Weird things about CRPS: What to expect if you or a loved one have CRPS

Hey guys! Sorry for the long hiatus since my last post. The CRPS on my left side spread rapidly, and I was busy juggling work and trying to schedule my second DRG surgery to add a lead to cover my left foot and ankle amidst severe pain. I thought a good topic would be what to expect from CRPS. If you have it, know that you are not alone. If a friend or family member has it, it is impossible to comprehend their pain, but you can at least sympathize and be patient with why they might do the things they do.

  1. CRPS is one of the most painful conditions known to medicine.
    You cannot possibly imagine the type or level of pain and the daily fight of a CRPS warrior just to exist. I try to understand that people are just trying to be helpful or relate to you on some level when they say things like, “I have sciatica/plantar fasciitis/insert some other condition here,” or, “Have you tried [x,y,z]?” I have found that quoting pain studies and relating the condition to more common diseases is helpful at getting the message across, such as, “They believe CRPS to be more painful than childbirth, trigeminal neuralgia, cancer, diabetic neuropathy,” or, “The pain from CRPS is so intense and unyielding that it is nicknamed ‘suicicide disease’ for having such a high suicide rate for a non-mental health condition.” Kind of grim, but it usually helps the other person understand what you are going through and not unintentionally trivialize the excruciating pain of CRPS.
  2. People with CRPS may need to cancel plans last-minute.
    Usually the pain from CRPS is moderate-to-severe on a good day. If having a particularly bad day, a person with CRPS may need to cancel plans or withdraw from events due either to being in excruciating pain and/or having no energy left from battling said pain all day. It’s important to be patient with a friend or family member with CRPS and not take it personally. As a person with CRPS, you may want to thank your friend for inviting you and state how much you would like to be included again when canceling plans. You may lose friends because of this unpredictability, but if they cannot make an attempt to be sympathetic, they probably were not a true friend anyway.
  3. The pain of CRPS is different from person to person and possibly even in different parts of your body.
    I experienced such a profound difference in the type of pain between my right and left feet and ankles that this may have contributed to the delayed diagnosis/awareness of the spread into my left foot, which is why I had to have a revision surgery in May rather than placing leads in both my left and right L5 dorsal root ganglia during the original surgery in January. My right foot suffered an intense burning as if it were on fire 24/7. My left foot and ankle was more of an excruciating cramping/squeezing sensation and unique type of hypersensitivity called allodynia. My left foot was so hypersensitive to touch and temperature that I could only wear flip flops that didn’t touch certain parts of my ankle. Even the water from the shower was extremely painful, and I had to discontinue swimming altogether. These stimuli caused excruciating pain, followed by numbness after a minute or so, followed by an intense throbbing and long-term pain crisis. And a CRPS pain crisis takes FOREVER to calm down back to baseline.
  4. Unless you have severe chronic pain or CRPS, don’t try to offer advice.
    Listening and offering moral and social support is the best thing friends and family members can do. I know it is meant well, but we have a tendency to try to offer a solution or a response during a conversation. Don’t. I promise that unless you have the same illness and are recommending some obscure method, you are not saying anything that the person with CRPS hasn’t heard and probably tried. Some of these things that can be helpful are an anti-inflammatory diet (gluten-, soy-, whey-, and dairy-free), OTC pain meds, RX pain meds, yoga, meditation, alternative medicine, etc. Chances are that if we’re under the care of a good pain specialist and/or have read and researched our diagnosis, we have tried any and everything we can to alleviate the pain. Just offer a listening ear and a shoulder to lean on. Another HUGE pet peeve of mine is when somebody says something along the lines of “everybody has something”…I’m sorry, but some people’s battles are bigger than others. Losing your job, going through a divorce, moving across the country sucks, but the devastation of normal, expected life events is nothing compared to dealing with the loss of a child, a terminal illness diagnosis, or as mentioned above, battling the most painful disease in existence.
  5. You may suffer muscle spasms which extend throughout your whole body.
    I literally just dealt with this a few days ago. The cascade started by a particularly long day at work for which my body wasn’t ready after significant muscle atrophy and weakness from 2 consecutive spinal surgeries with very little full recovery time between. Initially my back muscles spasmed, but then I ended up with a full-body lockup that had to be treated with morphine and some very strong muscle relaxants. I found out that this is not uncommon in CRPS. I recommend having a treatment plan in place with your pain specialist so you don’t find yourself having to go to the ER because you can barely move and your whole body is shaking and jerking, almost like seizure activity.
  6. Finally, you will feel like giving up.
    Don’t. When every day is a battle, you WILL feel depressed sometimes. You will get sick of fighting. You will get sick of hospital visits, especially if, like me, all previous treatments had failed and you lose all hope. Please, never give up. If your current doctor says nothing else can be done, try to find a second, third, fourth opinion. Read blogs and forums. Join support groups for people with CRPS. Tell your colleagues and friends the extent of what you’re going through and explicitly mention when you need extra social support. My goal with this entire blog project is to share the story of how I battled severe, intractable CRPS that was unresponsive to all traditional treatments and only experienced a maximum of 25% pain relief on heavy opioid and non-opioid pain medications and am now 90-100% pain-free after having a new, breakthrough surgery. My hope for a relatively normal life is back. My future plans are back. Most importantly, I don’t wake up and go to bed every day wondering how much more time on Earth I have knowing that each day will be just as excruciating as the last. These feelings are normal, but please find something to rejuvenate your fighting spirit. Never lose hope. Never give up.

Until next time,
B


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