Category: RSDS General Info

Written by Scott Setchel for the RSDSA blog.

 

What happens when the strong get tired?

What happens when we don’t want to fight anymore?

Is this what I am reduced to?

Once I was full of life

Once I was full of joy

Once I was full of laughter

I endured cancer, not once, but twice

I could dance

I could skate

I entertained hundreds and hundreds

Of people over the decades

But, now I am tired

I am fighting a disease that has no cure

I am fighting a disease that no one understands

Unless you, yourself, have it as well

The constant pain is 24/7

It is wearing me down

It robbed me of who I was

It has robbed me of any meaningful future

I can’t do what others do anymore

I can’t go hiking

I can’t go camping

I can’t go skating

I can’t stay active

To do so unleashes an intolerable amount of pain

It’s a task just to get out of bed sometimes

It’s hard to make plans with family and friends

Because the pain can change day to day

Because the pain can change hour by hour

Trying to meet new friends is hard

As they don’t understand this monster we live with

Trying to date is harder

Who wants to attach themselves to such a broken person

The sting of hearing we are just not compatible

You can’t hike or camp or dance or bowl

And honestly, who can blame them

They want a companion to do those activities with

They want someone who

Won’t back out on a date at the last minute time and time again.

Won’t be exhausted just getting out of the car

Won’t lose their balance just walking into a restaurant

Won’t feel like they have to walk on eggshells around you when they touch you.

Will be able to enjoy physical activities

Will be able to make plans at the last minute

Will be able to enjoy the embrace of a loved one without fear of causing pain

They just want a normal relationship.

Well this is my new normal

And it is full of physical pain

And it is full of emotional pain

And it is full of isolation

And it is full of disappointment

And it is dark

And more and more

I am understanding exactly why

It is called the Suicide Disease

So what happens when the strong gets tired?

 

Please consider making a donation to RSDSA today!

Written by Christopher Skinner for the RSDSA blog.

Your struggles don’t have to be lonely or a family struggle! There are good people out there to help!

I am a Christian man with full body Complex Regional Pain Syndrome (CRPS). I have been full body for about a year now. I was playing basketball with two students at a drug and alcohol rehabilitation school working as a student advisor/teacher and was forcefully pushed from behind causing me to fall into a heavy stage bench. This caused me to tear my rotator cuff, hit my head, and hurt my neck. Either this event or the surgery about five months later caused me to develop CRPS in my entire right arm. I also believe to have CRPS in my neck although beyond an MRI, I have never had this looked into any further to this point in time. I have experienced significant spread over the past six years. As far as diagnosis goes, my orthopedic surgeon was hinting at the fact for a while, however, I was not officially diagnosed until my birthday by a workers’ compensation independent medical evaluation doctor about a year and a little under two months later. I did not fully understand the diagnosis for about three years after that and now there are still a lot of things that “defies any logic!” I have been fighting for some assistive devices since 2015 and others since June 2018. Bills and everything else got way ahead of us. Sometimes you have to reach out for assistance, even if you have a lot of pride due to a previous situation. This is the purpose of this article.

Never be ashamed to ask for help if you need it.

The first time we got help was from the RSDSA Jenkins Patient Assistance Fund. I thank God each and every day for the help they provided with our heating during a long winter and perhaps the greatest gift was a person reaching out to me. I was stuck in the phase of, “Maybe this is as good as it gets” for a really long time. Most of the ideas were shot down by the fastest gun in the east, but one stuck leading me to another method of help. This person knows who she is and I am forever in her debt as I am firmly the “Engineer behind my own healthcare.” She also taught me that, “Physical illness is not a weakness of yourself, rather a weakness of the body and strength is measured by your heart and your mind.” When someone offers their help and support, do not shut them out due to pride.

When I was a lot younger, I was disabled and I did ask for help so it is the most painful thing for me now. I received help and I was gracious for it, but after a year and a half into my disability of only receiving $499 of cash assistance and having two children, I was judged by people that I loved making it hard for me to ask for any help ever again. I had a cyst removed in 2007 and started working so much that I missed life. I even began to go for my master’s degree in mental health counseling during this point and had all of my coursework complete. I developed so many roles that it made the process of becoming disabled so much more difficult for the second time (I will do a second blog post about the mourning process and CRPS later).  I was injured in 2013 and in June of 2018. I was given a wheelchair accessible van and electric wheelchair. I had been fighting ever since for OT items and PT items including a ramp and a lift chair. The current law in New York state for workers’ compensation may not allow for a wheelchair accessible van in full. Many of my falls were from going up and down our stairs. Even though New York state workers’ compensation law 442.3 was on my side as the bills were submitted, causally related, and not paid or challenged within 45 days for my wheelchair and the van. I could have been all set up by the end of August for these two items. Needless to say I was left with no other option than to ask for help and I am so happy that I did.

I learned about the Grace Ridge Church through a program that they did at the Damascus School and learned at the Area of the Aging that every once in a while they complete projects like wheelchair accessible ramps for those in need. I contacted my fourth grade teacher regarding the project, as I knew she went to the church, who then contacted George Maxson from the Grace Ridge Church. A few days later, I got a phone call from George saying that out of dozens of people I was chosen for the project. Mrs. Alexander and her husband were both teachers of mine and I sent just a five paragraph message explaining what I had and what was going on. George came to our house for what I thought would just be for a wheelchair ramp, but then he started asking what else I needed to be done. Our house was built in 1806, I believe, but it is in great shape for its age. However, there is quite a bit of work that needs to be done to our house to fix it 100%. Back in my prime, I would have been able to do much of the work, but I am not a spring chicken at 38. The greatest gift George gave to us was inviting the family to 3:16 fest in Honesdale, PA and Brit Nicole spoke to my family causing a significant change. The mission group was going to come earlier, so George was able to get several guys together to make the ramp functional until the men’s mission group from the First Presbyterian Church in Endicott, NY was able to come to finish the ramp. The men from the Grace Ridge Church came here on Saturday morning and did not complain once about using their days off to help my family and I. There were hiccups because they forgot to order a lot of the supplies, but I have never seen a more patient bunch of men. We will never forget what they did for us.

Then November came and I was able to educate individuals from the First Presbyterian Church in Endicott, NY about CRPS and other struggles that we face on a daily basis. The added struggles that each of us can face can make our lives harder and even unbearable. The men that took the time to come here prayed with our family on a daily basis, listened to my testimony, prayed over me, and allowed our boys to work right along with them while sharing their lives with them. When they were done, we had working electric in our basement again, trees cut up out of our yard, a beautiful wheelchair ramp, our old windows covered with plastic, a clean yard, newer furniture, and the greatest gift of all a brand new bible with explanatory text on the side. Each one of the men signed the bible with a special message not just for me, but for our entire family. Chris shared a special verse for the boys which is now a part of my new favorite set of verses from the bible. Each man shared a piece of themselves in some way that touched us forever. I am able to deal with a flare better with God’s help and that is through reading the bible, listening to Christian music and sermons, or by reaching out to friends for help.

Here is a photo of some of the men who helped us out. The wheelchair ramp is unfortunately covered up, but the work by their hands is impeccable. Pastor Tim is missing from the photo. Vinnie Canosa who took the photo is from Grace Ridge and the other men from Grace Ridge Church are also missing except for George Maxson was with us the entire time. Thank you to everyone and God bless all of you!

I have received additional help from Vitalitus which makes a supplement of superior quality called Palmitoylethanolamide. This supplement works by helping to calm down your body’s glial cells in CRPS. According to Dr. Chopra, an amazing doctor who specializes in CRPS, glial cell activation has been shown to have a significant impact on CRPS expression. Eddy Cardentey was gracious enough to provide a discount for me as a lower income pain patient. He has been a truly amazing business owner and a proud supporter of RSDSA for quite a few years. This supplement does help a lot and is starting to help improve my pain expression along with my current medication which addresses the NMDA portion of the problem called levorphanol tartrate. I really appreciate all of the help and support from Vitalitus. This company is located in Pittsburgh, Pennsylvania, has a stellar reputation, is regulated by the FDA, they are NSF and GMP approved, fully made in the USA, and given an exquisite A+ rating by the Better Business Bureau.

There are other uses for Palmitoylethanolamide, but I can only speak to the use for CRPS at this point in time. When we are in a better place we would love to try it for our son for his autism spectrum disorder and our other for ADHD. As a patient who is using the product , I would like to thank you for your continued support. God bless you!

The last positive thing that has taken place is that I recently went to the Office of Vocational Rehabilitation which each and every one of us is entitled to if we get social security. You might be sitting there saying, “Why is this useful to me?” You may also be saying to yourself, “Well, I have lost all of my roles in life so what can I do now? Can I do anything?” If you are not pulling yourself out of bed everyday than the answer is probably going to be not a lot, but let’s say if you worked at it and forced yourself out of bed and to do a little bit more every day then what could be your possibility? Could you see yourself starting aqua therapy?

Each one of us needs to have a goal every day. I have full body CRPS so my goals are not much and neither should yours. You should not plan to run a marathon, but let’s say you can stand up for two minutes. Could you do a few dishes? If your arms will not lift them could someone hold them for you to wash? The goal is movement. The goal is not movement to put you down for a few days, and movement will hurt especially if you are not used to it, but work through the pain for just a little while to increase your tolerance. I know you guys can do it.

I have 100% of my coursework complete for a master’s degree in counseling. I have a one week residency to attend which I have to do at a conference center and I cannot even get myself up to use the restroom on my own or drive on my own so I have a lot to work on before I can do this. I do not have to be able to drive, but I do not know if I can take a caregiver to the residency. Aqua therapy is my best bet as it creates a weightless environment. The Office of Vocational Rehabilitation can help me with a lot of devices to navigate life. I am not ready to give up on my dream of being a licensed counselor, which I could do out of a room attached to my home. How many of you are prepared to let a diagnosis tell you what you can or cannot do? By this I mean enjoy life. With the right equipment and assistance we can do anything we want. I just need workers’ compensation to promptly provide me what I need like they are supposed to or financing to come in to the Office of Vocational Rehabilitation.

As individual CRPS Warriors, we are just one person drifting through this process, but I recommend that you reach out to others to help. RSDSA is an amazing source of help and an advocate in the most difficult of times. They are out there fighting for better treatment for CRPS patients each day. My goal next year is to make it to the RSDSA CRPS walk in Long Island, NY as it is their biggest fundraiser and I would love to meet others with CRPS. I have a Facebook Group called Complex Regional Pain Syndrome Warriors and supporters and I would appreciate it if you would join. I am a Christian and will send you any supportive passages that I find or sermons if you ask. I respect all other religions and rarely post on the page about God unless it is God in general. I am looking for other administrators to share stories and invite anyone they can. The goal is to introduce CRPS to the general community, nurses, doctors, etc. Then I offer ways to help with workers’ compensation if asked.

The bottom line is that there is a need within our community for help and we cannot be afraid to ask each other and our community for help if we are in need. If we are not in need and in any position to help others than I highly recommend a donation to the RSDSA.

Please consider making a donation to RSDSA today!

Written by John and Mary Ann Schildt for the RSDSA blog.

It was a day like all days, but one that would change our lives forever. Our daughter was a freshman music therapy major at Shenandoah University in Winchester, Virginia. On February 12, 1990 she called us about extreme pain in her right hand/wrist. There was surgery for what was thought to be carpal tunnel. However, it was not carpal tunnel at all. In April of 1990, we received the dreaded diagnosis of RSD or Reflex Sympathetic Dystrophy. It was the beginning of a pain that does not go away just like a fire that continues to smolder and burn.

Thus began a thirty year journey of suffering for Shannon as well as our family. She suffered the physical pain; however, we experienced the pain of seeing our daughter suffer and not being able to help her, thus the emotional pain for us.

The years have brought endless trips to doctors and hospitals. The trips began with the first surgery in Winchester, followed by trips to Johns Hopkins, Thomas Jefferson Hospital in Philadelphia, the Cleveland Clinic, Georgetown as well as many others. Shannon became a walking pharmacy as various medications were tried. We stopped counting the number of surgeries as well as medications. She has continued to receive nerve blocks in an attempt to still the fire as the RSD rages on and we continue to suffer.

Like the number of surgeries, we stopped counting the financial cost when we hit the million dollar mark.  The pain and cost continue to rage.

In addition to medical bills, there has been the loss of a young woman’s social and work life. Plans would be made for movies, picnics, vacations and one of her big joys, Broadway shows, only to be cancelled due to the extreme pain and fatigue.

Shannon never believed in not working. She gave all she could at work no matter how severe her pain was. She worked in medical billing and transcription for as long as she could. She then began her “Dream Job” of working for an insurance company where she could learn new skills as well as use the lessons she learned being a patient. She thankfully also had the opportunity to work from home. There were many times Shannon could not drive to work due to the intensity of the storm raging in her legs even though work was not far from home (30-50 minutes one way).  At one point, there was a new position that was being created and it would have been perfect for Shannon. She got in touch with the managers and expressed her interest.  The one kicker is she would be going out on medical leave, but she would be returning mid to late January.  Of course, the best laid plans sometimes do not turn out the way we want them.

December 1, 2017 was the last day she worked. There would be no returning to work or posting for her dream job.  We thought she would be off for four to six weeks, but it did not happen. It devastated Shannon and us as well. This was our daughter and we kept asking ourselves, “what can we do to ease her suffering and pain?” Shannon tried to protect us and never wanted us to see how bad it was, but we knew as her parents. We all cried and tried to hide our tears from each other. Many tears have been shed as we watch our daughter deal with this Beast that continues to rage its ugly battle every minute of every day of every month of every year. We have watched her try to do all she did in the past knowing life is vastly different for her and for us. We do not have the physical pain, but the emotional pain is so draining. We have watched our daughter robbed of the life she thought she would have and be robbed of so many other things. However, as painful as it has been, there have been many blessings with the greatest gift being our family growing closer and stronger. The saying “I have your back” truly applies with us as we will always have Shannon’s back and she will always have ours.

While the powerful inferno rages on, we continue to hope and pray that someday soon doctors will find answers to this beast and we can all breathe as the flickering RSD flames are finally extinguished once and for all.

Please consider making a donation to RSDSA today!

Written by Hydi Godsey for the RSDSA blog.

My name is Hydi Godsey, I am a 51-year-old woman who has been married for 30 years. I have two girls. One of them is a 23-year-old in pharmacy school and the other is a 19-year-old freshman in college. This is the first year my husband and I have been empty nesters.

My injury which caused RSD/CRPD, occurred 16-17 years ago and was such a stupid accident. I am right hand dominant and was opening a door at work when my wrist popped. When I first went to the doctor that January, they stated that the pain in my wrist and thumb area was carpel tunnel.

From the beginning of January until the end of that same year I received a lot of different treatments. The treatments consisted of TENS units two to three times weekly for about four weeks, physical therapy for about five months, and 18 nerve blocks over a four month time span. I also completed lots of treatments by myself that included hot/cold water treatment, relaxation techniques, and seeing a psychiatrist. I saw many different doctors and was placed on many different medications during this 12-month period. I felt stupid and was crying all of the time due to the immense amount of pain I was in. I was super emotional and very moody trying to figure out what was wrong with me and no one could tell me. This was the hardest point in my life.

I would often leave my house and could not remember how to get back home. In the same two-minute time span I could be crying and laughing. My emotions were all over the place because I was in so much pain. No one believed that I could still be in all of the pain I had when I had tried so many different treatment techniques. One day I finally told my doctor if we could not figure out what the issue was, I think the next best option would be to amputate my arm. This made my doctor stop and realize something was really wrong. Multiple times through that 12-month period I had decided to cut my arm off at the elbow. I went and saw multiple different specialists throughout that year with one even being all the way in Pennsylvania. I was eventually diagnosed with RSD/CRPS.

For the next 3-5 years my doctors and I were trying to figure out what medications worked and what medications did not work. Those years seemed like a blur in my life. I felt like I went to sleep and woke up years later. This aspect of not knowing exactly what happened really bothers me to this day. I can remember different things here and there, but I do not remember the whole-time frame. There were times where I was still trying to figure out what medication worked and some of the time I was not on medication at all. I was so emotional, and I hurt really bad. I have had two kids and a mastitis while breast feeding my youngest child, but nothing has ever compared to the pain I felt while I was not on medication.

During this time of my life I thought about many things to help the pain and one of the ideas I had in my head was killing myself. I thought that would make all of the pain go away. The other idea I had like I stated earlier was to amputate my arm. I slept for days and days because when I was awake the pain was unbearable and all I could think about was suicide or amputation.

Eventually my medication regulated and now I have good days and bad days. My injury started in my thumb/wrist area and has now moved up my arm to my shoulder area. I describe the way my arm feels as continuously having a blood pressure cuff wrapped around the upper part of my arm as tight as it could be. My arm feels as if someone is pouring a cold substance down the inside of the arm below the tight level of the blood pressure cuff. My fingers have a tingling sensation running through them as if they are asleep. I cannot feel different parts of my hand, fingers, or arm area and the other parts are very sensitive. This injury has caused problems on the whole right side of my body. My knee will sometimes pop out and I cannot walk long periods of time.

These days, I can normally function three to four hours without needing a break. If I know I am going to have a big day planned I will rest the whole day before to ensure that I have enough energy to do what I need to do. I take the same amount of medication that someone who has stage four cancer takes. This is the only long-term treatment that has helped me find some sort of relief. I also take Zoloft for anxiety and stress.

Some temporary treatments I complete on a daily basis include different stress balls that I can squeeze and having someone push on my shoulder which helps alleviate the pain a little. I also meditate daily with multiple different relaxation techniques. I still cry just about daily as I still have good days and bad days. Normally there is one day each week where I have really bad pain where I sleep all day. On the days I hurt really badly, which are far less than all the good days I have, I still think about amputation and suicide.

A few things I have learned along my journey from my doctor include continuing to use your limbs or it will hurt worse and you will eventually get neuropathy. I repeat: if you are reading this and you have RSD/CRPS do not ever stop using your hurt body part. Although my arm hurts using it, it also hurts not using it. For new warriors out there, you may want to give up on your worst days like I do, but I have learned that you cannot give up and you cannot let this take over your life. One thing I have really worked on in the last 17 years is having sympathy for others. My instinct is to be a cold-hearted lady and not care because they do not understand the pain I have endured throughout my lifetime. It is especially hard when my kids complain about a tooth ache or an ankle injury. This part of my life makes me sad because before the injury I was not like that. I was probably one of the most caring people out there, but now I have to put a lot of effort into having sympathy for others.

One of my greatest worries in life is not being able to get the medication I need. I need my medication to live just like I need air and water. I hope to never go back to when my pain level was above a 10. When I was hurting so bad, I could not get out of bed and I could not do things with my friends and family.

This post was not written to get pity or anything from anyone. I wrote this to show how RSD/CRPS can affect me and my family. I want to be strong for my family although it is hard. It is hard to remember some things and I feel unworthy for my family because I am not making the same money I was when I had a job before this accident happened as I am on disability. I sometimes am not able to think and answer questions I should know due to my medication because I get into a fuzziness haze.

One thing I wish people without RSD/CRPS knew was that even though one day I look fine and the next day I am not doing too great and can hardly get around I am not lying about this disease. I do feel the way I do and anyone can feel this way one day and feel okay the next day.

Another main takeaway that I want people who have RSD/CRPS to know is that the worst person judging you is yourself and you should not judge yourself. You need to be strong in the toughest of times. You will need to rest. Do not be afraid to tell someone to not touch the injured part of your body. Although I am right-hand dominant, and I hurt my right hand, I now do not shake people’s hands with my right hand. However, do not let neuropathy set in and try to always use wherever your injury is. After living with this for 17 years, I can fully say I believe I have lived through the worst and this is my life.

Please consider making a donation to RSDSA today!

Written by Susan L. Schildt for the RSDSA blog.

I have been asked, as a sibling of an RSD Warrior, to share my thoughts and feelings on this wicked disease.

I am not good at sharing my feelings, but as I thought through this I thought that using the letters of the acronyms of this disease might be the way to go to describe what the disease does to the patient and family.

RSD – Letters that define a disease of Intense burning sensation.

R

Robber of quality of life for patients

Robber of quality family time due to suffering of patient

Robber of anticipated fun events, hopes, and dreams due to the burning sensation that cripples the individual and the family who stands by the individuals side helplessly standing by, at a loss to provide comfort physically or emotionally.

 S

Sadness that is a part of watching all of the “robbery” described above and once more unable to provide real comfort in the face of anguish and despair.

Suffering  that comes from watching the patient suffer and suffering inside because you cannot help. Suffering because you do not have anyone to talk to who understands and suffering from trying to hide your own feelings so as not to burden the patient anymore than they are already burdened by the disease.

Sadness from watching caregivers work so tirelessly to provide comfort in any small way and unable to do so then carrying their sorrow inside with no real outlet.

D

Deception is part of the disease because from the outside one often times appears to look healthy while a raging inferno burns inside thus creating isolation from friends/ family because they feel the patient is making unfounded excuses to not participate in events or activities. Isolation for both the patient and caregivers then ensues due to lack of understanding and helplessness of “outsiders.”

Devastation on the part of the patient and watching the patient miss long awaited, hoped for events/festivities because the pain is so excruciating to venture out.

While I am not right in the midst of all of the above because I live miles away, hearing the anguish in voices, devastation from crushed aspirations and tears of helplessness and frustration are sometimes more than I can bear as I, too, feel helpless to soothe, comfort, fix the situation for those I love.

Please consider making a donation to RSDSA today!

Written by Carrie Cleary for the RSDSA blog.

I had my first spine surgery, a laminectomy in 2008, at the age of 45. That was followed by a multi-level fusion in 2009. This is where we believed the CRPS started.

I had two cervical spine fusions a few years after this. I had nerve blocks for the lumbar nerves every three months for years. After years of pain on and off then just on, I had a Spinal Cord Stimulator implanted in 2016. I was still taking opioids and living in Northern Illinois where the barometric pressure changes and months of bitter cold were killing me. Barometric pressure changes cause the tissues in your body to swell and push on nerves.  My docs told me I had to move south or I was going to be crippled. So after a lot of research, my husband and I moved to Pinehurst, North Carolina.

We moved in 2018 and in 2019 I was again having horrible lower back pain that radiated down my left leg. We went up to Duke University Spine Center where after months of tests they did a full spine myelogram and found that L4 & L3 were popping out in opposite directions. I underwent fusion surgery 6/18/19. I woke up and I was paralyzed in my left leg! I was terrified! They went back in again that night but could not fix it. The L4 nerve was damaged after being pinched and would have to regenerate.

I could not feel my leg. And THEN on the 5^th day, nerve pain started. I explained it to people that it felt like my skin was being peeled back and fire ants with little knives were on top!! NEVER in my life have I felt anything like this! They had to drug me up to the point I could not hold a conversation for 12 hours to get it under control.

Two days later I was taken by ambulance to an Inpatient Rehab Center in a hospital in Pinehurst. The pain in my leg would get worse at night and I would fear 6:00 pm. I could not sleep for days. Nurses would put a desensitizing cream on my leg and I would scream! We tried ice and heat. I could not even handle any sheets or blankets on my leg. Everything was crazy painful. Thankfully it was summer and I just wore shorts. There at PT & OT I learned to get into bed while using my good leg to lift my paralyzed one, get to the toilet safely and sit down using grab bars, take a shower & learn how to step into it (I use a shower chair), get myself dressed & how to get in a car from my wheelchair. The walker was only used for a few steps, while concentrating on clenching butt muscles because my knee was hyper-extending, meaning bending backwards. The nerve that is damaged controls the muscles in my left leg. When the nerve cannot send messages to the muscles, you have to learn to control those muscles a different way.

My surgeon said I would heal in six months and I thought he was crazy. I am now at five months and they have changed it to one year.

Since I have CRPS/RSD on top of this horrific injury, I have burning, stinging and aching in my lower leg and knee due to both. I am very concerned that this pain will only diminish a little and I will have to live with most of this. When you touch the surface of the inside of my calf, I can’t really feel it. I had a filament test done and when they touched the inside of the calf and I could not feel it. That is a concern, as you need to feel it in order to not hurt yourself.

I started having Biofeedback with a Pain Psychiatrist at Duke. Some of the things she has taught me could benefit many on this blog.

• Keeping your surface body temperature at 88° is very important to help the tissues in my leg.
• Getting enough sleep is very essential. The body needs 6.5 continuous hours of sleep to relieve the brain of toxins it accumulates during the day. This will help memory.
• Chronic pain increases susceptibility for infection. Get your flu shots & wear a mask in doctor offices.
• Nutrition is very important. Eliminate items that cause inflammation such as sugar, dairy & red sauce/cooked tomatoes from your diet.
• Moderate exercise is also needed. Working out in water does wonders for many.

This is a regular day where I have PT: I set an alarm on my phone for all of my meds. 1 a.m. pain meds, 5 a.m. nerve meds & a muscle relaxer, 7 a.m. pain meds and I get up. I get my coffee and then get in the shower, using the shower chair. I get out and have an additional towel sitting on my rollator walker. I sit on that at a vanity table I had to buy in order to put on my make-up. Then I go back in the bathroom and blow dry and style my hair while sitting on the walker. I am already pretty exhausted. I carefully pick out clothes as my leg is so sensitive so I can only wear a few things. Once it got a little colder here, I bought some Sonoma brand lounge pants at Kohls. I also bought Cuddl Duds (they also make sheets!) & Simply Vera pajamas and a few lounge pants that are super soft. You have to go touch things and cannot order online because only the softest stuff cuts it. At 9 a.m. I take a handful of vitamins and maintenance drugs as my immune system is compromised from the chronic pain. This is not unusual for CRPS patients. I drink a protein shake and head to PT with my wheelchair by 10 a.m.

I’m very lucky that my Physical Therapist, Brent, totally gets my issues. I started seeing him right after we moved here. I can’t stress enough how much PT is important for all of us. Before surgery, he did dry needling, which is trigger point therapy. I have also had Myofascial Physical Therapy which I HIGHLY recommend. Brent now helps me with stretching, mobilizing techniques, stationery recumbent bike, sit & stand core exercises, cupping, Kinesis tape, balance work and walking exercises.  Without him, I would not be mobile at all. I go three times a week, which I know is a lot, but so important right now.

After PT, I go home and have lunch and a nap. I like to use the heating pad on my leg to help the discomfort. I take pain meds again at 1 p.m. If I am having a bad day, I go back to bed for up to four hours. Sometimes I sleep through the pain or I read & watch TV. I have a blanket support at the foot of my bed to keep the blanket weight off of my feet. I also have jersey sheets that feel like a soft t-shirt because my leg is so sensitive. Other days I try to assist my husband with chores. I also spend a lot of time reading in my recliner. I have the kind that can stand you up. It also has heat. I purchased a Drive brand medical kitchen chair from Bed, Bath & Beyond as well. This allows me to sit at the counter or in front of the sink or stove. I used to love to cook but it is very difficult now. I try to make soup in a big pot that I can freeze in portions. By cooking your own food, you know exactly what is in it and more importantly, what isn’t. I try to put Turmeric, to reduce inflammation, in almost everything. It may take me all day to do it, but it is helpful. At 7 p.m. I take pain meds and nerve meds and at 9 p.m. I take an anti-depressant that is also for nerve pain.

I live in a 55+ community. People wondered why I moved here so young but we reduced our house size drastically. It is a one level and all outside work is done by HOA. It is not as nice as our old house, but it is making our lives so much easier. We also have many activities here that I can attend. They usually only last a few hours. It is so important to socialize even if you are not 100%, because truly most of us will never be that again. If I am at 60%, I am happy right now.

Having a support system is EVERYTHING. It may be us in this group, your family or friends. I was working as an accountant up until this last surgery. I do not know that I will ever be back full-time again. I have applied for social security disability.

I frequently have people that ask me when I am going to be out of this wheelchair or when am I going to get better. Would you ask a cancer patient that? Heck no! But remember, it is not your job to explain your diagnosis or situation to anyone. We are lifers in this together. But we can share our stories and methods of functioning so we can learn from each other. You never stop learning and should never stop trying alternative methods. It is never going to be just the pills that get us by. Keep an eye out for studies and keep reading these blogs for new ideas and suggestions. Try to keep an optimistic attitude. If you are depressed, which many of us are, see a doctor and get on some medications. Trust me. They help.

Carrie is a 56-year-old woman now living in Pinehurst, NC, after relocating from Northern Illinois. She lives with her husband, Mike, and their cat, Puck. She is an avid Chicago Blackhawks fan and she enjoys socializing with friends, reading, traveling & cooking.

Please consider making a donation to RSDSA today!

Special thanks to Olivia Erdman for the taking the time to create this amazing vlog for her YouTube Channel. Take a moment to watch to learn more about her diagnosis, journey, friendships, and more.

Please consider making a donation to RSDSA today!

Written by Colleen C. Ross for the RSDSA blog.

How and when did you develop CRPS/RSD?

Well, that is actually a really great question! I suffered a back injury around 2008ish, did not really get adequate medical treatment until 2009, and opted for a laminectomy at L5-S1. I pretty much knew right after surgery that things seemed much worse, but all of my concerns were dismissed and I was basically told that I just wanted the pain pills.

After horrible results from a round of epidural cortisone injections, I opted to just realize that this was my new normal. That really did not last long though because by 2011 I was a hot mess, literally. My new PCP chalked it up as thyroid issues, which would eventually result in me having a thyroidectomy due to believing there was a very big chance that I may have thyroid cancer. I honestly felt even worse after that surgery too. Again, accepting my new normal, I pressed on working as a prep/line cook in a restaurant. That was extremely tough!

In 2016, shortly after changing jobs, my appendix ruptured and I had to have an emergency appendectomy. Again, I was not okay after this surgery. I ended up with an abscess, had to have a drain put in my body, which resulted in another hospital stay. I went back to work within a month of all of that, which is the normal amount of recovery time for a regular appendectomy, let alone all of the added complications. Due to the nagging and bullying by a co-worker whom was also a “supervisor” and a long time close friend, I went back to work before I was physically ready, but I could not afford to lose my job. When people told me, that able bodies people will never “get it” until they got it, they really nailed it there!

In March 2018, my body finally gave in. With my entire left leg screaming and pounding in pain accompanied by my back in excruciating pain as well, I went to my closest ER in the middle of the night. A CT confirmed my worst fears: my L-4 and L-5 were now both herniated and my L-3 was bulging. That started what has been a whole other merry go round of doctors and specialist appointments, most resulting in either being turned away or very limited options.

In May 2018 I noticed my left leg was a completely different color and temperature than my right leg. It kind of made me panic because they had tried another “nerve block” a few weeks before that and I feared I was having a reaction to that. That night was the first time I had ever even heard of CRPS/RSD. As I began researching about it, the last 10 years of my life and all the crazy symptoms I had been having were flashing before my eyes in script on a computer screen. The next day I made an emergency appointment with my PCP and between her and her nurse, they agreed that they too believed that I had CRPS/RSD. After months of waiting for an appointment, I was officially diagnosed with CRPS/RSD type 1 by a pain management specialist in 2019. He proclaimed that he felt that I had most likely had CRPS all the way to either before my back surgery, if not indefinitely after my back surgery. He also felt that I needed to have a DRG implanted and my fiancé and I actually left that appointment feeling the best we had after leaving an appointment in a very long time. It was short lived though.

What has daily life been like since your diagnosis?

At first, it was a relief because I finally had a diagnosis and knew that everything I had been experiencing all those years was not “just in my head” like everyone was telling me, or that I was “just really crazy” as my “friends” told me. I also figured, “okay, I have this diagnosis, there is tons of information about how debilitating it is, as well as the fact that it has no boundaries.” So I figured that “great, at least now I will get adequate medical treatment” and hopefully even start to get some quality of my life back! Yeah, that did not happen either. I just keep on going though.

Even before the back pain, life was always a struggle for me in one aspect or another. So now, it is almost like I have realized maybe my life was so tough because it was preparing me for life with CRPS. I probably will never know the answer to that question, but what I do know is that life with CRPS is not for the weak. At 36 years old, my quality of life is not great at all. My mobility is limited, my mental health is not good, I do have major concerns for my general health and the route I had to take for pain management, but as I always have, I just keep going, waiting for my turn, to hopefully get the best relief I can from the symptoms that plague me the worst.

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

Remember, we did not ask for this to happen to us. We do not want to be in this situation AT ALL. Instead of accusing people with CRPS of being crazy and attention seekers, just try to understand them and MOST DEFINITELY if you are friends with someone who has this, or gets diagnosed with this, do not abandon them. Be there however you can for them and even if you know they might say no, include them. Try not to complain to them about things YOU KNOW for a fact they would do anything to be able to do. Offer to help with tasks that are really easy for you to do, but you know are horribly difficult with someone who has CRPS/RSD. Most of all, learn as much as you can about this disease so you can try to understand the best way possible what we are going through. And if you make a commitment to someone with CRPS/RSD, do the absolute best that you can, to follow through with it. Obviously things happen, as everyone has their own lives and own responsibilities, but I am referring to the people who are always offering to help and then are always either backing out for a ridiculous reason at the last minute or ignoring them all together.

For me, being ignored and not included is probably the hardest. Before March 2018, I was a really good friend to certain people for many years by babysitting their kids for free and bringing them food when they were sick. Most of my friends I worked with, so on many occasions I went in for them if they needed me to. I would cook dinners for them, watch their pets, let their pets in and out if they went on a weekend getaway, and generally be there for them when they had an emergency, no matter how big or how small. For a majority of those years, I was a very able body person who did not drive, so a lot of those tasks were a little more difficult than it would have been if I had drove myself. I did it though, and I enjoyed doing it, or I wouldn’t have done it. I never expected that those people would not be there for me during the time I needed them the most, but that is the way it is now. I cannot change any of it, so I know who I can count on and who I cannot. I have realized that some people just cannot see past their own existence and their own wants. I am at peace with that, but I will never stop challenging people to be better than they were the day before.

What advice would you give to newly diagnosed Warriors?

Reach out to other Warriors as most of us have a pain management tool box that usually does not include immediate help from a medical professional. Learn as much as you can about this disease as most seasoned Warriors have links saved with a plethora of FACTUAL information! I have found great comfort from the CRPS/RSD support groups on Facebook and I suggest you join a couple and see if it is a good fit as there are tons of them. If one is not a good fit, try a different one.

BE YOUR OWN ADVOCATE! No one is going to fight for you more than you will fight for yourself! Do not get upset if you lose friends, even if you never imagined your life without them. This is not a life for weak people, and it is best to weed them out now rather than let them continuously let you down, or give you bad advice. I have found that controlling my emotions the best way I can by not getting mad or upset keeps the worst of the worst symptoms away. Do not put up with toxic people (weed them out too!) as they will only make things worse in the long run. I had a friend who was like a sister to me and she knew how to push my buttons. I was dumb enough to let her and my life has been more peaceful since I quit talking to her. The amount of time you have been friends with someone does not really matter as it is how they treat you that matters. I would rather have four quarters than 100 pennies, and thankfully my quarters now are worth more than .25 a piece. My tribe is amazing and I know I can trust them all 125%.

 

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

This might not necessarily be advice, but to the ones who have knowingly been Warriors for many years, THANK YOU! Thank you for paving the way for newly diagnosed Warriors like myself. Especially thank you to the ones who have started the support groups, spread awareness, and are networking years of valuable information to help others! I honestly would have been lost without you all! I have yet to find a more amazing community, than the CRPS/RSD community! Everyone just wants to help you, or even just be a friend and talk about what helped them.

 

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

That is a tough question, because I am still navigating my way through the healthcare system and trying to find a treatment that is actually available to me. I did have a spinal cord stimulator implanted, but I have had some complications and major setbacks with it and honestly do not know what is going to be the end result of that. However, I hope it is something positive.

My daily life consists of a list of medications, with a very little side of actual pain medication that is not really at the best therapeutic level for me. It gives me relief, but it’s basically just enough so that I am not in so much pain that I am screaming, all the time. PURE full spectrum CBD has helped, along with an array of creams, salves, and lotions that either myself or my fiancé massages on the problematic area. I had a jacuzzi tub installed and that has given me tremendous relief! Water has been one of the few things that has consistently given me relief throughout all of this, even prior to my diagnosis. I have had luck with meditating music on YouTube, whether it is just to have calming music in the background or to fall asleep. The combination of that and a good massage after a relaxing bath is basically how I am able to get some sleep. Sleep helps me to be better mentally equipped for whatever crazy symptoms this disease decides to throw at me! The body tremors and spasms are pretty difficult to control, but magnesium supplements help. I have not found anything that I have been able to use to really get back to living my life.

 

Anything else you would like to add?

It is easy to get frustrated and want to just give up. However, I keep telling myself that I have made it this far and have been through so much so I must be here for a reason. Therefore, I refuse to give up. I may say I want to, in a moment of desperation, but that is also the thing that I remind myself: it is just a moment and eventually that moment will be gone.

I am truly very blessed to have the amazing life that I do, and that really helps me to keep pressing on. I have a 16-year-old daughter who is just purely nothing short of amazing and is really more responsible and resourceful than most adults I have met. She helps so much around the house and actually cooked ALL of Christmas Eve dinner by herself last year because I was in such rough shape. I wish I could keep her home forever, but I will not let this disease take her life too. She has so many amazing plans for her life and I will support her every way that I can.

My fiancé is really a force to be reckoned with and we both feel that we really have something special together! We have known each other since we were 13 and were friends for many years, prior to dating. He really is cut from a different cloth than the rest! I really am blessed to have him and to call him mine. He’s been through all of this with me, and has never left my side. He is now my main caretaker and manages our household, finances, grocery shopping, chores, helps me keep on track with my meds, will massage me whenever I ask, stays up at night with me when I am struggling, and anything else I need as well as working as a full time mechanic in a very busy garage. I have my mom, aunt and fiancés parents too as well as other family and a small group of friends. There is so much that keeps me going, and even in the worst of it, I have so much to be thankful for.

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Written by Lisa Marie Weiner for the RSDSA blog.

Please consider making a donation to RSDSA today!

Written by Madison McKune for the RSDSA blog.

I know your favorite stories start with the classic phrase of “once upon a time”, or have these amazing, colorful, vivid, superheroes that somehow in the brink of the scariest moments turn bad into good. I know that this diagnosis you just received seems like one of those scariest moments. That all these new faces and doctors, needle pricks, and hospital stays seem like you are living your least favorite fairytale, or that you are now a pawn. Let me assure you sweet child; you are exactly where you are supposed to be. You are not lost; I and all the other warriors in this community are holding your hand.

I, Madison McKune, am holding your hand, and we are going to get through this together just like the board game “The Game of Life.” I am nineteen years old, and currently enrolled in college in Georgia. I aspire to be a nurse anesthetist with a concentration in pain management. I have been fighting this ‘monster’ since I was ten.

I went from trick-or-treating, coloring, playing board games, dressing up in silly costumes and playing with my friends to seemingly overnight living the villain’s role in a life that no longer aligned with my own. I underwent a meniscus repair surgery; then afterwards developed pain which I did not know how to explain to my parents. I was afraid to tell others, especially doctors, how bad my pain was. I wanted to fit in with all my other friends. My friends that were living “normal” lives. But my new warrior, SPEAK UP! Do not be afraid.

I lived in and out of Children’s Healthcare of Atlanta for six months, during which time I was unable to walk. The doctors whom tried to help me were unable to properly diagnose what was going on in my body. It was not because I was a “villain”; rather, it was because of how special I am that I needed a special team of doctors from Boston Mayo Clinic for kids to work together and properly diagnose me with this long word, which seemed like the entire alphabet stringed together in a bowl of soup, called Complex Regional Pain Syndrome. After being diagnosed, I was able to come home (finally!), with my parents and through lots of physical therapy and Lumbar Sympathetic Nerve Blocks my body was able to heal. For five and a half years I was in remission.

In the fall of 2016, I had Bronchitis which snowballed into Pneumonia and Pleurisy. After being released from the hospital my unwanted friend, CRPS, returned. Since then, I have been receiving special treatments called Ketamine Infusions and Stellate Ganglion Nerve Blocks every time I experience pain. I know these are big words, but really its just extra special medicine my pain management doctor gives me to make me feel better.

When I was first diagnosed, I was limited to the activities I could do, most of which included being in bed. I played lots of board games, my favorite being “The Game of Life”, and watched countless Scooby Doo movies. Even “The Game of Life” which seemed to have every milestone on it; and Scooby Doo where the mystery team always caught the bad guy could not have prepared me for the battle that I was about to face. Young warrior, all the different colored pills you see, they are special superhero medicines that are going to help make you stronger and feel better. All the doctors and new faces you are about to see, they may seem like a blur of colors, but they are going to help turn from a scared warrior to a superhero with an invisible cape. And next time you go to play a board game, pick up your favorite game piece and know that it is YOU, you with an invisible cape already capable of capturing the villain, just like the mystery team. Because I am holding your hand along with all the other CRPS warriors.

Just like any board game, to get from start to finish is never short or easy. This journey that you have just been given the OPPORTUNITY to fight is not going to be short. But you, YOU my new friend, you CAN and WILL fight this monster, and just like the mystery team you will conquer this as long as you remain true to who you are, keep living each day to its fullest and wear your invisible cape.

Buckle up my little warrior! We are going on an adventure together, and together we will solve this mystery and find a cure for this “villain”.

Please consider making a donation to RSDSA today!