and use the info to help people. (btw I have no financial links to any of the organisations – am just a person with MS and RUTIs who’s trying everything!). And also I should let you know that I’ve been on the Uromune for nearly 3 months now and just had an e-coli infection… hey ho.”

–Dear Jenny – this is fab; I’m going to post it up as an update so everyone can see, thankyou. I do have a patient who was on the immunisation trial but unfortunately it did not work for her. The aAlUril I have never heard of and am going to look into. Thanks again for your most useful comments!
all the best, Miranda