CRPS Type 1 Sufferer 

             It’s been a hot minute since I posted. I’ve done a lot since posting. I had gone a few steps forward learning to live life with limitations. I was able to plan life around pain and halfway manage it.

            However, nursing school had started again. Yesterday, I had my first clinical. The pain progressively got worse throughout the day, but settled down a bit when I got home. Whelp, this morning is a different story for sure. I’m laying on my couch getting repeatedly shot at and stabbed it with fast fasciculations /muscle twitches. It’s as if I hadn’t just had a few months or downtime. It’s as if I got this condition yesterday. I’m trying very hard to not scream in agony, but it feels as if I’m dying. It’s feels as if someone is trying to kill me and I’m dying, but I just won’t fully die. My body just won’t give in, so I’m just sitting here in rapid shooting and stabbing leg pain. 

         I had an ortho appointment on Monday and they gave me the official CRPS Type one diagnosis. I’m starting gabapentin today and god I hope it helps at least SOME of this pain goes away! It just won’t stop today. I refuse to give up on my goals even if that means I have to suffer the next 8 months in nursing school. I can’t give up now. 

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Fighting for Answers 

       I’ve spent the past few months making several trips to chiropractors, ortho doctors, general practitioners, and now physical therapy and neurology to try and get some sort of answers and pain relief. It’s been such a long journey and still on it awaiting some answer as to why I have such bad nerve pain in my leg. Today, I had an ortho followup appt to see how the prednisone pack and physical therapy had helped.

        First thing, they sent me to get more X-rays of this stupid leg. I’ve have multiple X-rays and MRIs done on this crap leg with no answers, but some inflammation/joint effusion. Of course, I followed their orders as told and of course, nothing is broken. 🙄 The doctor tried to elicit my pain, but to no victory. It’s very frustrating living your life in pain, but when you actually need it to be painful, it’s no where to be found. However, he used a tuning fork and almost instantly, my leg started twitching. So there’s something. He said I need to get a nerve conduction test done to see what’s up with the nerve and that neurology would be calling to schedule. I asked for a nerve pain medication like gabapentin and he claimed my symptoms were too severe to do any good, but could be something to try. However, he prescribed a few weeks worth of volteran (sp) instead, so I’ll see if that helps any.

        Fast forward a few hours and neuro calls to schedule. Their first available appt in NOVEMBER 7!!! Seriously!! I was at the beach and went ahead and scheduled it not being able to think much. When I got home, I panicked. Another 4 months of this crap before I can even get a clue of what’s wrong? I called back begging for an earlier appt and the lady claimed there wasn’t one. A few minutes later, I got another call from the original lady who said I could get on September 6….. TWO MONTHS EARLIER! Of course I took it, but still, it’s crazy to me how backed up these specialties are. It’s crazy how I can randomly be scheduled months apart from each other. I’ve learned that you have to advocate for yourself to get any assistance. I realize I’m poor and there are a lot of other poor people with health problems, but I still have a right to be seen in a timely manner and treated for my condition. Most people genuinely don’t care. They want to do their job and go home. Very rarely, do I find someone who half way cares about helping my condition. Currently, that person is my PT. He is so sweet and wants to do anything to help. The only slightest clues I’ve gotten have been from him and I’m thankful for him!

      I’m in pain every damn day and for the past week, it has really flared up for whatever reason. I’m thankful for my PT. I’m thankful to get an earlier appt into neuro. I’m trying so hard to be positive about this. I hope I will receive some sort of answers with the nerve conduction tests and hopefully they can get me on a medication to manage it or treatment to heal it. This journey has been crazy and it’s not over yet. I’m lingering around rock bottom, but I’m still here.