- Messages
- 71
- Location
- British Columbia
I am posting here because I want to share my journey of recovery from fibromyalgia.
There seem to be a lot of theories out there about the causes of fibromyalgia, but I want to share the one that has made the most sense for for me. This is not to say that this would be the answer for everyone, as I believe fibromyalgia could have potentially heterogenous causes and not necessarily explainable by one single causal factor. I am sharing what the cause was for me.
So I'll start by saying that I was formally diagnosed in 2010 and met all the classic criteria, but got very poor advice initially from a rheumatologist who decided to put me on Lyrica. I was already taking tons of sleeping pills and immune suppressing drugs by this time for chronic insomnia that had developed in tandem with my autoimmune disease. This was a seriously crazy drug cocktail, and it severely impacted my cognitive functioning, among other things. I was pretty much in a drugged out fog most of the time, and seeing very little benefit.
So what changed everything for me, I will describe here:
1) First I stopped everything - I was able to take 8 months of recovery time to focus on healing and I could stop pushing myself to work and go to school, which was clearly only making things worse. Relieving myself of this stress burden and allowing myself to function within my own energy envelope was essential.
2) I did manage to get on disability, as I didn't know how long this recovery was going to take.
3) Next, I managed to get in to see a sleep disorder specialist, who was VERY experienced with fibromyalgia and had a far more nuanced understanding than any other practitioner I had met.
His own theory was that fibromyalgia pain results from sleep loss over a long period of time. (Sleep issues seem to be a common denominator in most people with fibro). He explained that if you experience non-restorative sleep or insomnia for a prolonged period of time, your body and muscles don't recover from the wear and tear of daily activities. You accumulate this wear and tear over a longer period, and really start to feel it in your muscles as pain. So he said that for me it was important to recover the SLEEP DEBT that I accumulated over time. **This could have meant anywhere from 6 months, to two years of getting 1-2 hours more sleep each night over and above my norm. It was framed as a long term recovery process, that would not likely be resolved in an overnight fashion.
4) I was able eventually able to pinpoint one of main causes of my insomnia - something called copper overload. I tested positive using more than one method. http://www.courtneysnydermd.com/blog/copper-overload-too-much-of-a-good-thing3 It's essentially an incredibly stimulating metal, and revs up your adrenal and nervous system activity during the day making it hard to relax and fall into sleep. We also determined I was running off of adrenaline every day, because my energy was so low most of the time (from inflammation and autoimmune condition) that I needed an adrenaline boost just to get me through the day - but this prevented me from being able to fall asleep.
5) I took Amitryptaline for one year - and this did in fact help me recover the sleep debt. This drug makes it very difficult to wake up in the morning, which in my case was a good thing. In the first few months I was getting 11-12 hours sleep per night, which is ultimately what I would attribute most of my recovery to. The pain gradually began to subside over several months and I was able to do more and more activity. This was not an overnight dramatic recovery, it was gradual and took time and patience. This drug was a short term solution, and it worked, I am no longer taking it now and I am completely off of sleeping pills and immune suppressing drugs.
6) I changed my diet - no more inflammatory foods (sugars, grains, legumes, soy, dairy, gluten, preservatives). And I can report that I lost about 30 lbs doing so, and did feel a whole hell of a lot better. The other added benefit, was it greatly reduced the severity of my autoimmune condition. Longer remissions, and way less serious flare ups (previously was wheelchair bound, not anymore!).
7) I went for regular acupuncture treatments at communinty acupuncture clinics, because it is much cheaper and I could go often (up to 2-4 times per week). Acupuncture is amazing - and I can speak highly of the NADA protocol on the ear. This helps with releasing trauma from the system, detoxing etc... and it just puts one into a relaxed bliss state. See http://www.acupuncturetoday.com/abc/nadaprotocol.php
So that is what I have to report, I am now pain free and I am not wheelchair bound and a much greater degree of normal has been restored to my life. I still have an autoimmune condition and am being treated for copper overload, so that is the next step in my healing process. Plan is probably going to be to take the diet to the next level, and try a Ketogenic Paleo diet.
If any wants to share their experiences please do - but please note I am not trying to imply that any of the above would be the answer for others with fibromyalgia. Only that this experience certainly raised questions in my mind about some of the potential underlying causes (plural) of fibromylagia pain. I believe that for me it was about chronic sleep loss.
There seem to be a lot of theories out there about the causes of fibromyalgia, but I want to share the one that has made the most sense for for me. This is not to say that this would be the answer for everyone, as I believe fibromyalgia could have potentially heterogenous causes and not necessarily explainable by one single causal factor. I am sharing what the cause was for me.
So I'll start by saying that I was formally diagnosed in 2010 and met all the classic criteria, but got very poor advice initially from a rheumatologist who decided to put me on Lyrica. I was already taking tons of sleeping pills and immune suppressing drugs by this time for chronic insomnia that had developed in tandem with my autoimmune disease. This was a seriously crazy drug cocktail, and it severely impacted my cognitive functioning, among other things. I was pretty much in a drugged out fog most of the time, and seeing very little benefit.
So what changed everything for me, I will describe here:
1) First I stopped everything - I was able to take 8 months of recovery time to focus on healing and I could stop pushing myself to work and go to school, which was clearly only making things worse. Relieving myself of this stress burden and allowing myself to function within my own energy envelope was essential.
2) I did manage to get on disability, as I didn't know how long this recovery was going to take.
3) Next, I managed to get in to see a sleep disorder specialist, who was VERY experienced with fibromyalgia and had a far more nuanced understanding than any other practitioner I had met.
His own theory was that fibromyalgia pain results from sleep loss over a long period of time. (Sleep issues seem to be a common denominator in most people with fibro). He explained that if you experience non-restorative sleep or insomnia for a prolonged period of time, your body and muscles don't recover from the wear and tear of daily activities. You accumulate this wear and tear over a longer period, and really start to feel it in your muscles as pain. So he said that for me it was important to recover the SLEEP DEBT that I accumulated over time. **This could have meant anywhere from 6 months, to two years of getting 1-2 hours more sleep each night over and above my norm. It was framed as a long term recovery process, that would not likely be resolved in an overnight fashion.
4) I was able eventually able to pinpoint one of main causes of my insomnia - something called copper overload. I tested positive using more than one method. http://www.courtneysnydermd.com/blog/copper-overload-too-much-of-a-good-thing3 It's essentially an incredibly stimulating metal, and revs up your adrenal and nervous system activity during the day making it hard to relax and fall into sleep. We also determined I was running off of adrenaline every day, because my energy was so low most of the time (from inflammation and autoimmune condition) that I needed an adrenaline boost just to get me through the day - but this prevented me from being able to fall asleep.
5) I took Amitryptaline for one year - and this did in fact help me recover the sleep debt. This drug makes it very difficult to wake up in the morning, which in my case was a good thing. In the first few months I was getting 11-12 hours sleep per night, which is ultimately what I would attribute most of my recovery to. The pain gradually began to subside over several months and I was able to do more and more activity. This was not an overnight dramatic recovery, it was gradual and took time and patience. This drug was a short term solution, and it worked, I am no longer taking it now and I am completely off of sleeping pills and immune suppressing drugs.
6) I changed my diet - no more inflammatory foods (sugars, grains, legumes, soy, dairy, gluten, preservatives). And I can report that I lost about 30 lbs doing so, and did feel a whole hell of a lot better. The other added benefit, was it greatly reduced the severity of my autoimmune condition. Longer remissions, and way less serious flare ups (previously was wheelchair bound, not anymore!).
7) I went for regular acupuncture treatments at communinty acupuncture clinics, because it is much cheaper and I could go often (up to 2-4 times per week). Acupuncture is amazing - and I can speak highly of the NADA protocol on the ear. This helps with releasing trauma from the system, detoxing etc... and it just puts one into a relaxed bliss state. See http://www.acupuncturetoday.com/abc/nadaprotocol.php
So that is what I have to report, I am now pain free and I am not wheelchair bound and a much greater degree of normal has been restored to my life. I still have an autoimmune condition and am being treated for copper overload, so that is the next step in my healing process. Plan is probably going to be to take the diet to the next level, and try a Ketogenic Paleo diet.
If any wants to share their experiences please do - but please note I am not trying to imply that any of the above would be the answer for others with fibromyalgia. Only that this experience certainly raised questions in my mind about some of the potential underlying causes (plural) of fibromylagia pain. I believe that for me it was about chronic sleep loss.
Last edited: