Shelter Me From The Rain

Written by Erica Santiago. Reposted with permission for the RSDSA blog.

Back in November 2012, I was on my way to a doctors appointment out in Boston Massachusetts. I was hit on the left side of my car by a very large tractor trailer truck during a merge in the road. I did not know at the time that this accident was going to be the changing point in my life.

The condition I developed from this accident made everything different and quickly, seemingly overnight. My left hand ended up not working correctly five days after the accident. I woke up and felt a very strong weakness in my left hand. I called my neurologist that I see for migraines and he said he wanted to see me right away. I went to see him and he ran some tests, did a CT scan, and an MRI of my arm. He called me to tell me that everything came back normal.

I was losing the ability to function my hand normally. As each day went by, my left hand started closing with severe muscle spasms into a fist. My fingers pulled in downward. I could not open it anymore. I only had a functioning pinky on that hand. Suddenly I was down from ten fingers to six. The photo below shows the position my hand was stuck in.

Hand curled in

I had to relearn everything: How to open up packages using my mouth, how to button up shirts using my right hand and a pinky on my left hand. I needed to open up straws using my teeth. I was forced to relearn how to modify my life around using six fingers. I would get stares from strangers in McDonald’s and other restaurants. People of all ages just looking at me wondering why I was doing things the way that I was doing them. I tried not to let it bother me, but deep down it did.

My four-year-old daughter was in the car with me when this tractor trailer truck hit my car. Thank goodness she was not hurt, but it was hard taking care of her with this going on. I was in so much pain as the muscle spasms were so tight it was like a strange force overcame my left hand. My fingers were digging into my palm.

Anything touching that arm sent electric shocks down my arm into my left hand. Breezes hurt as the simple wind felt like stabbing sensations. Rain felt like stinging bees on that arm. The cold was like ice picks jabbing me repeatedly. I could not be touched on that arm. I was tortured. This was all day and night, constantly never letting up. So imagine my pain when I broke this exact same wrist in June 2018. My wrist cracked while gardening and I was laying on the ground seeing stars. I got a fancy purple cast and luckily about six months later it healed.

Woman with a cast who is also holding her dog.
Here I am petting my dog Odin while wearing my cast. He was just a puppy then. He’s three years old now.

In 2013, a year after the accident, my hand was still closed after seeing a few specialists. What was worse is my wrist was now stuck flexed in a bent position towards my body. My left arm and hand became useless and I stayed that way for 3 1/2 years. I somehow made it through everyday with this excruciating pain.

I had seen many doctors and went through many different treatments some of which were very strange. I had a treatment where I had to stick my arm in a machine that was 107° and they were ground up corn husks inside that were blowing around my arm. I had another therapy, mirror box therapy, where I had to put my arm behind a mirror and my good hand in front of it. It is supposed to trick your brain into thinking that your good hand is your bad hand with the idea being that you can try to get some movement in the RSD affected limb.

I had so much physical therapy, years worth. I had about eight different therapists in three different places. I saw over 12 doctors in about a three year time span. It is really hard finding a doctor who even knows what RSD (also known as CRPS) is, never mind knowing how to treat this condition. I just wanted answers and no one was able to give them to me. I was losing hope and feeling immensely frustrated. I did not know where to turn.

It wasn’t until I went to a pain clinic out in Boston. I saw a pain doctor there who knew exactly what I had the moment that he met me. 

My arm was purple, ice cold to the touch. It was shiny and it also was extremely tightly stuck in spasms. The muscle spasms I was having he told me was something called Dystonia. 

He told me that the condition that I have causing the pain, discoloration and Dystonia is called Reflex Sympathetic Dystrophy. It’s also called Complex Regional Pain Syndrome. I went home and researched it and it scared the heck out of me. I now have this new condition that is completely life altering and I had a young child. I did not know what I was going to do.

Later on in my treatment, it was suggested that I get a major surgery and get an implant device called a spinal cord stimulator. I ended up having that surgery after going through extensive talking in counseling with people and specialists because that surgery does not always work. They put a battery pack into the right part of my back. I had over a 6-inch incision in the back of my neck, to make room for the metal plate. I also had about a 4-inch incision in my upper back.

That surgery ended up helping me for a few years and it did get my hand open. I had to use a remote control to up or lower the amount of electrical stimulation it was giving me. It basically blocks pain signals coming from brain and it confuses them, so it did help me for a few years, but then I started developing complications from that device. An infection after the first surgery was a big complication I had. I ended up having to be admitted in the hospital for five days and on pulse IV antibiotics.

I then also started developing an allergy to the metal of the product and started losing my balance and having very strange neurological symptoms. After all of this and after four years having it implanted, I decided to have my spinal cord stimulator removed. That was probably one of the hardest decisions I have had to make in my life because I knew that by removing this, I might lose my hand forever. I also knew though that if I left it in I might not have any quality of life going forward.

So I had to do what I thought was best. I still suffer with immense pain every day. I am happy to report that my hand is still open. I have kept it open by using it every day. If you do not use your RSD affected limb you can lose the function in it rather quickly. One of the biggest things I have learned is that you have to push through the pain every day, in your own way. Any way that you can do it.

Hand and arm post-cast
Here is a picture of my left hand shortly after my cast was taken off. My hand is open again. I can’t even describe the joy and relief I felt.

November 2021 will be nine years that I have had RSD. It is still extremely difficult and there are some days that I do not even know how I get through them, but I have great support from my parents. I have great support from my family and my daughter, who is now thirteen, understands a lot more about this condition. She also helps me around the house with the animals and cleaning. I am very blessed that I have such great people in my life that are able to support me in the way that they have.

My book details my journey even further than what I have written here. My book also has a chapter for family and friends to help them learn what they can say or do to help someone affected with RSD. In addition, it has a more medical in-depth explanation of what this condition is.

A photo of a red book

My book is called “Shelter Me From The Rain” and it is available on Amazon. I hope you do check it out and I hope that by sharing my story I can help others.

I am in the process of writing a sequel memoir called “Shelter Me From The Pain.” This book follows up from the last half of 2018 and on. That book will also be on Amazon once it is published. If you have any questions, comments or just want to say hi, please feel free to reach out to me at [email protected].  

I may have the world’s most painful condition but I have learned my incredible strength by learning how to live life in a completely different way. 

I have learned who my true friends are and whom I can depend on. I have learned that by continuing to find hobbies and activities that mean something to you, it can help keep you going on your darkest days. I have learned to take the good with the bad, to know when I need to rest, to accept the things I can’t do anymore and to embrace the things I can do. 

Never give up! You can do this! I have faith in you. In all of us! We are an RSD family and we can always be there for each other. I wish all of you fellow RSD warriors many low pain days to come.

Please consider making a donation to RSDSA today!

TSA Launches Toll Free Helpline for Travelers With Disabilities and Medical Needs

The Transportation Security Administration (TSA) has launched TSA Cares, a new helpline number designed to assist travelers with disabilities and medical conditions, prior to getting to the airport. You may call TSA Cares toll free at 1-855-787-2227 before traveling with questions about screening policies, procedures and what to expect at the security checkpoint.

Since its inception, TSA has provided information to all travelers through its TSA Contact Center and Customer Service Managers in airports nationwide. TSA Cares will serve as an additional, dedicated resource for passengers with disabilities, medical conditions, or other circumstances or their loved ones who want to prepare for the screening process prior to flying.

A representative of TSA Cares, will provide callers assistance, with information about screening that is relevant to the passenger’s specific disability or medical condition, or the passenger may be referred to disability experts at TSA. The organization recommends that passengers call 72 hours ahead of departure to allow TSA Cares to coordinate checkpoint support with a TSA Customer Service Manager located at the airport.

Every person and item must be screened before entering the secure area of an airport and the manner in which the screening is conducted will depend on the passenger’s abilities and any specific equipment brought to the security checkpoint. TSA strives to provide the highest level of security while ensuring that all passengers are treated with dignity and respect. The agency works regularly with a broad coalition of disability and medical condition advocacy groups to help understand their needs and adapt screening procedures accordingly. TSA holds quarterly meetings with this coalition to inform them about current training and screening procedures used in airports. TSA recently hosted a teleconference with members of these groups to announce the long-standing plans to implement TSA Cares for travelers and inform them of the upcoming launch.

All travelers may ask to speak to a TSA supervisor if questions about screening procedures arise while at the security checkpoint.

The hours of operation for the TSA Cares helpline are Monday through Friday 9am – 9pm EST, excluding federal holidays. After hours, travelers can find information about traveling with disabilities and medical needs on TSA’s website. Other communications tools include Talk To TSA, a web-based tool that connects directly, to an airport Customer Service Manager. You can call the TSA Contact Center, 1-866-289-9673 and [email protected], to ask questions, provide suggestions and file complaints.

Take Control of Your Journey

Written by Joshua Borg for the RSDSA blog.

How and when did you develop CRPS/RSD?

In July of 2019 I slightly hit my shin against a piece of lawn equipment. Later that day I could tell something was wrong based on how it felt. In the following weeks and months, I visited with multiple doctors who ran multiple tests, yet none of them could explain my pain. After an EMG around February 2020, doctors noticed nerve damage in both legs. After ruling out almost everything else, they determined that I have CRPS.

What has daily life been like since your diagnosis?

In the simplest terms… different. Having had this for a little over 18 months now, I feel as though I have been on multiple journeys during that time. The first 9 months were full of a lot of confusion and frustration. Having this pain but no answer to what was causing it just did not make sense to me. Usually you have something wrong, you visit a doctor, and then they tell you how to fix it. I just kept getting “I don’t knows” from doctors. Through all this, the pain just kept fluctuating from day to day. My leg would swell and bruise at times, then go away days later. I felt very defeated most days since I had no answers or solutions.

I will always remember the day my doctor felt confident in diagnosing me with CRPS. I was hit with a rollercoaster of emotions within a matter of minutes. First was a sense of relief to finally have some kind of answer, but that quickly shifted to fear and sadness as I started to think about what this diagnosis now meant. I knew a little bit about CRPS by that time because a doctor had suggested it as a possibility, so I had already done some researching. I was flooded with emotion for what this meant for my life moving forward. It is quite an interesting feeling when you realize that your life, in that moment, has changed. 

With guidance from my doctors, we quickly shifted into action mode as I have been told one motto of CPRS is “move it or lose it.” I immediately started PT and was very nervous at the onset. Worried that a movement here or a tweak there would cause some kind of setback. In the coming weeks I began to grow more confident and started pushing myself more and more during my PT sessions. I then bought all the equipment so I could begin doing these sessions on my own time. Finding that line of pushing yourself to improve, but not pushing too hard was a struggle at first, but I’ve grown more comfortable with it as time has gone on. Outside of that I have focused a lot more on my spatial awareness. Seeing as how I have had negative responses from pretty minor injuries, I’m just much more aware now about removing potential hazards around me.

What is one thing you wish those without CRPS/RSD could understand?

The mental toll this takes on us. There is so much to find out and so many changes to make to our lifestyle, all of that can seem a bit overwhelming. More than anything I have noticed it creates a tremendous amount of brain fatigue. I have learned to give myself time to say “I’m tired, I’m not going to search for any answers today,” and then be ok with that decision. Because so much of CRPS is not visible, it can be really difficult for those who are unaffected to have an understanding of the total effects. A therapist explained to me that those with CRPS are often grieving the loss of their former selves. Almost everyone has had to grieve the loss of a loved one at some point in their lives, but it is a very unique experience to grieve the loss of the self that you once knew.

What advice would you give to newly diagnosed Warriors?

Be diligent and be your own advocate with doctors. Take control of your journey. And almost as important, try to build a great support system. I’m extremely fortunate in that my family and friends have been my rock through this journey. I have heard of circumstances where tensions can build because our symptoms are often “invisible” and it’s really tough for others to understand. My circle has been an incredible support to me throughout all of this.

The other thing I have learned is that it is ok to rest… both physically and emotionally. Sometimes I may be too sore to exercise, so I don’t. And some days my brain may be too tired to work on my emotional well-being, so I opt to watch a movie or give myself other distractions. It is ok to give yourself a break from all of it. The key thing is to make sure you eventually get back to working on yourself so you keep moving forward.

What activities or treatments have helped you find temporary or long term relief?

Physical therapy helped me a lot. I started about one year after my onset of CRPS. Initially I was pretty scared to let a doctor touch my leg or push too hard during an exercise. But they built a program that eased me into it at my own pace. My wife and I also adopted a dog and I truly believe he has been great emotional therapy. He has given me another thing to focus on instead of the pain.

Please consider making a donation to RSDSA today!

Finding A Lawyer For a Workers’ Compensation Case

If you were injured at work and ended up with complex regional pain syndrome (CRPS) as a result of the injury, you may be eligible for workers’ compensation (WC). Under WC, your employer’s workers’ compensation insurance policy pays for your injury-related expenses (e.g., medical expenses and lost wages). Any WC case can be difficult, but a WC case that involves CRPS is typically even more difficult for a few reasons:

1. the disorder is not well understood
2. different individuals have different signs and symptoms
3. the symptoms can come and go

If you are having trouble with your WC paying for your medical care, you can contact your state’s WC official. WC laws vary by state, but each state has a WC official who heads an agency with a name such as “Division of Workers’ Compensation,” “Industrial Commission,” “Workforce Safety and Insurance,” or “Division of Labor & Management.”

The contact information for your state’s agency is in the blue government pages of your phone book and on the federal government’s Department of Labor’s website. Some states, such as Oregon and Kansas, also have an ombudsman to help injured workers through the process. The ombudsman’s office can be found through the state WC agency and may also be able to help you find legal advice.

In addition, you may also want to see if there is a program in your state that helps people with private health insurance.

If your state does have a program for private insurance, ask if it can handle WC complaints. WC cases may be handled differently from private health insurance complaints, but still the staff may be able to help, especially if the complaint relates to provider billing problems.

Getting a Legal Referral

Given the complications of CRPS WC cases, they often require a lawyer who specializes in WC, and ideally a lawyer who understands CRPS and how it affects you. If you decide to look for a lawyer to represent you in a WC case related to CRPS, first ask your friends, colleagues, family members, fellow support group members, or neighbors for recommendations. Word of mouth is often the best way to find a good attorney, especially if you get the same recommendation from more than one person. Another source of recommendations is through an Internet chatroom or bulletin board support group.

If you cannot find an attorney for your case through personal connections, several organizations have referral services.

The American Bar Association (ABA) has a referral service by state on its website.

Some links let you search for a lawyer by specific specialties (such as WC or the broader term of employment law). There are also many state and local bar association with directories of their members, often listed by specialty; you may contact those associations for suggestions.

To find local bar associations in your state, see the ABA’s State and Local Bar Association Directory.

In addition, many trial lawyers take WC cases, and the American Association for Justice has a referral service for anyone who is considering suing another party in civil (not criminal) court. The Association has a CRPS litigation group whose members hold seminars to discuss strategies with CRPS cases and exchange medical information, so someone who is a member of this group may have a better understanding of your situation than someone who is not.

There are several sources of referrals specifically for WC cases.

  • The Workers Injury Law & Advocacy Group, a not-for-profit association of plaintiffs’ attorneys who represent workers, offers a referral service.
  • The California Applicants’ Attorneys Association, a not-for-profit association of lawyers who advocate for injured workers, also offers referrals to its members on its homepage.
  • The nonprofit Injured Workers Association of Utah offers referrals and information specific to Utah here.
  • Injured Workers of New York, Inc., a not-for-profit organization that sits on the New York State Workers’ Compensation Board’s Practices & Procedures Committee, helps injured workers in that state obtain the necessary medical, legal, and financial help.

One commercial website, a Lawyer Directory from LexisNexis, lets you search for a lawyer by specialty, including employment law. The site gives you information about the firm’s size and whether or not the firm offers a free initial (or first) consultation. (Remember that the order in which the lawyers are listed on some websites may be due to fees the lawyers have paid to the site.)

You can also find an attorney through the listings in the business pages of your local phone book under the subject area “lawyers” or “attorneys.” Still, remember that it is often better to find a lawyer—like any other professional you may hire—on the basis of a personal recommendation from someone you trust who knows the attorney’s skills and abilities.

If you do not have much income, LawHelp may help you find a free or low-cost legal aid program to help with a variety of issues, including employment issues. (Keep in mind that legal aid programs typically focus more on issues such as housing, bankruptcy, and disability.) You may also find a legal aid clinic in the phone book or through a bar association. Some bar associations may be able to refer you to lawyers who may help you for reduced fees if your income is limited.

Choosing a Lawyer

If you decide that you definitely need an attorney—whether for a WC case or other issue—it is generally a good idea to speak with a few lawyers before deciding which lawyer to hire or to retain. You may want to have a friend or family member—someone whose opinion you value—come to the meeting with you. Then asking the lawyers questions, such as those below, may help you make a good choice.

  • What do you charge, if anything, for the first or initial consultation?
  • Do you accept workers’ compensation cases on a contingency* basis?
  • What do you expect the fee for your services to be?
  • What do you estimate your expenses will be?
  • How long have you been practicing law?
  • What experience and credentials do you have in workers’ compensation law?
  • How much do you know about CRPS?
  • Have you attended any relevant seminars or courses?
  • How many similar cases have you had and how successful have you been?
  • What do you think my chances of success are?
  • How long do you think it will take to resolve my case?
  • What paralegals or other lawyers, if any, will work with you on my case, and who will be my primary contact?
  • Do you have malpractice insurance?
  • Can I review your attorney-client contract that I would be expected to sign? (It is a good idea to take it home with you to review carefully before signing.)

You may also want to call the Better Business Bureau to see if any complaints have been filed against the attorneys you are considering. The lawyers’ associations and some states also keep a record of attorneys against whom complaints have been filed or legal action has been taken, but these lists vary by state. If you still are not sure about your choice of attorneys, ask for a follow-up meeting if that will help. Make sure you feel comfortable with your decision before you agree to hire anyone.

Having Co-Counsel on Your Case

You may end up with more than one attorney, especially if your case is complicated. If your lawyer needs the expertise of another lawyer, your lawyer will arrange for the other lawyer (the co-counsel) to help with the case. Sometimes the co-counsel is a prominent expert in one aspect of your case but is not licensed to practice law in your state; thus he/she works with your attorney who is licensed to practice law in your state.

Changing Lawyers

If you become unhappy with your attorney, you do not have to have that person continue to represent you. You may simply inform the lawyer, in writing if required (or preferred), that you wish to hire other legal counsel. (In some states you must complete forms about your change in attorneys; ask the state’s WC agency for details.) However, make sure that you know the status of your case, including all upcoming deadlines, and that you are aware of any consequences from firing your lawyer. In addition, you should expect to pay for the services provided up to that point and for the time that it will take for the next attorney to become familiar with your case. Generally, your legal file belongs to you.

Two other resources on WC cases are the RSDSA Review articles How to Lose Your Case in 12 Easy Steps and Workers’ Compensation 101: An Overview of WC for Employees With Work-related CRPS, both by R. Steven Shisler, Esq.

Updated April 2021

The Horror of Being the Parent of a Child in Daily Screaming Pain

Originally written by Dr. Katinka van der Merwe on The Spero Clinic blog. Reposted with permission for the RSDSA blog.

To Parents of Children with CRPS –

I want to acknowledge one of the groups of people affected by CRPS the most—: parents of children with CRPS. It doesn’t matter if your baby is two years old or fifty-three. As a mother myself, I think the only pain worse than CRPS is watching your child suffer from it.

My phone calls with you, brave parents, both horrify me and inspire me. You tell me stories of endless suffering. Stories of your daughter missing her prom, and of your son never being able to walk on to a baseball field. Stories of your children crawling instead of walking, and of their days in bed, as you watch their friends play sports, go to school, date, and move on to college. At night you worry about their future. Will they find love, careers, and have babies? Who will watch over them when you are gone?  Your lives are not understood well except by other CRPS parents. Your misery is an island, unfathomable by most.

How can anyone understand what it feels like to watch your child burn alive every day?

You give me your children’s medical history in a matter-of-fact way with military precision, which tells me you’ve done it a hundred times before. You don’t want my pity. You’ve put up a wall that rejects pity like a dam wall holds in water, for if this wall should crack, your sorrow may drown you. You cannot afford to drown. You are fighting for your child, and you can’t, won’t, give up. You will spend every penny you have fighting, because this is your baby. You were charged with protecting them.

My God, do I admire you. You did not choose this, I know, but you are surviving it day by difficult day. You are the pillar that your child leans against, and you stand strong so they can do so. I admire every part of what you do with every part of me. You are the reason I know that this is the most important thing I will ever do in my career.

As a parent, I cannot imagine a more horrific hand to be dealt by life than to be forced to stand by helplessly while your child suffers from daily, unimaginable pain. Please allow me to say that my heart goes out to you. I cannot imagine anything more difficult. As a parent, we want only what is best for our children. It is our job to protect them. We do everything in our power to make sure that our children are safe, happy and protected. However, sometimes, life will present them with circumstances beyond our control and our sheer willpower. CRPS is one of those circumstances.

As a parent of a child who suffers daily, you have only one true choice: You must become an asset to your child.

This will require incredible strength and willpower, sometimes under very difficult circumstances. While it is normal to want to scream at the heavens “‘why?!”’ at the top of your lungs, it won’t ultimately change a thing. CRPS cannot be kissed away by a parent’s love.

However, by becoming steadfast and informed, you will be a strong pillar for your child that they may hold on to during the worst of storms.

CRPS RSDSA

While your child will need to cry on your shoulder sometimes, you cannot allow yourself to collapse into a puddle of pity at those times. Your child needs to feel secure in a world that is made very insecure by the very nature of CRPS.  They will look to you for strength when they are in pain, doubtful, in a state of self- pity, angry, and scared. You will be their constant port in a storm they cannot control. Yes, love them always. Cradle them always.

However, you must understand that your child needs you to fight for them. They need for you to be strong when they can’t be. While it is important to be able to be honest with your child, you need to hold on to your strength so that your child never has to see you fall apart. 

Children who deal with daily chronic pain feel acute guilt because of the effect that their condition has on the entire family. It is very important that you tell your child that even though they are not physically perfect as far as their health is concerned, that this does not change how much their sheer existence contributes to your life, as well as that of the rest of the family. They have to know that they still matter in many meaningful ways. This is where counseling becomes incredibly valuable, not only for them, but also for your marriage or relationship, as well as your relationship with your child’s siblings. While your family will face more obstacles than most, these obstacles can be overcome and at the end of the day, leave your family stronger than before.

I know you can do this. Do you know why? Your child chose you. They were born into this world through you. Their souls saw strength in you that therefore must exist.

They picked you to be their parent, and in that choice bestowed an incredible privilege upon you.

 

“Your children are not your children. They are the sons and daughters of Life’s longing for itself. They come through you but not from you. And though they are with you, yet they belong not to you.”

—Kahlil Gibran

Please consider making a donation to RSDSA today!

Ask the Doctor: CRPS and Sleep Disorders

Written by R. Norman Harden, MD for the RSDSA blog.

We get many queries from our members looking for information. We asked R. Norman Harden, MD, Clinical Co-chair of the RSDSA Scientific Advisory Committee, to comment on some of them. Dr. Harden would like to emphasize that the comments that follow are based solely on clinical observations since there have been no epidemiologic studies conducted on these topics.

Are sleep disorders common in people who have CRPS?
Yes, I would say that at least 75% of people with CRPS, possibly as many as 90%, have some sort of sleep disorder. Pain is, of course, the main culprit for those who have difficulty falling asleep and for those who have difficulty staying asleep. At bedtime, the mind starts to relax, and since there are no distractions the mind naturally focuses on pain. Early morning awakening may occur if a person rolls onto the affected limb and is awakened by pain.

Treating the sleep disorder is critical, not only because people who sleep well feel better, have more energy, and are in a better mood, but sleep is critical to the body’s recuperation, repair and healing, especially with chronic disease. Repair and some parts of the recuperation process occur only during sleep; for instance, 90% of Somatamedin C, a hormone that is critical in maintaining nerve and muscle health, is produced in deepest stages of sleep. If you don’t make Somatamedin C, you are not going to repair tissues from normal wear and tear, which in turn causes more pain. It is a vicious circle. People in chronic pain don’t get into these deep stages of sleep so essential to healing, and Somatomedin C is only one example of critical neuroendocrine products produced during sleep.

We treat sleep disorders very aggressively. and try to use agents that hit “2 or 3 birds with one stone.” For example, some of the antidepressant drugs (such as nortriptaline or doxepine) are actually great analgesics. The brain stem (where you produce several critical neurochemicals such as serotonin and norepinephrine. coordinates pain, sleep, and mood. These “antidepresseant agents” modulate serotonin and norepinephrine, critically important for quality and quantity of sleep, normal mood and pain modulation. Since you only have to take these agents once a day you can use them as anti-insomnia agents as well as analgesics to help initiate sleep, prolong it, improve the quality of sleep, and relieve the pain.

The Stages of Sleep 
There are five stages of sleep that cycle over and over again during a single night: stages 1, 2, 3, 4 and REM (rapid eye movement).Stages 1 through 4 are also known as non-rapid eye movement sleep (NREM). Approximately 50% of our sleeping time is spent in stage 2 and 20% in REM. A complete sleep cycle, from the beginning of stage 1 to the end of REM, usually takes about 90 minutes. An adult normally sleeps more than 2 hours a night in REM.

Stage 1: a light sleep during which the muscles begin to relax and a person can be easily awakened.

Stage 2: brain activity slows down and eye movement stops.

Stages 3 and 4: deep sleep, during which all eye and muscle movement ceases. It can be difficult to wake a person during deep sleep. Stage 3 is characterized by very slow brain waves (delta waves), interspersed with small, quick waves. In stage 4, the brain waves are all delta waves.

REM: It is during REM sleep that people dream. The muscles of the body stiffen, the eyes move, the heart rate increases, breathing becomes more rapid and irregular, and the blood pressure rises.

New Ways to Give to RSDSA

The team here at RSDSA is appreciative of the contributions provided to us as we work to fulfill our mission.

Since we are here to meet the changing needs of the CRPS/RSD community, we also want to inform our community of the ever changing ways you can help fundraise and donate to our organization. Here are a few ways you can donate to RSDSA so we can continue to provide support, education, and hope to all affected by the pain and disability of CRPS/RSD, while we drive research to develop better treatments and a cure.

Donating Funds From an IRA

Money that you have in an individual retirement account (IRA) can be donated to RSDSA. Additionally, if you have reached an age where you need to take required minimum distributions from your traditional IRA(s), you can avoid paying taxes on them by donating that money to charity.

You can also donate a “qualified charitable distribution” aka money you send directly to a charity from your pretax retirement account.

Learn more via Investopedia, US News, and Forbes.

 

Create Facebook Fundraisers

Since RSDSA is a designated non-profit on Facebook, users often create fundraisers on our behalf throughout the year, especially on their birthdays or other important dates/holidays.

Learn more about creating Facebook Fundraisers at facebook.com/fundraisers

 

Ask Your Instagram Followers to Donate to RSDSA

Instagram now allows users to launch fundraisers from their profiles!

When posting a photo or video to your feed, you’ll now see an “Add Fundraiser” option under the space where you write your caption. Once you select that option, you’ll be taken to another page where you can search for “RSDSA” and add our donation information to your post.

Additionally, a line stating that you are raising money for RSDSA will show on your profile for 30 days. Learn more here.

 

Post About Donating to RSDSA in Your Story

It is also easier than ever to ask your Instagram followers to donate to RSDSA via an Instagram Story sticker. Simply follow the instructions found here to add the sticker to your Story today!

Learn even more about donating to RSDSA at rsds.org/donate.

Chiropractors and Philosophy: A Perfect Match

Blonde woman wearing a white shirt

Written by Dr. Katinka van der Merwe for the RSDSA blog.

Few topics I have discussed in my career have drawn more attention, more praise, and also more criticism than the following one: the medical fallacy of treating chronic pain.

I have treated approximately 560 patients suffering from CRPS as well as Ehlers Danlos Syndrome, and often see success where medical science has failed. These patients have been everywhere in the world, to the most renowned clinics, such as the Cleveland Clinic, CHOPE, and the Mayo Clinic, and yet they have not been able to find answers.

I now consider myself as somewhat of an expert on the topic. I have certainly devoted my life to giving hope to those who feel like they have reached the end of all hope. Allow me to elaborate. First, I need to explain how my growing years shaped my unique approach to chronic pain. I was raised by a chiropractic father whose life was saved by a chiropractor when he was seven years old. Because of his own healing journey, his philosophy in the body’s ability to heal itself was very strong. This philosophy, the deep belief that the body is able to heal from within, even in the face of defying odds, form the very core of chiropractic philosophy.  Yet, I often find that people are surprised by the fact that I am a chiropractor.

The fact is, me being a chiropractor is a big reason why we are succeeding where so many others have failed. How is that possible? How can someone who “pops necks and backs” help someone suffering from complicated and horrific neurologic pain? Like I mentioned above, the answer lies in the philosophy that most chiropractors are schooled in. This philosophy is diametrically opposed to allopathic medicine’s philosophy. Medicine believes that the body fails. Chiropractic believes that the body never fails, it was built to survive. Medicine believes that the body must be healed by science, from the outside in. Chiropractic believes that healing occurs from inside out, if the body is assisted to function properly again.

Chiropractic philosophy has taught me to understand the human body and respect the body’s ability to heal, even in the face of the greatest odds. However, my purpose is not to bash or to even minimize medicine, and I want to make that clear. Medicine has a very clear and concise place in health care, but it is my belief and philosophy that medicine best serves us when it is utilized in emergency care, not chronic pain. If you need a new heart, if you need emergency surgery, if you are in a car accident, if you have suffered a fracture, medicine will typically serve us well. My niece, who is thirteen now, had open heart surgery when she was just three weeks old and weighed less than five pounds. She would not have had the ability to be alive today if it were not for the surgeons who worked on her and the science that got them to where they are. I am forever grateful for the surgeons and medical science that saved her life. However, when it comes to conditions where daily chronic pain is your reality, I am here to tell you today that the medical world is not the best place for you to find answers. This may go against everything you have been taught.

So, let me explain further: Chiropractic philosophy is all about how our bodies were masterfully designed. If you ask any member of the public, they will tell you that chiropractors treat neck and back pain. And it is true, a lot of chiropractors do that. But what really makes our profession distinct is the belief that the body was designed to heal itself if the central nervous system and the brain are allowed to do their jobs. We believe that the body is most often capable of healing even the most catastrophic injuries and conditions.

So, let’s talk about the medical approach or what I call the medical fallacy, when it comes to chronic pain. If you suffer from chronic pain, you have seen dozens, if not hundreds of doctors. You have often been to some of the best clinics in the world and you have been offered the standard choices, which are opioids, pain management, Ketamine, Neridronate, or spinal cord stimulators. The medical philosophy is very clear on how we heal or do not heal. Medicine believes that the body makes mistakes. It is not perfect, it is flawed. It is implied that science is more intelligent than your innate intelligence.

What is innate intelligence? Every living creature has an inborn intelligence that was there the moment you were created.  No matter what your beliefs are or what your religion is, or if you do not believe – you have to know that a very intelligent force was there the moment you were formed from an egg and sperm cell, which quickly grew within nine months into a tiny human being with two eyes, a heart, and hair and nails that grow, and the ability to heal itself. When we suffer a cut, we do not doubt that our body can heal that cut. (And yet, we believe that CRPS is too monstrous to heal). The intelligence that governed this process is magnificent. However, medicine teaches that science makes the body better, that it needs help from the outside, that your immune system is not strong enough. It needs science to boost it. Modern medicine gives us the message that pain is a mistake to be numbed or suppressed, that we are not supposed to feel pain. Medicine also will also have us believe that your diagnosis is crucial. It is crucial because it determines how the medical world should intervene chemically or surgically to fix your body from the outside in.

Worldwide, 1.5 billion people suffer from chronic pain. 1.5 billion people – wrap your mind around that. One study analyzed 95 suicide notes from random people and found that 67 of those notes listed chronic pain as the reason for choosing suicide. The USA uses more than 50% of the world’s prescription drugs today. Every day, 130 Americans die from prescription overdose. Nearly 70% of those prescription overdoses involve opioids. Opioids do provide relief by blocking pain, but the body will reach the point where it reacts to the pharmaceutical intervention, to the chemicals we are loading into it every day, by increasing the number of receptors to try to get the pain signal noticed again.  Your body is crying out, like a baby that is crying for attention because it has a wet diaper or because it is hungry or uncomfortable. It is crying out because it needs attention, it needs help. When you take painkillers, it is as if you have a fire alarm that is going off, but the noise of it is unbearable. And so, you take a wet towel and you put it over the fire alarm so that you cannot hear it anymore. Somewhere, the fire is raging. Your body is trying to communicate something to you. Pain is also a signal to the brain and the nervous system that a body part needs attention, it needs healing.

When the drug that you are taking wears off, a person will experience more pain for about three days afterwards. And if they continue to take opioids, the pills become less and less effective over time. I have noticed that many of my patients have actually reported this in practice.  In 1997, Americans took about two and a half billion prescriptions every year. In 2016, that number increased to four and a half billion prescriptions. What that means is that the total number of prescriptions filled by all Americans, including adults and children, have increased by 85 percent over two decades, while the total U.S. population has increased by only 21 percent. Wrap your mind around those numbers. What is going on? If you turn your television on, if you go to your doctor, you are going to see ads for medications. As Americans, we now believe that we cannot gracefully or naturally age without taking one, two, three, four prescription medications.  That is considered normal in the USA.  The truth is, there is no medication without side effects. It does not exist.

Ketamine is often considered to be a miracle drug for conditions like CRPS. The need for it is understandable, but yet, the journal Addiction noted that long term use of ketamine exposes patients to ulcerative cystitis of the bladder. That literally means that it may cause damage of the bladder wall. Research has also revealed that recreational ketamine abuse damages the bladder irrevocably. In two studies, medical researchers showed that ketamine present in urine causes damage to epithelial lining of the bladder, allowing urine to penetrate into the underlying tissues, which causes inflammation and extreme pain in the bladder, which is something we see very commonly in our patient population – bladder issues, chronic urinary tract infections. The researchers also noted that people who use ketamine on a daily basis demonstrated neuro cognitive impairment, meaning it changes the way your brain thinks. It also showed that patients who took ketamine struggled with memory problems, also documented in a journal called Frontiersmen Psychology, which noted that long term ketamine use can specifically damage memory and understanding of geographical areas, even something as small as the layout of your own house, remembering where the bathroom is or where your bedroom is. It has been found that repeated use of ketamine produces chronic impairments to episodic memory.

I cannot neglect to mention spinal cord stimulators. Let’s look at some of the recognized side effects of spinal cord stimulators: Biologic complications include infection following the implantation, neurologic injury, epidural hematoma, skin erosion, epidural fibrosis, Dural puncture, pain, and allergic reactions to the device. The most significant biologic complication results from actually implanting the device into your body.  The leads are typically placed next to your spinal cord, and may cause significant scarring as a result.  In most cases, the scarring is so severe that the lead cannot safely be removed.

Medical devices comprise a 400-billion-dollar industry in the U.S. A worldwide investigation by the International Consortium of Investigative Journalists involving 250 journalists from 36 countries was published in 2018. Investigators interviewed patients, doctors, and whistleblowers. They studied millions of records and recall notices. They found 1.7 million injuries and 83,000 deaths were attributed to these devices. Spinal cord stimulators were among the chief culprits, having faced 50 recalls since 2005. The FDA, which is supposed to protect us, is using an outdated system where devices are rushed through after minimal studies and human trials. These devices were meant to be a last resort. Listen to that very closely. A last resort – meaning that they should not be mentioned to a chronic pain patient within the first six months of diagnosis or even the first year. This was meant to be used when all else failed, because they are dangerous. It should be brought onto the table after every other option has been exhausted. Instead, big money has been spent on lobbyists and physician promotion. Today, 160 spinal cord stimulators are being implanted every day in the U.S. alone.

Let’s get back to the amazing human body. You cannot mask symptoms. You cannot treat the body by dividing it into different parts, like a car engine. I knew at a young age that I wanted my life to matter and to make a difference to others. I knew that I had found my purpose when I treated my first Complex Regional Pain Syndrome patient, and he went into remission, not because I healed him, but because I helped his body to function correctly again. How was this possible? How do we support the body so that it can heal from within? While other professions are concerned with changing the environment to suit the weakened body, we are concerned with strengthening the body to suit the environment. When we treat a patient, our goal is not simply to get them out of pain. Our goal is to figure out why this patient started suffering from chronic pain in the first place. Where did it all go wrong? What started interfering with this magnificent body and its ability to thrive?

Our system is very focused on treating the body as a whole organism. I cannot say this enough. If you move through the medical world, you are sent from specialist to specialist. So, let’s say you have severe chronic pain in your spine, but you also have GI dysfunction. It is very rare in the medical world, in my opinion, for doctors to see that one symptom is connected to another, if it affects a separate system or organ. However, often, the same underlying problem is causing multiple seemingly unconnected symptoms. You must treat the body as a whole, where every single cell affects every single other cell. You have to find the root cause and support the body in healing from within. And to that end, you need a multidisciplinary center, all with the same goal:  Removing interference to healing and ultimately to strengthen the central nervous system.

Last but not least by any means, you also have to create a loving, healing environment for patients. I think one of the fallacies of medicine today is that it is isolating. It often treats the patient as just a body, and not as a human being sitting in front of the doctor who has stress at home, who has a certain diet that may be good or bad, who may be presenting with emotional stress and/or post-traumatic stress disorder from events that happened in the past.

 You have to know what motivates your patient. Do they have children? Do they have grandchildren they cannot hold anymore? Do they feel free when they are on the golf course, and that is where they feel that they are reconnecting with their soul? You have to deeply care about your patient. It is a science that has too often been forgotten in medicine (or chiropractic, for that matter). We are taught not to emotionally connect with our patients because it is too hard on the doctor. However, it is possible to have sympathy with the patient, even if you do not feel empathy with the patient, without destroying your own health and sanity. If you are a physician, you have to have this sympathy. You have to care about the patient in front of you. In our waiting room, we have opened our waiting areas so that our patients can support each other and celebrate each other’s successes.  I pick my staff for their passion, not for their skills.  Skills can be taught, compassion cannot.  Healing is an art. It takes time, it takes practice, and it takes love. It does not come from a device. It does not come out of a bottle.

I have one last quote I want to leave you with by Albert Camus. “In the depths of winter, I finally learned that within me, there lay an Invincible Summer.” Your body is incredible. It was magnificently designed. Please remember that. Hold on to your hope and know that you are not supposed to give up today. Look at your body in a different way. It is not failing you, it is doing its best to survive. Start looking for your own answers. Be your own best advocate and fight for yourself.

Please consider making a donation to RSDSA today!

How Art and Apps Helped My CRPS

Written by Deanna Hart for the RSDSA blog.

Woman wearing all black holding How and when did you develop CRPS/RSD?

I rolled my ankle while working in a high stress environment in September 2019.

What has daily life been like since your diagnosis?

For the first six months, I did not know if I would get better; it seemed to only get worse. I could hardly walk with my left foot as it felt like the tissues in my ankle and foot were tearing, my foot was rigid, often strangely discolored and had strange temperatures. It felt like I had muscle spasms tearing my ankle and foot apart from the inside, even while at rest. At high stress times, my past injuries and pains in other parts of my body also acted up with a vengeance, including knee problems and carpal tunnel, which was extra disabling to have all those things acting up at once.

What is one thing you wish those without CRPS/RSD could understand?

Those of us with CRPS need to be able to make life changes to bring our stress levels down permanently.

What advice would you give to newly diagnosed Warriors?

Consider all the chronic stressors in your life and have enough compassion for yourself to change your life to be low stress.

What activities or treatments have helped you find temporary or long term relief?

I was directed by William Rubine, MS, PT at OHSU Physical Therapy Services at South Waterfront in Portland, Oregon to use the Recognise Foot app (iOS and Android), which I highly recommend. This app shows you images of feet for you to identify as either left or right (there is a hand version of the app as well called Recognise Hand on iOS and Android). The app gets more advanced when you chose the abstract option, showing you abstracted images of feet. Using the app caused my pain symptoms to act up, but to a lesser and lesser degree as I continued building my tolerance. Within days it did not hurt to look at images of feet anymore and all my symptoms were disappearing. I was blown away!  

I realized I can get these benefits also by drawing my feet. Then I also painted my feet. It was fascinating because one foot I painted looked sickly like my foot did at its worst in real life (swollen, discolored, atrophied – corresponding to my CRPS affected foot) and the other foot looked instantly healthy and fit the first time. I kept painting layers and layers over the sickly foot until both painted feet looked healthy. I have had almost no symptoms of CRPS since. It seemed to clarify the image of my feet in my brain. Now I only have pain in my foot for passing moments when I experience stress. 

Anything else you would like to add?

While massage and physical therapy treatments and such feel good in the short run, try building your brain’s image of your body, no matter how disfigured the images you make are to start. Keep redrawing it. If you cannot draw or paint, or do not want to, use the Recognise apps. 

If you want to connect with me about using art to treat CRPS, you can email me at [email protected] or connect with me on Instagram!

Click here to view RSDSA’s list of practitioners who utilize graded motor imagery.

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Be kind to yourself. Don’t beat yourself up.

Recorded by Lisa Folsom for the RSDSA blog.

Listen in as Lisa details how a 2015 injury of her left pinky finger caused her CRPS, her diagnosis, education for friends and family, treatments, and much more.

 

Learn more about Lisa via her YouTube Channel and her Instagram.

If you’re interested in writing or recording your story for the RSDSA blog, please send us an email at [email protected]. Please consider making a donation to RSDSA today!

 

We’ve also included the full transcript of Lisa’s video:

Hi, everybody. My name is Lisa, and I am the 44-year-old wife to a wonderful and handsome husband, the mom to three pretty darn good kids that are now in their 20s and Noni to an absolutely adorable infant grandson. Life with CRPS began about five and a half years ago in May of 2015 when I fractured my left pinky finger, of all the smallest things you could possibly do, with the injury of what’s called a boilerplate injury. Now, if you’re like me, and about 98, 99% of other people, you have absolutely no idea what a boilerplate is. What it is, is a small disk that is located on the inside of your fingers over the middle joint of each one of your fingers. And it’s attached by two small ligaments to the bones on either side of it. So it’s located, like I said, in the middle joint, and it’s attached by two small ligaments to the other bones. What I did was I turned my pinky finger completely sideways, 90 degrees, and I tore the ligaments completely off the bone and it took a piece of the bone with it and caused a fracture.

Well, by September of that same year, 2015, I was still in pain, which shouldn’t have been that way because most fractures, you know, will heal within about six weeks. And the ER doctors had already tried immobilization, which of course, all our RSDSA folks know., immobilization is probably the worst thing you can do for CRPS patients. But of course, by September, I was still in pain, severe pain, and it was starting to hurt. It was starting to crawl up my wrist and forearm. And so I went to an orthopedist who told me there was no reason I should still be in pain. He took his X-ray and told me there was no nerve damage, there was no bone problems, there was nothing wrong with the bones. And so there were there, therefore, there was no reason I should still be in pain. And I absolutely hate those words. Because I’m pretty sure that every CRPS patient has heard them at some, you know, some time or another. But he sent me to an orthopedic hand surgeon who was just as baffled as the orthopedist was, and so I got shuffled back and forth between the two for quite some time before the orthopedist decided that, you know, maybe I had a compressed ulnar nerve.

Well, the ulnar nerve is the nerve that runs along the back of your arm, all the way up your shoulder, into your neck and into the brain. And if you’ve ever you know, hit your so called funny bone, You know exactly what your ulnar nerve is. So they did a surgery called the cubital tunnel release, and essentially widens the channel that the owner nerve sits in. And they figured that they had resolved the problem. Well, long story short, all they did was cause my CRPS to spread because it was a new injury, new surgery, new injury, and it caused my CRPS to spread all the way up the back of my arm into my shoulder and part of neck. So that continued with the burning and the crushing pain. And by January, you know my  husband, my poor husband, by that point, I was keeping him awake at night. I was no longer sleeping properly. I was thrashing around just trying to get comfortable. And by January that same by January of 2016. He was like you know what you are done. We’re taking you to pain management. And that’s it. So, I was fortunate in that, you know, in in sort of searching out Google Maps. I happen to pick out, pick the name out of the hat so to speak, of the one doctor in my town that was one of the leading doctors in the state for CRPS. It was phenomenal. It was like God had just opened the heavens and given me a blessing beyond belief that, you know, this doctor was positively the greatest in the state, you know, when it comes to this disease.

And so we went to see him and I gave him the down low on all of my symptoms, what I had been going through, the misdiagnosis I had received, which was thank, thank goodness, it had been my one and only misdiagnosis. And he essentially said, you, you have textbook RSD. And he handed me you know, this brochure that started detailing all the symptoms, and all the issues that come with this come with this disorder. And I was like, holy crap. I didn’t have any idea that this disorder existed, I hadn’t Googled any of my symptoms, because I know that Dr. Google is sometimes a dangerous thing. Um, and all I had done was just, you know, outline what I had been going through to him, and he handed me my diagnosis without, you know, without skipping a beat, you know, I had undergone all the testing, the MRIs, the laboratory testing, the clinical examinations, the EMG’s. You know, all and it took maybe a month or two before he had handed me my diagnosis. And that was by about February or March of 2016. And life, daily life since then has been, you know, sort of touch and go. I feel sometimes, like I’ve been at a treatment guinea pig because, you know, what works for one patient doesn’t always work for another CRPS patient and unfortunately, that’s just sort of the way it goes for us, you know. One treatment may not work for another. And so we had to sort of test out all the different treatments and all the different medications to see what would work for, what would work for me. And, of course, you know, when it comes to the home life, there’s no such thing as a schedule, because you never know how you’re gonna wake up. You don’t know, if you’re gonna wake up in a flare. You never know, if you’re gonna wake up stuck in bed. You never know how you’re gonna end up feeling that day. You may be full of energy and full of pep and you may be able to go run all your errands, and you may be able to do some of your housework, and get everything done and you may feel like Superman. But then the next day, you are just down for the count. So there’s no such thing as a schedule. And my husband is fully aware of this and he makes, he makes tentative plans. He pencils things in and hopefully we can do them,  but he knows that if I I can’t, then I can’t. And then we just, you know, sort of take a chill day at home and we watch TV or we play board games or we you know, just have a semi fun day at home as much as we can.

The one thing that I really wish that people who don’t have this disorder could understand would be you know, I just wish they could understand that, you know, there are some days that even [sigh]. There are some days when even our skin hurts, and that we don’t mean any offense when we say please don’t touch me. We’re not being distant. We’re not being snobby. We’re not being, how can I say this? We’re not mad at them in any way. We’re not being ugly to them. We just can’t deal with the human touch because allodynia and hyperesthesia are a thing and those are big fancy words for the fact that things that shouldn’t cause us pain, do. And our skin is way more sensitive to touch and to outside stimuli than the normal human being. I’ve often said that I can feel a mosquito land on my arm before she can bite me. Which is kind of a handy superpower to have, but it’s not always a happy thing. I can feel a single hair land, you know, and I kind of brag on it as being a superpower, but it’s not really the most fun superpower to have all the time. And so I just wish that, you know, sometimes people can understand that we don’t mean any harm when we say, “Please don’t hug me, please don’t touch me.” We just can’t handle it on that particular day. And I wish that they could understand that yes, CRPS is a physical disorder. It’s not a mental one. It is. It is a clinical, physical diagnosis that has been verified by multiple physicians across multiple disciplines. And it’s been documented since the Civil War. And there’s no, there’s no denying it at this point. You know, it’s real, and the pain is real. The McGill University pain scale has bumped up the pain level, from a 42 to a 46.5, which is more painful than the amputation of a finger or toe without anesthesia.

You know, I have and the one thing I missed, I failed to mention is that, you know, through subsequent injuries, you know, I have developed CRPS in all four of my limbs. I have had sprained toes, multiple sprained toes. I have dislocated another toe. I have sprained an entire foot. I have had surgery to get a spinal cord stimulator. And I have had a radio frequency ablation, to try and help with some of my back pain because I do have some spinal issues on top of everything else. Well, every single one of those procedures, surgeries, injuries, and all of that have caused my CRPS to spread to every single one of those sites. And so my case is absolutely no joke. And I truly wish that, you know, people without this disorder could understand that, you know, the pain associated with this disorder is just unreal.

When it comes to the advice that I would give newly diagnosed Warriors: Be patient with your doctors. You know, they’re not incompetent. At least most of them are not. It’s just that they have to find what works for you. You know, what works for me, may not work for you. So, please be patient. You’re not a guinea pig. They just need to find what will work for you specifically, you know, I have found for me in particular, that ketamine is a wonder drug. It is the best thing that has worked for my CRPS pain ever. You know. And so my doctors have given me you know, oral ketamine capsules to take, they’ve given me an intranasal spray, as well as most of the other traditional medicines that will work for that have been tried and true for CRPS like Gabapentin and Cymbalta, etc. Now, that may not work for you. It may be that you know only opioids will help you. You just have to go through your process and understand that you may have to do a little trial and error when it comes to your treatment regimen. And, you know, just be patient with your doctors, be patient with yourself, please. And be kind to yourself, don’t beat yourself up when it comes to your hard days. They’re gonna come. They’re not going to be easy, but they’re going to come. And even though you might feel useless on some days, you might cry, you might get depressed, but you know, be patient with yourself as much as you are with your doctors, as much as you are with your family. Be patient with yourself, be kind to yourself, be loving to yourself. And, you know, give yourself as much self care as you need. Do the hot baths, the hot water therapy. Do your physical therapy. Do everything that you can to help ease your pain and get back to what your normal might be.

For the Warriors that have been there for many, many, many years, help us help those of us who are who are still in our journey, still in the early stages of our journey early to mid stages of our journey, and to the newly diagnosed Warriors. We need guidance, you know from the long termers. We may not understand what the long term effects of the illness will have on our bodies. Whereas you might. I’m still five years maybe I’ll be six years in this May. I need guidance just as much as the newly diagnosed Warriors do. So you know, reach out to us help us to understand where we’re going to be 20 years from now. We need it. We need the help. We need the guidance. And we need the kindness and the love from those of you that are, you know 20, 25, 30 years in. Reach out to us and help us you know, help us get there and help us to help others.

When it comes to treatments, you know the only thing that I have found that helps me is physical therapy. Warm water therapy and meds. Those are the only things that have really helped me in the long term. I have tried epidurals. I have tried steroid injections, the Toradol injections, I have tried. As I said the radio frequency ablation for my lower back. I have tried well the spinal cord stimulator has done wonders. I will say even though the implant site has become an RSD site, when it comes to the pain relief in my limbs, the spinal cord stimulator is a technological wonder and it gives me so much relief that it’s unbelievable. And so I would highly recommend that to anyone who is finding their pain, unresponsive to meds, or other treatments. But like I said, physical physical therapy, warm water therapy, my stimulator and my meds. Those are the only things that have worked for me in particular, the injections don’t usually last very long for me the nerve blocks the sympathetic nerve blocks don’t usually last long for me. That’s not to say that they won’t work for others, that’s simply saying that they don’t work very well for me.

That’s just about it. I don’t have too much else to add other than to say you know, I want to help as many people as I can when it comes to this disease. And so I have started social media channels you can find me under the username @thespoonbunny. And I have you know, I have tried to include as much information there as I possibly can including some ways to help save energy around the house. Including you know, some some informational videos that outline symptoms and you know, how to you know, sort of recognize the signs and symptoms of CRPS and hopefully, I like to add a little humor, but I just want to help as many of you as I can, that’s all I can say. I enjoy it and you know, when it comes to just being there for others I feel like it’s my calling and you know, what else am I going to do when I’m you know, disabled and at home? I have like I said, a wonderful handsome husband who allows me to just be me and allows me to be home and not you know, have to deal with working or dealing with anything but healing myself. And so I will leave you with my normal sign off when it comes to my social media channels. Until next time, my friends this is The Spoon Bunny signing off. May your spoons be plenty and your troubles be few. Have a great day.