Pyroluria: My 10 Tips For Managing It
Managing the symptoms of Pyroluria (also commonly known as Pyrrole Disorder) can be really difficult, and so to be in touch with others who share the challenges can help.
Facebook groups are an obvious place to be able to find support, and so I’m a member of a couple of Facebook support groups for Pyroluria sufferers.
I find the Facebook groups to be great places to learn new information, as well as helping me to remember that it’s not just me (because sometimes it feels like it is…).
These online support groups are also great places to ask for advice, or learn about the experiences of others who are going through the same stuff.
After reading the posts of others with pyroluria and hearing their experiences, I often find myself feeling grateful for where I am.
Reading about the experiences of others, and how difficult their journey has been, and/or continues to be, makes me realise how fortunate I am that I’ve managed to ‘manage’ my body for all these years. For the most part, I’ve been able to lead a reasonably normal life – or at least look like I am… 😉
Many of the people in these groups, whether diagnosed with Pyroluria or not, are really suffering and confused. I feel huge empathy for them and totally understand where they’re at.
From The Joy Of Pyroluria Diagnosis To The Misery Of Treatment
It’s common after a diagnosis of Pyroluria to initially feel ecstatic!
Finally there is an answer….
Because it’s really common to have spent many years searching for answers and feeling like a hypochondriac, or wondering if you’re just going crazy.
That elated feeling on diagnosis is experienced because finally we’ve found out why we have all these bizarre problems.
But the elation is often short lived.
After we’re diagnosed we start the treatment – Pyroluria supplements. Simple enough it seems. They’re supposed to make us feel better, but often we find ourselves actually feeling worse.
Then everything just becomes confusing, frustrating and sometimes more difficult that it was before we started on the supplements.
I’ve seen a lot of people in those Facebook groups quite right here.
I get that.
I’ve been there and to be honest, I still go there at times.
But I’m happy to say that in my case, things are slowly improving.
I’ve been blessed with an inquisitive mind and a seemingly innate ability to put the pieces together, allowing me to manage my symptoms fairly well and reduce my suffering when need be.
I’m pretty good at taking care of myself, and although when I’m feeling good I often get a bit slack, I’m also good at getting myself back on track when I need to.
So I thought I’d write this post sharing my top ten tips for managing the symptoms of this disorder. These are strategies and products that I use in my own life that have helped me (often for many years).
These things on my list help me to manage my mind and my body, and help me to continue to live my life in a way that works. They help me to get through each day when getting through each day is a challenge.
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My Ten Tips For Managing Pyrrole Disorder (Pyroluria)
Because these deficiencies often become chronic they cause symptoms, and those symptoms in turn, then cause or contribute (due to additional stress) to other nutritional deficiencies. Therefore most of us with Pyroluria take a lot of supplements.
I was possibly a little more fortunate than some as I noticed improvement in my symptoms relatively quickly (within the first couple of months).
Before I began supplementation, I was finding it increasingly difficulty to talk to people (even my family) without extreme inner tension. This would manifest in a way where I found myself feeling desperately like I needed to get away due to an intense, but not easily describable feeling of fear or intense tension inside my body.
As you may imagine, this made life, and making a living, difficult to say the least and I lived in a constant state of extreme stress. I had very real concern that it would take over my life completely. 🙁
What happened for me was that the pyrrole supplements improved this inner tension enough to make a noticeable difference fairly quickly, and because of that, I was willing to stick out whatever other issues the supplements caused.
There are still issues I’m dealing with, due to copper detox and other changes, but I’m willing to keep going because going back isn’t an option for me.
So when I began my treatment for Pyroluria, I took compounded supplements that were prescribed by my doctor in Australia. However we moved back to New Zealand, I’m switched to taking individual supplements, mainly because I haven’t found a doctor here to go to and it makes it easier to experiment with changing what I’m taking.
I order most of my supplements from Iherb. They’re the cheapest source of quality nutritionals that I’ve been able to find, and the supplements that I’m taking seem to be working for me.
This is the supplements I use with direct links to the products at Iherb:
✅ Healthy Origins Alpha Lipoic Acid – (Removes copper and heavy metals)
✅ NOW Food Blackcurrant Oil – (GLA)
Please note: I haven’t posted my dosages here as they’re not going to be relevant to your or your children. Seek out the assistance of a qualified naturopath or medical practitioner who has experience in treating Pyrrole Disorder for best results.
2. Eat A Clean Healthy Diet
This means, as much as possible, eating a clean, wholefood diet. Avoid chemical additives in food and read labels.
What I personally have found (which seems to be the same for most others with pyroluria from what I’ve read) is that we don’t ‘do’ junk food. We need to eat real food to feel well. Clean, home cooked, real food as much as possible.
I believe we need to avoid gluten and a grain free diet may be a good choice for us (although I personally seem to be able to eat rice without any obvious issue). A Paleo style diet may suit best, and again from my own experience and that of others, a vegetarian diet may make things worse due to a lack of zinc, and an abundance of copper found in plant based foods. (2020 update – I’m not sure about that now…)
3. Use The Gaps Diet To Heal Your Gut
I can’t express to you how important this one thing is. For me this is the one ‘thing’ that made a huge difference for me.
Zinc deficiency can cause leaky gut syndrome and contribute to all sorts of digestive problems. Combine this with stress induced irritable bowel, and resulting intolerance to various foods, and you have a real recipe for misery and ill health.
There is so much research now on the gut-brain connection. Pay attention to that! Your gut health controls your brain!
I was on various versions of the GAPS diet for over two years, starting off on bone broth and meat only. I initially removed ALL fiber from my diet for a couple of weeks, and then gradually introduced a little back into my diet at a time as advised in the GAPs book. The full protocol and information about how and why the GAPs diet is in the book, Gut & Psychology Syndrome by Dr Natasha Campbell, creator of the GAPs diet.
My suggestion for anyone wanting to do this to read the book.
I find that many people say they’re not committed enough to do this. That it’s too much hassle…? Seriously?…. If I can make bone broth and consume it every day for 18 months while traveling around Australia in a campervan with an outside kitchen, battling flies and dust…
The thing is that if you have Pyroluria and you have leaky gut, then it is essential that work towards healing your gut before you can heal the rest of your body. If you want to reclaim your health, I believe you need to focus on this one thing!
Just ask me – Was it worth making bone broth for two and a half years… In a campervan, in the dust?…
Yes! I don’t think I would have had the fast improvement with my supplements if I hadn’t.
I am extremely grateful that I’d been on the GAPs diet for over two years prior to my pyroluria diagnosis.
4. Avoid Chemicals Where Possible
It seems that many of us with Pyrrole Disorder have messed up methylation pathways, and so it seems that we don’t detox as well as we should. So we need to be easier on our bodies and avoid chemicals as much as possible to feel well.
I know I do!
I’ve been sensitive to chemicals for a lot of years, and although I’ve noticed that since I’ve been taking my supplements I don’t seem to be as sensitive, I still avoid them where possible.
I’ve used baking soda and white vinegar for cleaning for years, and when other products are needed, I buy as safe as I can.
I’ve used low tox cleaning and personal care products for years.
Update: I now use doTERRA essential oils. They’re great for cleaning. Plus their personal care products (hair care, skin care etc) are low tox and just beautiful to use. If you’d like to know more about buying doTERRA products either head to this page or feel free to contact me.
I’ve carried a bottle of Rescue Remedy in my handbag for years, and I’ve gone for extended periods where I’ve used it on a daily basis.
If you’ve not heard of Rescue Remedy, it’s a flower remedy (similar to a homeopathic remedy) that helps to calm you down….
6. Harkers Stress Tonic
Since we moved back to New Zealand, I’ve fallen in love with this stuff. It’s an awesome mixture of herbs that help to combat the effects of stress in the body. I’m not sure if you can order it overseas. I buy it locally here in New Zealand. It’s available from health shops and online.
I take it when I’m travelling or feeling stressed and it absolutely makes a difference for me.
7. Emotional Freedom Technique: EFT or Tapping
EFT stands for Emotional Freedom Technique. I use it every day and don’t know how I would have managed the last couple of years without it. It is truly a life-changer once you get the hang of it.
I’d played with EFT a few years ago with not much success, but then I signed up for a course on using EFT, and even though it was about tapping for financial issues, it taught me so much about how to use EFT for everything in my life. I’m happy to recommend it if you’d like to learn more. You can find it here: http://bit.ly/tappingsolutionfinancialsuccess
8. Move Your Body – Exercise
I’ve exercised most days of the week for many years, and at times I’ve been an absolute exercise addict!
I know that regular exercise has helped me over the years. It helps lots!
However, I found that I had to stop exercising completely when I started on supplements. I started to find that even light exercise would cause me to sink into a huge depression the next day. Eventually I realised it was probably copper dumping.
But now, 18 months into treatment, I’m happy to be able to say that I’m getting back into some walking, and even a little weeny jog here and there and I’m enjoying it.
I’m able to sometimes feel good after exercise which is awesome. But it doesn’t take to much to overdo it and when I do, that low mood returns. I’m finding it’s still a bit of a juggling act, but blessed to be seeing some light at the end of the tunnel and looking foward to being able to get back to more consistent exercise.
9. Meditation Helps Pyroluria
Meditation has proven benefits for stress and health. I meditate sporadically…. I need to make it a ‘habit’. It does become quite addictive when I do it regularly, but for some reason it still manages to drop off my daily to do list.
I’m also not very good at it – yet! But still I feel the benefits when I do do it. 🙂
Practice apparently makes perfect... Does that count for meditation? I’m sure it does.
There are many books on the subject and this book ‘How to Meditate’ by Pema Chodron is on my ‘to read’ list!
If you’ve never tried meditation, give it a go. (Using essential oils such as Arborvitae or Sandalwood can really help.) And if you’re a meditation junkie already, good on you!
2019 update. I meditate most days now. 🙂 I made this guided meditation for abundance video recently. I hope you like it.
10. Lifestyle Changes
And coming in last but definitely NOT least is basic de-stressing lifestyle changes. Of course it depends on your lifestyle, but these changes might include a change of occupation, listening to music more often, creating chill time, reading books, and just doing stuff you enjoy.
If it makes your heart sing – do it!
For me over the years I’ve gone from full on ‘career path’ to jobs with less responsibility, then to casual work where I could say ‘no’ if I didn’t want to work, and then more recently a change back to being a self employed massage therapist. For me it’s also about finding time to read, paint and exercise.
I try to remember to focus and make time for the things that make me happy, because after all that’s what life is about – being happy!
And my motto now is ‘take the easy road’.
I’ve realised that if it feels too stressful or hard it probably is. These days I choose to give those stressful things a miss as much as I possibly can.
Because when we take the path that makes us feel good, the path that gives us joy and allows us a peaceful mind, then our bodies and our lives just work out better. It’s just the way things work.
P.S. HI have a 2018 Update: When I wrote this post, I found ten things that had helped me manage my Pyroluria symptoms and live a happier, less anxious life. (how convenient! It was a nice even number 😉 ) But I have one more thing to add that’s come into my life and that helps to support me and my emotions massively – essential oils.
11. Essential Oils For Physical & Emotional Support
I’ve used essential oils probably close to daily for about 20 years or more. I only used specific oils in certain ways. Just a few oils that I always had on hand, but I didn’t really think too much about how I’d come to rely on them (although I did mention a couple of oils in my book ‘My Favorite Home Remedies’ that I wrote back in 2013).
But since joining doTERRA, and discovering a much wider variety of essential oils, I now understand that essential oils have played a role in my coping strategy for a very long time.
So I’ll be sharing more about essential oils and ways to use them as time goes on. If you’d like to try doTERRA essential oils for yourself, you can do so by visiting one of the links below. doTERRA are the ONLY brand of oils I recommend now that I know the truth about essential oil quality and efficacy. Essential oils are not all the same – nowhere close.