Monday, November 6, 2017

My Story with CRPS on World CRPS Day


Happy November 6, 2017! Today is my husband and my monthly anniversary and we celebrate 186 months being married today. More importantly, it is world CRPS day.



CRPS stands for Complex Regional Pain Syndrome. There are cases that date back to the Civil War and the disease/condition probably goes even further back. CRPS was called RSD (Reflex Sympathetic Dystrophy) until the 1990s and so older doctors commonly refer to it as RSD.

You can clearly Google if you are reading this blog so I won't proceed to tell you what defines RSD/CRPS. I will give you my account with this condition.


In 2011 I had a slight issue with my knee after running. I was 31. I stayed off of it and iced it for awhile and seemed fine. In 2012 I was walking a few miles and suddenly couldn't walk anymore due to pain. If I put weight on my knee, it would explode in pain. I did all the things people do and saw a doctor. An outpatient surgery was performed and the doctor saw my plica was causing the issues. You may not have heard of a plica because it is such a small part of the knee. I hadn't. 


My knee healed but I was more aware of my knee on and off. Another surgery was performed and this time the same doctor saw I had a meniscus tear. Another common thing. I healed and I walked for months on my knee. I made it into 2013 before having more issues.




I saw a second doctor who was older and (I thought) wiser. After the rounds of MRIs, another surgery was performed. The remaining part of my meniscus had torn and I had a slight tear in my ACL. This doctor gave me a full leg brace to wear for a month and I started having issues with nerve pain. The brace was removable and so I would sit and loosen it for an hour or two a day. It felt amazing.


The second "wiser" doctor said I should join the Y but I knew something else was wrong. I got another opinion and was diagnosed with CRPS. The average person with CRPS sees 7 doctors before being told they have it so I am truly one of the "lucky" ones.



It is here the story gets a bit foggy and if you want to see all I went through, feel free to search CRPS on my blog. I blogged through most of it.


The pain spread and I tried a lot. Some days you don't have the energy to try and just wish you were dead. I don't mean that in a suicidal way because I know suicide is nothing to take lightly. I just wished I wasn't existing. I would tell my 6'6", 225lb husband to lay on me because it would help me feel something other than pain.


Most people have felt nerve pain some time in their life. It feels like that sharp pain that shoots through a limb or area. To have it almost constantly is overwhelming. My brain was being overwhelmed by the constant "yelling" of my body.

My gorgeous sister's wedding in 2015. I'm the one sitting.

In 2015 we moved to Florida to be closer to specialists. We had dreamed of moving to Florida for years anyway so this wasn't a big sacrifice.



I changed my diet to include only certain fruits, veggies, nuts and seeds. I lost weight. We purchased a reclining wheelchair. I took a lot of strong pain pills. I withdrew from those pain pills. I took more pain pills. I was in bed a lot. I didn't drive anymore and a trip to the doctor left me with more pain so we limited any trips.



I tried Ketamine which is being used for CRPS. Ketamine broke my mind for awhile and left me with panic attacks.




And here is where the story improves. A year ago, November 2016, I tried a group of medications that was being used in Europe. Please know I am NOT saying these medications will help you but they started to help me. However this story isn't about my meds.

My body felt like it was getting more oxygen and the nerve pain stopped shouting at me. It was incredible and it still makes me cry to think about my past self being in such pain.

I now drive short distances after the FL medical board granted me my driver's license. I walk through stores. I get myself off the toilet and take showers without needing help. I eat more. Do I still have pain? Yup. Do I have pain that constantly overwhelms my brain? Nope.


2017, age 37

I have had so many people send cards, pray, encourage and message me. I had someone reach out and say they not only believed me but were "Team Mellissa". I have had a lot of help over the years and I have little bubbles of joy in my soul to have those people in my life.

CRPS doesn't have a cure. Yet. It has a lot of treatments that doctors keep throwing at it though. So, if you are reading this and have CRPS or were just diagnosed with CRPS, keep trying but only when your body allows it. Don't push too hard.

Happy November 6. I truly hope you make it to November 7 without too much pain.



2 comments:

  1. Hey Melissa, I absolutely love this blog. You are really an inspiration. I am a study coordinator for a site in Charleston, SC that is doing the Neridronate trial. They've briefly opened back up for screening. Here is their clinicaltrials.gov listing: https://www.clinicaltrials.gov/ct2/show/NCT02972359?recrs=ab&cond=Complex+Regional+Pain+Syndromes&cntry1=NA%3AUS&state1=NA%3AUS%3ASC&rank=1

    We are still looking for people that are interested in participating. The information about the study is listed on the clinicaltrials.gov page. Our recruitment department for our site in SC can be reached at 843-789-3707 if anyone would like to learn more or ask questions.

    Keep up this wonderful, inspiring blog. I know of many patients that read it and it has really helped them to know that others experience similar symptoms, challenges, questions and frustrations.

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  2. Hi Melissa! I'm a long-time reader of your blog. I'm so happy to see your life improving from the low points you've experienced. You've got such a big heart and a beautiful soul. You are truly an inspiration. I wish and pray for more healing and health for you. I've been meaning to comment to tell you this but also I'm wondering if you've ever looked into flaxseed oil as a potential aid to heal your damaged nerves? It might sound crazy but flaxseed oil is an excellent source of omega-3s. Omega-3s reduced your potential for nerve damage and can help heal damaged nerves. If your do have nerve damage and you take it, you can feel it "conduct" nerve activity but that also means it's healing you. I took it for years for it's other benefits and then sustained some nerve damage and it's been helping me. Just thought I'd share. Google "flaxseed oil and nerve damage" if you want to know more and talk to your doctor. Anyway, I just thought I'd share! :)

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Thanks for commenting!