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Category: Guest Blogger for RSDSA

Life Is Not a Contest. I LIVE at My Own Pace.

Written by Shawn Elaine Anderson for the RSDSA blog.


This photo is of me and my husband this past holiday at a restaurant. I don’t cook much anymore and we met a friend out for dinner, I was not feeling well, but I really wanted to go, so I mustered up the energy. We were meeting a friend who has no family in the area, so this was important. I can see the pain on my face a bit, like a forced smile, but you know what? I went, I had fun, and I am so glad that I challenged myself to get up and ready to go out that day, but I am a Warrior… so I did!

How and when did you develop CRPS/RSD?

I was in a really bad car accident in 2005 where I was hit near head on by a drunk driver three times the legal limit. I had a compound tibia-fibula fracture and compound Lisfranc fracture on my right leg and foot. In the fall of 2018, I had an incident with my hands and they both were very red and swollen. In January 2020, five full years now, I was first suspected to have RSD. My actual official diagnosis was April 24, 2020.

What has daily life been like since your diagnosis?

I had A LOT of pain the first two years after the car accident and swelling and bleeding from my scars up to two years later. I kept working full time for years. Eventually, I then developed full autonomic nervous system issues over the year and it became too hard for me to work and I quit full-time work at 51.

Since 2018 I have worked some part-time jobs here and there and was awarded full disability in 2022. I rebroke my ‘bad’ foot on January 31, 2024 and the last year has been tough. I’ve been staying the course of “use it or lose it” and staying as healthy as I can mentally and physically so I can get through these hurdles. I’m thankful to have the unwavering support of my husband (pictured).

I used to cook all the time. It really was a hobby of mine but my hands just don’t have the strength they used to have so I don’t do that as much anymore. We actually moved a year ago from Phoenix, AZ to Northern AZ as I just had to get to cooler temps due to my heat intolerance.

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

For the most part it is an invisible illness unless you see the breaks, casts, redness and or swelling… but it is invisible. No one wants this. I want for people who are not afflicted to understand that it is a serious issue and not just a functional disorder.

What advice would you give to newly diagnosed Warriors?

Always have faith in yourself no matter what. Gain support and advocacy from groups like RSDSA and others. Continue learning as new information seems to be available and being knowledgeable is key. You are still YOU. Yes, there will be challenges but always remember this is a beautiful life to live. And finally, it’s okay to isolate at times, but still find your tribe.

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

For anyone who has endured this for many years and you’re not in full remission, you get injured again, and then the pot gets stirred again, etc. you know you have to develop a thick skin to be able to set boundaries and communicate clearly with people.

This has gotten easier for me over the years, but overall it is still hard. I just view every day as a gift. I smile every day and find the goodness in all there is outside what may have been our prior normal life. We have no choice but to adapt.

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

Physical therapy and staying physically active in general is what helps in the long run. I am fortunate that I have not really needed many painkiller types of treatments. I am on Celebrex and have toggled between Lyrica and Gabapentin for nerve pain and they really seem to help. 

WRITING. Writing for me has been very therapeutic and helps me digest my thoughts and feelings about RSD and other co-morbidities. Counseling has been so key for me as well. Having a life coach (outside of a significant other, friend, or family member) to help you really look at things objectively and develop actionable plans for upcoming situations is great. Examples includes how to talk to family or friends about missing an event or what your needs are.

Spending time with my dogs is really important to me too. They are just such amazing creatures and give me such joy. I hope I am doing the same for them as well.

Anything else you would like to add?

Speaking of writing, check out my poem below to learn even more about my CRPS journey.

Connect with Shawn on Facebook and on LinkedIn. She also writes blogs for her and her husband’s music business on A432Life.com.

The Reality of Shawn’s Dis-Ease

When my bone is broke you see the cast
But you do not feel the pain that lasts

You don’t see agony, so hot and fierce
Like a miser I hide it in a tight coin purse

With great inflammation, skin shiny and tight
Nerves lose their sheaths in my mighty fight

The bone has healed, hopefully next is my soul
Yet my heart rate now is anything but slow

A woman blushes and glows, so I’m told
I sweat so much, hiding inside, once bold

Oh my dear Sun, I used to embrace as my own
Now there are days I wish you’d never shown

I’ve moved North and, yes, back to the snow
When sunny and sixties, still too hot I know

My skin dry and wrinkly, more so than most
But still to this LIFE, I pose a grand toast!

My bones I use and protect like fine crystal glass
Pain does not own me, I know it shall pass

I make the most of each day I’m alive and here
Trying to help others get through their fears!

Though my life took a one-eighty ‘bout face

Life is not a contest, I LIVE at my own pace

I Make NO excuses for a body that’s changed
I Just Embrace each day that I feel no Pain….

Every day I smile, on the outside I’m the same
I have nothing to prove… and I have ZERO shame

by: Shawn Elaine Anderson

Preparing to Talk With Legislators With a One-Pager

Written by Lisa Van Allen, Chair of the RSDSA Advocacy Committee, for the RSDSA blog.

Communicating directly with your legislator is the best way to promote change in the laws and policies affecting healthcare in the United States. When you meet with a legislator or staff member, preparation is important to assure your message is clearly and succinctly communicated. A “one-pager” is the best way to do this.

A “one pager” helps effectively deliver your message and facilitates a productive conversation on the issues of importance to you and your organization.

Meeting with a legislator or staff person in your local office or in the Capitol is a great way to share your CRPS story, information about your disease and/or organization, and problems that you and/or your organization face. We recommend creating a one pager to use as a tool during a meeting and to leave behind with the legislator or staffer at the end of the meeting.

A one pager is a brief fact sheet and should be one single page. When creating a one pager, present the information clearly and use concise bullet points.

Your one pager should include:

  • A brief statement on the organization you represent and what the organization does.
  • A brief summary of the problem that you are seeking help on. Use data and reference studies (when applicable) to support your position on the issue.
  • A brief summary of the solution to the problem, such as legislation, and what it will do for you and/or the pain community.
  • What your legislator can do to help, also known as the “Ask.” Example: Support the Protect Rare Act, HB 6094
  • Include a list of supporters such as a group of other organizations that support your position or piece of legislation, the co-sponsors of the legislation, and/or the other signers of the letter.
  • Include your contact information so that the legislator and staff person can contact you if they have any questions.

Creating your one-pager before your meeting with legislators is an excellent way to prepare and to create strong brief messages that will have an impact. 

Below you will see a sample one-pager on the PROTECT Rare Act. Do you have a one-pager that worked well in a meeting with a legislator? We’d love to hear about it! Contact the Advocacy committee at [email protected].

A New Pain Killer on the Market: The Good and the Not So Good on Journavx

by Pradeep Chopra, MD for the RSDSA blog. Edited for clarity.

There is a lot of discussion about the newest medicine on the market.

Suzetrigine, marketed under the brand name Journavx, is a novel non-opioid analgesic recently approved by the U.S. Food and Drug Administration (FDA) for the treatment of moderate-to-severe acute pain in adults. Developed by Vertex Pharmaceuticals, it represents the first new class of pain medication approved in over two decades. 

It works by blocking NaV1.8 channels. Pain is transmitted along nerves by the opening of NaV1.8 channels. Journavx blocks these sodium channels (NaV1.8) hence blocking pain transmission.

A few key points:

  • It affects only the nerves at the periphery (outside of the brain and spinal cord) like your arms, legs, etc. It does not cause addiction.
  • Unfortunately, Journavx is weaker than Vicodin in terms of controlling pain. It is more useful in acute post-operative pain and not in chronic pain. It failed treatment of low back pain.
  • Given its weak nature, it is unlikely to help CRPS.
  • CRPS is caused by central sensitization (aka pain triggered in the brain and spinal cord). Journavx does not act there. 

Clinical Efficacy

The efficacy of Journavx was demonstrated in two randomized, double-blind, placebo- and active-controlled trials involving patients undergoing abdominoplasty and bunionectomy surgeries. In both studies, participants receiving Journavx reported a statistically significant reduction in pain compared to those receiving a placebo. While Journavx did not outperform the opioid combination of hydrocodone and acetaminophen (Vicodin), it provided effective pain relief without the associated risks of opioid use. 

Benefits

  • Non-Opioid Alternative: Journavx offers a new option for acute pain management, addressing the need for effective treatments without the addiction potential inherent to opioids. 
  • Targeted Mechanism: By selectively inhibiting the NaV1.8 sodium channel, Journavx specifically modulates pain signals in peripheral neurons, potentially leading to fewer central nervous system side effects. 

Risks and Adverse Effects

In clinical trials, the most commonly reported adverse reactions among participants treated with Journavx included:

  • Itching
  • Muscle spasms
  • Elevated blood levels of creatine phosphokinase
  • Rash

Journavx is contraindicated for use with strong CYP3A inhibitors, and patients are advised to avoid consuming grapefruit products during treatment due to potential drug interactions. 

Considerations

While Journavx has shown promise in managing acute pain, its efficacy in chronic pain conditions remains under investigation. A Phase 2 study focusing on lumbosacral radiculopathy (lower back pain) did not demonstrate a significant benefit over placebo, highlighting the challenges in treating chronic pain and the need for further research. 

In summary, Journavx is not very impressive. It has a weak pain killing strength and is effective only in acute surgical pain and not for chronic pain. As with any medication, it is essential to weigh its benefits against potential risks and to consider individual patient needs when determining the most appropriate pain management strategy.

References

1. Oliver B, Devitt C, Park G, Razak A, Liu SM, Bergese SD. Drugs in Development to Manage Acute Pain. Drugs. 2025 Jan;85(1):11-19. doi: 10.1007/s40265-024-02118-0. Epub 2024 Nov 19. PMID: 39560856.

2. Hang Kong AY, Tan HS, Habib AS. VX-548 in the treatment of acute pain. Pain Manag. 2024 Sep;14(9):477-486. doi: 10.1080/17581869.2024.2421749. Epub 2024 Nov 18. PMID: 39552600; PMCID: PMC11721852.

Copyright 2025 Pradeep Chopra. All rights reserved.

Cultivating Relationships with Your Representatives

Written by Lisa Van Allen, Chair of the RSDSA Advocacy Committee, for the RSDSA blog.

Building relationships with your Members of Congress is important to ensuring that CRPS patients are heard on Capitol Hill and policymakers are working to improve the lives of patients living with pain.

Members of Congress are more responsive to their constituents and more likely to support a policy proposal when they hear directly from people who live in their district. You can find contact information for your House Representatives and Senators here.

To build a relationship with your Member of Congress, you can:

  • Schedule a meeting with your Member in your local District office or on Capitol Hill
  • Get to know the key staff who handle health care policy in the district and in Washington, DC
  • Invite your Member of Congress or their staff to special events held in your community
  • Attend events like town halls that your Member of Congress holds in the district and state
  • Volunteer for a candidate’s campaign activities
  • Engage with legislators on social media
  • Write letters or emails to your legislators
  • Write op-eds for your local newspapers
  • Send “thank you” messages (call, email, letter, social media) when your legislators support rare disease issues

When should I engage with my Representative and Senators?

Anytime and all the time! Start out slowly, with one or two different activities. As issues arise, engage with your legislators on those issues. Pay attention to the issues you care about most.

As a bill progresses through Congress (committee, House vote, Senate vote, conference committee, etc.), let your legislators know about your position on the issue. Don’t wait until it’s too late to voice your support or concerns on legislation you care about.

How do I connect with my legislator?

  • Find personal connections you have in common! As a constituent, you are from the same state and area as your legislator. You may even live in the same neighborhood, go to the same school, etc.
  • There may be local products, places or activities your legislator loves – when appropriate, reference them in your correspondence (I.e., Sen. Grassley is passionate about cancer prevention, and Rep. Ashley Hinson has two young sons involved in sports).
  • Research the issues that are important to your legislator (check out their website, newsletter, and press releases).
  • Research legislation that the legislator has supported previously (check out their website and press releases).

TIP – Staff are an amazing resource and Members of Congress rely on them to advise them on issues that affect their district and constituents

This information was adapted from the Everylife Foundation.

Advocacy Update | House Bill 6094 Protect Rare

PROTECT Rare Act – Providing Realistic Opportunity To Equal and Comparable Treatment for Rare Act

Over 7,000 rare diseases affect more than 30 million people in the United States. CRPS is considered a rare disease as less than 200,000 people in the US are affected. There is a lack of clinical research for the diagnosis and treatment of rare diseases because there are too few patients for drug companies be willing or able to sponsor clinical trials. Rare disease patients are all too often left fighting for off-label access to a treatment. This creates an even larger problem for patients relying on Medicare, as Part D plans are prohibited from including off-label uses of medications in the formulary. For these patients, there is not even an appeal or reconsideration mechanism available to appeal.

The PROTECT Rare Act (HB 6094) is designed to ensure parity in coverage for Medicare and Medicaid beneficiaries with rare diseases by including peer-reviewed literature and clinical guidelines and outcomes as “medically accepted use”. There is precedent for using medications “off-book” as certain medications were deemed “medically acceptable” for cancer treatment in the 1970’s. For many people with rare disease, off-label use of certain medications are the only treatment available.

This bill is supported by more than 60 rare disease organizations, including the RSDSA.

We encourage you to contact your federal representatives and Senators and ask them to support the PROTECT Rare Act.

You Are Your Expert

Written by Laura Swan, LMFT for the RSDSA blog.

How and when did you develop CRPS/RSD? 

In 2003, a physician did a shockwave procedure on my elbow. I was on workers’ comp for a repetitive strain injury and neck pain. She diagnosed tennis elbow despite my previous doctor saying thoracic outlet syndrome (TOS). Even with a nerve block I felt it hit the bone. I screamed so much that they gave me a full anesthetic. Within 36 hours, my arm was swollen and mottled. My hand was cold and blue. My pain level went off the charts and I could barely use my right arm (of course I am right handed). I switched doctors immediately and was diagnosed with CRPS and TOS. It took me another three years to have surgeries so the CRPS moved into both arms and my neck. The surgeries also consisted of sympathectomies to manage CRPS.

What has daily life been like since your diagnosis?

Life was horrible dealing with pain and depression. I could not use my right arm. The pain level was so debilitating that I developed depression as I could not work. I felt I had nothing to offer the world. I needed help with many things, could not have a baby at that time, and I had to go through the trauma of workers’ comp. After three years, I had two surgeries to decompress TOS and with a sympathectomy on each side to manage the CRPS. These surgeries were extremely painful, but successful in that my right arm was no longer discolored. I could use my hand more and my hand was warm. But I was left with nerve damage and a strong tremor in my right arm due to the shockwave therapy.

My recovery was hard with acupuncture, physical therapy, and psychotherapy. I was reliant upon pain meds to manage my symptoms and found that the fentanyl patches worked well for me. I was able to have a baby and had to adapt many things as my arm strength was weak. I wore a brace on my right hand to stop the cramps and to limit the shaking from my tremor. When the laws were changed regarding opioid medication, I researched spinal cord stimulators. Due to a very messy divorce and returning to graduate school, I had two spinal cord stimulators implanted in 2018. I had to have revisions as one broke when I was attacked (the leads fractured and could not be removed).

Now I have two spinal cord stimulators with four ports. One is cervical (arms, neck, jaw pain) and one is lumbar (lower back, CRPS in legs/feet and bulging discs from the attack). My cervical device changed my life. My pain was reduced and flare ups were less intense, shorter and more infrequent. My tremor has greatly subsided and I ultimately stopped needing fentanyl patches. My lumbar has been less successful and the CRPS is in both legs, feet and knees. I deal with moderate pain (with flare ups) daily and still need medication to manage this. I continue to live in hope that I can keep this managed and not let it take away my ability to walk.

Professionally, I had to take time off but I eventually graduated with a Masters in Counseling Psychology and I am now a Licensed Marriage and Family Therapist in California. I work in a high school in a therapeutic program and hope to open my own practice soon for evening only clients. I continue to manage my CRPS with meds and the spinal cord stimulators. Self-care is essential! I have worked with chronic pain clients before and this will be the focus of my own practice as there are few clinicians who understand chronic pain and its impact on all aspects of your life.

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

I wish others would stop the “you look fine,” “you hide it so well,” ”you did this before, why can’t you now” comments. Ultimately, we are NOT faking this. Fighting CRPS is exhausting. I am frequently exhausted by work and then cooking or going out. People also do not understand that there is no cure and please stop suggesting PT, acupuncture, etc. as I have done it all and having two spinal cord stimulators should indicate that nothing works anymore.

What advice would you give to newly diagnosed Warriors?

Taking care of your mental heath is paramount as is finding a doctor who understands CRPS. I found support groups to be helpful and a safe space to share your feelings.

Also share with your doctor if you are struggling with depression, insomnia, or suicidal ideation. Please do not feel ashamed for these feelings. This disease is known as the suicide disease and there were times when I thought that ending my life was the only way to escape the pain. 

Fortunately I put myself on a voluntary 5150 hold once, had medication stabilization, and then found a great therapist. My depression passed and I currently no longer need medication. If you are in a dark place please use 988 or use these suicide resources:

Suicide and Crisis Hotline 24/7: Santa Clara County – 1 855 278 4204

Substance Use Services: Santa Clara County – 1 800 704 0900

Crisis Text Line – 741741

What encouragement would you give to Warriors who have had CRPS/RSD for many years?

CRPS can go into remission. For my arms/neck/jaw I say it is in remission. My arms are still weak, but the tremor is mostly gone and I can do many things that I thought I would never do again.

Please find support groups as it is helpful finding others on the same journey online. Also please find a therapist who understands chronic pain to keep your mental health strong.

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

I cannot say enough about my spinal cord stimulators. It took three revisions (plus two implants and two trials) but the cervical device lowered my pain level by 80%. Acupuncture, heat, TENS, and aquatic PT really help. Mindfulness and meditation help manage pain, stress and improve sleep. 

Anything else you would like to add? 

CRPS is an unwelcome visitor in your life. Taking care of yourself and advocating for your own needs is essential. You know your body and your condition the most, so please do not let doctors dismiss you. You are your expert. CRPS can be managed and can go into remission. Adapting to living with an invisible disability is a long road. Ask for help when you need it at airports, etc. And also consider having disabled plates on your car.

Connect with Laura via Facebook, LinkedIn, and email.

The Veterans Health Administration Covers Ketamine

Written by Lisa Van Allen, Chair of the RSDSA Advocacy Committee, for the RSDSA blog.

Ketamine infusions have been proven effective in the treatment of depression, post-traumatic stress disorder, and chronic pain (including intractable pain like CRPS). The Veterans Health Administration has been covering the cost of ketamine infusions AND travel expenses to and from infusion centers for veterans for some time. Here are a few tips to ensure your treatments are covered if you qualify for veteran’s benefits.

The VHA will be looking for answers to:

  • Why you need ketamine infusions
  • Why you want to use this particular provider
  • What the provider will do to ensure a safe and successful experience with ketamine.

First, you will want to have a letter from your medical provider describing your disability rating. This should include what types of treatments have been used in your care and the limited success they have offered. It is not essential to have this provider’s support for ketamine infusions, but it would certainly help. 

Make a case for the use of the outpatient clinic you wish to use by documenting the lack of availability of ketamine infusion in the inpatient facilities in your area, if this is the case. You will want to get a description of the protocol used by the anesthesiologist at the outpatient ketamine clinic. Share the provider’s credentials and his/her experience using ketamine to successfully to treat your condition. Include what medications are utilized in the infusion, the length of time of the infusion, and what safeguards are used to protect you and ensure your comfort (monitoring equipment, staff ratio to patient, etc.). 

If you are seeking travel expenses, you will need to document the number of miles from your home to the infusion center. Some infusion centers require you have a companion sit with you during the infusion. It is unlikely the VHA will cover expenses for your companion – but it never hurts to ask!

There is an excellent article from the VHA that you might want to reference in your request on the efficacy of ketamine infusion for treatment resistant depression associated with PTSD.

Stellate Ganglion Blocks for Complex Regional Pain Syndrome

Written by Dr. Allison Wells for the RSDSA blog.

Stellate Ganglion Blocks (SGB) can be an excellent treatment option for Complex Regional Pain Syndrome (CRPS). Recent advances in medical technology have significantly enhanced the procedure, extending the possibility of relief to more people.

What is a Stellate Ganglion Block

The stellate ganglia are bundles of nerves on either side of the base of the neck associated with the sympathetic nervous system. A stellate ganglion block – also called SGB, sympathetic nerve block, or sympathetic nerve reset – is an anesthetic block of the nerves limits the signals conducted through those nerves. The procedure involves the introduction of a local anesthetic to the general area, and then targeted injections at the site of the nerve bundles. One side of the neck is treated at a time. The number and frequency of treatments varies, but can be as little as one block on one side of the neck (we start with the right-hand side), often two (one on each side of the neck), and frequently additional treatments in a series depending on the 

SGB works by temporarily blocking the sympathetic nerves in the neck, which are part of the autonomic nervous system responsible for “fight or flight” responses. CRPS is believed to involve abnormal responses of the sympathetic nervous system. By blocking these nerves, SGB can significantly reduce pain and other symptoms associated with CRPS.

SGB for CRPS

The procedure can improve pain scores for many people with CRPS. It is generally more effective for individuals with CRPS type 1 (where there is no clear nerve injury) vs type 2 (where there is likely or confirmed nerve injury). It is particularly beneficial for those suffering with pain manifesting in the upper extremities. As with many potential treatments for CRPS, it is difficult to know if SGB will be a good fit for any one person – due, in part, to the variable potential causes and presentation of CRPS. There is moderate but growing research on SGB for CRPS. Small studies have shown as high as 90+% of participants with CRPS receiving benefits from the procedure, but it is important to know that the effectiveness for any one individual is difficult to estimate with any great certainty.

Other Benefits of Stellate Ganglion Blocks

Stellate ganglion blocks have been studied and used for other conditions including some other types of pain conditions, anxiety and PTSD. This makes the procedure particularly interesting for individuals with CRPS who also suffer from PTSD 

Historical Context and Technological Advancements

Historically, the administration of SGB required the use of x-ray guidance to ensure accuracy or could be done ‘blind’ without the use of image guidance. A blind block in this area has the high potential for adverse consequences, including with complications due to the proximity of the vertebral artery. X-ray guidance, although effective, poses risks due to radiation exposure and typically required sedation, which could complicate the recovery process for patients. The evolution of ultrasound technology has revolutionized the procedure. Ultrasound guidance allows for real-time, precise visualization of the needle and surrounding anatomical structures without the use of x-ray radiation. This advancement not only enhances patient safety but also simplifies the procedure, making it faster and easier to perform.

Benefits of Ultrasound-Guided SGB

One of the significant benefits of ultrasound-guided SGB is the elimination of the need for sedation. Patients remain awake and comfortable throughout the procedure, which typically takes only a few minutes. The non-invasive nature of ultrasound means that patients can leave the clinic immediately afterwards without the lingering effects of sedation, and they are able to drive themselves home. The consultation and procedure typically take from 20 to 40 minutes in my practice, and patients are often in the office for 60 to 90 minutes for their appointment.

Side Effects

While there are certainly potential risks associated with this medical procedure, the ultrasound-guided method in the hands of an appropriately trained and credentialled professional can significantly limit risks.

Common and typically-transient side effects include temporary soreness at the injection site and a set of symptoms generally described as Horner’s syndrome. These symptoms are characterized by drooping of the eyelid, decreased pupil size, and reduced sweating on the affected side of the face. These effects are generally temporary and resolve without intervention.

A useful, and accessible treatment

The Stellate Ganglion Block is a very interesting block whose benefits go beyond those of many other types of blocks. It is useful for a variety of conditions and can be a real benefit to those with CRPS and some other pain conditions. For that alone, it may be useful, and for its ability to also potentially help with PTSD and anxiety it can be even more useful.

Advances in the portability, quality and cost of ultrasound equipment has allowed for ultrasound-guided the SGB procedure to be more effectively and safely completed in the office setting. When combined with expertise of an anesthesiologist trained and experienced in these technical blocks it is a powerful and accessible treatment option. I’m very glad to be able to offer the procedure and very glad to help people suffering with chronic symptoms. If you’re interested in more information, you can start with our page.

About Dr. Allison Wells

Dr. Wells is an anesthesiologist and an experience-leader in ketamine treatments for mood disorders and pain conditions. She founded one of the first focused clinics in the country, has helped many patients with many thousand infusions, and actively contributes to the field with research and advocacy. Wells Medicine, in Houston, TX, provides interventional procedures and a focus on comprehensive mental health toward excellence in evidence-based care.

Dr. Wells holds degrees from Swarthmore College and Baylor College of Medicine. She trained at Baylor College of Medicine and Harvard Medical School. She is a member of the American Society of Anesthesiologists, The Texas Society of Anesthesiologists and the Texas Medical Association. 

Wells Medicine, Houston, TX | wellsmedicine.com

If I’m Dating Someone, They Are Going to Have to See Me on My Bad Days

Written anonymously for the RSDSA blog.

CRPS is a rare neurological condition that can be very hard to treat. Getting a diagnosis can be very difficult as doctors do not know where it comes from. Each case of CRPS is completely different and studies show that cases are 85% female. CRPS is not something you are born with; it usually develops after some sort of physical trauma. I am a young male adult with CRPS. I try to live my life to the fullest, each day is another fight and I will continue to do everything in my power to find joy in life.

One of the toughest things about CRPS is maintaining relationships. CRPS is so rare and poorly understood. It’s hard enough to find doctors who understand what you go through. Maintaining relationships with family and friends can be extremely difficult. Most people do not understand what we go through which makes it difficult to hold relationships and develop new ones. The dai;y pain is ranked a 42/50 on the McGill pain scale, which is higher than the pain of childbirth, cancer, and other temporary or chronic pain.

Friends and family are extremely important in life. They can provide support and companionship. Unfortunately, these relationships become very strained which causes loneliness and depression.

Dating is one of those things in life that is very difficult. Most of us want the companionship of another person who can come into our lives to add support and serve as a best friend who understands what you go through. Even those who do not suffer from CRPS have trouble dating.

Dating while suffering from CRPS is extremely difficult. I have been suffering with CRPS since I was 15 years old. I did not receive a diagnosis until I was 23. I went to college and had a long-term relationship from the age of 18-25. The woman I was with really did not have to worry about the pain I was going through as it was something I was able to manage.

I knew what I had to do to get through each day and I was able to live a pretty normal life. I received a four-year degree in restaurant management and went on to manage restaurants after college. I dealt with the pain and did not share my struggle with anyone. When I was 23, my pain became unmanageable. I had to stop working and I received many surgeries in hopes of taking my pain away for good. It added a lot of strain to the relationship I was in and after eight years my girlfriend left me. Still to this day she claims that the pain I was going through had nothing to do with the reason we broke up. The pain affected every part of my life, especially the relationship I was in. I was barely able to manage my day-to-day, let alone my relationship. For a few years, I focused on myself and did what I had to do to get myself back to some sort of life.

What I went through was extremely traumatic. Surgeries, treatments, and therapy filled my days and I was not able to go out and enjoy life. After a few years I started to get very lonely and decided I would start dating again, something I had not done very much of.

Dating without CRPS is extremely difficult in today’s climate. Most people meet their significant other on dating apps. At the time, I was 25 years old and had no idea what I was doing. I went on all the different dating apps and tried to find a significant other that I could share life with. Without any preparation or guidance, I built my online dating app profiles and started communicating with women since I was unable to work and I did not have any places I could go to meet women.

I assembled my photos and built my profiles, but I had no idea what to do or say. One of the first things these apps ask you is what your job title is. You also have to fill in sections where you share your interests, passions, and hobbies. Unfortunately, I did not have a job title as I was/am unable to work. I also could not go skiing, play tennis, or play golf, activities that I enjoyed doing pre-diagnosis. The pain that I was going through was too painful to engage in these activities. How was I supposed to fill in these sections of my profile? What were women going to think when they saw no job title or hobbies? Who wants to date a guy that doesn’t work and can barely take care of himself let alone be with someone else?

I am one of the rare cases of CRPS where I do not suffer financial hardship even though I am unable to hold a job. I am lucky that I have financial support from my family. This does not take away from the fact that I do not make my own money from a job. I knew it was going to be an issue as women want someone who has passions and interests and holds a job that can provide financial independence. I did not think it mattered that I couldn’t hold a job being that I am in an amazing place financially. I can do as I please in terms of going out to dinners, traveling, and purchasing things for myself and others. I can go out to fancy dinners, do luxury travel, and purchase things I want for my life. As I started dating, I started seeing how young women perceived me.

Unfortunately, at the age of 26 I was not able to go out and build my career. Aside from that, I had to deal with all the other issues that come with a CRPS diagnosis. Each woman I have dated has had their own issues with what I go through. I did not hide the condition from anyone as I did not think it would be fair. However, I also did not share all the struggles that I went through as I did not want to scare anyone away. What do you share? How much do you tell them? How do you get them to understand what you go through? These were all things that I struggled with as I got further into the dating world.

Just getting to the first date from dating apps can be very difficult, let alone when you are dating with CRPS. Most of the women I spoke to would disappear after I told them pre-first date about the diagnosis. The women that I was able to meet in person did not understand my struggles and really did not want to get involved. One of the first women I dated was very kind and also suffered from a condition of her own. After a few dates she became very focused on the fact that I did not have a full-time job. She had financial issues in her family and was very worried that I would not be able to provide for her in the event that we got serious. She stopped seeing me after about five or six dates, solely because I did not make my own money from a job that I went to. I took her on nice dates and even brought her to a Taylor Swift concert. But this was not enough and she decided not to continue seeing me. On to the next one.

The next woman that I dated shared similar issues that I did in terms of family. I have a brother who had a traumatic brain injury and she had a brother who suffered from a neurological condition of his own. I thought this would bring us together as we both dealt with similar things. I still remember sending her a picture of myself and did not notice that my medication was in the background. She saw how much medication I take and was immediately taken back. After a few dates, she decided she did not want to continue seeing me as a result of this. On to the next one.

The next woman I met was extremely kind and caring. She knew what I went through to some extent. One day, I sent her a picture of myself with four heating pads on after going out with my friend for the day. She really did not know how bad the CRPS was, but when she saw how I was struggling so much just from one outing, she was also taken aback. She loves hiking, going to amusement parks, and being active. These were all things that I was unable to do. She decided that the relationship was not worth pursuing as she knew she would not be able to share her hobbies and interests with me. On to the next one.

I felt so defeated after each failed relationship and continuing on was becoming very difficult. I took a break for some time and when I came back to it I still had the same issues. A lot of the women would listen to me when I told them about the condition but they truly did not know what it entailed. Some of the women would see me on my good days, not the bad ones. I showed them my best self and sort of hid the struggles I went through as I didn’t want them to see the terrible struggle I was going through. I thought it was my battle and sharing the extremely tough things I went through was difficult. I felt embarrassed telling them that most of my days are spent resting and doing therapies or surgeries. They would ask me what I did all day and I really did not have a good answer. It’s not that I don’t want to work or do all the things I loved to do, its that I can’t.

I deal with so many side effects from the medication and pain that just managing each day is tough. People cannot understand something unless they go through it for themselves. Nobody could feel my pain and I didn’t want them to. At the same time, if I’m dating someone they are going to have to see me on my bad days.

One of the women I dated thought I was in remission as she saw me for the few good hours I had in a day. Once she saw how bad the condition was she was quick to depart. On to the next one.

There was a woman from college that I was very into at the time. We shared many similar hardships and although we never dated, we had a wonderful friendship. I tried reconnecting with her and even visited her at her home for a weekend. Unfortunately, there are many side effects to the medications I take to get through my day. Sexual side effects can be a problem for a lot of men but they are even harder for someone on so much medication. I could not be a normal young adult male in that department and that was a big issue for her. She also did not like that I was unable to make my own living. She never really told me why she didn’t want to continue seeing me, but things got very awkward after our first sexual encounter. After our first night together, she slowly started pulling away. Although she never told me why she didn’t want to continue seeing me I could tell. On to the next one.

Seeing women from my college years was a way for me to reconnect and maybe have a relationship that I couldn’t have during that time as I had a serious girlfriend. The next woman I reconnected with was a good friend from those years. We had a few great dates together and I took her to upscale spas and restaurants. But once I told her I was unable to get to her house in another state, she became very upset. She did not think I was putting in enough effort. She saw that I was able to do things such as travel to another country with my family, but I was unable to visit her at her home. I tried to explain, but she did not understand. She slowly pulled away. After a year of not speaking, I reached out to her to see how she was doing. She apologized to me as she was dealing with some physical pain from a recent ski accident. She said she really had no idea what I went through and now she had some understanding as she was dealing with her own pain. However, the relationship was already past due and I was not going to see someone who had treated me that way. On to the next one.

My last relationship was with a woman I also met online. We went on a few dates and things were starting to get semiserious. I was trying my best to be the guy I thought she wanted, even through all my struggles. I took myself out of my comfort zone and tried to be a normal 34-year-old adult. I thought I saw a future with this woman as I was sharing my struggles with her and she was sticking around. After our sixth date, she started asking more questions about my job situation. She asked me what she should tell her friends when they ask what I do for a living. I thought we were way past that conversation, but I was wrong. She did not know what to tell these friends and I knew it would become a bigger issue when she would have to tell her parents, who were both doctors. I tried explaining to her that I did not have to worry about things in the finance department and neither did she. She was concerned that she would have to support me and things started to go south. The relationship did not pan out. On to the next one.

I even tried dating women who had the same condition as me. However, as I said no case of CRPS is the same. These relationships did not pan out either. In addition to the failed online dating scene, I was also unable to meet someone in person. My friends or family have never tried to set me up with someone as they know how incredibly difficult my life is. I’m sure they don’t want to get involved in the situation as they do not even understand what I go through.

Although I have been unsuccessful in the dating scene, I continue to go out and try to meet a partner. I made the choice that I will continue to fight this condition and everything that comes with it. Although I have been unsuccessful, I continue to go on the apps and try to meet someone who can understand what I go through. On to the next one…

I Am Grateful for What I Have, but Sad About What I Lost

Written by April C. for the RSDSA blog.

In July of 2020, my son, who was 10 at the time, and myself were riding a four-wheeler in a remote area. The ATV went off the road and I did not want to tell my husband what happened. I attempted to get it out of the ditch. I was not able to, and the four-wheeler went up on its back two wheels and fell on top of me. In this moment it was one of the scariest times of my life. I thought my life was over and my son was going to witness it.

My brave son called 911 and then pushed the four-wheeler off me, despite my objections. The accident resulted in a head injury which I was later diagnosed with moderate Major Neurocognitive Disorder. I went back to a sixth grade education and my short and long term memory has been affected. I also have speech issues. I misplace words and sometimes what comes out of my mouth is not what I really want to say. I also had a hand injury, which ended up being my first limb that was affected with CRPS.

I have mental health issues Major Depressive Disorder, Anxiety, Adjustment Disorder, and PTSD. Life has not been easy. My journey is no different than anyone else’s, chasing a diagnosis and KNOWING something is wrong. I will never forget when I received my CRPS diagnosis… the neurologist looked at me and said, “do not go home and look this up. What you are going to read is bad.’” You can guess that I did not even make it to the car, and I knew all about CRPS.

The emotional toll of the accident, my head injury, and now CRPS was all too much. At one point I was going to kill myself as I did not want to live this way. I knew how I was going to do it and I came close. However, that boy saved me again and I decided to fight for him.  

I started my CRPS journey just like everyone else: pain management, tons of meds (21 pills a day), and nerve blocks. I stopped at the spinal cord stimulator after polling our group on Facebook as I knew there was a 50% chance it would work. I was not willing to have this in my back and I was going to figure this out myself. My mom insisted that I go to the Cleveland Clinic even though I knew it was going to be the same thing. As I suspected, they recommended a spinal cord stimulator and ketamine. Ketamine was not an option for me because the out-of-pocket cost was not in my financial reach. I also worried about my depression because it was bad and whether I would be the one that had a terrible experience. I then joined every support group on Facebook and spent many weeks reading other people’s experiences and trying to figure out how to survive.

Most of it was depressing, then one day there was this man who was once in a wheelchair and he was working out and functioning like an everyday person. Seeing him get out of the chair and what he had accomplished was inspiring. I then started seeking out those who were like him (there were only a few, but they were there!). They all reported a good life through diet, exercise, therapy (both physical and mental), and alternative treatments. I got myself an OT and a therapist for my head and quit all medication. I remember being in tears begging my family doctor to take over my care. He looked at me and said, “April, I know nothing about this illness. I am not the doctor to treat you. You need an expert.” I then told him he didn’t need to know anything and that I knew enough, and he can help me. To this day, he supports me and my journey with CRPS. He has been a blessing. 

I went through three mental health therapists before I found one. She told me recently that the first time I was in her office I was so guarded she thought I would never come back. In the beginning we focused on my illness. One of my first “assignments” was listening to Louise Hay’s “Heal Your Body” for thirty days. I could listen to it even when I was doing something as it was important for the subconscious to hear it. When I first started, it would bring me to tears. I lived a very trauma filled life, some self-imposed and some not. I continue to work with her to this day I have learned how to mentally manage my illness, love myself, get out of a very emotionally abusive marriage, and everything in between. There is also a book called “Unlearn Your Pain” and it discusses how if you heal your emotional trauma, you will heal your pain. This was some intense work, but I did it and I am glad I did it. My mental health has become more stable, and I now have the coping mechanisms to deal with my pain. 

I found the best PT a CRPS patient can ask for; she heard me and read me quickly. She knew I was a pusher (my desperation to feel better consumed me) and that at times my “push” harms my body. Remember that balance is key! She was just as invested in learning about my illness as I am, and she changed my physical health and how I approach it. She also got me back in the gym (nothing like the guy I saw a while back!), but just minimal activity combined with PT. I have been with her for four years now and we continue to track my progress. She has had three PT students with her and one did his paper about me. I feel lucky to have helped shape three future PT’s and teach them about this illness.

A year into my diagnosis I was at my son’s baseball game. We were in a dome and the floor was wet, I slipped, fell and sprained my ankle. Later that day, we had plans to take our son to his first Tiger’s game. I knew what my sprain meant: CRPS in my foot. I cried the entire drive. My ex-husband told me I was making a bigger deal of it, and I allowed him to push me that day. He was only concerned about taking our son to a game and for the same reason I did not want to call him to get the four-wheeler out of the ditch, I walked on my foot. I also did not seek treatment soon enough. The pressure I was feeling at home to “perform” was making me anxious and all I wanted to do was to make him happy. I never want to be a burden on anyone. I regret going to that game and not having a voice to speak up. My foot will forever be a constant reminder of this.

I live in a small town in Michigan and by luck I have found the most incredible mental health therapist, PT, and doctor. They have all been invested in me and they listen. I am beyond grateful. My support outside of the medical field has also helped me. The loneliness of this illness can be self-defeating. I am grateful I have friends and family who have encouraged me and supported me throughout my journey. I also have my forever hero, my son. None of this would be possible without him. I am grateful for what I have, but sad about what I lost. I continue every day to fight (some days are a lot better than others) but somehow, I keep making it through. I have learned to put on a “face” for the world and I’m good at masking my illness.

CRPS is no cake walk for any of us and there is no “right” answer for treatment. I believe each one of us has to find their own way. My way might not work for you. My personal goal is to find the answer to help us live a better quality of life. I am determined. I also want my brain donated to CRPS research. I hope that with my determination I can live a better quality of life and help others like me. For me that means a steady pain level of 6/7, PT/mental health therapy, and doing my best to keep my mind from going into a deep depression (this one is hard to master). In July, it will be four years since the accident, and I can look back and say I have made tremendous progress. Life is NOT easy, but I try and remain as positive as someone with CRPS can be and for the days I cannot muster up the strength, I look at my son, and know he is worth it all.

Reach out to April on Twitter/X via @aprilcowell19.