I was reading through some posts and comments earlier today on a Facebook support group for Pyrrole Disorder sufferers. I’m a member of a couple of these groups, and I find them to be great places to pick up information, as well as helping me to remember that it’s not just me (because sometimes it feels like it is…). They’re also great for making the occasional request for advice, or the thoughts of others who are going through the same stuff.

As always, after catching up with the latest in these groups, I came away feeling grateful. Reading the posts about how much some others are suffering makes me realise how fortunate I am that I’ve managed to ‘manage’ my body for all these years enough to lead a fairly normal life (or at least look like I am 😉 ).

So many Pyrrole Disorder sufferers are really suffering and confused, and I totally understand where they’re at.

I know that when we are diagnosed, it’s all too common to be ecstatic because after years of searching for answers (as is often the case), and feeling like a crazy hypochondriac, we’ve finally found out why we have all these bizarre problems going on. But then, for many of us, when we start on the supplements that are supposed to make us feel better, we feel worse.

Everything becomes really confusing, life feels really hard and sometimes it all feels quite hopeless.

I get that.

I’ve been there (and I still go there at times). But for me, things are slowly getting much better. To be honest, I think I was blessed with an inquisitive mind, an affinity for researching and finding what I need, as well as an ability to hear my inner voice (although I don’t always listen!), and so I’ve always been fairly good at managing my symptoms.

So I thought I’d share my top tips for managing Pyrrole Disorder. These are the strategies that I’ve discovered help me to manage my mind and my body, to live my life in a way that works, and that get me through each day when ‘getting through’ the day becomes a challenge.

My Ten Tips For Managing Pyrrole Disorder (Pyroluria)

1. Supplements

Pyrrole disorder (Pyroluria) causes marked and chronic deficiencies of Zinc, Vitamin B6 and GLA. Due to those deficiencies, other nutritional deficiencies are also common. Therefore I (and most others diagnosed with Pyrrole disorder) take supplements by the handful.

I was fortunate enough to notice a difference quite quickly after I started taking my supplements.

I had been experiencing an increasing difficulty with being able to talk to people (most people - even family). I found myself increasingly wanting (or needing) to get away (often desperately) due to an indescribable discomfort - a feeling of fear or intense tension inside my body. This made life, and making a living, quite difficult and stressful as you can imagine, and I was living in fear of the day that it completely took over me.

My blessing however, was that my supplements improved this enough to make a huge difference in my life, and for that, I was willing to stick out whatever other problems the supplements caused.

And there were, (and still are) problems. Unfortunately it hasn’t been plain sailing due to copper detox and other issues, and while I’m not sure if I’ll ever be where I’d ideally like to be, I’m optimistic.

I started on compounded supplements that were prescribed by my doctor, but since our move back to New Zealand, I’m taking individual supplements. I order most of what I take from Iherb as they are the cheapest source of quality nutritionals that I’ve found. The brands that I’m using seem to be doing the job pretty well.

One advantage I’ve discovered to taking individual supplements over compounded, is that it allows me to experiment with dosages a little, although I still so far, tend to mostly stick to around the amounts that I was first prescribed.

The following is a list of the supplements that I use:

• Thorne Research Double Strength Zinc
• Life Extension Vitamin B6
• Thorne Research P5P
• Healthy Origins Alpha Lipoic Acid - (Removes copper and heavy metals)
• NOW Food Blackcurrant Oil - (GLA)
• NOW Foods Biotin
• Magnesium & Magnesium Oil

I also take vitamin E. I was taking the Thorne Research Ultimate E caps, but they contain medium chain triglicerydes and I’m not sure that they agree with my belly. So I’ve switched to Thompsons Brand which I buy from Health Post here in New Zealand.

Please note: I haven’t posted my dosages here as they probably won’t be relevant to you. Please seek the assistance of a qualified naturopath or medical practitioner who has experience in treating Pyrrole Disorder.

2. Clean diet

This means eating a clean, wholefood diet. Avoiding chemicals and reading ingredient labels.

What I’ve found in my own experience (which seems to be the same for most others with PD from what I’ve read) is that we don’t ‘do’ junk food. We need to eat real food - home cooked as much as possible.

We need to avoid gluten and a grain free diet is often a better choice for us (although I personally seem to be able to eat rice without any obvious problems). A Paleo style diet seems to work best for us and again from my own experience and that of others, a vegetarian diet can make things much worse due to a lack of zinc in vegetarian foods.

3. Heal your gut

For me this has made a huge difference. Zinc deficiency can cause leaky gut syndrome and all manner of digestive problems. Combine this with stress induced irritable bowel and you have a real recipe for misery and ill health.

I spent over two years on the GAPS diet, starting off on broth and meat only. I initially removed ALL fiber from my diet for a couple of weeks and then gradually introduced a little at a time. The full protocol and information about how and why the GAPs diet works can be found in this book by Dr Natasha Campbell, creator of the GAPs diet.

Some people I’ve spoken to say they’re not committed enough to do this. That it’s too much hassle.

The problem though is that if you have Pyrrole Disorder and you have leaky gut, then you need to fix your gut before you can start to heal the rest of your body.

Just ask me if it was it worth making bone broth for two and a half years… My answer? Hell yes! I doubt that I’d be feeling the results from my supplements as quickly if I hadn’t. I’m very grateful that I’d already been on the GAPs diet for over two years prior to my diagnosis.

4. Avoid chemicals

Those of us with Pyrrole Disorder don’t detox well. Therefore I think we all need to avoid chemicals more than others.

I know I do!

I’ve been sensitive to chemicals for years, and even though I find that since taking my supplements I don’t seem to be as sensitive, I still avoid them.

For years I’ve used baking soda and white vinegar at home to clean and when other products are needed, I buy as safe as I can.

I’ve also used a range of personal care products (hair care, skin care etc) and cleaning products for the last 15 years that work better than their supermarket counterparts (they actually do what the others say they do but don’t) and yet they’re safe.

Safe for me and safe for the planet. You can take a look at these products here.

5.Rescue remedy

I’ve carried this stuff around in my handbag for years, and I’ve gone through many stages where I 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…. It’s great during times of stress and works brilliantly on humans (and animals!) You can find it at Iherb and at Healthpost.

6. Harkers Stress Tonic

Since my move back to New Zealand, I’ve fallen in love with this stuff. It’s a pretty 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, but I buy it from Health Post here in New Zealand.

I take it when I’m travelling or feeling a bit stressed and it really makes a big difference to me.

7. 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’ve written about it before so I won’t repeat myself. You can find that article here.

Note: If you scroll right to the bottom of that page, you’ll find a link to a free EFT tapping video for stress.

8. Exercise

I’ve exercised most days of the week for years, and at times I’ve been quite the exercise addict!

I know that regular exercise has helped me over the years - lots!

However, I had to stop exercising completely when I started on my supplements as it became apparent that even light exercise would cause me to sink into a huge depression the next day. I eventually realised that it was copper dumping that was causing that, and wrote about it here.

After 18 months or so on supplements, I’m happy to report that I’m getting back into some walking, and even a little weeny jog here and there and I’m enjoying it.

For the most part I’m getting back to feeling good after exercise which is awesome, but I can tell if I’ve overdone it as that all familiar low mood rears its ugly head. It’s still a bit of a juggling act, but I’m happy to be back doing a little, and I’m looking forward to that good feeling that I relied on after my workouts for all those years.

9. Meditation

The benefits of meditation for stress and health have been proven in many studies. 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! Practice makes perfect.… But still I feel the benefits when I do do it. 🙂

This book ‘How to Meditate’ by Pema Chodron is on my ‘to read’ list!

If you’ve never tried meditation, give it a go. If you’re a meditation junkie, good on you!

10. Lifestyle changes

Last but very definitely NOT least, are lifestyle changes. This depends on your lifestyle, but might include things like a change of occupation, listening to music, taking time out to relax, reading, or doing things you enjoy.

For me (recently) it’s been a change of occupation back to being a self employed massage therapist. It’s also finding time to read, paint and exercise. Doing the things that make me happy, because after all that’s what life is about - being happy!

My motto now is ‘take the easy road’.

If it feels too stressful or hard, I give it a miss (as much as possible anyway). When we take the path that makes us feel good, gives us joy and allows us to feel peace then our bodies (and life) work better. That’s just the way it is…

Blessings