Invisibility By Ciardha Kimberley Hepburn

Complex Regional Pain Syndrome (CRPS) Is poorly understood. CRPS is one of the highest pain & inflammatory diseases known carrying a 42/50 in the McGill pain scale. CRPS usually occurs after an injury. There is no simple cure or single treatment recommendations, it requires a multidisciplinary approach to help manage. 

CRPS has also been described as an “invisible” condition. People diagnosed with CRPS look perfectly healthy on the outside, nevertheless they are suffering from severe, life-altering chronic pain on the inside.  

The approximate overall incidence rate of CRPS was 26.2 per 100,000 person years with females affected at least three times more often than males. The highest incidence occurred in females aged 61-70 years.   

For newly diagnosed patients, it was found in research that one-year prior to diagnosis for all CRPS patients spent total costs of $7904 outpatient costs $6706 and pain prescription costs $1862-$7649. At the year of CRPS diagnosis, the median [IQR] costs were significantly higher than the baseline costs with a range of $8508-$16,666; outpatient costs $7251-$13,568; and pain prescription costs $2077-$8856. Over an eight-year period after CRPS diagnosis, costs between all the years ranged from the highest (one-year) to lowest (seven-years), $4845 to $3888.   

 

CELEBRITIES WITH CRPS 


 Paula Abdul; American singer and dancer. Former judge on American Idol 


Constance Marley; half-sister to Reggae singer Robert ‘Bob’ Nesta Marley 


Barby Ingle; the head spirit program coach at Washington State University 


Toria Sullivan; collegiate triathlete at Georgetown University 


George Clooney; American actor 


Nazair Jones; Seattle Seahawks  


Maria Cross; American Actress 




David Beckham; former professional soccer player and international icon 


Nicole Kidman, American Actress 


Jo Whiley; British Radio DJ and television presenter 


Soumitra Chatterjee; a legendary Indian actor 



 

SUPPORT/RESOURCES 


Women & CRPS - cordiscosaile.com/crps-resource-for-women-and-veterans 


Trial by Fire A film about a rare disease (CRPS) https://youtu.be/B_ocn8Pcsxo?si=GRpCqGV79f33v4Pd 


The CRPS Warriors Foundation https://hubs.ly/Q01ZYHlt0 


International Pain Foundation; https://internationalpain.org/ 


CRPS UK https://painuk.org/members/charities/crps-uk/ 


CRPS Facebook Group https://www.facebook.com/groups/2307309606/ 


The Purple Bucket Foundation https://www.tpbf.org.au/


London Pain Clinic https://www.londonpainclinic.com/complex-regional-pain-syndrome/living-with-complex-regional-pain-syndrome-a-guide-for-friends-and-family/ 



Chronic Regional Pain Syndrome there is nothing to be seen, apart from sometimes goose bumps or swelling. 

Remember, CRPS is a enfeeble and difficult condition so for those supporting someone with CRPS make sure that they talk to their friends and family as well, to express their emotions and fears, so that they can be more equipped to support the person with CRPS, even when it can be a very hard task at times. 

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"Invisible No More: Open eyes, open minds" 

See yah, next time! 

 

Diabetic neuropathy is a type of nerve damage that can occur if you have diabetes. High blood sugar (glucose) can injure nerves throughout the body. Diabetic neuropathy most often damages nerves in the legs and feet. 

Diabetic neuropathy is a profoundly serious complication of diabetes that may affect up to 50% of people with diabetes. Slow its progress with consistent blood sugar management and a healthy lifestyle. 

There are different types of neuropathies based on the nerve that is involved: 


Peripheral neuropathy (very common) is a type of nerve damage that usually affects the feet and legs and sometimes affects the hands and arms. About one-third to one-half of people with diabetes have peripheral neuropathy. 
Autonomic neuropathy is damage to nerves that control your internal organs, leading to problems with your heart rate and blood pressure, digestive system, bladder, sex organs, sweat glands, and eyes. The damage can also lead to hypoglycaemia unawareness. 
Focal neuropathies are conditions in which you typically have damage to single nerves, most often in your hand, head, torso, or leg. The most common types of focal neuropathy are entrapment syndromes, such as carpal tunnel syndrome. Other types of focal neuropathy are much less common. 
Proximal neuropathy is a rare and disabling type of nerve damage in your hip, buttock, or thigh. The damage typically affects one side of your body and may rarely spread to the other side. Symptoms gradually improve over a period of months or years. 

 

SUPPORT GROUPS 

The Foundation for Peripheral Neuropathy www.foundationforpn.org/support/support-groups 

Peripheral Neuropathy Resources Online Support Group www.peripheralneuropathyresources.com 

Peripheral Neuropathy Success Stories (Private Facebook Group) 

Peripheral Neuropathy Resources (Facebook Group) 

Neuropathy Care Support Group (Facebook Group) 

Our Neuropathy Friends (Facebook Group) 

Our Neuropathy Friends Spouses (Facebook Group) 

Peripheral Neuropathy Support Network www.pnsnetwork.org 

On Your Feet (Facebook Group) 

Western Neuropathy Association Contact: Katherine Stenzel at klstenzel@hotmail.com 

  

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"Invisible No More: Open eyes, open minds" 

See yah, next time! 

Trigeminal neuralgia (TN), also known as tic douloureux, is a disorder of the fifth cranial nerve (trigeminal nerve). We have two for each side of our face. However, TN affects only one side of the face.

Treatment for TN can be very expensive, with a studying showing that it cost USD3900-USD40,000 in the year of 2018 for sufferers in Taiwan.

There are several very famous people that suffer openly of this painful condition;



*Salman Khan (Bollywood)

*Travis Barker (Blink-182 drummer)

*Salma Hayek (Desperado)

*Marcia Cross (Desperate Housewives)

*Kristin Chenoweth (Glee)

*George Clooney (ER)

*Steve Kerr (Head coach Golden State Warrior)

*Joey Kramer (Aerosmith drummer)



There are several places that support can be garnered from:



Trigeminal Neuralgia Association UK (also on Facebook) www.tna.org.uk



Facial Pain Association www.facepain.org

www.painuk.org



The Brain Charity

www.thebraincharity.org.uk



Stanford Healthcare

www.stanfordhealthcare.org

650-736-0262



The Facial Pain Association

www.raredisease.org



UCL Health: Trigeminal Neuralgia Association Support Group

www.ucihealth.org

714-944-3044

They meet quarterly from 1300-1500



Trigeminal Neuralgia Association of Canada

tnac.org>tnac>support-group



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"Invisible No More: Open eyes, open minds"



See yah, next time!!

Fibromyalgia sufferers represent over two million people worldwide. It is one of the most misunderstood conditions due to its non-specific symptoms. As sufferers we need support in many ways especially from our friends and family. Never blame us for developing this conditions especially as it gets worse. No, it is not life-threatening but it is life-changing.



Treating FMS is also expensive as it not only costs money but manpower where the sufferer misses work frequently. Studies show treatments are more than USD$393.75/annually with an additional USD$2034/annually depending on severity.



Did you know there are many celebrities that have came out as having fibromyalgia?

"I wish to help raise awareness & connect people who have it," wrote Lady Gaga, (Stefani Germanotta) on Fibromyalgia.

Some other celebrities include;


Morgan Freeman
Mary McDonough
Janeane Garofalo
Sinéad O'Connor
Susan Flannery
Florence Nightingale
Rosie Hamlin and many more



Get more help from the following organizations:



The United Kingdom


Fibromyalgia Association UK: https://www.fmauk.org/
Fibromates (North West Fibro Support Group) : https://www.facebook.com/fibromates/



United States of America


American Chronic Pain Association in California https://www.acpanow.com/
National council on Disability in Washington, DC https://www.ncd.gov
Fibromyalgia Coalition International Inc. in Kansas https://www.fibrocoalition.org
National Fibromyalgia & Chronic Pain Association in Utah https://www.fmcpaware.org Email- info@fmcpaware.org
FibroFitWarriors https://fibrofitwarriors.com/

Australia


MoreGoodDays https://www.moregooddays.com/
Fibromyalgia Australia https://www.painaustralia.org.au
Pain Australia https://www.painaustralia.org.au
The Australia Prevention Partnership Centre https://www.preventioncentre.org.au



Jamaica

Jamaica Council for Persons with Disability https://jcpd.gov.jm/



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