When you live with fibromyalgia, you are driven to try numerous supplements, medications and alternative therapies to try and ease your suffering. Over the past year, I have tried various different things. Towards the end of last year and into the beginning of this year I took part in a case study with a Chrysalis Effect practitioner. I have seen an Alternative and Complementary Medicine Practitioner for a year now and have tried therapies such as Bowen Therapy, Reiki and Reflexology. These alternative therapies have improved my sleep issues, boosted my immune system, helped me to breathe more deeply and freely, enabled me to better cope with stress and relax more. They can help relieve some aches and pains and I find reflexology also gives me a little energy boost. I enjoy all three but favour reflexology. I continue to have monthly appointments.
I have tried eliminating various foods from my diet for a month at time and then even tried nutritional therapy for two months (adding therapeutic dosages of vitamin and mineral supplements along with following an exclusion diet). The reason I did not write an update on this is because I felt pretty terrible for those two months and my gut was telling me it wasn’t the right thing for me to be doing so I gave up with it. Maybe it wasn’t for me or maybe I didn’t give it long enough, who knows? I have also more recently tried the drug gabapentin. I guess I can say that hitting rock bottom is what drove me to try gabapentin. I personally have the view that traditional medications can be useful but that, where they solve some problems, they also create other issues and you end up in a catch-22 situation. After being put on amitriptyline when I was first diagnosed, I decided I wasn’t going to try other medication options and would instead try holistic therapies. However, my health got to the point where I desperately needed some more help.
A Downward Spiral
My health took a nose dive in July. I was struggling and I fail to stop. I kept on going and I physically crashed. I ended up being bed-bound for a couple of weeks before very slowly climbing my way back up again. Ross and I had booked a dream holiday to California in late August and I wasn’t really in a great place health wise when I went. However, I was determined to go. I gave it my all and pushed fibro to the back of my mind and enjoyed things as well as I was able to. It was really hard going though. I returned to work when I came back from holiday and, though I told myself at the time I was managing okay, hindsight tells me I should not have returned to work so soon. I started on gabapentin in October and I think it masked a lot of things. I was heading for a crash without really realising it, and well… that’s exactly what happened. I pushed myself without realising it and promptly arrived right back at rock bottom again.
I was struggling to see any improvement this time and I was scared that my illness had progressed and this was how my life was now going to be. Then an email pinged into my inbox.
A New Plan
It was an email from Alex Granados. The gist of the email was that Alex worked with a doctor from North Carolina called Bill Rawls. Dr Rawls had recently written a book called “Suffered Long Enough” about his own personal struggle with fibromyalgia and Lyme disease and wondered if I would like to read the book and maybe write about it on my blog. I decided to go for it. What that book did was ignite something in me. I wasn’t ready to give up on finding my way back up from rock bottom. I think when you are in that place you find an unbelievable amount of motivation and determination. And so, the Monday after I posted the book review I overhauled my health regime.
Supplements & Introducing Herbal Therapies
I have continued to take a broad multi-vitamin and mineral supplement and a pro-biotic. I have switched out flaxseed oil in favour of echium seed oil and, most importantly, I have introduced herbal therapies. These are rhodiola, cordyceps, reishi, ashwaganda, resveratrol from Japanese knotweed and an anti-inflammatory supplement containing turmeric, boswellia, bromelain, white willow bark, yucca root and ginger root. I also plan to add in the antioxidant alpha lipoic acid and the herb sarsaparilla. I tried to take the antioxidant NAC but it knocked me for six and my body didn’t adjust to it over the next couple of days so I stopped taking it.
I have overhauled my diet and have given up a lot of food attachments. I continue to exclude dairy (which I had been doing for six weeks prior), I eat no wheat or wheat products (plus no gluten-free alternatives), no refined sugar, only one small glass of fruit juice in the morning and no deep-fried foods. I am eating lots of fresh vegetables every day and some fruit, pulses, legumes, seeds and nuts (you need to watch out for nut sensitivities).
Everything that I eat is homemade, from scratch and I am eating no processed foods, which will be excluding a lot of preservatives etc. I am drinking plenty of water and also drink homemade ginger tea every day (honestly it’s wonderful stuff). I do not drink sodas or diluting juice. It’s simply lots of water, ginger tea and one small glass of fruit juice per day only. No alcohol.
I continue to be vegetarian, though due to all the exclusions I am pretty much eating vegan the majority of the time (the exception being a couple of eggs a week in an omelette- I’ve actually gone off hard-boiled and scrambled eggs for some reason). It may seem strict but I am eating amazing, delicious food!
The First Month
It has been four weeks since I began this new health regime and I’ll be honest with you, it takes a lot of commitment, motivation and determination. The first two weeks were pretty crap to put it bluntly. As I began to introduce each herb, one by one, at a low dose I noticed my fatigue became more pronounced. I also got a few headaches at the start. I then had the set back with introducing NAC as I mentioned above, which didn’t help matters. To be perfectly honest, I felt pretty lousy. I think part of the reason I felt so bad was the fact I went cold turkey with my diet. Sugar is like a drug. And your body craves it! My cravings for carbohydrates and all things sugary were mental!! I didn’t think I ate that much sugar so it just goes to show how much hidden sugar must have been in my diet. Anyway, like I said, when you hit rock bottom that gives you a hell of a lot of determination and motivation. I have a lot of willpower and never gave in once. I just ate more of what is good for me when the cravings hit.
After about two weeks these feelings subsided but the fatigue lingered on. I got in contact with Dr Rawls who asked whether I was drinking ginger tea or taking sarsaparilla. I had spoken to Dr Rawls on Skype before starting all this and he had mentioned drinking gallons of ginger tea. Typical me- I forgot that one! I promptly got some ginger and made myself some. It was an acquired taste at first but now I really like it, though I prefer to drink it cold. I literally felt an improvement the next day and now drink it on a daily basis. I want to add that through all of this, my mindset felt really positive and my gut was telling me that I was doing the right thing. You just have to hang in there and ride it out!
Over the past couple of weeks I have began to feel stronger. My fatigue has lessened and I am doing a little bit more than I was as I have more energy. I have built up the herbs to around half the dose Dr Rawls recommends and I will continue to increase them, one at a time, until I reach the therapeutic dosages. I am probably being over-cautious but I’d rather do that then experience a set-back. Speaking of which, I have had a couple. Both a result of overdoing things. In a way, I am viewing these as positives because it shows I felt well enough to do too much! They serve as an important reminder to build things up very slowly and that it’s not a good idea to suddenly do more on a good day.
However, I have noticed other improvements too. My skin is looking so much better and I have a better colour about me (I had broken out in spots in the months prior- I never even got spots as a teenager so I think it shows how run down I was). My stomach has deflated and is no longer sore or bloated, I have lost a couple of pounds and people have commented that I am looking less drawn and hunched in. I am walking more freely too. Overall I am beginning to feel better and my mum feels she has seen a huge improvement in me.
A Medication Change
As I mentioned above, I began taking gabapentin in October. It reduced my pain, which was great, but this came at a cost. It has made me feel nauseous, generally quite unwell and I am pretty damn sure it is contributing to the fatigue. I went back to see my doctor last Thursday and he is changing me from gabapentin over onto pregabalin. I am now gradually weaning myself off gabapentin and then onto pregabalin. Or well, that’s my doctor’s plan. Mine is a bit different after having a think about it. I am going to slowly wean myself off gabapentin and then assess how I am feeling. If I am managing pain levels okay, then I am going to forego the pregabalin. If I am not coping, I will support my body by introducing the pregabalin. I think coming off a drug might be a rocky ride as my body adjusts! Again, I am just going to hang on in there, ride it out and listen to my body.
What Am I Hoping For?
Do I believe I am going to cure my fibromyalgia through following this protocol? Well, no. I am not that naive. I am hoping to support and boost my immune system, which in turn will hopefully help my body to heal itself and regain some health. I hope to reach a point where I am in either low levels of pain or none at all (unless I over do it). I wish to be able to live my life without fatigue. However, I do not think that I can go back to what I used to do and live that life. I will have to reduce the stress I put upon my body. When I am able to, I am not planning on returning to work full-time. I will be ecstatic to manage part-time. Basically, I plan to take my foot off the pedal and slow things down and accept limitations. I hope that doing so will eventually allow me to live a life that is not dominated by fibromyalgia. I do not expect to achieve this overnight. It is going to be a long, rocky road but I am excited to see where this takes me.
If you have read “Suffered Long Enough” and are taking this journey too, I would love to hear from you. P.S If you are in America (you lucky so-and-so) and want it all set out for you, Dr Rawls has the Restore Program. Doing it the way I am is so much more expensive and complicated in comparison and doesn’t include the email support etc. I think import duty and tax would make it too costly for me to buy, unfortunately, or else this is exactly what I would be doing.
(UPDATE: since writing this post, I have began following the Restore Program by Vital Plan. Read related posts here.)