Hello again friends, this is the details of how I have been cured/am being cured of CRPS.
Let me start with a little background. About 8 years ago, I started to have pain in my feet. I have always been an avid distance runner, so I was used to a certain level of pain every day. But it was a good healthy pain, one fom pushing myself and pounding my feet on the pavement. But one day, when I was almost home from a run, my left foot started to hurt, and really hurt. It was not a good, healthy pain. I remember thinking at that time, "I will never run again." How I knew that, I'm not sure, I just knew. So I went to the doctor and was prescribed Vicodin, at the lowest dose. It kept that pain away enough that I could continue with working and going about my daily business. But soon, my medication needed to be increased, and increased again. The pain had also moved to my other foot, then my lower back. My doctor had me on the 10/325 Vicodin 6x day, and this was not touching the pain. I could no longer run, no longer even speed walk, and the pain was intensifying. I was visiting every doctor I could and undergoing every test that I could. It took three years for a doctor to finally diagnose me with CRPS. This diagnosis was later confirmed by two other doctors - a CRPS specialist, and my pain management doctor. Fast forward 8 years after the original pain, and I was on the same Vicodin plus 30mg Oxycontin 3x daily. This was not enough, but my pain management doctor did not want to increase my medication regardless of how I felt.
I was not able to walk, stand, or even sit up for more than a few seconds. I could no longer care for myself except for brushing my teeth every morning. (My husband has been caring for me plus a few other friends). I was preparing to take my life while I still had the physical ability to do so. I could only lie in bed or on the couch moaning. I could not listen to TV or even write emails or texts. The pain was just too much.
I had started to look into Neridronic Acid Infusions (aka Neridronate). It seemed as though there was only one study out there, but supposedly, it worked for 100% of the CRPS patients. It was the only hope I had after trying everything we have here in the US with only minimal, temporary success. The problem was that I cannot speak Italian, and had no clue how to get the treatment even if I did.
I found a place called "Medical Travel Italy". I do not work for or represent them, and I am receiving nothing from them for mentioning their name. Their website said that they took care of all of the details, and the price included the 4 infusions. So I submitted my medical records and required doctor's diagnosis. I was approved. It was expensive, and we did not have that much money on-hand after this stupid disease. (You all know what I mean). But with the help of friends, family, and two fund-raisers coordinated by friends and family, plus a loan, we were able to go. I had to fly first class with my husband beside me since I was wheelchair bound, could not sit up during the flight, and needed him with me on the plane. So that just added to the cost. But we arrived in Italy in the begining of March and I received 4 infusions of the Neridronic Acid. They say that it can start making you feel better within the first few days, and continues to work and improve your pain for the entire year following. I started to feel noticably different within the first two weeks. I actually drove myself to my pain doctor's appointment the first appointment after the procedure, something I had not done in years.
Over the next several months, I had a few significant setbacks. The first was two simultaneous sprained ankles. Then two months later, re-sprained them with a fall. The Italy people said that I could resume activity as I felt I could. But I disagree. I think the best thing to do is to REST, and do not have any nerve injections or any other procedures until all of the pain is gone. But that is my opinion.
So now, in the last week of December, it has been 10 months since the infusions and I think I would have been healed by now had I not had those sprains. But I am driving. I am not only sitting up, but I am walking around the house. I go grocery shopping. I drive again. I sit up and not lay down during my resting time. (Remember, I could not even sit up long enough to eat a meal before and I had lost almost all of my strength from atrophy.) So this is big stuff!! I reduced my pain medications down to the Vicodin plus 10mg Oxycontin 3x daily, and I will again reduce and eliminate the Oxycontin shortly, then the Vicodin.
I am achy. My ankles hurt. But not CRPS hurt. It is normal pain, and we all know there is a vast difference between pain and CRPS pain. I am perspiring, but I am thinking that is from the meds and not the CRPS. (The sweating actually stopped altogether between the time of the infusions and my sprained ankles).
But I am HEALED. I just have to get off of these last medications to know exactly the amount of pain relief I am going to see. I stopped taking the antidepressant and the immunosuppressant. I just have the narcotics to get off of now. And I believe I will.
If there is anyone out there ready to commit suicide to end the suffering, I hope you read this first. And if you don't have the money to get to Italy for the treatment, PRAY. Pray for friends and family to fund your healing. If you don't believe that is possible, keep praying. This Neridronic Acid is being tested by the FDA here in the US and is "fast tracked" as are Cancer drugs to make sure it becomes available asap following Phase III testing, which is what it is now in.
Keep holding on. There IS hope. There IS healing. You can be cured of this wretched disease just as I am. God made a way where there was no way. If He did it for me, He can do it for you. And at the very least, know that this drug, I firmly believe, is going to be available in the US soon. I know it cannot come soon enough. But keep holding on. Don't give up.
I never thought I'd be sitting here writing this message, but here I am. I just hope that this message reaches someone who needs to hear it. I hope it helps someone. God bless.
~ Morgan