Chronic Illness Advocate tells of her Scepticism & ME/CFS, Fibromyalgia and POTS recovery success

Hi, I'm Claudia and I wanted to share my experience with the ANS REWIRE program in my recovery from ME/CFS and fibromyalgia. I was sick for 33 years. I was diagnosed about 13 years ago, so it took me a really long time to get diagnosed, and I had a gradual progression until that time. And at that point, I had a pretty severe crash, and stayed at a plateau for about 13 years.

And I'm a former audiologist, turned artist, since I was sick. So my diagnosis was CFS and fibromyalgia with Hashimoto's thyroiditis. I also had POTS and , I think my worst symptoms were my earliest symptoms and they were mainly neurological. So I had blackouts, periods where I just, I'd come to in a strange place and not even know what had happened for the last several minutes.

I had a lot of migraine pain, cognitive issues, memory, short term memory issues, some language problems. I had trouble not only with word finding, but I had some episodes where I couldn't speak at all. , I would try to speak and either one silly nonsense sound would come out or no, nothing would come out at all.

So those were really scary, , and really I never found out what was going on with those. Some of my other Pretty severe symptoms. And most, , interfering symptoms were all over body pain, which was pretty daily. For at least the last 13 years, probably closer to 20. Great amounts of exhaustion, , greater than fatigue.

So, sometimes just this sudden onset of feeling so heavy that I couldn't hold my body up anymore. And I had to just either sit or lie down. Thank you. Or just an overwhelming feeling of exhaustion and feeling like my limbs were really heavy. I always would say it feels like someone put a vacuum inside me and sucked my life force out.

So, that was there most days. If I had done any kind of physical activity or cognitive or social activities, definitely I would have that as a relapse symptom. And it could last for days, sometimes a week. I spent a lot of time on the couch, mostly. I was in a push crash cycle pretty much the entire time.

So I would push myself to do this exercise or activity, and then I would crash for a few days or a week. Some of the things that I didn't do any longer were a lot of the sports and athletics that I used to do. I gave up, obviously, my job, my career. I, I tried a lot of things once a week. I had a myofascial massage therapist who kept me moving.

I tried acupuncture in cycles. Chiropractics, physical therapy. herbal medicine, holistic medicine. I went through a protocol for Lyme disease with which I was also diagnosed in 2012. I tried some steroid treatments but not a lot. I never really took pain medications or sleep medications because I also had some clinical sensitivities.

So I didn't tolerate any kind of medication, so I really kept what I took to a very minimum. Oh, I also saw a doctor of Chinese medicine one time, and she put me on an IV protocol that was some sort of cocktail mix of high dose vitamin C with B12, and I don't even know what else was in there. And it was supposed to be six It's weekly treatments, but after the third one, I honestly thought I was going to die.

So I told her I just couldn't do it. I also took lots of supplements over the years, various things that were touted as successful in treating the disease. And, you know, everything that I did had a small impact in my well being and I could feel things sort of ticking away, but nothing ever, pushed me over the top.

I was always back to my baseline somehow. Oh, also I practiced yoga regularly and , meditated pretty regularly for short sessions and I added Tai Chi in later. , so I, I tried a lot of different things. But I always felt like there was just something missing. And I watched the literature a lot. I was an advocate, so I was very involved in what was coming down the pipeline.

And I was hopeful, but I, you know, having tried so many different things, that although had some small success and some that didn't, I always felt I was just pounded into the ground when I would try. I went through so many doctors, medical providers, specialists, oh my gosh, I, I saw 22 specialists before I got diagnosed.

 And so, you know, I felt beat up most of the time. Leading up to the program, I think I was, I was in the best place I could be for this to come across my desk. And I think this is important. I think that the stage was set perfectly for me to be open to the idea of recovery at that moment. , and that's when the program came across my desk, as a request to share the book through my advocacy.

So I started researching it because of that. I wasn't really seeking out a recovery program at the time. But as I started digging into it, I realized that it was the first time, well, first of all, it was the first time I had ever heard anyone talk about recovering from ME CFS or fibromyalgia, , that wasn't a snake oil kind of thing, because some of those had crossed my desk before, and you can tell, and they do, this was different, I read the first downloadable book, Discover Hope.

And that led me to some recovery videos, and I watched a few of those, and then I ordered CFS Unravel on Amazon, and I couldn't wait. This was all in one day. I downloaded the Kindle version and started reading it, and so I talked to my husband about it a little bit, and we agreed that, , first of all, it didn't cost any more than I'd spent on supplements in any given year, so the risk Monetarily, it was very low.

 So basically, it just took a little dedication on my part to commit to this program and, , put everything else aside for the time being, even if it took a year, even if it took two years. I didn't care. I wanted to make this happen. I, I went into it with a lot of skepticism, which is natural given the state of the disease and so forth.

 But as I started reading and doing, I, the skepticism turned into hope. And then I could see things actually changing. And, then I realized, holy smokes, I'm actually recovering. , it was shocking. It was a very quick recovery for me. It was three months. I started the program on March 1st of this year, 2018.

By end of May, I was finished with the videos. And I was completely recovered. 100 percent recovered. , so fast that my own brain had a very difficult time wrapping around the idea that this was happening. Luckily for me, I had already initiated nutritional changes that were on par with the program.

So that part was not difficult. I already had movements. I already did some things like Tai Chi and Qigong. Things that I think already help to settle the autonomic nervous system a little bit. So, you know, I, I think what was important was the, the, the way that this program is laid out, the timeliness of each step is important.

Each one sets you up for the next, and I think that following each recommendation was important too, even if some of them were uncomfortable, which some were, , they were necessary. It was not an easy thing to do at all, , it took a lot of dedication, but, , it certainly paid off. I mean, it Three months and, and I'm 100 percent recovered from a disease I had for 33 years and thought I would never, ever get better from.

So, I, I would say that while I was sick for the last 13 years I was probably functioning at about 60 percent of what I had prior to becoming sick. And now I'm at 100%. I can do anything now. I, I don't, well. During the program, I remember probably halfway through, I had this realization that, oh my gosh, I've had three days consecutively where I felt good, normal, healthy, all day long.

I've never experienced that in that 33 years, so that was a completely new feeling for me. I realized at some point that I would go a full day. Very busy, very active doing things that normal people do, you know, going to meetings, going to the grocery store, doing a physical activity, taking care of the house chores, all of those things that people do, and at the end of the day, I still had regular amounts of energy and I could still go socialize or go, , do a physical activity if I wanted to go hike.

 It didn't matter, I could still do it and I still felt fine. Those moments really let me know that, hey, this is, this is definitely healthy. This is what healthy feels like. It still hits me at the most odd moments at the grocery store. When I'm walking around the grocery store, I just get very sentimental.

I get really emotional because I feel like I'm no longer carrying that giant, heavy, laundry bag full of sickness crap. Excuse my French, but That weighty feeling that's there with you all the time when you're sick. I don't have that anymore. I'm light and, and free and it's just a liberating feeling. I can't explain it any better.

It just, it feels so, free and feels good. , I don't think there's anything I can't do anymore. I guess what I would say at this point is the impact that it's had on me and my family is, It's invaluable. My husband says welcome back at least once a week. , he says I, I am vibrant again. Other people have told me that as well.

 I am myself. I'm happier for sure. Definitely more confident. We can do things together again. The connection is back. Connecting with my daughter better because we're able to do things more. In a connected way, I feel so much better about my future prospects. I have some. I have that before, so I can actually think ahead on, you know, what's in store for me ahead of today.

It's, it's, it's such a huge impact. I just would recommend that if, if anyone is considering. This program, to just start investigating the ANS REWIRE program, get the book, see if that's available, read the book, watch some recovery videos, , I, I know some people think, oh, you know, they're not as sick as I was, so it won't work for me, or, I have too many responsibilities, I can't do that, but, you know, if you take a year, if it takes one year of your time, it's worth it.

It's worth setting aside some things to just do that for one year if the outcome is 100 percent recovery. So I would just recommend, you know, look at yourself in the mirror and choose which world you want to be in, where do you want to put your focus and just do it.