All posts by walksabina

Dear Pain Matters blog readers, My name is Sabina Walker, and I completed a Master in Applied Science (Neuroscience). I chose to focus on the topic of nerve pain because someone close to me has complex regional pain syndrome (CRPS) following crush injury to several fingers. My current goals are to expand this blog called Pain Matters including blog readership. Thereafter, I may pursue a PHD involving Heart Rate Variability in Nerve Pain Patients. I may also write a book on chronic pain including nerve pain. After all, Pain Matters to all of us! Please seek as much help as you can if you are suffering from chronic pain including nerve pain. There are many References included in this blog to assist. Also, please feel free to share your own nerve pain experiences (and any recoveries) via this blog! After all, if you suffer from nerve pain, your experience is worth a 1000 words in any textbook! Wishing hope, inspiration and less pain in this world! Sabina Walker Master Applied Science (Neuroscience) PS If you find any of my Blog Posts interesting or useful, please feel free to share it around amongst your family, friends, colleagues and/or others, via Facebook, LinkedIn, etc. At the end of the day, pain matters to everyone including: - People who live with chronic pain; - People who care for people who live with chronic pain; - People who know people who live with chronic pain; and/or - People who are simply interested in pain matters. So please help get the word out....pain matters to all of us, directly or indirectly! PPS For interested readers, the respected Prof. Peter Drummond and I published the following 24-page Review Paper: Sabina Walker, Peter D. Drummond. Implications of a Local Overproduction of Tumor Necrosis Factor-α in Complex Regional Pain Syndrome [Review Paper, 24 pages]. Pain Medicine (Dec 2011), 12 (12), 1784–807. DOI: 10.1111/j.1526-4637.2011.01273.x http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4637.2011.01273.x/abstract

Frequency Specific Microcurrent And Other Non-Invasive Treatments For CRPS By Dr Katinkka

Source of Featured Image of Dr Katinka van der Merwe:

https://drkatinka.com/about/

Dear Pain Matters blog readers,

As mentioned in the previous blog post, Dr Katinka van der Merwe (aka Dr Katinka) at The Neurologic Relief Center, Arkansas, USA, has expertise in various non-invasive pain treatments including Frequency Specific Microcurrent.

https://painmatters.wordpress.com/2017/04/29/woohoo-australias-one-girl-chantelle-baxter-is-finally-on-the-road-to-recovery-from-crps/

Frequency Specific Microcurrent may be beneficial for neuropathic pain and injury to the spinal cord as well as other painful conditions (see References for papers by FSM expert, Dr Carolyn McMakin).

This blog post discusses Sunday, a CRPS patient who obtained significant pain relief following Frequency Specific Microcurrent and other non-invasive treatments during her first week at The Neurologic Relief Center.

Sunday’s Treatments For CRPS Including Frequency Specific Microcurrent 

Sunday is a welder by trade who lives with her young daughter in Texas.  Sunday used to enjoy an active life that included basketball and softball.

Unfortunately, Sunday had a motor vehicle accident (MVA) that involved rolling her truck 6 times.  Tragically, Sunday suffered severe headaches for 3 years after this MVA.  Sunday said that her intense headaches affected 7 areas in her head including the right side, adding that they felt like a knife going in and out of her head.

Shortly after her MVA, Sunday developed severe CRPS that affected her right hand to above her right elbow.  Even a light touch on her right arm was excruciating.  Sunday also had complete numbness in all 3 middle fingers in her right hand as well as some swelling in her right forearm and hand.

Sunday stated that her severe pain never went away after her MVA, with the exception of 3 days of relief obtained during a nerve block done to the back of her head.  Her pain levels were always ‘5’ or greater, regardless of her pain treatment.  Sunday also tried epidurals (where her entire right arm was numbed), Botox injections, electroshock therapy, topical pain medications, acupuncture and many more pain treatments. Sadly, nothing helped.  Sunday stated that her severe and unrelenting pain was starting to affect her mental state.

In 2015, Sunday travelled interstate from Texas to Arkansas in the hope that she might find some pain relief at The Neurologic Relief Center, headed by Dr Katinka.  Dr Katinka’s non-invasive treatments were different from Sunday’s other pain treatments to date.  This is because Dr Katinka focused on treating the original injury caused by her car accident.  In Dr Katinka’s view, Sunday likely sustained an injury to her upper cervical region during her motor vehicle accident that may also have led to CRPS in her right arm.

Following treatment of her injured upper cervical spine on her first day, Sunday’s pain levels dropped to a ‘4’. After her 2nd day of treatment, Sunday’s pain dropped further to a ‘3’.  On her 3rd day of treatment, Sunday’s pain was a ‘4’ prior to undergoing Frequency Specific Microcurrent (FSM).

Guess what happened next??

During her 1st FSM treatment on her 3rd day, Sunday started to feel some tingling in her 3 fingers!  Wow!!  (Until now, Sunday had endured 3 years of numbness in these 3 middle fingers, post-MVA.)  Sunday’s pain levels also dropped to a ‘3’ after FSM.  Finally, there was no more pain above Sunday’s wrist and her pain was now limited to the base of her wrist following her successful FSM therapy.

In Sunday’s words,

‘It does not hurt [above the wrist] … It’s awesome … It’s awkward … It’s weird … Just my joints are sore, but everything else is not [sore] …’

Thus, Sunday felt more than 50% better within only 1 week of treatment at The Neurologic Relief Center!  Sunday’s pain due to CRPS was now limited to her right wrist only and a tingling sensation had finally returned to her 3 fingers for the first time after 3 years of numbness following her MVA.  The swelling in her right arm was also reduced.

Sunday’s first week at The Neurologic Relief Center offered hope that a life with less pain and greater right hand function was now possible!  Sunday was excited about completing the full 10-week treatment program at this Center shortly.

Summary

Frequency Specific Microcurrent may offer pain relief and improved function for some chronic pain patients including CRPS patients.  As such, FSM warrants further investigation (see References for papers by FSM expert, Dr Carolyn McMakin).

It is heart-warming to see that some CRPS patients such as Sunday are finally getting their lives back thanks to passionate and compassionate Pain Doctors including Dr Katinka!

Sabina Walker

Blogger, Pain Matters (in WordPress)

REFERENCES 

Sunday’s CRPS Story – 3 YouTubes by Dr Katinka van der Merwe

(1A) Sunday’s 1st Day of Treatment for CRPS (16 March 2015)

https://m.youtube.com/watch?v=6oS-_tZRcmQ

(1B) Sunday’s 3rd Day of Treatment for CRPS (18 March 2015)

https://www.youtube.com/watch?v=nf_3GoygF4s

NB This YouTube includes a discussion of Frequency Specific Microcurrent.

(1C) Sunday’s 5th Day of Treatment for CRPS (20 March 2015)

https://m.youtube.com/watch?v=Ddl-iXxpJDU

Frequency Specific Microcurrent for Pain 

(2A) McMakin, Carolyn. Frequency Specific Microcurrent in Pain Management (3 December 2010); Pages 1-256.

eBook ISBN: 9780702049255
Paperback ISBN: 9780443069765

https://www.elsevier.com/books/frequency-specific-microcurrent-in-pain-management/mcmakin/978-0-443-06976-5

(2B) McMakin, Carolyn. Nonpharmacologic Treatment of Neuropathic Pain Using Frequency Specific Microcurrent. The Pain Practitioner (2010); 20(3); 68-73.

 

(2C) Thomas, Brooke. Carolyn McMakin: The Resonance of Repair (A 68 Minute-Podcast Interview with Carolyn McMakin). Liberated Body (23 December 2014); LBP 030.

https://www.liberatedbody.com/podcast/carolyn-mcmakin-lbp-030

 

 

 

 

 

Woohoo! Australia’s ‘One Girl’, Chantelle Baxter, Is Finally On The Road To Recovery From CRPS, Along With Other CRPS Patients, Thanks To Their Own Guardian Angel, Dr Katinka!

Source of Featured Image of Chantelle Baxter:

http://www.onegirl.org.au/about-us/our-awesome-team

Dear Pain Matters readers,

You may remember reading about Chantelle Baxter, co-founder of ‘One Girl’, in a previous blog post:

https://painmatters.wordpress.com/2017/04/23/one-girl-from-australia-named-chantelle-baxter-is-determined-not-to-let-crps-win/

The great news is that Chantelle has finally started to recover from CRPS following a 15-week treatment program recently completed at The Neurologic Relief Center, Arkansas, USA (headed by Dr. Katinka van der Merwe; links below).

While she looks forward to a full recovery from CRPS, Chantelle’s progress so far is nothing short of amazing!  None of this would have been possible without her own Guardian Angel, Dr Katinka van der Merwe!  I am very happy for Chantelle!!

Chantelle’s Own Guardian Angel, Dr Katinka van der Merwe

Growing up in South Africa in a chiropractic family and earning a Doctor of Chiropractic degree at the Parker College of Chiropractic, South Africa, in 1999, Dr van der Merwe DC QNP specializes in the treatment of chronic pain.  Her non-invasive approach focuses on rebalancing the autonomic nervous system, with particular emphasis on the vagus nerve.  Dr van der Merwe and her dedicated team have treatment expertise in:

  • Functional medicine and neurology;
  • Neurologic Relief Centers Technique (NRCT);
  • Quantum Neurology;
  • Frequency Specific Microcurrent (see Sunday’s CRPS Story, below, that includes a discussion of this treatment);
  • Neurological/nerve rehabilitation;
  • Bioenergetics synchronization technique;
  • Biologic medicine; and
  • Nutrition.

Alexis’ Own Guardian Angel, Dr Katinka van der Merwe

Chantelle is not the only ‘Happy Camper’ after being cared for by Dr Katinka at The Neurologic Relief Center.

Alexis (18) has full-body CRPS that started in her left knee about a year ago.  Alexis received regular Ketamine treatment (1,200 mg) for her painful CRPS that persisted 24/7.  Ketamine helped bring her pain rating down from +’ to ‘4’, albeit with many of the adverse effects of Ketamine.

Recently, Alexis also received treatment from Dr Katinka and her team.  With treatments including Ketamine and ‘Neuromuscular Re-Education’ (the latter done by Dr Katinka), Alexis’ pain rating dropped to ‘0’ for a week (thereafter, ‘2’).

Shortly before this interview was done, Alexis’ pain rating was ‘0’ (NIL.  ZILCH! NADA!!)!  And this occurred after only 4 ‘Neuromuscular Re-Education’ treatments!

For more details, please see this YouTube dated 4 June 2017 called ‘AlexisCRPS 1 1’:

https://www.youtube.com/watch?v=VQUqLXuXh90

Dr Katinka, all I can say is ‘Wow!  Congratulations for doing such a great job!!’

Some Other Amazing CRPS Patients Successfully Treated By Dr Katinka van der Merwe At The Neurologic Relief Center

(1) Barbara Wall’s CRPS Story – http://rsds.org/journey-back-health-rsd/

(2) Jennifer’s CRPS Story – Part 2/2 – https://www.youtube.com/watch?v=PLkqMzLv9Xw

Part 1/2 of Jennifer’s Story is in References.  NB Both YouTubes on Jennifer include some treatment details.

(3A) Sunday’s CRPS Story –

https://painmatters.wordpress.com/2017/06/20/frequency-specific-microcurrent-and-other-non-invasive-treatments-for-crps-by-dr-katinka/

https://m.youtube.com/watch?v=6oS-_tZRcmQ

https://www.youtube.com/watch?v=nf_3GoygF4s

(NB This YouTube includes a discussion of Frequency Specific Microcurrent.)

https://m.youtube.com/watch?v=Ddl-iXxpJDU

(4) David’s CRPS Story – https://www.youtube.com/watch?v=hWIaMBhcvA0&sns=em

NB This YouTube includes the patient’s description of Dr Katinka’s gentle hands-on treatment around the upper neck/below head region to activate his vagus nerve.  This targeted and non-invasive treatment to re-balance his autonomic nervous system during the first week of treatment led to rapid and COMPLETE pain relief for David.

(5) Debbie’s CRPS Story – https://www.youtube.com/watch?v=yxgG6RfcrRY

(6) Kristin’s CRPS Story – https://www.youtube.com/watch?v=ltc8fUKhmZM

(7) Madi’s CRPS Story – https://www.youtube.com/watch?v=IVqSGHwmf-E

(8) Scott’s CRPS Story – https://www.youtube.com/watch?v=3p1dOOHDuio

(9) Brock’s CRPS Story – https://www.youtube.com/watch?v=MU7ggYcdJO4

(10) Billi’s CRPS Story – https://www.youtube.com/watch?v=TpMSqe_aXk0

(11) Carlos’ CRPS Story – https://www.youtube.com/watch?v=pYE0aW1cTh8

(12) Brenda’s CRPS Story –

Summary

For Dr van der Merwe’s insights into CRPS, please click:

The Myth of a Cure for CRPS (11 October 2016)

http://rsds.org/crps-cure-myth/

Putting Out the Fire: A Brand New Approach to Treating RSD/CRPS (12 April 12 2016)

http://rsds.org/new-approach-rsd-crps/

The following is a fantastic YouTube called ‘What Do We Do?’ that explains Dr Katinka’s non-invasive treatments for CRPS (and fibromyalgia):

https://www.youtube.com/watch?v=3U6FE1jpmqU

To help CRPS patients further, Dr. Katinka van der Merwe also wrote a book called ‘Putting Out The Fire – New Hope For RSD/CRPS’ (available in Amazon; links below).

I am soooo happy for Chantelle, Alexis and all the other CRPS patients successfully treated by Dr Katinka van der Merwe!  The list of Dr Katinka’s very happy CRPS patients just keeps growing and growing!!

Dr Katinka has literally given the lives back to the aforementioned, and many other, CRPS patients! 

Sabina Walker, Blogger

Pain Matters (in WordPress)

REFERENCES

(1A) Dr. Katinka van der Merwe. Putting Out The Fire – New Hope For RSD/CRPS (24 October 2016); 288 pages.

ISBN-10: 1534832645
ISBN-13: 978-1534832640

https://drkatinka.com/putting-out-the-fire/

(1B) Dr van der Merwe.  Putting Out The Fire (a 4-minute YouTube)

(1C) Dr Katinka’s website

https://drkatinka.com

(2) The Neurologic Relief Center, Arkansas, USA (headed by Dr. Katinka van der Merwe)

http://seeingyouwell.com/about-us/

https://www.facebook.com/TheNeurologicReliefCenter/?fref=mentions&pnref=stor

Neurologic Relief Centers Technique™ (NRCT)

http://www.nrc.md

(3) Additional YouTubes of CRPS Patients Successfully Treated By Dr Katinka van der Merwe At The Neurologic Relief Center

(3A) Jennifer’s CRPS Story (Part 1/2;  Part 2/2 is incorporated in this Blog Post, above.)

 

 

CRPS Is Not ‘Rare’ In Fracture Patients

An important update on 29 April 2017 (regarding good news about Chantelle Baxter):

Great news!!  Chantelle Baxter is finally on the road to recovery from CRPS!

https://painmatters.wordpress.com/2017/04/29/woohoo-australias-one-girl-chantelle-baxter-is-finally-on-the-road-to-recovery-from-crps/

I am so thrilled and happy for her!  We need many more stories like this!

 

Dear Pain Matters readers,

Complex regional pain syndrome (CRPS) is often said to be ‘very rare’.

However, one does not have to look far to read or hear about someone with this medical condition.

My previous blog posts introduced 2 young and courageous women:

  • A Canadian named Paula Orecklin (29) from Winnipeg (nicknamed ‘Winterpeg’, for obvious reasons) (see bottom for links); and
  • An Australian named Chantelle Baxter (32), from ‘The Land Down Under’, Melbourne, Australia (see bottom for link).

While Paula and Chantelle grew up in 2 very different parts of the world, 15,000 km away from each other, both women share at least one thing in common.

On behalf of all Canadians living with chronic pain, Paula Orecklin was formally selected to be an Olympic torchbearer for the 2010 Vancouver Olympic Winter Games.  What an honour this is!

Meanwhile, Chantelle Baxter set a goal to educate one million (1,000,000!) girls in Africa by 2020!

Not only are both women truly amazing and inspirational, but sadly, both women also share a very painful medical condition called complex regional pain syndrome (CRPS).

How many others are there in this world just like Paula and Chantelle who are battling CRPS at this very moment??

Statistics of CRPS in Fracture Patients

The following 4 medical papers offer some insight into the incidence of CRPS in fracture patients.  Specifically, these studies state that CRPS may arise in (anywhere from) 7% to 48.5% (ie almost half!) of all fracture patients following fracture and treatment.

(1) A Korean study showed that 42 of 477 (ie 8.8%) of all surgically-treated wrist fracture patients developed CRPS1. Specifically, females with a high energy wrist trauma or a severe comminuted fracture had the highest risk of developing CRPS1 after surgery (Roh et al, 2014).

(2) A Dutch study reported similar results, whereby 7% (42 of 596) of all fracture patients developed CRPS1 following ER treatment (using the Harden and Bruehl diagnostic criteria). Alternatively, if the IASP diagnostic criteria for CRPS1 are applied, 48.5% (ie 289 of the same 596 fracture patients) had CRPS1 after treatment. Meanwhile, if the Veldman criteria were used, 21.3% of the same fracture patients (ie 127 of 596) developed CRPS1 after treatment. Thus, depending on the diagnostic criteria used for CRPS1, between 7% to almost half (!) of all 596 fracture patients developed painful CRPS1 following treatment.

Furthermore, all patients who developed CRPS1 after fracture and treatment still had ongoing severe pain and other CRPS1 symptoms that persisted even at 1-year follow-up. The Dutch researchers added that those who sustained an ankle fracture, dislocation or intra-articular fracture were at highest risk of developing painful CRPS1 (Beerthuizen et al, 2012).

(3) A Tunesian study reported that CRPS1 occurred in 32.2% (29 of 90) of all distal radius fracture patients following treatment involving closed reduction and casting. In other words, CRPS1 occurred in almost 1 in 3 distal radius fracture patients during the 3rd and 4th week after cast removal! Those at highest risk were females who reported severe pain and impairment of physical quality of life following comminuted, operated and casted wrist fractures (Jellad et al, 2014).

(4) An Italian study reported that CRPS occurred in anywhere from 1% to 37% of all fractures following orthopedic surgery, depending on the severity of the fracture. Patients at highest risk were women, older people, smokers and those with reduced bone strength. Early diagnosis is linked with remission in up to 90% of all cases. Where diagnosis of CRPS was delayed, electroanalgesia (e.g. spinal cord stimulation) sometimes offered promising results (Corradini et al, 2015).

I don’t know about you … but if the number of fracture patients who develop CRPS varies anywhere from 7% to almost half (!) of all fracture patients (depending on the criteria used to diagnose CRPS), this certainly does not sound like a ‘rare’ condition.

Summary

The good news is that if diagnosed and treated early, recovery from CRPS is likely.  Having said this, part or full recovery from CRPS is still possible in some cases even if diagnosed later (see large, 6-page Table in our review paper; Walker and Drummond, 2011).

Here’s to hoping that these statistics hit home with a strong message that CRPS is not rare, especially in fracture patients.  Complex regional pain syndrome does not discriminate based on age, gender, culture, race, skin colour, religion or any other criteria.

Clearly, the goals should be:

  • Early diagnosis of CRPS.  If unsure, pain and other medical specialists may be helpful with diagnosis;
  • Prompt referral to pain and other medical specialists;
  • Timely and effective treatment for CRPS; and
  • Regular follow-up until pain and other symptoms of CRPS are properly managed and/or reversed altogether.

Continuing research into CRPS is warranted.

After all, there may be a lot more ‘Paula’s’ and ‘Chantelle’s’ in this world battling CRPS than originally thought!

Sabina Walker, Pain Matters blogger

REFERENCES  

Incidence of CRPS following Fracture

(1) Roh YH, Lee BK, Noh JH et al. Factors associated with complex regional pain syndrome type I in patients with surgically treated distal radius fracture. Arch Orthop Trauma Surg (Dec 2014); 134(12): 1775-1781.

doi: 10.1007/s00402-014-2094-5

https://www.ncbi.nlm.nih.gov/pubmed/25311113

(2) Beerthuizen A, Stronks DL, Van’t Spijker A, Yaksh A, Hanraets BM, Klein J, Huygen FJ. Demographic and medical parameters in the development of complex regional pain syndrome type 1 (CRPS1): prospective study on 596 patients with a fracture. Pain (June 2012); 153(6): 1187–1192.

doi:10.1016/j.pain.2012.01.026

http://rsds.org/wp-content/uploads/2014/12/Demographic-medical-parameters.pdf
https://www.ncbi.nlm.nih.gov/pubmed/22386473

(3) Jellad A, Salah S, Ben Salah Frih Z. Complex regional pain syndrome type I: incidence and risk factors in patients with fracture of the distal radius. Arch Phys Med Rehabil (March 2014); 95(3): 487-492.

doi: 10.1016/j.apmr.2013.09.012.

https://www.ncbi.nlm.nih.gov/pubmed/24080349

(4) Corradini C, Bosizio C, Moretti A. Algodystrophy (CRPS) in minor orthopedic surgery. Clinical Cases in Mineral and Bone Metabolism (2015); 12(Suppl 1): 21-25.

doi: 10.11138/ccmbm/2015.12.3s.021.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4832412/

Examples of Patients who have Partly or Fully Recovered from CRPS following Anti-Inflammatory Treatment

(5) Walker, Sabina, Drummond, Peter D. Implications of a Local Overproduction of Tumor Necrosis Factor-α in Complex Regional Pain Syndrome [Review Paper]. Pain Medicine (Dec 2011); 12(12): 1784–1807 (24 pages).

(See large, 6-page table on pages 1791 – 1796.)

http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4637.2011.01273.x/abstract

CRPS Patients Discussed in this Pain Matters Blog

(6) Paula Orecklin

https://painmatters.wordpress.com/2017/04/10/lets-talk-to-an-inspirational-young-woman-paula-orecklin-about-crps-sativex-physiotherapy-and-neuroplasticity/

https://painmatters.wordpress.com/2017/04/11/happy-disabiliday-on-april-1-a-letter-to-you-all-from-paula-orecklin-a-crps-patient-from-canada/

(7) Chantelle Baxter

https://painmatters.wordpress.com/2017/04/23/one-girl-from-australia-named-chantelle-baxter-is-determined-not-to-let-crps-win/

(8) Four (4) CRPS Patients Including Paula Orecklin

https://painmatters.wordpress.com/2014/10/26/crps-video-on-crps-by-parc-a-crps-website/

‘One Girl’ From Australia Named Chantelle Baxter Is Determined Not To Let CRPS Win!

Source of Featured Image:

Go Fund Me – Help Chantelle heal from CRPS

https://www.gofundme.com/chantellebaxter

Dear Pain Matters blog readers,

Today I would like to write about a very brave and inspirational young woman named Chantelle Baxter, a 32-year old entrepreneur from Melbourne, Australia, who sadly developed complex regional pain syndrome (CRPS) last year after twisting her left ankle during a hike in Portland, Oregon.

Chantelle is currently undergoing a 10-week pain treatment program at a pain clinic in Arkansas, USA.  Because of its expenses, Chantelle is grateful for any donations (via ‘Go Fund Me’) that may help finance her pain treatments:

https://www.gofundme.com/chantellebaxter

1492436807354-1.jpg

1492436807354.jpg
Chantelle Baxter (above 2 photos, before CRPS, including a photo with her partner)
Source of image:  The Age (17 April 2017).
http://www.theage.com.au/victoria/someone-was-melting-the-bones-inside-my-legs-chantelle-baxter-battles-rare-disease-20170416-gvly65.html

CRPS is Not ‘Rare’ in Fracture Patients 

Complex regional pain syndrome is often said to be ‘very rare’.

However, the next blog post highlights 4 medical papers that suggest otherwise.  Specifically, these studies state that CRPS may arise in anywhere from 7% to 48.5% (ie almost half!) of all fracture patients following fracture and treatment.

I don’t know about you … but if the number of fracture patients who develop CRPS varies anywhere from 7% to almost half (!) of all fracture patients, this certainly does not sound like a ‘rare’ condition!   

See next blog post for statistical details about CRPS in fracture patients.

https://painmatters.wordpress.com/2017/04/26/crps-is-not-rare-in-fracture-patients/

Who is Chantelle Baxter?

Several years ago, Chantelle set a goal to educate one million (1,000,000!) girls in Africa by 2020.  To help achieve this altruistic goal, Chantelle co-founded ‘One Girl’, one of Australia’s fastest growing non-profit organizations.  So far, One Girl has already reached out to thousands of girls and women in Sierra Leone and Uganda.

http://www.onegirl.org.au/why-girls

Chantelle was recently selected as one of the ’30 Influential Aussie Women Under 30′ as well as ‘Melbourne’s Top 100 Most Influential People’ by Melbourne’s paper, The Age.

Wow!  This is One Girl with One Big Heart!!

Chantelle’s Current Challenge:  CRPS Caused by a Twisted Left Ankle During a Hike 

Chantelle has painful CRPS caused by a twisted left ankle that occurred during a hike last year in Portland, Oregon.  While Chantelle did not fracture her left ankle, her entire left foot started to burn with severe pain and it became ‘incredibly swollen’ with ‘a purple, red colour’.

Chantelle flew back to Australia from Portland, Oregon, the very next day after her hike.  Sadly, by the time she landed, she could hardly put any weight on her left foot.  Quoting Chantelle:

‘By that stage my foot was a strange purple, red colour and incredibly swollen … I knew something was very wrong — so I spent the next six weeks getting every test under the sun — MRI, ultrasound, bone scan, CT scan, blood work — I visited specialist after specialist and none of them could give me an answer about what was going on …’

Chantelle continued:

‘… and eventually I gave up trying to find an answer and flew back to the US, where a doctor finally diagnosed me with CRPS [in January 2017].’

Chantelle describes CRPS as (quoting):

“someone is melting the bones inside my legs. Like I’m being burnt alive from head to toe. Or that my entire body was being dipped in acid.”

https://www.gofundme.com/chantellebaxter

Despite nicknaming CRPS ‘The Suicide Disease’ (due to the extreme pain levels that she endured), Chantelle is not known as One Girl who gives up easily in the face of adversity and challenge.

As stated earlier, Chantelle is currently undergoing a 10-week treatment program at a pain clinic in Arkansas, USA.

Chantelle’s treatments for CRPS include:

  • ARP Wave therapy;
  • Frequency Specific Microcurrent; and
  • Daily chiropractic adjustments to release the pressure on her vagus nerve (see References on Dr. Kevin Tracey’s extensive research on the importance of the efferent vagus nerve including its role in inflammation and pain).

http://www.news.com.au/lifestyle/health/health-problems/chantelle-baxter-is-battling-the-most-painful-condition-on-earth/news-story/39e06339bdd284e14ad9e3ceed831d83

1492436807354-2.jpg

Source of image:  Cunningham, Melissa. The Age (17 April 2017).
http://www.theage.com.au/victoria/someone-was-melting-the-bones-inside-my-legs-chantelle-baxter-battles-rare-disease-20170416-gvly65.html
(There is also a 2-minute video in this link.)

19200812_1490646864.4072_funddescription.jpg

Source of image:  https://www.gofundme.com/chantellebaxter

Summary

Here’s hoping for this One Girl’s speedy recovery from CRPS!

Sabina Walker

Pain Matters blogger

An Important Update

Please see my update on 29 April 2017 on Chantelle Baxter, who is finally starting to recover from CRPS!:

https://painmatters.wordpress.com/2017/04/29/woohoo-australias-one-girl-chantelle-baxter-is-finally-on-the-road-to-recovery-from-crps/

REFERENCES

About Chantelle Baxter and One Girl

(1) Cunningham, Melissa. ‘Someone was melting the bones inside my legs’: Chantelle Baxter’s CRPS battle. The Age (17 April 2017).

http://www.theage.com.au/victoria/someone-was-melting-the-bones-inside-my-legs-chantelle-baxter-battles-rare-disease-20170416-gvly65.html

(2) Mayoh, Lisa. Chantelle Baxter is battling the most painful condition on Earth. News (19 April 2017).

http://www.news.com.au/lifestyle/health/health-problems/chantelle-baxter-is-battling-the-most-painful-condition-on-earth/news-story/39e06339bdd284e14ad9e3ceed831d83

(3) Markwell, Lauren. Go Fund Me – Help Chantelle heal from CRPS (26 March 2017).

https://www.gofundme.com/chantellebaxter

(4) One Girl

http://www.onegirl.org.au/why-girls

Dr. Kevin Tracey’s Research on the Efferent Vagus Nerve and its Role in Inflammation and Pain

(5) Behar, Michael. Can the Nervous System Be Hacked? The New York Times (Magazine) (23 May 2014).

http://www.nytimes.com/2014/05/25/magazine/can-the-nervous-system-be-hacked.html

(6) Vince, Gaia. Hacking The Nervous System. Mosaic Science (26 May 2015).

https://mosaicscience.com/story/hacking-nervous-system

(7) Fox, Douglas. The Shock Tactics Set to Shake Up Immunology. Nature (04 May 2017); 545: 20–22.

doi: 10.1038/545020a

http://www.nature.com/polopoly_fs/1.21918!/menu/main/topColumns/topLeftColumn/pdf/545020a.pdf

(8) Koopman FA, Chavan SS, Miljko S, Grazio S, Sokolovic S, Schuurman PR, Mehta AD, Levine YA, Faltys M, Zitnik R, Tracey KJ, Tak PP. Vagus Nerve Stimulation Inhibits Cytokine Production And Attenuates Disease Severity In Rheumatoid Arthritis. PNAS (2016); 113(29): 8284-8289.

doi: 10.1073/pnas.1605635113

http://www.pnas.org/content/113/29/8284.abstract

“Happy Disabiliday!” A Letter To You All From Paula Orecklin, A CRPS Patient From Canada

Featured image and photo credit:  Dario Schor 

You may remember Paula Orecklin, the inspirational Canadian CRPS patient whom I wrote about in yesterday’s blog post:

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

https://painmatters.wordpress.com/2017/04/10/lets-talk-to-an-inspirational-young-woman-paula-orecklin-about-crps-sativex-physiotherapy-and-neuroplasticity/

(There are additional References and Links at the end of this blog post.)

This week, Paula sent me a beautiful letter to share with all of you (see below).  Paula’s letter contains a very important message for everyone, on behalf of all people living with disabilities including chronic pain.

I feel delighted and honoured that Paula decided to share her inspiring letter and beautiful photos with my Pain Matters Blog (as well as any other media that Paula chooses).

Upon reading Paula’s letter, I thought to myself,

“Paula’s idea to start a ‘Disabiliday‘ tradition for patients whose lives are challenged by disability and pain is fabulous!  In fact, any day, whether it is April 1 or otherwise, is a great day to celebrate people who face adversities and obstacles due to disability including pain, and to also be grateful for our own blessings.”

Quoting from Paula’s her own words written to all of you from the bottom of her beautiful, caring and generous heart:

This past Saturday, April 1, 2017, I held the world’s newest disability holiday – Disabiliday. I just entirely made up a holiday. I figure someone has to have started every other celebration, so why can’t I do the same?

Last year, I had my 15th anniversary of having Complex Regional Pain Syndrome, a severe chronic pain disease. With such a large milestone, I knew I could either get very depressed, or make something positive out of it. It wasn’t something I could just ignore. Instead, I chose to make a celebration out of it. I hadn’t just been in pain for 15 years – I was in pain for 15 years and was still going.

It became my Disabiliday.

The event turned out to be so positive and wonderful that I decided to hold a second one this year. I ended up making more progress this past year than I ever had, in terms of function and ability. I wanted to celebrate that as much as anything – that I’ve been in pain for 16 years and am now going somewhere. I don’t really know where yet, but I figure I have another year to figure that out.

I think Disabiliday could also be relevant to other people with disabilities. When you’re disabled, you can often feel isolated, or like you’re not having the same kind of lifetime milestones other people have. Maybe you can’t move out and have a housewarming, or maybe you can’t have a long term relationship with engagement and marriage and babies. Of course, plenty of people with disabilities do just those things and I’d never discount them or their lives – but I, at least where I am right now, don’t feel like I’m able or ready for them. And even birthdays can feel like you aren’t where you should be in life, especially compared to people around you.

So I wanted to do something new and different. I wanted something that fit where I am in life, where I am emotionally.

And thus, Disabiliday. A day to celebrate that despite the amount of pain I’m in, despite the limitations my disease has enforced, I still am. I still have worth. I still have a presence in people’s lives. I still am going.

Surrounding myself with the support structure I’ve been so lucky and honoured to have found in my life, I was able to sit back and take in just how many people love and care about me. Without them, I would never have gotten through so many years of pain. They’ve made the time worth it.

Disabiliday is a way of reinforcing my place in life. The place in my life, and in my family and friends’ lives. Emotionally and psychologically, all of the normally invisible ways people care were made evident. It might seem silly to just make up a holiday out of nothing but a terrible pun my friend came up with to have a Disabilitea Party that I later expanded because if I’m going to make up a celebration I might as well get a full day out of it, but the meaning really is there.

And it was a lot of fun too. I got my hair and makeup done at Sephora and Mario’s Salon (now Aura Polo Park) respectively last year and felt amazing once I was all made up. This year I got my hair highlighted, trimmed, and makeup all done at Aura Garden City. It’s superficial to some extent, but I felt so much better once finished. It’s an external thing, of course, but that doesn’t mean it doesn’t matter.

Last year we went to Sam Po Dim Sum and also introduced all of my non-Jewish Winnipegger friends to the deliciousness that is a shmoo torte from Gunn’s Bakery. It’s this layered angel food and whipped cream confirmation that’s North End of Winnipeg Jewish tradition.This year I upped my game with a wonderful dinner at Kildonan Park’s Prairie’s Edge restaurant and a cane cake from Dolce Bake Shop.

I’ve used two canes for quite a few years now (when I wasn’t in a wheelchair), and I’m finally, finally starting to walk on my own. In fact, I made a great entrance to my party by walking in. That alone made the night amazing.

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Photo Credit:  Dario Schor

But I wanted to step it up. I went to this awesome bakery (I recommend the chocolate cupcakes with pistachio buttercream icing) and had the pastry chef make a custom cake for me- a replica of one of my canes.

And man, did slicing that thing up feel good!

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Photo Credit:  Dario Schor

Other highlights of this year’s Disabiliday party included a featured guest, my physiotherapist Maria Pawlyshyn of Movement360 Inc. She is a huge part of why I’ve made so much progress this past year. Working with her, I’m doing better than I ever have since developing Complex Regional Pain Syndrome.

Other features included a dinosaur balloon- a DisabliT-rex of course (I hate myself for these puns just as much as you do) – and a truly stunning purse my mom and I designed and she made for the event (see top photo). We’ve made a lot of purses over the years, but this one has to be one of the best. Just really gorgeous. The writing on the front of it is my handwriting.

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Photo Credit: Dr George Fulford

We also filmed the Disabiliday parties for a documentary Dr. George Fulford of the University of Winnipeg and I have been filming for a few years now, with the assistance of Steven Mellor for sound. Originally meant to be the first of a series of five minute videos of young adults with disabilities, this project has ended up capturing the huge amount of progress I’ve made over the past couple years. I was at my worst, nearly entirely wheelchair bound, when we started this project and I’ve made such huge gains. To actually walk on my own – I never expected ever to do that again in my life.

In other bragging about things news, my wonderful friends got me the most amazing sets of rings for a Disabiliday present. This isn’t quite as materialistic as you might think. For many years now, I’ve developed open sores and wounds all over my body. My doctors think that with the amount of pain I’m in, always, the skin has just sort of gotten very weak and opens up into wounds. I don’t do anything to create them, I’d like to explain – they just open up without any influence or action on my part. They eventually close up but leave scars. Even though the scars eventually start to fade, it doesn’t help because more new wounds have already opened up.

To detract attention from all of my wounds, I wear lots of rings (and wear makeup) to both cover up wounds on my fingers and to attract attention away from wounds on the rest of me. My friends know this, and so rings really do mean a lot to me. Plus they are adorable and I totally love them too.

So Disabiliday does really have some meaning. One one level, I realize how weird – and how self-important – it is to make up your own holiday and expect people to celebrate it. On another hand, this matters to me, and my friends honestly do support it. If it makes me feel better, if it doesn’t harm anyone else…why not? Maybe a lot of people – if they were to ever even hear about it – will think me stuck up or even that I’m celebrating being a victim of my disease, but I can’t help that. All I can do is lay out my reasoning here and hope maybe other people might understand. That’s really all anyone can ever do, really.

Finally, I want to thank Prairie’s Edge for hosting us, Dolche Bake Shop for a delicious cane, and Aura Garden City for totally making me over.

And I really want to thank my best friend, Eryn Schor, for not only organizing both of my Disabiliday events, but actually sticking around for the better part of five hours as I got all made up. Now there is a truly loyal friend! She means so much to me and has been by my side since we met in elementary school. Without her, these events would never have happened.

Thanks also go to Dr. George Fulford for filming the whole event – and for filming my life over the past few years, and to Steven Mellor on sound. Dealing with that boom mike was not easy!

And lastly, thanks to my parents. My dad was unable to be in town for the event, so we just got him on Skype on a phone to take some family photos. With my parents, all of my friends, and my health care providers, with all of their love, care, support, understanding, work, and through their thought, research, and education, I can truly say that despite the amount of pain I’m in, the past 16 years have been entirely worth it.

Happy Disabiliday!

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Photo Credit:  Dario Schor

I am certain that most of you will be equally touched by Paula Orecklin’s letter just as I am!

Sabina Walker, Pain Matters Blogger

PS  Are there any thoughts on Paula’s idea of a ‘Disabiliday‘ tradition from the rest of you in ‘Pain Matters Blog Reader-Land’?  If yes, please feel free to comment…

FURTHER REFERENCES AND LINKS ON PAULA ORECKLIN, CRPS PATIENT:

(1) Paula Orecklin – UNE Patient Case Study – April 4, 2013

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

(2A) CRPS Video on CRPS by PARC (a CRPS website)

https://painmatters.wordpress.com/2014/10/26/crps-video-on-crps-by-parc-a-crps-website/

(2B) This blog post also includes details and links to a video/DVD called:

Living a Life in Pain – The Story of RSD/CRPS (by Sarah Panas, film maker):

http://www.rsdcanada.org/parc/english/parc/news.htm

This video is also accompanied by a 5-minute trailer:

Living a Life in Pain: The Story of RSD/CRPS – Trailer’

http://www.youtube.com/watch?v=uB1TPVND9iU

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

Conversations Between Colin Froy, A British Foot Nerve Pain Patient (1952-2013), His Pain Team And The Pain Researchers

Featured Image taken from The Pain Detective (Video), courtesy of Mosaic

Dear Pain Matters readers,

So what is it really like to have nerve pain??  The best way to find out is to actually talk to a patient who suffers from nerve pain.  And that is exactly what the excellent video called ‘The Pain Detective‘ (by Barry Gibb, film maker) did.

Colin Froy, one of the millions of nerve pain sufferers in the world and a policeman who retired in 2011, was diagnosed with myeloma type cancer in the blood (light chain deposition) in 2004.  He received chemotherapy for 6 months including thalidomide drug treatment.  Unfortunately, the latter led to ‘tingling toes syndrome’.

The term ‘tingling toes’ does not do justice to the severity of Colin’s nerve pain.  This term drastically understated the intensity of Colin’s thalidomide-induced nerve pain in his toes from 2004 until his passing in 2013.  In Colin’s words:

‘… the side-effects of thalidomide, they call it tingly toes. Because tingly toes, you think, you know, you get sort of tingle and it goes away, but it’s not like that [laughs], it’s painful toes. I mean, the nerve endings are all shot to pieces, like a dead tree. It gets worse and worse, and you just can’t walk as far as you used to. Now, if I’m lying in bed sometimes, I get this sensation as if someone’s just pushing a needle through the toes, and it lasts for four or five seconds and then it’s gone…’

(Above quoted from ‘The Pain Detective Transcript’:

https://mosaicscience.com/extra/pain-detective-transcript )

The video added that the economic cost of pain in the USA alone is around USD635 billion per year, more than the costs of cancer and cardiovascular disease combined.  In fact, pain is the Number One Reason why people see their GP.

Without further ado, I urge readers to simply watch the 30-minute video (and also read the narrative) that presents many interesting, lively and heart-warming conversations between Colin Froy (1952 – 2013), his caring pain management team and a talented pool of pain researchers who are passionate about their goal to ease nerve pain and suffering (see video link and references, below).

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Images taken from The Pain Detective (Video), courtesy of Mosaic

Despite his unrelenting severe nerve pain, Colin had a positive outlook on life, where ‘his glass was always half full’ instead of ‘half empty’.  Although his nerve pain was enduring until his final days in 2013, his sense of humour and warm smile will always be endearing.

May his message, and that of others with chronic pain, reach our collective heart and soul so that all this pain and suffering is not in vain.

Sabina Walker

Pain Matters Blogger

VIDEO LINK AND REFERENCES

(1) Gibb, Barry J. The Pain Detective (Video) – On The Hunt For New Ways To Treat Pain. Mosaic – The Science of Life (24 June 2014).

https://mosaicscience.com/story/pain-detective

(2) Gibb, Barry J. The Pain Detective Transcript. Mosaic – The Science of Life (24 June 2014).

https://mosaicscience.com/extra/pain-detective-transcript

(3) Gibb, Barry J. Making The Pain Detective. Mosaic – The Science of Life (24 June 2014).

https://mosaicscience.com/extra/making-pain-detective