Being cured from CRPS AFTER 7 years
 

Dear friends, have hope! I have been fighting CRPS for 7 years now. I was to the point at which I could no longer walk, stand, or even sit up to eat. My time was running out.
Now I am walking and moving and driving again! On less than half my meds! I am being cured!!!

It is late. I will be back on tomorrow to give the details.
Just know, there IS hope. There is REAL hope for you. You can also be cured. It is just a matter of time.
Don’t give up hope! I’ll be back on tomorrow. Don’t give up! You can be well again!!
Nighty-night and see you here tomorrow.
xoxoxo,
Morgan

Being Cured of CRPS After 7 Years (Details)
 

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

Morgan, while I am happy that you have found relief. There is absolutely no cure for RSD/CRPS. You cannot be “healed” from it. You can obtain remission, but that is not the same thing as a cure. I achieved remission early on, but when I came out of remission, it came back with a vengeance and I am now full body. I have 28 years with this. Not trying to argue with you, just correcting misinformation.
Nanc

Also if you cannot go to Italy, you may be lucky enough to get pamidrondate infusions which are close to neridrondate according to the Italian doctor I communicated with a few years ago. I have not been able to get them, so I cannot confirm their efficacy, but you should at least know that a possibility exists.

Interesting.

I am glad there is that message of hope, but in my case, I have chronic CRPS, and am not getting better whatsoever. I have been living with this for almost 24 years and it stays the same year after year.

I hear ya
 

Hello Nancy,
I have read the same information and I also thought it could not be cured. I think the statement needs a disclaimer. I really think the statement should read, “it is not curable as of yet, with the FDA approved medications today.”
Nancy, I truly believe, and have corresponded with others who have gone to Italy for these same infusions. These individuals who have suffered years with this wretched disease, like you and I have, state emphatically that they are cured.
Nancy, since my treatment, I have sprained both of my ankles -twice. But what I feel from them is the feeling of two sprained ankles. I do not have CRPS pain in my ankles. If I still had CRPS, I would surely feel that unmistakable, unbelievably horrific pain. But I do not.
I completely agree with you that CRPS is currently not curable. But I am certain that this treatment is the cure. It WILL be a disease that is curable in the USA once this treatment gets approval.
I posted this message to let others know that the cure is out there. It is in Italy. Not everyone can fund the treatment there, I know. But I am just hoping that my message of hope and healing will reach someone in time. Someone who may be thinking of ending his or her life, just like I was. It is coming. It IS out there. I am proof. Just hold on a little longer. Life can begin again for each person readig this. Don’t lose hope.
I pray that you will be one of the first to get this treatment so you can come back on here and share your success story with us all! Take care. I will have you in my prayers tonight.
xoxo,
Morgan

What are they doing in Italy that is different? Bisphosphonate infusions? Because I have had those and they did nothing for me.

What is "the treatment"?

What does it consist of?

That's what we need to ask ourselves.

I have had CRPS spread on me in 2008 to my shoulder/arms/hands/fingers - entire limbs. And I am getting calcitonin shots for those. They help "curb" it and so in my hands it is NOT a disability and it is manageable, but a cure it is not, it is a good medication as it helps keep it under control (and it is the only thing that works for me).

But UNFORTUNATELY for my legs it does NOTHING. I have had this disability for almost 24 years this coming September. It won't budge.

I have had it all, the Dutch treatment (DMSO, Acetylcysteine, vit.C), the Belgian treatment (calcitonin, bisphosphonates).

That's the state of affairs for me.

It is clear to me that Morgan is doing better, but if she's still taking all those pain meds and not up and at it, then she is doing better, and the language "cured" doesn't fit, at least in my opinion.

This is my first post, but I have been suffering since my late 20s and I am in my 50s now. My RSD likely started in my late 20s, much as she described, in my feet, and now, like so many others, it's systemic (body wide).

We all hear of these extremely expensive places we can go (I was actually invited to Italy, they even called me, same place Morgan went to, but, my doctor reminded me that if it didn't work, and in many cases it doesnt, I will have invested the few precious resources I have, for nothing). It is a FACT that these treatments only work for a number of people, and only work so much, at that, and they are extremely expensive. Here in the USA, you can now get the Ketamine infusions for around 12 grand, but they do good for some and not anything for others. These are the facts.

Large hospitals that have pain centers in them like Mayo and Johns Hopkins are our best and brightest, so far, here in the USA, and none of them, at present, are doing any of these infusions. I've talked with the doctors who head up these pain centers to find out why they arent, and they tell me, because they only help a limited number of people, are expensive and time consuming, and they aren't curing anything.....

I am encouraged that these and other treatments are being researched, because God knows we need a cure for RSD, but to this day, I don't know what to ask my insurance company for (I have a rep. assigned to me who will help me try to get fast tracked to relief, because I got to the point I was suicidal and needed some change....the change I got was a new dr. with new treatments and meds, and for today, it will have to work)....but again, there isn't anything out there for us to ask for, that we all know works, so, imo, we are still learning and looking for a cure.

I'm happy for the OP. Neridronate therapy is working for many apparently. I had pamidronate years ago, a little over a year after CRPS started. Appropriate regimen. Very close to the new one. It didn't help.

I have had the Pamidronate offered, and I am holding it out as I feel right now I am managing and I don't want to "Waste" a treatment I may need more if things suddenly advance.

Neridronate is being tested in Italy. This is a very real potentially beneficial treatment. But, as with the pamidronate, it can work very very well for some and not at all for others. The doctor who offered me the treatment was very clear, most of his patients have huge pain relief with the pamidronate. But not all.

Pain relief is NOT a cure. It is an effective treatment. The researchers doing the clinical trials are hoping that the neridronate will be even better than the pamidronate and we can all hope that they are right!

But there is no cure. There is remission.