Living with CRPS

Thoughtful Thursday: Living in Pain

Thoughtful Thursday: Living in Pain

Not all scars show. Not all wounds heal. Not all pain can be seen that someone feels.

       If you read my last blog, you will know that I have Complex Regional Pain Syndrome “CRPS”; I am in a constant pain about 95% of the time. The pain causes my insomnia, anxiety and depression to worsen. Unfortunately for me the pain management cycle I am on is not very successful for me. I take Opiates 4 times a day, (every 6 hours) and through out the day I am constantly smoking medical cannabis. Some might think that is excessive however it doesn’t relieve me of all of my pain. The medicine only decreases the pain. I have day’s when even with the pain meds I can’t get out of bed, and I avoid getting up to go to the restroom because walking hurts so very much, when I do get up I have to depend on my walker and sometimes I can’t get up without Nate’s help. Then there are very rare day’s when I can move around just fine only using my boot with or without my cane so I can cook, do laundry and do some of the things that make me happy.

       For me, when I say I can’t live without oxycodone and medical cannabis its because I genuinely would not make it through the day, I would not make it through the pain when there is no other way to alleviate it. Every day I wake up with agonizing nerve pain. Nerve pain has no care for the plans you have, it doesn’t care what time of day or night it is, if you have plans to go to a movie, a restaurant, family event or even a doctors appointment. Nerve pain has no consideration that I cannot not walk, shower, eat or sleep without using pain meds. I am dependent not addicted to opiates and medical cannabis.

       A very common misunderstanding of people with chronic nerve pain especially those with CRPS utilizing opiates or cannabis  is that people think “you’re addicted” because you can’t see pain, you don’t look ill like someone with cancer or lupus, you can’t see the cast healing a broken bone. Nerve pain is internal, people make judgement because the only way for them to know your sick or accept you’re in pain is if your writhing in pain, crying or screaming but even then, when they see you at you’re worst they think you’re “faking it” just to get drugs or attention. Outsiders see the need for the medication as addiction. Maybe because some people abuse the system, some people do it to get drugs, others to avoid having to work. I know in my life there are people who think this of me, who think I am ingenuine. I would never choose to live in this pain. To give you an idea of what having CRPS is like, theses are the symptoms:

  • Pain that is deep, aching, cold, burning, pins and needles and/or increased skin sensitivity
  • Allodynia, that is, pain from something that should not cause pain, such as the touch of clothing or a shower
  • Hyperalgesia, that is, heightened sensitivity to painful stimulation
  • Dramatic changes in skin temperature, color, or texture
  • Decreased ability to move the affected body part
  • Swelling and stiffness in affected joints.
  • Difficulty coordinating muscle movement
  • Unusual movement in the limb

       This is what I experience on a daily basis, there are times where it is more than one symptom at a time. Most days I find myself avoiding changing my pants, or even put pants on all together not to mention at times I completely avoid showering due to the extreme sensitivity of my skin. Most of the days if I walk or even stand I get “pins and needles feeling”, it is not like a regular foot that has fallen asleep, it feels like dozens and dozens of 6 gauge needles start poking into my toes, movig to my arch, then heal and eventually up my entire leg to my hip. Other times, I have complete numbness in my leg until a burning sensation develops on my foot and calf, then my leg starts to feel as though a torch is being held to my skin slowly burning my skin off.

       So yes, I am dependent on pain meds. Yes I have to take them every day, but what differentiates me, and others with chronic pain is that I absolutely hate taking all of these pills. I hate not being able to fully care for myself, not tending to my hygiene. I’ve lost a bit of myself, I’ve worked since I was 16 so I’ve always “pulled my weight in my relationship” I’ve always taken such pride in my work ethics so much so that many of my employers and coworkers have referred to me as a workaholic so being that I can’t work because of pain and pain meds I’ve lost a bit of my identity. I’m only 28, I’ve not advanced in a proper career, I’m not married, haven’t had kids and I would never purposely choose to or trade in my life to live in constant pain. Would never choose to be essentially on bed rest for the past 10 months, I would never choose to take Oxycodone and medical cannabis just to make it through the day. I would never choose to spend my days being drowsy, nauseated, slurred speech, difficulty finding words, fatigued an in constant pain. Taking these medicines takes away from my quality of life. Needing theses modifications is not addiction, its survival.

       If you have someone you know with CRPS, frankly any type of chronic pain, fibromyalgia, rheumatoid arthritis, lupus, etc. Try to put yourself in their shoes. Please be more compassionate to those you know and even to those you don’t. When you encounter someone throughout the day who seems to be going through a lot,  don’t forget to remember how easy it is to be compassionate. Remember that even though you can’t see the pain, doesn’t mean its not there. People who are in constant pain learn how to smile through the pain, look happy and seem as though everything is OK because we get used to being in pain, it turns into our new normal. Forcing a smile is our way of coping, our way of trying to feel as though we have a normal life.

       To this I have to recognize and say thank you to some individuals I failed to thank or appropriately recognize previously. First and foremost, without my amazing, caring and selfless boyfriend Nate; without you I have no idea how I would be able to have gotten through these past 10 months. He has been my strength when I have none, my laughter through my tears, my heart when I feel as though I’m lost, and has stood by my side through out one of the most difficult times in my life, making me feel safe and supported when I feel completely alone . There is no way I would ever be able to thank him enough, to show him enough gratitude for how thankful I am for him every day. He has been my dream come true, a man I never thought I would find or even deserved. He has helped me find my inner confidence and inner strength to get through this. I question every day how it is possible to have found not just a wonderful boyfriend but my person, the one that I can go to with anything, my best friend, my partner in life. Not only has he become the love of my life but his family has welcomed me with open arms, never once judged me for what I am going through, especially his mother. She has been such a huge support through out all of this, helping me keep my head up high, helping me find faith and staying positive when I needed it most. 

       Speaking of mothers, I don’t care if your 14, 32 or 45 when you’re sick, and scared sometimes all you want is your mom. She makes you feel safe, when you are at the most vulnerable of times. For some people this isn’t the case, but for me I grew up with always having a close relationship with my mom, while I will admit she has stepped back and allowed Nate to step in more but no matter the situation, I know I can call her and she will be there. Whether it is showing up at the ER at 2am because I was rushed there in the middle of the night, to taking my phone call in the middle of the day when I am panicking or writhing in pain. It has been so hard going through this with out my dad, he would have been the 1 person in the whole world whom I am close with that would be able to relate to my situation. With out him here I am even more aware of how much I still need my mom at times, and I am so unbelievably grateful to have her be so supportive, so caring through out this health crisis I’ve had. 

        Next, this is something I haven’t talked about is I am so thankful for my Therapist Mary. Over 2 months ago I started seeing her to cope with everything I am going through, this health process has caused me to come to terms with things from my past, help me learn new techniques to cope with my stress, grief, depression, anxiety, and learning and being diagnosed with PTSD. Each day I apply the new coping mechanisms she has given me, through my counseling with her so far I have become to feel less heavy with the emotional pain that has held me down for many years. I know some people may be wondering my need to bring this up, my need to share the fact that I am in therapy but the truth is I feel that I have nothing to be embarrassed of. The matter of the fact is, there are too many stigmatisms against getting treatment for mental or emotional help. Personally I think its completely insane for someone to be judged by the fact that they need therapy. If someone doesn’t like the fact that I have to use it, that I have trouble coping with the things that are going on in my life, they are worth cutting out of it. If anything I think when people identify that the things going on in their life are to difficult to handle on their own they should feel proud of the fact that they went for professional help instead of turning to drugs, alcohol, etc. I know personally, if I didn’t start to get help I would have gone absolutely mad. I have so much gratitude for Mary, everything she has taught me has helped me improve portions of my quality of life. 

       Lastly, I want to discuss my faith. Throughout the years I truly questioned my faith, found it difficult to believe in God, when you grow up in a house with a father who is terminally ill you look for someone to blame, you look for someone to put your anger and hate on,  for me that was Religion, that was God. Over the years I have grown into my own spiritual relationship with God. For me I believe that my relationship with God is exactly that, its between me and Him, no one else; not with the church, not with religion. I’ve learned I don’t need to express my faith by attending a church but I have also found that my opinions on church itself are bias based on my personal experience with people who believe they are “holier than thou”. I have learned that you can go to church and not believe you are better than others. For me, I haven’t found a church that I feel is right for me, and I don’t know if I ever will, but I know that I don’t have to go there to pray, to believe. For me, I have learned that its not Gods fault I am in this pain. I am not vain enough to believe that he would go out of his way to cause me pain or prevent it, for me God is not there to prevent things from happening to you, He is there for me to lean on when I am weak, find strength and love through Him. 

       There are many other people who have helped me get through this crisis, I know I haven’t mentioned every single one of you and please don’t think that my lack of acknowledgement is a lack of appreciation. To anyone who has given me compassion, checked on me, cared for me through out this horrific journey, I am truly grateful for the kindness you have shown me. It is my hopes that one day if you are ever in need, that I can be as compassionate to you has you have been to me. Without you, I wouldn’t have gotten through this as much as I have so far. 

Thank you 



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