Living with Complex Regional Pain Syndrome
**Nate took a moment to snapped a few pictures of me today, of a 2 raw moments when my pain was at a peak of discomfort**
A few weeks ago I received a sigh of relief when I finally received a diagnosis for my pain but at the same moment I was devastated with the answer. I was diagnosed with something that is commonly referred to as the “Suicide Disease”. This is something that I have had 2 Doctors speculate, family members suspected but hoped and prayed it wasn’t true. When I recieved the news, even though it was suspected, I always prayed it would be something else, something easier to treat, something with better odds of remission. Something that has a cure, so that way I could resume my life. Instead I am 28 years old diagnosed with an illness most doctors don’t know how to treat. I try to remain positive knowing the fact that they have found it early, but for me positivity doesn’t come easily. When it comes to emotions, when it comes to problems I tend to avoid optimism and instead I focus on knowledge, statistics, that becomes my coping mechanism as well as my worst enemy; long with fear and doubt.
I have CRPS: Complex Regional Pain Syndrome previously known as RSD: Reflex Sympathetic Dystrophy Syndrome., specifically Type II CRPS, because this is something that is chronic, and I will likely suffer with it for the rest of my life.
Most of you probably have no idea what Complex Regional Pain Syndrome is, that is if you haven’t stopped to google it already.
“CRPS, formerly known as RSD Reflex Sympathetic Dystrophy, is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of the victims it spreads to additional areas.”
You can find more information on what CRPS is, treatment options and resources at: CRPS: RSD Hope
To paint the full pictures for those of you who don’t know the beginning of my health crisis started nearly 10 months ago, in September 2017 I ended up having Emergency Surgery on my foot to remove 2 golf ball size masses on my Left foot near my arch. I was told the unidentified mass on my foot was Myosotis, meaning that a muscle in my foot was necrotic/dead, very inflamed, calcified and infected with an unidentified fluid in my foot. Which ultimately led to 3 separate surgeries over a 6 month period resulting in the abductor hallucis muscle being removed from my foot. The muscle which will never grow back and likely require me to use an assistive mobility equipment such as a cane, walker and at the worst times even wheelchair for the rest of my life and additionally, I continued to have a lot of nerve pain and the doctors weren’t sure as to how much nerve damage was done. It was expected that the nerve pain would decrease and my mobility would increase. Unfortunately, the pain and my mobility continued to worsen despite my persistence to see specialist after specialist, diligence to my therapy exercises there was nothing that would alleviate my pain. Yet still I have only received a partial answer for my health crisis. I still have no idea why my muscle died in the first place, no idea why this has happened.
The past 10 months, I have been on house arrest, the only time I leave the house is to go to medical appointments, and could probably count on 1 hand the amount of times I have been physically able to go out socially. Even though to go to the grocery store I need an electric cart, and to go to the movies or dinner I may need to use my cane or walker but if I have to use my wheelchair I just stay home. Despite the fact that I worked for a company that distributes wheelchairs I can’t seem to acclimate myself with the need to use it, I can’t invision myself as someone who needs to rely on it because on the times I feel so much pain that I need it, I feel as though I shouldn’t go out, I shouldn’t bother others with my pain. I don’t want to make myself the center of attention for sudden change. Further more I have a new appreciation for the clients I helped because this world is not wheelchair friendly. Try going to a restaurant and then needing to use the restroom, or even getting a decent table with out having the staff irritated with you. Try going out already feeling self-conscious about the fact that you’re in a wheelchair, but paranoid you’ll see someone you know and they’ll have questions. Questions you don’t want to answer because you know that you will be judged, or scrutinized. Despite what your battling, people will undermine your pain, they down play it because if you’re in pain there’s no reason to smile. They think if your in pain you should be screaming, crying or even worse you should be home because you have no business going somewhere. The difference between the pain of a broken ankle and the pain of Chronic pain is that, unfortunately with Chronic pain you get used to hurting, you get used to the fact that your new normal is worse than anything you ever imagined. I have spent countless hours thinking that I was crazy because doctors could not figure out why I was in so much pain. I’ve had Doctors tell me I need to just get over it, its only pain. I’ve had people think I am faking it only to get drugs while they are totally unaware of the fact that any pain meds I get or even medical cannabis only marginally decreases my pain, it does not alleviate it. I’ve had people who catch me on one of my “good days” where at best I can walk around with only my boot on my foot that think I am faking it to get out of doing something, or working, or going out but all along they have no idea that the only reason I am standing, able to walk is because I am severely medicated. I have my own personal pharmacy not just of pain meds but 8 other medications I have to take to get through it. People who don’t know that on those “good day’s” It isn’t even a “good day” its a “good few hours”. I’ve had people look at me and think I am fine because nerve pain isn’t something you can see, like a broken bone, there is not a cast to identify that your hurt, people don’t see the pain so they assume it doesn’t exist. I’ve had people in my life doubt if I was actually in pain, assumed I am only in it for the drugs, that I am doing it for the attention, I have had people who I once held near and dear to me, believe that I have been untruthful. In those moments that is when I am the most grateful for Nate; he has been my rock through out this but despite the fact that I am not alone, despite the fact that I have Nate, My mom, a few close friends, and family members for ever 1 supportive person there are 15 nay-sayers that knock me down; who know how to hit me where it hurts. When these type of people interject it is impossible to not feel lonely, it is impossible not to think you’re the only one, that you’re in this alone.
Even with that in mind, there is nothing lonelier than when you find yourself dealing with chronic pain, even the people you think you are closest to pull away, they don’t understand why you’ve changed because the problems are internal. So many people stereotype you, they think that you’re a liar, lazy, a user, pathetic, or weak. They question your morals, ethics, values and truthfully if someone has not experienced chronic pain, especially chronic nerve pain they have no idea what that pain feels like, it is impossible for them to put themselves in your shoe’s if they have not experienced it. The truth is anyone dealing with chronic pain, or any type of nerve pain to be honest would never choose to live this way. No one would ever choose not to be able to sleep because you can’t get comfortable because even something like putting a blanket on your leg causes pain, you can’t wear certain clothes, all because it causes you to feel as though thousands of needles are going through your skin. No one would choose to avoid attending to self-hygiene because taking a shower or even trying to relax in a bath tub at times causes such a severe amount of pain. The instant that even the most lukewarm of water touches your skin it feel as though its being burnt off. No one would choose to inflict their self with pain that you have no control over, pain you have no ability of stopping, that starts at any time and lasts as long as it feels like it. Pain doesn’t follow a schedule, pain doesn’t care if it’s the holiday’s, if you need to work, if you have a family function, if its your best friends birthday. Pain has its own plans.
I remember being 12, 13…16,17, etc. and not truly understanding the pain my Dad was going through, I remember being a child and thinking it wasn’t that he couldn’t do things with us its that he didn’t want to. After spending so much time in pain already, I know that in time frame wise I am not even close to how long he was in pain for, but with what I’ve experienced I have nothing but an immense amount of respect for my Dad, he is the only person I can think of who would be able to relate to my pain, who would be able to comfort me, to guide me through out all of this. I find some strength in knowing he is watching over me, and I feel as though even though he is not here with me now he would be proud of how I have handled myself.
In the process of accepting the fact that I have CRPS, I have also had to recognize and accepting the fact that now I am medically disabled. It has been challenging enough as it is not being able to work, loosing my job, being unable to provide for myself, to pay for my bills, I have lost my identity. As someone who is diagnosed with Anxiety, Depression and PTSD I was already fighting my own battle, because battling my emotions while living with chronic pain, while also learning I will have a life long disability and learning there are only 2 recommended treatments for me, is one of the most challenging tests I have ever been through, through out my entire life.
The 2 treatments available to me are Sympathetic Nerve Blocks or a Spinal Cord Stimulator. There is no guarantee that these treatments will work. Once I can get on Medicaid, due to the fact that this has caused me lose my job, my health insurance; I will begin a 6 month trial of Sympathetic Nerve Blocks injected into my Spine. It is the hope that this will decrease my pain and if successful there is a small chance of continued treatments putting me into remission, if it does I will likely have to return for more treatments when my symptoms start to flare. If it does not put me in remission but decreases my pain, which is the most likely option I will end up getting these sympathetic nerve block treatments around every 6 months for my entire life. From my understanding is I would receive at least 3 injections during a 6 month period. My Doctor says that during the first 6 months he doesn’t expect my pain to decrease more than 30%. In the event that the 6 month trial of Sympathetic Nerve Block doesn’t work his recommendation is that I go on a trial for the Spinal Cord Stimulator, which if that is successful then I would likely have a spinal cord stimulator implanted into my body similar to how a pace maker is implanted however it would be implanted on my spine.
Nate and I have done a lot of discussing over the past 4-5 months, and have decided (especially now that we know my diagnosis) that we would like to relocate to North Carolina. A huge reason as to why I have had to wait so long for a diagnosis is due to the major lack of health care providers in New Mexico. In the event that the Sympathetic Nerve Blocks work , I plan to continue treatment with a new provider in North Carolina, in the event that they do not work prior to committing to a trial of a Spinal Cord Stimulator and the risk of having surgery on my spine, I intend to seek a Secondary or even Tertiary option in North Carolina, and seek every avenue available to me prior to making such a huge decision.
The only thing that seems to be keeping me sane the past few weeks in focusing on our plans, on our future. He will be joining the Fire Department, while I continue to focus on my health. Imagining, and planning where we will live, the house we will be buying, the fact that we are totally committed to each other and he plans to propose soon, getting married, starting our life together. Focusing on the future is the only thing keeping me from going completely crazy in the present. I continue focusing on how blessed I am to have met a wonderful man who has not only stepped up in my time of need but who has taken care of me, emotionally, and so many other ways more than any other ever has in my entire life. Focusing every day on thanking God for sending him to me; praying to him to send me strength to get through the rough roads ahead. I know that the next year is not going to be easy, regardless I will have 6 months of a sympathetic nerve block trial, moving to North Carolina to find a new health care team. Adjusting to the realization that because of the 4 letters CRPS, I am classified as disabled, but focusing on believing that my ability is far greater than my disability. This is just the 1st entry on my Life Long battle with CRPS, I intend to continue to blog my story, share my experience and possibly even start vlogging it all.
I know this isn’t going to be easy, but I sure as hell won’t be giving up.
If you are interested in understanding further what people go through with CRPS, check out these videos on YouTube.