What Do You Mean Denied? I Can’t Do My Old Job!

Written by Jeffrey A. Rabin, Esq., for the RSDSA blog.

This is a common question from new clients. Often it is followed by: “The company has gone out of business anyway!” Unfortunately, this is often not meaningful in a Social Security Disability application.

Social Security is considered to be a “total disability” program and whether someone can work is determined by their age, education, work experience, and most important, their Residual Functional Capacity (RFC) determination – that is, what is the most that they can still do in a full time work setting despite their medical problems.

In the Regulations, Social Security has a 5 step analytical process called the “Sequential Evaluation Procedure” which is applied by every decision maker in the system.

The first step asks whether the Claimant is working – if they are not, the analysis goes to Step Two.

Step Two asks whether the medical evidence documents a “severe” impairment – one that at least minimally impacts on work function. For example, high blood pressure is a serious medical problem but does not impact on work function until there is severe end organ damage so it is usually a “non-severe”impairment for SSD purposes.

Assuming there is, then Step Three asks whether the medical proof indicates the medical condition “meets or equals” the Listings of Impairments. This is very severe medical criteria set out for many medical problems. If that is met, disability is awarded.

If not, then Step Four asks what is the Claimant’s RFC, and does that allow for performance of any of the “types of work” that were done in the last 15 years. That does not ask whether the old job is available or whether the Claimant would be hired. It simply asks, can the Claimant “function” at any of the types of jobs performed in the last 15 years. If yes, the case is denied. Therefore, at the outset of filing the application careful consideration needs to be made of all past work in the last 15 years.

If at Step Four it is determined that the Clamant can not perform past relevant work then at Step Five SSA asks: Considering the age, education, work skills and Residual Functional Capacity, are there other jobs this person could do on a full time basis in the national economy? If yes, the application is denied. If no, the benefits will be paid.

The state agencies hire vocational experts at the initial and reconsideration level to give reports on the kinds of jobs a Claimant could perform considering their medical limitations . At hearings many Judges hire vocational experts to testify as to the existence of other jobs the Claimant can perform given their RFC and the other factors. This testimony, and the cross-examination of these “experts” often decide whether an application will be approved.

Social Security has some guidelines that help – these are called the “Grid Regulations” and they guide decision makers in the application of RFC, age and education issues.

For example, if an ALJ finds that a Claimant older than 55 cannot perform past relevant work, has no transferable skills, less than a GED education, and has a RFC for light work, that person is disabled under the Grid. However, if that same person has a high school degree and can perform light work, their application is denied.

If you change the facts to state that at most this person can do is sedentary work then benefits are awarded. But, if that same person has transferable skills to other sedentary jobs then the application is denied.

The point of these examples is to show that these determinations are complex and that simply the inability to do past work does not mean that benefit will be awarded.

Want to learn more? Our in-service sessions on Social Security Disability benefits usually qualify for Free CEU credits for staff that attend. Give us a call and get on our calendar for a free in-service at your location, or on Zoom, soon.

Prepared by Jeffrey Rabin, Esq.
Jeffrey A. Rabin & Associates, Ltd.
2604 Dempster St. Suite 508
Park Ridge, IL 60068
847-299-0008
[email protected]

Sending Condolences to the Family of R. Steven Shisler, Esq.

It is with deep sadness that we share the news of the passing of RSDSA board member, R. Steven Shisler, Esq. His unexpected departure has left us all in a state of profound sorrow and loss.

Steve Shisler’s loss will be felt keenly throughout the entire CRPS community. He was a fierce & compassionate defender of those who suffer from this debilitating syndrome. Unfortunately, he knew all-too-well the havoc CRPS can wreak on a body and a spirit, having dealt with its ravages himself as the result of a motorcycle accident many years ago.

While the CRPS community at large marks his passing, we at RSDSA are especially saddened. He served on our Board in several different capacities throughout his long tenure here.

He always provided ad hoc legal advice, and in recent years, functioned as the Board Secretary. Instead of a more traditional and formal roll call, Steve often began meetings with greeting each member by name as he recorded the Minutes.

More importantly, however, we could always rely on Steve to transform our divergent opinions into one cogent voice which enabled us to advocate successfully for our members. His was the voice of reason and the heart of understanding to which we all aspired. He will be sorely missed.

Learn more about Steven via the Wilde Funeral Home website.

Complex Regional Pain Syndrome: Practical Diagnostic and Treatment Guidelines, 5th Edition 

Originally published on June 10, 2022

This is the fifth edition of the Diagnostic and Treatment Guidelines for Complex Regional Pain Syndrome (CRPS; also known as Reflex Sympathetic Dystrophy [RSD], causalgia). These guidelines have been sponsored by the Reflex Sympathetic Dystrophy Syndrome Association and are written by expert practitioners in each discipline that is traditionally utilized in the treatment of CRPS [1]. There is a fairly recent, excellent, rigorous systematic review of the treatment literature in CRPS [2] which confirmed there is only modest high-quality research in the area. Nonetheless, in this “evidence vacuum” we still have a responsibility to treat. Certainly, we must develop better evidence, but our patients cannot wait for that. Thus, although the authors of these practical guidelines all utilized a systematic approach to reviewing the available and relevant literature, they have also included less rigorous, preliminary research reports, often supplemented by extensive empirical experience. The authors perforce must also extrapolate from “related conditions” (e.g., neuropathy [3]). The research quality, clinical relevance and “state of the art” of diagnostic criteria or treatment modalities are discussed, sometimes in considerable detail. Where there have been no discernable updates in areas since the 4th edition, text from that has been kept, sometimes verbatim.

These guidelines are intended to serve as an aid to the informed practitioner. They are not intended to replace or supplant the clinician’s best judgment, experience, training and/or a careful consideration of the clinical context. Although every reasonable attempt has been made to minimize the bias of the authors, it must be recalled that, in context, all the experts are to a degree biased to “their” therapeutic approach.

Detailed sections are provided as a guide and informational source not only to the “expert” in CRPS therapy but also the primary practitioner who is interested. Levels of evidence are mentioned when appropriate (Table 1), so that the practitioner can better assess the modality under discussion and, if desired, to personally review the citations in detail. In the humanitarian spirit of making the most of all current thinking in the area, balanced by a careful case by case analysis of the risk/cost versus benefit analysis, we offer these “practical” guidelines.

View the full article here.

“PEOPLE Magazine” Focuses on a Tragic Injustice Experienced by a Family Living With CRPS

In a recent article by PEOPLE Magazine, Maya Kowalski shares how her CRPS diagnosis was classified as Munchausen syndrome by proxy, a mental disorder in which a caretaker of a child either makes up fake symptoms or causes real symptoms to make it appear that the child is injured or ill.

RSDSA is working with other rare disease organizations to quantify how many rare disease families have been accused of medical child abuse.

If you want to share your story, please email us at [email protected].

How To Lose Your Case In 12 Easy Steps

Written by R. Steven Shisler, Esq. for the RSDSA blog.

Frequently, I receive telephone calls from potential clients who have, frankly, severely damaged their ongoing claims or lawsuits. When you pursue legal claims, whether they involve social security, workers’ compensation, medical malpractice, or other types of personal injury claims, remember that these common mistakes could lose your case.

1. Do it Yourself
Representing yourself is definitely not advisable because you don’t have the knowledge, skills or the experience of a practicing attorney who specializes in medical claims. This is especially true for social security and workers’ compensation matters. Many claimants think they will receive benefits by simply completing application forms. To be successful, retain counsel before you begin the application process.

2. Delay or Fail to Take Action
I had a client who sought representation for a workers’ compensation claim. Although he had been receiving workers’ compensation for a job- related injury that had occurred 11 years earlier, His employer’s insurance carrier wanted to revoke the client’s benefits. Unfortunately, when the accident happened, the client was afraid he would lose his job if he sued his employer.

Unfortunately, he discovered, too late, that his best opportunity for compensation would have been a products liability claim against the manufacturer of the defective machine that had caused his injury.

The products liability claim would have been worth hundreds of thousands of dollars. His workers’ compensation claim amounted to a relatively small sum.

3. Retain the Wrong Attorney
The best way to find an attorney is to ask people you know. Good attorneys get most of their clients by word of mouth, as opposed to those who advertise on television or in the Yellow Pages. A general practitioner probably lacks the knowledge to handle cases involving CRPS that involve highly specialized areas of the law.

Hire an attorney who comes highly recommended from a source you trust, and then research his (or her) background. Do not be afraid to ask the attorney about his level of experience with your type of case. Ask for names and telephone numbers of references. Find out his success rate. Look him up in the Martindale Hubbel law directory or other directories of attorneys.

Trust your instincts; first impressions are critical. If the attorney does not impress you at the first meeting, what kind of impression do you think he is going to make on a judge or jury? Additionally, never be reluctant to fire your attorney if you lose confidence in him, but find new counsel first so there is no gap in representation.

4. Hire and Fire Multiple Counsel
Most attorneys will not be concerned if you want to fire your current counsel and hire a new one, unless you have gone through three or four attorneys. This shows the attorney that you are most likely the problem.

5. Be Cheap
You get what you pay for. If the case needs specialized knowledge, the fee will be higher. For an attorney to handle an CRPS case, he must have knowledge of the particular area of the law involved, knowledge of medicine generally, and knowledge of CRPS in particular. Medical malpractice cases and product liability cases are particularly complex and involve a great deal of work as well as specialized knowledge. Ask what the customary fee is for your type of case.

In Philadelphia, the standard fee for a medical malpractice, products liability, or personal injury case is a 40% contingent fee. If you win, the attorney gets 40% of the gross recovery. If you lose, you pay nothing. In Pennsylvania, the maximum fee for a workers’ compensation case is 20% and or a social security disability case, 25% of any past due benefits with a maximum fee of $4,000.

6. Treat with Multiple Medical Providers
One of the biggest problems with CRPS cases is the damage that is done when the client jumps from doctor to doctor in that pain driven, panic-stricken search for the miraculous cure. If you have CRPS, you have a horrible condition that is likely to be permanent. Your goal should be to reduce your pain and improve the quality of your life .Going from doctor to doctor creates a number of problems. The defense can argue that you really do not have a case, but simply changed doctors until you found one who would report what you wanted. You might be portrayed, for example, as being emotionally unbalanced. To insurance claims representatives companies, voluminous records from many medical providers raises a flag.

Multiple medical providers may result in duplications of treatment that negatively influence juries and judges, and increase your costs.

Medical experts charge substantial sums to testify and reimbursement of these expenses is deducted from your recovery.

If your insurance coverage has been exhausted or if there is an insurance subrogation lien, you may have to pay the doctors.

7. Fail to Communicate with Your Doctor
Tell the doctor when you have new symptoms and about your limitations. If you testify regarding certain complaints or limitations and these are not addressed in the medical records, your testimony lacks support. Do not be macho and omit complaints or symptoms in your discussions with your doctor.

8. Be a Motor Mouth
One of the most damaging things that clients do is talking too much to the wrong people. While it is important to communicate clearly to your doctors, other medical providers, and lawyers, talking too much to others is dangerous. Be alert all the time, and remember that all those “nice” people you talk to might be recording everything for their records.

9. Thinking About Your Actions on a “Good” Day
CRPS pain waxes and wanes. There are bad days, and then there are good days when the pain, although severe, is more bearable. The private investigator who may have you under surveillance will not document anything that supports your claim. Be especially careful on the good days, enjoy yourself, but be aware that if you are outside, you may be under surveillance. That videotape will be shown to a jury after you testify about your difficulty walking, reaching, using your injured hand, and so on.

10. Disregard Your Attorney’s Instructions
If you have chosen the right attorney, he has a great deal of knowledge and experience. If you do not trust his opinions and his instructions, then hire someone else.

If you really want to lose your case, disregard your attorney’s instructions and speak with insurance company representatives when they telephone you. Later you can tell your attorney that you only answered a few questions, and they were not damaging, in your opinion. That way, your attorney will be surprised when he receives a copy of your damaging statement. Better yet, communicate with the representative of the insurance company but never tell your lawyer about it.

11. Lie
A great way to lose your case is to lie. Lie or exaggerate to your doctor about your symptoms and complaints and your responses during his examination. That way the medical records will be contradictory and easy for the defense to challenge. Lying during the “independent” or defense medical examination is also a great way to lose your case. Then the defense doctor can testify that none of your symptoms made sense, that they did not follow neurological patterns, that you are exaggerating, or can otherwise damage your credibility.

You can destroy your case by lying to your attorney. A lie is especially effective if you completely change your story at trial from what you have previously represented in your pleadings, deposition, and medical records. There is never a reason to lie.

12. Don’t Do Your Homework
You win a case because you have the best lawyer, you are well prepared, you testify appropriately, and you have the best evidence. The case is always won in preparation, long before trial. Keep appointments with your doctors to provide evidence of consistent medical treatment without unusual gaps in treatment. Listen to your attorney’s instructions during preparation for defense medical examinations, depositions and hearings or trials. Do your “homework,” such as reviewing your medical treatment and other subjects.

Conclusion

Hopefully, by showing you how to lose your case, you will think about how you can win because the weakest part of the case is often the client. Be aware of your role and the impact of your choices and actions on the outcome of your case. Think, be selective, communicate about your injuries and your case  th only the appropriate people (your lawyer and your doctor). Be aware of the things you say and do in public. Take an active role in your case, follow instructions, and work closely with your attorney for that successful outcome.

R. Steven Shisler, Esquire is an attorney whose practiceconcentrates in plaintiffs’ medical malpractice, products liability and other personal injury matters involving nerve injuries and reflex sympathetic dystrophy. He is an RSD survivor.

If You Feel Pain, You’re Alive. If You Feel Other People’s Pain, You’re a Human Being.

Remarks by Sheryl Selena via the 2022 CRPS Awareness Month Awareness Resolution Passing in the Town of Brookhaven, NY

This past year, has been a very difficult one for me. I have been in undated with new symptoms and co-morbidities. Medical appointments and needed rest have occupied much of my time. As such, I have borrowed much of what I am going to speak about today from the internet.

CRPS is a rare disease, and patients are known as zebras thanks to Nobel Prize Nominee, Theodore E. Woodward and renowned University of Maryland, Baltimore researcher in the field of Medicine who is credited with the phrase, “When you hear hoof beats behind you, don’t expect to see a zebra.” This causes most medical providers to look for a common diagnosis for the symptoms they are given instead of the possibility of it being a rare case. That thought process can delay treatments.

We are also known as spoonies. Spoon Theory was coined by Christine Miserandino to describe how she felt having Lupus. It has been adopted by those of us with other chronic illnesses. The Idea behind this theory is that we all wake up with a certain amount of energy, represented by spoons. A person with chronic illness usually wakes up with less spoons. Some days you may have more spoons if you wake up on a good day. Each activity you do during the day requires a spoon to complete. A healthy person may only require one spoon to shower. The healthy person may even gain a spoon if the shower revitalizes them. A spoonie may lose two or more spoons by that same shower. Spoon theory shows how we must pace our days and prioritize what is most important to complete each day before we run out of our spoons for the day.

There is a meme that makes its way around the internet from time to time which more or less sums things up. It says, I’m not a morning person or a night owl. I’m some form of permanently exhausted pigeon.

As CRPS patients, we recognize Rare Disease Awareness in February and August, Neuropathy Awareness in May, Chronic Disease Awareness in July, Chronic Pain Awareness in September, Dysautonomia and Invisible Disabilities Awareness in October, and in November we recognize Color The World Orange Day and CRPS Awareness.

All of this awareness is terribly important, because it enables some of us to go into remission if treatment is started early. Some of us are still able to work with proper continued care, and some of us have had to become professional patients. We spend hours on the phone trying to coordinate care and seeing countless specialists, because, as I have said in years past, CRPS can spread.

While CRPS is a huge part of us we are still not just our diseases. We are strong. We are fighters. We are warriors. We have to be just to wake up and battle this disease every day. We have to be to raise awareness through large walks and conferences in person and online from our homes, beds, and wheelchairs, and even on a cot in front of Congress in Washington DC. We have to be to reach out to our elected officials all year long. We have to be to be here to thank you and the CRPS community for your support.

I’m going to leave you today with a quote from Leo Tolstoy. “If you feel pain, you’re alive. If you feel other people’s pain, you’re a human being.”

Be well, and stay human. Thank you.

Please consider making a donation to RSDSA today!

When I Close My Eyes

Written by Lexi Uslu via The Coalition Against Pediatric Pain

When I close my eyes, I grow wings and fly; I use my wings to fly towards the sky. I abandon my reality of chronic illness as I soar towards freedom. Tonight, I am safe in my bed – away from it all… Away from my dreaded wheelchair and even more, away from the pain of living a difficult life. I fly to unknown places, and I meet new people; I have places to be, and I have people to see. My adventure comes to an end with the sound of my alarm clock piercing through the silence. It is morning now and my eyes are open. The adventure is over although one thing remains the same. I have places to be, and I have people to see.

My mother helps me out of bed, and I fall into my wheelchair. This is the beginning of what I know will be a difficult day. I am ten years old, and my connective tissue disease is misdiagnosed as a psychological illness. Pain pierces holes everywhere in my body every single day and I am told that it is my fault. School begins in an hour and the time is 6:45. I don’t eat breakfast because my stomach hurts. I am wheeled towards the car and lifted into the front seat. I look into the side mirror of the passenger side to see my reflection, but I quickly look away as I don’t want to see the sad girl who is looking back. When we arrive at the school, I wait for my mother to get my wheelchair out of the car. She wheels it over t0 the passenger’s side and I hop in. She pushes me up the ramp and into the nurse’s office to meet my student aide (Mrs. Read). Mrs. Read takes me to the classroom and all the other children are already there. They look at me and I am reminded I am different from their stares. I begin to get dizzy, so I must go to my “special room.” I have been having fainting spells and seizures that are predicted by my dizziness. The school’s solution to this is to make a quiet space where I can go, and the nurse checks up on me there and not in the office with the hope that no other child might see me have a seizure and become frightened. I truly wish I could be there; more than anything I want to be home. I feel so sick, but my doctor’s say I am fine and that for my “psychological wellbeing” I must attend school. Today is a bad day and I ask to go home. My dad picks me up about ten minutes later and says to me “I don’t know why they expect you to go to school.” I look down at the ground in embarrassment and never again go home early.

I was forced to join a program for children with mental illness. Mental illness was very poorly understood in 2010 (and still unfortunately is…). Due to their lack of knowledge in the condition they misdiagnosed me with, they treated me very poorly, and after three months (thankfully) my insurance refused to pay for the hospitalization based on the fact that I was getting worse, not better. I was told word for word:

“This is not real, it’s all in your head.”
“If you tried harder you could control your seizures.”
“Why are you doing this to your family?”

The list goes on and on… During those six months, I experienced an overwhelming amount of physical and mental pain, but I never stopped living and I never surrendered my voice. My wheelchair wasn’t a cage; it was a speed bump. It slowed me down, but it didn’t stop me. I went on so many adventures and did so many things. My body was no longer reliable, and I was upset the doctors didn’t know what was wrong with me. I was upset instead of diagnosing me, they blamed something that really nobody can understand (especially at that time when mental illness was very much misunderstood). Life was miserable and hard, but every day, I challenged myself to find joy in my life. The sunshine in the blue sky, the birds who sing their beautiful melodies, laughter that rings through the air and smiles that can brighten the night… No matter how bad life gets, there are always these joyful things. No matter how sick, and no matter how sad, I have always at least attempted to find joy in some shape or form. Tragedy and illness are miserable; I know that well, but in my darkest days, I hide behind joy and small (but amazing) adventures.

One of my greatest adventures was the RSDSA fundraising walk in New York City. This adventure came at a horrible time in my life, but maybe that was the best thing about it. The walk gave me something to be excited about, and it was the perfect distraction to be able to fundraise from my wheels. Adventures are best with company, and for this adventure, I had plenty. We were the “Mothers Against Chronic Pain” and we had spent the past year preparing for this fundraiser. We had emailed all of our friends and family members. We stood outside of grocery stores and in busy parking lots; my wheels were not shy to the many miles bestowed upon them during our days of fundraising. The Mothers Against Chronic Pain was a friend group formed by parents from all over the country who connected through one commonality – all of their kids were sick and diagnosed with Complex Regional Pain Syndrome, aka CRPS/RSD. We raised money for a wonderful organization called RSDSA. RSDSA supports patients, families, and doctors associated with those who suffer from CRPS. I was first diagnosed with CRPS at the age of 7 and I have been delightfully involved with RSDSA since that time (I am now 22 years old). The Mothers (and others) against chronic pain were ready; we piled into our cars and we brought our walking shoes to NYC. My wheelchair had not stopped me from fundraising for this walk. That speed bump of a wheelchair barely slowed me down, and I raised over $3,000 (in the days before social media)). Now.. After raising all this money, I had one more job to do that was to complete the walk. The walk that I looked forward to for almost a year… Before I was in the wheelchair I had been determined to run, but that day, I brought my wheels. I completed the entire 3 mile walk by pushing my own wheelchair. I was determined that nobody would push my wheelchair besides me. Those wheels raced through those three miles. Something that I don’t tell very many people is that Prince Harry was at the walk and saw me struggling to push myself. His security guard went up to my mother and asked if he could push me. I took a breath as I was out of breath from racing my wheelchair and shouted. “Only I can do this!” Even at ten years old, I knew who Prince Harry was, but it didn’t mean a thing to me. What meant the world to me was completing that adventure on my own. When I finished the walk on that day, I was very proud of myself. I was proud not only because I had done something that even Prince Harry thought I couldn’t do, but more importantly, I made a difference. I raised $3,000 dollars to help people with the same chronic illness as me.

As I mentioned earlier, I loved my MACP family. This family consisted of moms and dads that were desperate to help not only their kids, but every child suffering in pain. Three years after the walk, the MACP family had grown beyond the original mothers and our name was changed to The Coalition Against Pediatric Pain (TCAPP). Although the name changed, the mission did not. Thirteen years later, our TCAPP family is still together. We are different now, but our mission remains the same… To help all children suffering from chronic pain.

As to my story… I was finally properly diagnosed with a disorder of the nervous system called Autonomic Failure. Finding this diagnosis took one new neurologist who took my blood pressure as I tried to stand and simultaneously fainted on the floor.

When I close my eyes, I grow wings and I fly. When I open my eyes, my wings, and my legs disappear one thing remains the same though… Life is to be lived and hope is to be had.

Please consider making a donation to RSDSA today!

FAQs – RSDSA’s Treating the Whole Person: Optimizing Wellness Conference – 2022

The RSDSA team is excited to have you join our third virtual conference from September 12th through September 15th, 2022 Below are a few FAQs to ensure you have an amazing experience!

Q. Is the conference free?

The conference is 100% free to join.

Q. When does registration close?

Registration does not close! You can register at bit.ly/rsdsa2022 anytime, even once the sessions have started.

Q. What time does the conference begin?

On Monday, September 12th, our first session begins at 12p noon Eastern / 9a Pacific due to our presenter’s time zone.

After that, the conference officially begins with networking and our expo hall at 6:30p Eastern / 3:30p Pacific each night. Sessions begin at 7p Eastern / 4p Pacific each night. On Monday,

Q. Which browser should I watch the conference on if I’m on a desktop or laptop?

Our 2022 platform, Airmeet, recommends using Google Chrome (version 79 or higher) on laptop or desktop. All versions of MS edge, Firefox (version 76 or higher), Brave, and Safari (with limited access & known compatibility issues) will also work with Airmeet.

Q. Can I watch the conference from a mobile device?

Yes! Airmeet does have iPhone and Android apps. Learn more about Airmeet on mobile here.

Q. Where can I find the event schedule?

The event schedule can be found on the registration page here.

Q. How does the networking feature work?

Airmeet’s networking feature aka the “lounge” allows you to have conversation with other CRPS Warriors, medical professionals, caregivers, support group leaders, and sponsors.

Once you enter the event, you will see tables for the lounge that correspond to your each of the 50 states (as well as Washington DC) or your ticket type. Feel free to join the table that you are most interested in so you can connect with other Warriors.

Once our sessions begin, the lounge will close, but it will reopen for 30 more minutes after our sessions end

Q. Can I watch the sessions later? Are they being recorded?

Each session will be recorded and you’ll be able to watch the presentations once we upload them to the RSDSA YouTube Channel here.

Q. What should I do if I have a question that is not listed here?

Comment below or send us an email at [email protected]!

Laura’s Path to Pain Relief

Written by Laura Low for the RSDSA blog. Submitted by Abbott, a sponsor of RSDSA.

In January 2018, my world was turned upside down after doctors told me I had a ganglion cyst on my foot. Prior to that, my life was adventurous and, in a word, awesome! As a wife, mother of twins and having a fun job of being a travel agent, things were going well.

Once I was diagnosed, my foot doctor insisted I have the cyst removed right away and schedule the procedure. After the surgery, I was in pain and was not healing well. I was left bed-bound, without being able to put any pressure on my foot. I could not wear a sock, shoe, or have my sheets touch me.

I had planned a trip to Disney for my twins’ 10th birthday and to run the Disney 5K through Magic Kingdom but had to cancel it and was heartbroken. Having to tell them I had to cancel their 10th birthday plans was horrible. My kids could see that I was broken, and, physically and mentally, I was.

I went to all types of special doctors to find out what could be done for me. After lots of appointments, I finally found out I had CRPS II, also known as post-surgical causalgia, following the cyst removal. I tried physical therapy, mental therapy, and mirror therapy. I was on so many medications, taking more than 20 tablets daily, I had to have a doctor help manage them for me.

The pain caused me to be a shell of who I was. I lost people I thought were friends, my kids accepted the fact that I was not their fun mom anymore, and, during all of this, I lost my job.

In June 2019, I had a spinal cord stimulator implanted. After recovering from the procedure, I was able to walk from my front door to my mailbox, which was HUGE for me. I felt like I was given a break. However, I still lived with the pain from CRPS and was not living my full life.

It wasn’t until two years later when I was at a follow up with my doctor for a steroid injection in my lower back that he mentioned dorsal root ganglion (DRG) stimulation. He told me it would be able to address a specific bundle of nerves in my spine which could give me more direct coverage1. I was willing to try anything that would offer me any type of relief.

This was especially important, because at the same time, my husband was preparing to donate a kidney to our brother-in-law. This life changing surgery had a large impact on our family, and I wanted to be able to distract my kids from everything that was going on.

When I was getting ready for the surgery, the medical team asked me my level of pain and what I hoped it to be after. I explained to them that it was more than just a number, it was about my quality of life. I wanted to be able to wear socks and shoes, walk around my block, have sand on my feet, and enjoy things I did before my pain started. These things are little to so many people and are taken for granted, but for me, they were everything.

After recovering from the surgery, I am happy to say that I have walked on the beach in Mexico, gone ziplining, and have had other fun adventures with my kids. I have felt my personality come back, but the best part is that my family feels that way too! My kids and my husband feel that their FUN mom is back!

When my husband was still in the hospital, I was able to take my kids to the zoo and walked around for five and a half miles. ME – the same person that three weeks before could not walk around a store, or the block, could now walk for hours and miles!

I can’t say that the DRG stimulator is going to work for everyone, but honestly, it really changed my life for the better. I wish, hope, and pray that anyone that tries it is as successful as I have been.

Learn more about DRG therapies and how to find a pain specialist near you.

If you think neurostimulation might be right for you, consult your doctor to discuss the risks and benefits. This story represents one patient’s experience with neurostimulation. While most patients experience at least some reduction in pain, the amount varies among individuals. The surgical placement and use of a neurostimulation system pose risks, which also vary by individual.

MAT-2208350 v1.0 2022

1Deer TR, Levy RM, Kramer J, et al. Dorsal root ganglion stimulation yielded higher treatment success rate for complex regional pain syndrome and causalgia at 3 and 12 months: a randomized comparative trial. Pain. 2017; 158(4):669-681. (n=152)

Surviving CRPS Through Peer Advocacy

CRPS Warrior Melissa Wardlaw joined Melissa Adams on the “I Am Not My Pain” podcast on an episode titled, “Surviving CRPS Through Peer Advocacy.”

Melissa was diagnosed with CRPS type 2 as a result of a non-paralyzing injury. She learned early the value of being her own advocate, but she also realized the tremendous gap in support, which is why this fierce warrior spends her time providing free peer counseling and advocating for CRPS and chronic illness awareness.

Listen to Melissa share incredible insight into CRPS as well as offer valuable advice for living with a chronic illness on Spotify and Apple.

If you are interested in online peer counseling with Melissa or if you live in the Metro Atlanta area and want to attend her in-person empowerment group for CRPS/RSD, chronic illness and pain, contact Melissa at [email protected].

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