Category Archives: Multiple Sclerosis

Let’s Talk To An Inspirational Young Canadian Woman, Paula Orecklin, About CRPS, Sativex, Physiotherapy and Neuroplasticity

Featured Image provided by Paula Orecklin.

Sativex

Sativex is a cannabis-based mouth spray that is used for nerve pain relief in various painful conditions including cancer, complex regional pain syndrome (CRPS) and multiple sclerosis (MS).  It may also reduce spasticity, muscle spasms and sleep disturbances in MS patients (similar to the benefits of medical cannabis).

For more on Sativex, please see my blog post called ‘Medical Cannabis (Medical Marijuana) And Nerve Pain’.

A CRPS Patient, Paula Orecklin 

You may remember Paula Orecklin from my older blog post called ‘CRPS Video On CRPS By PARC’ (26/10/14).

I recently invited Paula to share more of her inspiring story including her challenges with severe chronic pain and her positive experiences with Sativex, physiotherapy and neuroplasticity work.  Paula immediately replied:

“I like being able to do something positive with all of this pain. If this can help other patients, I’m all over it. Sharing my story, talking to other people…I have to make something good out of all of this pain, you know? And I do have a lot of experience, I guess.”

Paula Orecklin (29) from Winnipeg, Manitoba, Canada, has complex regional pain syndrome (CRPS) that involves constant, severe pain in her right knee and lower right leg as a result of twisting her right ankle back in 2001 when she was only 13 years old. Thereafter, Paula couldn’t even put her right foot to the floor without triggering one vicious blast of pain after another, leaving her bedridden and literally screaming in bed for the next 2 weeks. Following this tragic and life-altering event, Paula had to resort to crutches (and later on, canes) for mobility and due to excess pain. She was wheelchair-dependent for a few months during 2004 – 2005 (caused by ‘blowing out her left knee’) and also for 3 years from 2013 to 2015 (due to unbearable pain leading to monthly ER visits for half a year).

Quoting from Paula’s 2013 YouTube (pre-Sativex treatment):

‘…Every single second, I am in pain, from my knee down to my toes. On my right leg, all there is is pain…there is always solid pain from my knee down. On top of that pain, I have other kinds, all different forms [of pain]…stabbing, shooting, burning, visceral, aching, throbbing…This is with all of my medications…’

See YouTube called ‘Paula Orecklin – UNE Patient Case Study – April 4, 2013’:

https://www.youtube.com/watch?v=_aAVOCGW5ac

Following 3 years in a wheelchair due to severe pain, Paula was offered Sativex for the first time in 2015.  In 2016, thanks to Sativex (and other medications), the support of a fantastic physiotherapist and neuroplasticity work with an excellent pain psychologist, Paula was finally able to trade in her wheelchair and crutches for walking canes!

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Image provided by Paula Orecklin.

However, despite Sativex, Paula still has constant, severe pain every single second of her life. In her words:

[CRPS] still has all sorts of horrible kinds of pain [despite Sativex]. I can be doing well and suddenly ‘a giant poker’ has been stabbed through my leg. I was at a meeting on Saturday and in the middle of it, my foot set on fire. I’m always in pain and then on top of that, there are all sorts of different kinds of pain that come on extraordinarily suddenly. What I said in the video [3 – 4 years ago] is exactly what [still] happens today.’

Thus, while Sativex does not eliminate Paula’s base level of constant and severe pain nor her initial sudden pain attacks from occurring, it can block the repetitive flare cycles. By preventing these ongoing vicious pain cycles in 5 minutes, Sativex enabled Paula to finally undergo physiotherapy to improve her function and mobility. In Paula’s words:

“…Sativex is good at keeping the huge flare cycles down… I’m doing better functionally, so much better. But it doesn’t really work on my constant level of pain.”

Before Sativex, Paula suffered from out-of-control pain levels due to sudden and repetitive waves of pain spikes that would combine with her initial pain spike. One pain spike would lead to another pain spike, and on and on it went. This vicious and ongoing pain spike cycle often led to extremely high pain levels until finally her other medications kicked in.

Paula started using Sativex sublingual mouth spray 2 years ago. While it ‘tastes pretty disgusting, like spraying mosquito repellent into your mouth’, Paula said that she was doing very well as Sativex helps her manage her pain levels better. Being a mouth spray, Sativex has the advantage of gaining faster access directly into the blood capillaries via diffusion through the tissues under the tongue.

Paula has a prescription for a refill bottle of Sativex every 8 days. Sativex is not covered by public healthcare where Paula lives in Manitoba, and at CDN256.05 a bottle, Sativex is not cheap. Even though Paula’s private insurance helps defray most of the cost, Paula is still left out-of-pocket CDN60 per bottle. Using up to 12 sprays a day (and even up to 15 sprays on very painful days), a bottle of 90 sprays can go very quickly.

Despite its costs, Paula finds Sativex’s ability to block the repetitive flare cycles worthwhile. For the first time in her life, Paula has finally found a way to stop the vicious and ongoing cycles of pain spikes before they even start. This enables Paula to do physiotherapy and neuroplasticity training despite ongoing, unrelenting and severe pain. For example, she is now able walk between 1 to 2.4 miles with the aid of 2 walking canes.

Paula does not have any side effects from Sativex other than feeling ‘fuzzy everywhere’ on ‘really bad days’ when more than 9 – 10 sprays and increased hydromorph IR are required.

While Paula has tried medical marijuana (medical cannabis), she found it ineffective against her painful flare-ups. In contrast, Sativex is able to stop her pain flares in 5 minutes hence preventing a vicious circle of painful flare-ups. Furthermore, because Sativex looks like a regular inhaler, it is easier for Paula to be seen using Sativex than, say, medical marijuana. In other words, Sativex is not associated with the social stigma associated with using medical marijuana for pain management.

[I’ve gone from being] forced … to leave university, to carrying the Olympic torch [see photo below], to helping found a local CRPS support group, to creating my own Disability holiday….that after 15 years I …still [attend]. I’m going to celebrate it again this March…after 16 years I’m actually going somewhere now.  I’ve managed to make as much of a life out of my circumstances as I can.”

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Image provided by Paula Orecklin.

On behalf of all Canadians with chronic pain, Paula was formally honoured and selected to be an Olympic torchbearer for the 2010 Vancouver Olympic Winter Games. Paula had to practice walking and holding up one of her old crutches (in lieu of the Olympic torch) for 6 – 7 months beforehand.

One very early morning on a cold wintry day at -30C in January 2010 in Virden, Manitoba, Paula successfully fulfilled her pledge to carry the Olympic torch for 500 meters without mobility aids! Needless to say, being chosen as an Olympic torchbearer for the 2010 Winter Olympics to represent all Canadians living with chronic pain was one of Paula’s proudest achievements.

Thanks to a multi-disciplinary approach to CRPS that involved:

  • Sativex treatment;
  • Hydromorph IR and other conventional pain medication;
  • Physiotherapy;
  • Neuroplasticity work (with her pain psychologist); and
  • Various other pain strategies,

Sativex made a huge difference to Paula’s quality of life by opening the door for the first time to physiotherapy, regular exercise and neuroplasticity work, leading to a dramatic improvement in her CRPS symptoms including repetitive painful flares.

In her own words:

‘I’ve found in the past few months that not only have I been able to do more, be out and see people, exercise and still not fall apart, but I’ve also been increasing my tolerance to everything. I’ve actually been using less breakthrough medication, both Sativex and my hydromorph IR. I’m genuinely doing better. I think I’m down to about a bottle every 13 days right now.’

‘Without Sativex, I would never have been able to get to where I am today.

The neuroplasticity would have helped with my own depression due to pain and my understanding of pain and just generally improved my mental state.

But no real improvement physically would have been possible without Sativex.’

‘I’m doing better than I have in a very long time. Sativex is absolutely critical to this upswing. With Sativex, I can give myself medication with every flare of pain. It kicks in in only 5 minutes. The pain doesn’t have a chance to build on itself but is cut down quickly. I can also give myself another spray in 5 minutes if the pain keeps getting worse or doesn’t go down enough.

I can take up to 12 sprays a day and there aren’t really any side effects. I can get a kind of drugged feeling, but it’s not a high nor is it particularly strong. I have to be careful to spray under different parts of my tongue (ie sometimes my tongue’s left side, sometimes up front in the middle, sometimes on the right) so I don’t get wounds under my tongue. However I’ve never had a single one develop. It’ll sting a little when I’ve used a ton of sprays in one spot, but that’s just a reminder to be sure to move it around. And this might be of clinical significance since my skin is very delicate and develops wounds from my CRPS. ….

I mean, the drug is no magical cure, but it’s been absolutely essential to my progress. Without it, I might have gotten some psychological benefit from the neuroplasticity, but I definitely couldn’t be able to move any better. I’d never have ever been in a place where I could work with my physiotherapist. Before Sativex, I was in my wheelchair for nearly everything. I was finally able to walk again because of [Sativex].’

‘I’ve been working with an amazing physiotherapist since this spring. I was finally able to start walking, but was doing it so unevenly I was hurting my good side’s hip. She’s made a big impact on getting me moving.’

‘…I just came home from the gym, did really well I was powering around the track, listening to music, just … moving. And that kind of feels like a medical miracle. I was in such horrible shape for so long, and it just feels so good. And painful of course, but that’s just a given.’ 

‘I’m doing better now than I have in so many years … I’ve never in my life been able to have sustained progress like this.  I’m still disabled, and there are so many things I still can’t do, but that’s not really what I’m concerned with right now. I’m just happy to see where I am now.’ 

‘Sativex has been really important in my life over the past two years, but I just don’t want it to come off like it’s a … well, miracle. It isn’t. It’s made a massive impact on my life, but I’d say that my massive improvement over the past year is only a third down to the spray.’

Paula added, ‘None of anything would have been possible without hydromorphone IR, nor the rest of my medications. Nothing would be possible without my pain specialist at the pain clinic. It really has been a team effort, and that’s not even counting my other physicians, or the essential support network I have. My parents support me 100%, and that’s both emotional and financial. My mother, in particular, is my caregiver and is a huge part of my life. I’m very lucky to have friends who understand and care too. My best friend’s support over the years has meant so much to me too.’ 

‘Now none of those other things helps in the same ways Sativex does. Without it, I wouldn’t be able to move forward and make sustained progress for what is literally the first time in my life since hurting my leg. I’d never managed to go forward at all, ever; plateauing was all I could hope for. But I still feel like all of those other things are coming together to really help me in way that Sativex alone couldn’t. In fact, what’s really amazing is that I’m actually not using as much Sativex as I used to. Everything’s coming together much better than I ever could have expected. My leg is actually dealing with things better, not needing the same amount of as-needed medications. For the first time too, I’m actually finding other non-medicinal things like heat packs are actually helping. Before, it was just way worse when I didn’t have them, but it didn’t lower the pain exactly. So you can say it is kind of a holistic thing – but one that needed Sativex to open the door to it, if that makes sense…’

Having said all of the above, Paula emphasized:

‘[I am] actually never without pain … Sativex helps to stop the vicious circle of escalating pain cycles in 5 minutes.’

‘…I’m still in rough shape. But when that rough shape is so much better than the rougher shape I was in [before Sativex]…

‘[CRPS] is still incredibly disabling. But when you start so low, every few inches up makes a big difference.

Paula’s positive experience with Sativex may offer hope and inspiration to other pain patients to also add Sativex into their overall pain management therapy.

Thank you, Paula, for sharing your beautiful story with us! Despite living with constant, severe pain, your strength and inner beauty never cease to amaze me! People like you are the inspiration and main driving force behind this blog.

With positive thoughts coming your way from everywhere and everyone,

Sabina Walker

Blogger, Pain Matters

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Medical Cannabis (Medical Marijuana) and Nerve Pain

Source of Featured Image:

http://www.nhs.uk/news/2010/08August/Pages/cannabis-and-chronic-nerve-pain.aspx

Dear Pain Matters blog readers,

Cannabis has been used for medicinal benefits including pain relief by many cultures for hundreds of years or more.  While some patients smoke cannabis for medicinal purposes, others may prefer to make cannabis tea or bake cannabis cookies.

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Is Medicinal Marijuana Effective for Nerve Pain?:

The use of marijuana for chronic pain relief is not new.  Many patients attest to its ability to relieve pain, while many physicians acknowledge its efficacy in patients with intractable pain who were otherwise left with few other options.

According to Mark Ware, Pain Clinician, McGill University, Montreal, Canada, endogenous cannabinoids bind with cannabinoid receptors presynaptically, blocking the release of neurotransmitters in pain-producing pathways, resulting in less pain.

As agonists, synthetic (e.g. nabilone – see earlier  Blog Post, referenced below) and plant-derived cannabinoids (i.e. derived from marijuana) bind with these same cannabinoid receptors, leading to reduced pain.

https://painmatters.wordpress.com/2014/10/29/nabilone-for-chronic-pain-including-nerve-pain/   (Nabilone for Chronic Pain Including Nerve Pain (e.g. CRPS))

Sativex (Nabiximols, in US):

Sativex (Nabiximols), a cannabis-based mouth spray, was approved in the UK as adjunctive treatment for relief of neuropathic pain in multiple sclerosis (MS).  Some trials showed that Sativex significantly reduced neuropathic pain, spasticity, muscle spasms and sleep disturbances in some MS patients.  Care must be taken to manage adverse effects including dizziness, sleepiness, fatigue, dry mouth and drowsiness.  The long-term effects including risk of tolerance are unknown (Perras, 2005). 

Sativex (Nabiximols) is approved in Canada for the treatment of nerve pain and spasticity in MS as well as cancer pain.

Smokeless Delivery Systems Including Vaporizers and Cannabis Inhalers:

Due to the risk of lung damage that may be caused by smoking medicinal cannabis, smokeless delivery systems including vaporizers (and soon, cannabis inhalers) may be useful.

Vaporizers can avoid possible lung damage as they can be used to heat the medicinal cannabis herb sufficiently without burning it nor creating smoke.  Vaporized cannabis has analgesic efficacy at low dose with minimal and well-tolerated psychoactive effects (Wilsey et al, 2013).

Research into cannabis inhalers is currently being done that uses cannabis processed into granules.  This device ensures that dosages are better controlled and that blood tetrahydrocannabinol (THC) delivery levels remain well below ‘recreational levels’ (i.e. that can lead to a ‘high’).  This particular study involving 8 patients with chronic nerve pain showed a 45% reduction in pain intensity, 20 minutes post-inhalation (that returned to baseline within 90 minutes).  The only adverse effect was lightheadedness that lasted 15-30 minutes and that did not require intervention (Eisenberg et al, 2014).

Is Medicinal Marijuana Legal?: 

Please check with local authorities including local physicians regarding the legalities of medical marijuana. 

In Australia, marijuana is legal in most states and territories for certain medical conditions and only if prescribed by a doctor.

In the US, the sale and possession of cannabis was recently decriminalized for both medical and recreational users who are of legal age in 5 states (Alaska, Colorado, Oregon, Washington and Washington DC).  However, marijuana possession or use (medical or otherwise) is still illegal and considered a federal crime under federal law in the US.  

In Canada, medical marijuana use is legal as long as the patient has a licence for this.  As of 24 August 2016, medical marijuana patients can grow their own ‘limited amount’.

Medical marijuana via doctor’s prescription was legalized in March 2017 in Germany. The Federal Health Minister, Hermann Gröhe, stated:

‘Our goal is that seriously ill people are looked after to the best of our ability.’

Gröhe added that health insurance companies should cover the costs of medical marijuana in cases where treatment alternatives do not exist.

In Switzerland, marijuana is legal since 2016 as long as the tetrahydrocannabinol (THC) component is less than 1%.  Legally restricting THC in cannabis to very low levels will ensure that a recreational ‘high’ will not occur (as opposed to THC-rich cannabis that can cause a recreational ‘high’). Thus, THC-poor cannabis is legal in Switzerland.

On the other hand, the cannibinoid (CBD) component of marijuana (aka CBD-Cannabis) is legal as it does not lead to a recreational ‘high’. Importantly, it may offer pain relief, reduced nausea and other medical benefits.

Medical cannabis is legal in other countries including Uruguay, Israel and Jamaica.

Summary:

Medical marijuana may offer pain relief today to patients with severe, intractable pain where other pain treatments have failed.

Quoting Mark Ware:

[The pharmaceutical approach is] “promising, highly protected with patents, and highly financially rewarding [and] will take 5 to 10 years.  We have patients struggling now and need to figure out how to use this [medical marijuana] today.”  

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Source of photo:   http://www.painresearchforum.org/news/48905-treating-neuropathic-pain-cannabis-pro-and-con

Sabina Walker

“Sedare dolorem divinum opus est”
“It is divine to alleviate pain”

Galen, 130-200 C.E.

REFERENCES:

Media 

Is Medicinal Marijuana Effective for Nerve Pain?

(1a) Treating Neuropathic Pain With Cannabis: Pro and Con

Debate-Style Session at World Congress on Pain Focuses on Safety, Efficacy of Marijuana for Neuropathic Pain

Pat McCaffrey

Pain Research Forum (22 Dec 2014)

http://www.painresearchforum.org/news/48905-treating-neuropathic-pain-cannabis-pro-and-con

Attachment (Slides by Mark Ware):

http://www.painresearchforum.org/sites/default/files/attachments/WareCannabisDebateslides.pdf

(1b) Researchers Urge Medical Marijuana Over Opioids to Treat Neuropathic Pain

Mike Hager

http://www.theglobeandmail.com/news/british-columbia/researchers-urge-medical-marijuana-over-opioids-to-treat-neuropathic-pain/article26733746/

Is Medicinal Marijuana Legal?

United States of America

(2a) State Medical Marijuana Laws

20 July 20 2016

http://www.ncsl.org/research/health/state-medical-marijuana-laws.aspx

Canada

(2b) Medical Marijuana Patients Can Grow ‘Limited Amount’ of Cannabis at Home Under New Laws – Change Comes After Federal Court Said Old Rules Were Unconstitutional

Andrew Foote

CBC News (11 August 2016)

http://www.cbc.ca/news/politics/medical-marijuana-home-growing-law-1.3716860

(2c) Medical Marijuana Easier to Grow at Home With New Rules – Some Doctors Say Medical Cannabis is Safer than Opiates, While Others Say It’s Too Unpredictable

Julia Wright

CBC News (25 Aug 25 2016)

http://www.cbc.ca/news/canada/new-brunswick/growing-medical-cannabis-1.3735112

Australia

(2d) Senate passes medicinal cannabis legislation

Jane Lee

Sydney Morning Herald (24 February 2016)

http://www.smh.com.au/federal-politics/political-news/senate-passes-medicinal-cannabis-legislation-20160224-gn2gjk.html

Germany

(2e) Germany to Legalize Medicinal Marijuana by 2017

Joshua Berlinger

CNN (4 May 2016)

http://edition.cnn.com/2016/05/04/europe/germany-medicinal-marijuana/

In German

(2f) Schmerztherapie – Hype um vermeintliche Wunderarznei: Was Cannabis kann – und was nicht.

Sabine Dobel, Gisela Gross

Stern (3 June 2017)

http://www.stern.de/gesundheit/extra-schmerz/cannabis-in-der-medizin–was-das-mittel-kann—und-was-nicht-7479856.html

This article also includes the following 2-minute video (also in German):

http://www.stern.de/gesundheit/fragen-verstehen/cannabis-legalisieren–die-krux-des-freien-kiffens-6805902.html?utm_source=social&utm_medium=share&utm_campaign=artikel-video

Switzerland

(2g) Swiss cannabis entrepreneurs develop craving for low-potency pot.

Marina Depetris, John Miller

Reuters (22 March 2017).

http://www.reuters.com/article/us-swiss-cannabis-light-idUSKBN16S2D4

In German

(2h) Kiffen light – so wirkt das legale Cannabis aus der Schweiz

Laila Keuthage

Stern (17 May 2017)

http://www.stern.de/gesundheit/kiffen-light—so-wirkt-das-legale-cannabis-aus-der-schweiz-7448666.html

Peer-Reviewed Papers

(3) Wilsey B, Marcotte TD, Deutsch R, Gouaux B, Sakai S, Donaghe H.

Low Dose Vaporized Cannabis Significantly Improves Neuropathic Pain.

The Journal of Pain (2013);14(2):136-148.

doi:10.1016/j.jpain.2012.10.009.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3566631/pdf/nihms439212.pdf

(4) Perras C.

Sativex for the Management of Multiple Sclerosis Symptoms.

Issues Emerg Health Technol. 2005 Sep;(72):1-4.

https://www.ncbi.nlm.nih.gov/pubmed/16317825

(5) Eisenberg E, Ogintz M, Almog S

The Pharmacokinetics, Efficacy, Safety, and Ease of Use of a Novel Portable Metered-Dose Cannabis Inhaler in Patients With Chronic Neuropathic Pain: A Phase 1a Study

Journal Of Pain & Palliative Care Pharmacotherapy (2014); 28(3)

doi.org/10.3109/15360288.2014.941130

http://www.tandfonline.com/doi/full/10.3109/15360288.2014.941130