My Story of CRPS, Complex Regional Pain Syndrome

My story of CRPS, Complex Regional Pain Syndrome

I have had complex regional pain syndrome (CRPS) for almost eight years. I don’t remember exactly when it occurred. I would have to go back to the first podiatrist I saw in 2010 as he told me I had a sprain. The sprain occurred after I had a bad few days of really awful spasms in my foot. The spasms were so bad that it caused my foot to turn outward and even though I manually turned it in to stop the spasm, it turned right back. I was in agony afterwards. The meds, quinine and Zanaflex that I was taking did nothing to help these spasms. I had a nerve injury in my leg nine years prior and the same nerve injury four years before. I won’t go into that because it is another complicated syndrome.

I don’t have the typical presentation of CRPS. I don’t have the discoloration, temperature changes, swelling, etc. I just have pain and a little bit of swelling that causes my veins to pop out on my foot when I am in a flare. It makes the half of my ankle that is affected look bluish. I went to many doctors in the Boston area as well as in Boston. I must have seen specialists of all kinds, orthopedics, ankle surgeons, podiatrists, neurologists, physiatrists, etc. No one could really tell me what was going on. My neurologist that I was seeing for migraines and my nerve injury thought I had CRPS and so did at least two physiatrists that I saw. My former PCP was not convinced as he thought it was some mechanical thing going wrong with my foot/ankle so he sent me to more doctors that didn’t have a clue what was wrong with me.

During this time, I was working two different but the same type of jobs. I was working as a lab assistant in research and in the clinical labs. I worked anywhere from 40-50 hours a week. When my foot and ankle were bothering me, that kind of hindered my work. When one of the physiatrists sent me to a physical therapist to be evaluated for an AFO, I chose one job as moving around the two labs was difficult. I chose the clinical lab as I have been there the longest. But that was short lived as I couldn’t stand the pain when I came home. It was so bad and nothing was working except the opiate meds that I was taking, which I couldn’t take while working because it affected my cognition. Eventually, I had to put in restrictions as just walking around the lab was getting harder and harder to do. Because of my nerve injury, I couldn’t do certain things and then with my foot/ankle being impaired it made things harder. I ended up on forced medical leave and had to apply for long term disability and social security disability. Fortunately with all my medical records, I got both.

The pains that I had at first had changed. The pain is always changing during a flare. If my foot got cold due to the weather or even from the AC in my room, I had to wear thermal socks even if it was 90+ outside. Then the burning would happen once I got warmed up. It was terrible. I had to take one pain med for the physical pain and then another med for the burning pain. As recently as last night, I had several different pains at once. I had the feeling like a wire was around half my ankle, strangling it; a coring feeling that something round was trying to scoop out my last two metatarsals (foot bones) in my foot; there was stabbing along the tendons from my ankle down my foot in an L pattern; and the last three metatarsals were being played like a xylophone. There are other pains too. I sometimes feel like my foot is being crushed, the “glob”, which is an area of my ankle that has muscles, tendons, and ligaments are just throbbing. My bones ache terrible. My malleolus (ankle bone) was also being hammered severely last night. That is the worst pain that I have ever felt. I do not like bone pain because I have to take a strong pain pill for it and that pill can give me a lot of side effects, mostly constipation.

For some reason, only half of my ankle and foot are affected from the middle part outward. The inner part doesn’t hurt at all, though sometimes my big toe will hurt. No one has a reason for this. One doctor has said that it is a nerve injury and now my current PCP thinks that is the case despite my bone scan saying I have CRPS. It is very frustrating to deal with pain like this that just keeps you up at night or wakes you up in the middle of the night because your pain meds have worn off. All this week I have not had good sleep and have gone to bed between 4 and 6 in the morning. I tend to sleep all day, or most of it. It’s hard planning stuff because of my pain. I don’t have much of a social life. I don’t go to family gatherings or parties because I don’t know how my pain is going to be. Just taking half a step is enough to set off a flare. Or any type of movement can set it off. There have been many times I have been sitting in my bed, playing on my laptop and moved a little to get comfortable and wham, I am hit with pain. Another things that CRPS likes to do is after fifteen minutes of lying down or so, my foot or ankle will “explode” with pain. All I did was lay down. That was my crime. This is a terrible condition. I have thought about suicide many times during a flare. Fortunately, while in a flare, I am unable to walk so going through with something deadly is not going to happen. I tend to put it off till the pain goes down, but usually the morning comes and I no longer feel suicidal. I live another day.

I take small doses of short acting opioids throughout the day to manage my pain. My PCP wanted me to see a pain doctor so after four months, I did. He didn’t think I should be treated with pain medication. According to his notes, which I requested, he says I just need physical therapy. I was in physical therapy for three months. My flares were worse and the stress of going to the appointment and trying to keep up with home exercises was causing me more pain. I decided to quit PT until I had adequate pain control. I am still waiting. A month ago I last saw my pain doctor. He said he need to collaborate with my PCP and my psychiatrist then get back to me. I am still waiting. I honestly don’t think I will be treated with pain medication. In his notes, he has stated that he does not think pain meds are for me, though doesn’t state the reason. I am too exhausted to care. I pretty much decided to continue with what I am currently taking. I have made the decision to end my life at a specific time. No doctor wants to help me because the opioid epidemic is all based on lies and deceit. More chronic pain patients will end their lives or die a sudden death like Dr. Forrest Tennant has written about. The suffering will continue as long as the DEA continues to threaten doctors and keep them from being doctors.

6 thoughts on “My Story of CRPS, Complex Regional Pain Syndrome

  1. simplywendi

    I am so very sorry you are experiencing so much pain. Life can be so difficult at times but your willingness to share your stories helps other people. Thank you.

  2. Leslie Robin Kassal

    I think I understand G Collerone.

    Just know that I hear you in your pain and in the twistedness of your suicidal thoughts.

    🙋‍♀️🙋‍♀️

  3. Leslie Robin Kassal

    Your description of what you live with, leads me to know what a courageous person you are!

    Thank you for sharing your pain.
    I cannot imagine how terrible it gets…..

    💜💜🙋‍♀️🙋‍♀️

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