PAIN WARRIOR: Mimi Hoppe – Girl Vs. CRPS

While it’s my brother who has RSD / CRPS, as with any disease, the whole family is affected.  The lives of my two young nieces especially have changed.  Their once active father can’t “play” with them in the same way he used too;  Dad biking with them has been modified to my brother walking behind them while they zip back and forth.  Chasing them becomes quickly grabbing their giggly selves as they run by.  You could say that,  all in all they have “adapted” to this new way of life but it’s hard to adapt to your father, out of the blue, on his knees battling a pain flare.  It’s at those times I see those glimpses of fear or confusion in their eyes.

The other day on my search for news regarding RSD / CRPS, I found a video by Mimi Hoppe.  Mimi is 10 years old and has RSD / CRPS.  She has made an awareness video introducing  her pain management team at Lucile Packard Children’s Hospital at Stanford.  It’s a great video that highlights physiotherapy, desensitization  techniques not to mention the bubbly and inspirational Pain Warrior, Mimi Hoppe.

When I played this video for my nieces they were spellbound.  Here was, not only another person with RSD / CRPS but a young girl, like themselves.  As the video played, they asked me, “What are they doing to Mimi?”  I explained that the Hospital was trying different things to try to stop her pain or bring it to “more comfortable” level.   For the first time it seemed I saw a glimmer of hope and understanding in their eyes.  Other people had this disease, not only their Dad and there were lots of people working to stop the pain their Dad felt.  I believe there is a comfort in “knowing”.  If you have children, think about introducing them to Mimi Hoppe.

 

Pain Warrior: Lindsay Spengler Update

When I first began researching CRPS / RSD to help my brother I came across the story of Lindsay Spengler. Three years ago news coverage reported on Lindsay and her fight with RSD. I actually discovered the Ketamine coma at this time because Lindsay was headed to Germany for the experimental treatment. Media coverage like the following helped to raise more than $200 000 for Lindsay’s travel and treatment.

Unfortunately complications arose and treatment in Germany was suspended but Lindsay was able to go to Florida and then Mexico to finally receive the Ketamine Coma treatment. It’s amazing to see her now Story of a miracle: Boyertown athlete’s road back from RSD (video).

Also you can read more indepth about Lindsay here RSD Foundation: Lindsay Synopsis

Finally, here is Lindsay’s personal website: lindsayspengler.com

Way to go Lindsay you are an inspiration to many!

AWARENESS: News – Dropped Table Changes Woman’s Life

RSD / CRPS News Coverage: (link opens in new tab)

Dropped Table Changes Woman’s Life – Regional News – Berks Story – WFMZ Allentown.

AWARENESS: CRPS / RSD Article on The Huffington Post

I am always grateful to see stories about CRPS / RSD that reach a large audience. Jim Moret, Huffington Post contributor and Chief Correspondent, “Inside Edition,” Attorney and Author of “The Last Day of My Life” writes about his young sons battle with CRPS / RSD.

It’s been nearly two years since our son’s debilitating and excruciating pain in his left foot was first diagnosed as CRPS, Chronic Regional Pain Syndrome, also known as RSD, Reflexive Sympathetic Dystrophy. The condition is a little known and difficult to diagnose nerve injury, where simply put, a nerve is stuck in the “on” position, sending signals of intense pain to the brain. His first bout with CRPS kept him bedridden for six weeks. He was unable to touch his foot without experiencing knife-like pain. I fashioned a foam pillow to keep his foot suspended safely out of harm’s way, but the pain itself was insufferable and unending.

Read the whole story at The Huffington Post

MISDIAGNOSED: The Pain of Denial

Something my brother and tens of thousands afflicted with CRPS / RSD have and will experience is the denial or misdiagnosis of their pain by medical professionals.  You know the story, you keep going back to your Doctor looking for answers to your pain only to be told, “It’s all in your head”.  Meanwhile, the pain gets worse presenting many other serious physical / life issues.  Well not only do I think that this is sad and unfortunate but considering the level of pain associated with CRPS / RSD, the complications of no treatment, as well as, the resulting loss of movement, career, sleep and sanity etc.  can only be labeled as abusive.

So why is CRPS / RSD misdiagnosed or denied?  Some think the reason is because it is so poorly understood.  Different patients present with different symptoms and respond to different treatments.  Some think it’s because there are so many people seeking narcotics for reasons other than pain that Doctors are ambivalant to prescribe treatment for something they cannot “see”.  It could be because many in the medical community, even today, know nothing about CRPS / RSD.  As well, in some cases the denial could even stem from a Doctor who doesn’t want to admit the surgery he performed could have started the CRPS / RSD nightmare.  Whatever the case, with pain being a leading cause for suicide, one can only wonder if it is the actual pain levels and consequent life struggles that caused people to make such a horrible decision to take their own life or rather being told over and over again, “It’s all in your head”.

Cynthia Toussaint is a pain warrior you may recognize as a longstanding advocates for CRPS / RSD. I first was introduced to Ms. Toussaint while watching the television series “Mystery Diagnosis”. She has suffered not only with CRPS / RSD for over 20 years but for at least the first decade experienced terrible denial of her pain by the medical professionals who “treated” her.

Cynthia Toussaint now champions women in pain through her For Grace website.  If you go to the website you will see several recent news reports regarding the misdiagnosis and denial of pain and CRPS /  RSD.  I couldn’t seem to embed one but here is an example from 2009:

As well those at For Grace hold annual pain conferences.  Although geared towards women the hope is still there that everyone experiencing pain, especially CRPS / RSD patients will hear, ” I acknowledge your pain” , instead of, “It’s all in your head”.

Prescription Drug Shortage and Cefadroxil for RSD / CRPS Treatment?

The Montreal Gazette posted a story last November regarding prescription drug shortages. You can read the full article by clicking the link at the bottom of the page. Admittedly, drug shortages are a cause for concern but while reading the article something else jumped out at me:

Patricia Micheletti, a chartered airplane broker, said she had to contact 34 Montreal pharmacies before she could get her prescription filled for cefadroxil, an antibiotic.

Micheletti suffers from complex regional pain syndrome in her left arm. It’s a debilitating condition, and no painkillers seemed to work until one day she took cefadroxil to treat an infection in her finger.

To her surprise and immense relief, she said, the antibiotic also eased her pain. She contacted the pain clinic at the Montreal General Hospital, and an immunologist who examined her agreed to continue putting her on cefadroxil.

But when that prescription ran out, Micheletti said she scoured the city desperately for a refill.

I have never heard of the drug cefadroxil before. Seems it is a broad spectrum antibiotic used to treat bacterial infections. Might be something to ask your Doctor about.

Read more here

Support Forum at Healthboards

Healthboards is an online health forum type website. I typed in RSD and it led me to the spot you will hit when clicking the link. Also tried typing in CRPS and you get another list of threads to read. One thread was all about Spinal Stimulation and another asking for ideas to sleep more comfortably. Check it out. know I sound like a broken record but the shared knowledge is priceless.

PAIN WARRIOR: Barby Ingle and Ketamine

Barby Ingle is an RSD / CRPS sufferer who receives regular Ketamine infusions as part of her treatment plan. She is also the author of “RSD in Me” a resource/information book that you can get from her foundation website POWER OF PAIN.

The RSD AWARENESS QUILT Project

The RSD/CRPS Awareness Quilt is an ongoing project and will be until there is a cure, If you have RSD or someone you love has it, please take the time to participate and send in your square for the quilt. Its growing fast and is already attracting some media attention. This project will do more than anything yet to finally get the problem of RSD/CRPS the attention it desperately needs.(from youtube channel RSDResearchFunding)

TREATMENT / RESEARCH RESOURCE for you and your Doctor

One of the reasons I started this site was because I was very frustrated with the treatment of this disease named Chronic Regional Pain Syndrome (CRPS) / Reflex Sympathetic Dystrophy (RSD). I do have to say that my brother’s General Practitioner is wonderful with keeping him on an acceptable level of pain medication. He’s also wonderful in helping us battle the evils of Disability Insurance. As well, he’s great at monitoring Scott’s condition noting, muscle atrophy and the like but that’s all he can do. The rest is left up to Scott’s Pain Specialist who is wonderful in the fact that she has diagnosed him. She’s also kept up with the Canadian treatment protocols of nerve blocks and medication. BUT She’s one Doctor treating hundreds of pain patients and the appointments are too far apart for my liking. Plus, I worry that all this information is not correlated enough between the different medical professionals. Where is all the research and innovation happening? Exciting news, I’ve found something.

Painclinician is a website that is dedicated to sharing resources, exchanging ideas and debating issues in the pain treating community. Just tell your Doctor to search CRPS (remember this is the most used “medical” title for this disease) and there is a wealth of new research, video updates to help in our fight.

Also for you, the sufferer, family member, or caregiver, click on the resource link and use the printouts along with your treatment provider.

I haven’t watched all the videos yet BUT I will and so should you. Become your own “Expert” in the fight against RSD / CRPS. There are too many Doctors that have never heard of this disease. It’s up to us to help educate and spread the word.

Off to watch some videos now … keep up the fight 🙂