Complex Regional Pain Syndrome–the suicide disease

by Chris Skinner

I was a popular student until the fourth grade when my dad became disabled and was in and out of the hospital up to 180 days out of the year.  I cried constantly, became withdrawn, my grades dropped some, and I lost most all of my friends that weren’t cousins.

Did I talk about it?

No, men are strong and are not supposed to show emotions in public.

Through the court system, my brother asked to be removed from our household. After it took place, he became more involved with drugs, a story for another day.

We also struggled with far less income and I became more withdrawn, internalizing all my problems and not dealing with any of them. I was bullied because I was different. How could a kid be normal with so much on his plate?

My dad had over twenty surgeries from the time I was eight through the age of twenty. To this day, he continues to be one of my primary worries. I grew up without my dad being able to play many sports with me. He played frisbee once after when I was eight once and it was the best day of my childhood.

My mom was his caregiver, a homemaker, and a woman with very little spare time.

My worst fear was that I would have children and also become disabled.

Fourteen years ago I left work early because I felt like I had a bad case of the flu. The next day I noticed it was coming from my back and made a doctor’s appointment. I had a MRI scheduled, had an appointment and two weeks later found out I had a Tarlov cyst in the sacral canal of my spine–the biggest on record.

This was my first time on heavy pain killers. I was on antidepressants, xanax, and klonopin and eventually started on the fentanyl patch for pain 50 mcgs per hour at first. I went to neurosurgeon after neurosurgeon who refused to do the surgery.

After two years, I found someone to remove my cyst which had grown and they removed part of my backbone to get it out and glued my sacrum back together. I hope the glue holds up.

The opiates were so hard to quit. This was about 10+ years ago and I had 120 pills that I could have taken to get me through but I weaned myself at first going longer and longer between doses.

As the length increased between the doses so did the anxiety and extreme desire for the medication. When I went cold turkey after a few days, I wasn’t able to eat,  or sleep. I was anxious, nauseated, and grumpy.

How did I get through this?

I prayed a lot for strength. You may think this story is over but that’s just the beginning.

I was working at a school when I was pushed from behind by a student and sent crashing into a heavy stage bench tearing my rotator cuff,  hurting my upper back and neck area. It was treated but did not improve and I didn’t want to have surgery right away, but Worker’s Compensation pushed me to have it done. I ultimately agreed and ended up in more pain and swelling and was diagnosed with complex regional pain syndrome (CRPS)–a rare disease I didn’t know existed and for which there is no cure.

I allowed the doctor to give me ten days of pain medication only because addiction is a lifelong disease and it’s easy to become hooked again.

CRPS is called the suicide disease and is at the top of the McGill Pain Scale. I was in significant pain and it wouldn’t ever get better.  I’m on a lot of medication to because on top of the pain there’s anxiety and depression. I tried a spinal cord stimulator trial, supposed to interfere with the pain signal but that made it worse.

My medications for this disease started out as neurontin which made me suicidal and then to lyrica. I was also put on cymbalta for depression and nerve pain and valium for anxiety and muscle spasms. I was passing out from pain daily and my doctor recommended opiates and I took them. I will be on them again for four years soon although dosages are much lower. I was desperate.

The CRPS has spread and become full body

I can’t endure physical contact of any kind because the pain is excruciating. Even a cat hair can trigger extreme pain. I need help walking and have difficulty sleeping. I usually cancel on my friends if we have plans as the pain is too great. It’s not because I don’t like them, but it’s because I have more bad days than good.

I would describe the physical pain as a burning most of the time, but I can experience electrical pains, stabbing pains, and any other you can imagine. I have had a flare up since mid-July 2018 that has been getting worse. Showers are so painful, you have to work your way up to them and then it takes so long to recover afterwards–usually a full day for me. Imagine that you are on a rollercoaster and it starts to hail and they keep the ride going. That’s what a shower feels like for me now. I drop things continually as my grip is horrible. My muscles are deteriorating and I’m swollen all the time.

It physically hurts to even write this story

I have a BS in Psychology from Penn State University since 2003. I had returned to myself after a major back surgery and being disabled and addicted to opiates for two years so I know I’m mentally strong.

I was working towards my Master’s degree in mental health counseling and had all of the courses completed with a 3.87 GPA. I did my own mechanical work, my own carpentry, my own plumbing, etc. I loved to work. I am happily married and have three boys.

As the disease has progressed, my role as a provider as well as my favorite hobbies have become more and more impossible. Anxiety gets the best of me and I have frequent panic attacks which increase the pain. I was hospitalized once for being suicidal because that and CRPS go hand and hand.

The pain is never going away and really gets to me

Due to the opioid crisis in this country, doctors are scared to give out more than the guidelines, especially in Pennsylvania. They are told not to go over the equivalent of 50 mg of morphine. I’ve had a prescription for an electric wheelchair and other assistive devices since May of 2018 and have yet to get them. My ability to walk has gotten worse and I’ve fallen many times.

If you see me, I will put on a facade because it’s easier than explaining what’s going on with me. If I said I had cancer, everyone would know what is going on. I’m not saying cancer is a desirable disease, but people get it.

I have read that in the latter stages it can lead to death and read that about half of the people that get CRPS kill themselves. Research is being done all the time, but there’s no cure on the horizon. I believe that at 38 that I’m young enough that perhaps one will be found. Many have gone overseas for a cure, or so they thought, and one person spent her life savings and it didn’t work so she ended up killing herself.

Trials are being done in the United states on a drug to help,  however, it has only helped people with complex regional pain syndrome that have only had it for less than two years. I will continue to have hope for a cure. In the meantime, I need to redefine myself as a member of society somehow.

Opiate overdoses have not decreased due to the guidelines that are followed like they are laws. The CDC is not lifting the guidelines any time soon for pain patients.

These guidelines are keeping many CRPS patients from getting the relief they need and meanwhile suicide rates are going up for pain patients. There are two problems to the opiate crisis and that is supply and demand. If there’s a demand, the supply will be there.

When does a person reach a point to want to change?

I’m sorry for anyone who has lost anyone to an overdose or suicide. No parent should have to bury their child. May God bless each and everyone of you.

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The forgotten population in this opiate epidemic

16 thoughts on “Complex Regional Pain Syndrome–the suicide disease”

  1. I am so taken by your story and your journey. We have a very ill 15 year old grandchild. The last 6 months have been a nightmare
    between diagnosis and treatment . Chemo has not helped. I feel your pain and wish you will find relief and hope for a better quality of life.
    Wishing you all that will help you in your quest for better health. JT ‘s Aunt🌹🙏

    1. Lucille, although I’ve only met you once, I fell in love with your kindness then. You and Joe are awesome! Having someone so young suffer is crazy. I’m going to PM you an article that might help your grandchild on Facebook. It’s incredible. No child should have to worry about dying so young. ❤

  2. Thank you Chris for being so transparent and brave. I understand the withdrawal of opiates that doctors gave my husband very generously from a traumatic car accident monthly. Almost 8 years since his accident he still suffers from nerve damage and pain from the open book pelvic fracture he never had repaired due to infection etc. With CKD he can only take Tylenol but that’s ok as he has been off pain meds for 4 years. I know how hard chronic pain can be to live with and will keep you in my prayers. (I have RA no doubt brought on by stress!) I’m thankful you shared your story as it is going to help others. You have a voice!

    1. Aimee, thanks so much for your kind words. I really appreciate it. CKD runs in my family. My dad has gigantic cysts in his. His kidney function is still kind of normal. I never mentioned CRPS causes RA everywhere and Osteoporosis. I know I have RA, but I don’t even want to think about a bone density scan at this time. I’m sick of seeing doctors. I’m so sorry about your husband. Nerve damage isn’t pleasant no matter what. Is his kidney function really bad? Dialysis? My email is chrisandjane112603@gmail.com I can give other contact information after you email.

  3. Hi everyone when I typed this I was trying to put 15% have a serious suicide attempt or success. That’s more than any other disease. There’s way more that have ideation and are hospitalized.

  4. Thank you so much for writing this! God bless you & stay strong! I have written an article on being force tapered and have MS & Syringomyelia (cyst inside thoracic region) along with several other issues. I just found out I will be taken off last pain med very soon. I have so much to say (Anne, I may write more)! Not sure what my future holds but you described the pain perfectly. You & I are not alone. Would love to keep up with you!

    1. If you notice Liz, a link to your article is below this one. It’s very important when setting guidelines to not let the pendulum swing so wildly one way a set of people have no quality of life.

    2. Feel free to reach out to me whenever. I like to keep my brain occupied so I can help you learn about treatment options. Tapering I feel is forced on doctors Liz. If your not happy with one specialist, you are the architect of your own healthcare. Are there MS groups on the internet that perform research? I found a doctor from the RSDS.ORG that I’m going to try to see in RI named doctor Chopra that specializes in Complex Regional Pain Syndrome. He’s 4 and a half hours away and has six hour first evaluations. I know that may seem crazy, but he will go into such detail about CRPS. I also have several concurrent diagnoses as well. I will talk to you more through Twitter or email. If you need to talk to someone I also talk on the phone when I’m comfortable doing so. Gentle hugs!

    3. I’m going to be posting to Twitter very soon. You can email me at chrisandjane112603@gmail.com any time. Doctors are trying to ween a lot of people off of opiates. They tried with me too. I’m way down, but not able to go down further. You are the engineer of your own healthcare. What are they going to do when your off of your medication? I will be going on Twitter shortly. I followed you so feel free to message me. Gentle hugs my fellow pain warrior.

  5. Chris, I am speechless at your story and your unending pain. Some pain is mental and some is physical – you have both. I pray that you find relief and strength.
    I used to tell my grief therapist, when I was in bad shape after the death of my son, that at least I had my health and was not in pain. My mom suffers from constant pain from a rod in her spine, so I am familiar with the terrible toll it takes. She is on a cocktail of drugs to get through each day.
    Your story will stay with me – I hope that telling it, helps you.
    Peace.

    1. Thank you for your kind words. Mental pain is just as bad because sometimes it’s kept inside too long. I will be writing about depression for Anne as well. It was only briefly touched on here. I should have separated it out, but I thought it was important to touch on more aspects of my life. I’m sorry about your son. No parent should have to bury a child.

  6. Chris, I am so sorry for the struggles you must endure. My heart truly goes out to you. I lost my youngest son 7 months to an accidental overdose and it has been the most painful experience of my life. Thank you for sharing your story. Peace.

    1. Maureen I’m sorry about the loss of your son. No parent is supposed to bury their children. Overdoses are so common now. There’s so many drugs coming in to this country. I was on a lot of fentanyl and I read that it’s being mixed with marijuana. It is such a dangerous drug. I have my Worker’s compensation pay for narcan every time it expires. Pennsylvania has made it free, but where I have the insurance I have them pay for it rather than the state. I have a few friends that do drugs and I want it to be able to help if it’s needed. The families and local fire department know I have it as well. May God ease your suffering as the feeling of loss will be there. I will never say be glad you have other children because that doesn’t make up for the loss. Try to be there for each other. If you need to talk, email me at chrisandjane112603@gmail.com and I can give you social media information or other ways to talk.

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