Low Dose Naltrexone: An Experiment

There are three little letters that are causing a craze in the world of Fibromyalgia at the moment – LDN (low dose naltrexone). This is the last (for now) major experiment I can engage in.

Research has been showing promising results. Dr Jared Younger started with a tiny study and found positive results, approximately 65% of patients included experienced clinically significant results. He’s doing a bigger study this year.

How LDN works is well explained in this article, which includes many links to research.

It is meant to help with so many issues, including Fibromyalgia, chronic fatigue syndrome, gastrointestinal troubles and more.

If I could experience a 30% (this is considered clinically significant and therefore as success) decrease in pain and fatigue, my life would change! I could be a mama, a wife, do my work and have some form of a life outside that and not pay with such significant levels of pain, fatigue and other side effects of the Fibromyalgia.

I can only share research and what works or doesn’t work for me. We are all unique and react differently. If you’re interested in LDN then read the research/information and then discuss it with your doctor.

Key things I learnt:

  • It works best for me when taken at 9 (not earlier).
  • My main side effect was vivid, crazy dreams.
  • Titrating up 0.5mg at a time with four day gaps between increases, until 2.5mg when it was beneficial to wait a week or more.

I’ll update on this experiment when I’m closer to the four month mark – this is when most people I’ve read about in the LDN groups on Facebook find it shows the best effects.

Have you tried LDN? Any success?

New Name, Same Mission

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I have spent a long time thinking over the name of this blog. I don’t claim ownership over the Fibromyalgia. It is not mine. I will never say “my” before Fibromyalgia. However, when you name a blog, people need to know what it is about in order to find it.

So here it is, Melissa vs Fibromyalgia. This encapsulates my mission perfectly. I am fighting Fibromyalgia. Not just for myself, but for my two beautiful, busy boys and the love of my life (Husband).

This site is the compilation of my learning from my own journey and from my research.

Here’s a post that I wrote about: The Whole of Life Change Anniversary

Here’s where I write about What it’s Really Like to Live With Fibromyalgia

Here’s a recent post of what other bloggers and I have found to help with fighting Fibromyalgia: What Works: A Roundup

I am trying to come to terms with the idea that this could be a progressive illness. I cannot give up that nugget of hope that I will find some measure of relief one day.

Welcome to the continuation of my journey.

What Works: A Roundup

I love research and reading about potential treatments for fighting Fibromyalgia. But there are so many options and so many variabilities that it’s hard to have a sense of what may work for me. I have managed to glean a list of what works for me and of things I would like to try. There are also some great blog posts outlining what other chronic illness fighters do. In this post, I wanted to share a few examples.
What Works-
I have written extensively about my experiments, my whole of life change and what I hope to try.
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Essentially, I have found that in order to be well (or the most well I can be) with Fibromyalgia is what any good health guidelines advocate:
  • Sleep as well as you can
  • Exercise gently
  • Eat healthily
  • Rest, meditate, pace
  • Practice safe posture on computers
  • Find your work/life balance
  • Nurture your passions
Donna from February Stars has recently written about what she is doing to counteract her three worst symptoms.
Bonnie Wagner-Stafford from BClear Writing wrote about how clean eating has helped her symptoms, including a serious gut cleanse. On the flip side of that, she posted about the six worst foods for Fibromyalgia.
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Veronique Mead writes about her top 10 Under-Utilized Tools for Treating Chronic Illness, I particularly like #5 Making Room for Resources and Pleasure, and #8 Meditating.
Donna Gregory Birch at Fed Up With Fatigue wrote about her Six Favourite Things For Fibromyalgia Relief (this blog is where I first read about low dose naltrexone, which I’m currently trying).
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Katarina Zulak at Skillfully Well and Painfully Aware wrote the Top 3 Things I Do Every Morning to Manage My Fibromyalgia, the stretches she provides are delicious!
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Hannah Radenkova at Superpooped: Adventures for the Exhausted wrote about her diet for managing ME, including a daily meal plan.
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What are some of the best ways you have found to cope with the myriad of symptoms that come with Fibromyalgia?

Fibro Soothe: A Review

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. 

I was so excited to be given a chance to review Fibro Soothe because I have heard many great things about the ingredients and because I hadn’t yet tried fibro specific supplements like this.

When I was first diagnosed these sorts of things were just not available, especially here in New Zealand. So I have really enjoyed the proliferation of options.

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I was so happy to receive this, that I posted this picture on Twitter immediately!

Fibro Soothe contains Boswellia serrata Wokvel®, Turmeric Longvida®, DL-Phenylalanine, Ginger, Devils Claw, Ashwagandha, Bromelain, Papain, and Turmeric Powder. It is supposed to help with inflammation, pain and sleep.

Curcumin, the active ingredient in tumeric has long been known as a potent antiinflammatory, along with ginger. Perhaps less known, dl-phenylalanine, devils claw, ashwaghanda, bromelain and papain are also useful to promote pain relief and energy.

I have taken Curamin before (also sold by ProHealth), which contains Curcumin and a couple of other overlapping ingredients and found it to be quite useful for my neck, which is the pain I most struggle with. My neck is always tight and sore, and gets very stiff in the night and if I try to sit still for too long. It responds to ibuprofen, when none of my other pain does – which I think is why anti inflammatory supplements help.

There has been a lot going on for me, physically, with having a small baby. So it was both a good time and a rough time for trying a new treatment.

Having a baby, developing symphisis pubis disorder and a Fibromyalgia flare up all at once (all interrelated), I’ve been on more medicine than I’d like. Fibro Soothe helped me cut out the morning dose of ibuprofen, which removes the extra stress on my stomach.

The only negative I found from taking Fibro Soothe was trying to swallow three capsules in the morning, I found it difficult. So I now take my daily dose around lunchtime when it’s easier to take them. There isn’t a strong smell or taste, so that really helps.

I have found that supplements usually take six to eight weeks to truly see if it will work for you, so make sure you give it a good amount of time when trying new supplements.

I’ve been on it for about five weeks and will continue taking it. The effect on my neck alone solidifies this in my daily regimen. It’s important to remember that fighting Fibromyalgia requires an amalgamation of solutions, rather than one miraculous one.

Getting as much good sleep as I can, nutritious food, supplements, gentle exercise and rest are all part of my key lifestyle changes.

Some of the key supplements I love are:

Another thing to note, is that Pro Health has a wealth of articles about Fibromyalgia and chronic fatigue syndrome available, so it’s worth spending some time going through their site.

Have you tried Fibro Soothe before? Did it help you? Is there any other supplements that really help you?

What Every New Mama Needs

Whether you have a chronic illness or not, there is one thing a new mama seems to need…Reassurance that it will get better.

And it will.

It may not be at six weeks, or three months, or whatever magic age you hear touted. But it will get better.IMG_20170308_110851

One day they will sleep through the night, they’ll eat by themselves, they’ll play independently.

You’re in the trenches of motherhood, knee deep in milk and poop and tears, for such a short time. One day you’ll look up and realise it’s over. It’s better.

Your baby will learn to self settle when they’re ready. They’ll get the hang of feeding. They’ll cry less.

Enjoy those smiles that light up even the darkest of sleepless days. Enjoy the soft baby skin, the chubby cheeks, the sweet wrist rolls. I am!

Energy Revitalization Formula

energy-revitalization-systemA lot of protocols/treatment plans/advice for Fibromyalgia advise starting with a high quality multivitamin.

The Energy Revitalization Formula is a high potency multivitamin that focuses on the key vitamins, minerals and amino acids that research shows people with Fibromyalgia can benefit from. You can find the full list of ingredients here
https://secure.endfatigue.com/store/products/supplements/berry-splash#tab-2

I have been taking it since December 2015 and found it be very useful in assisting my energy levels, keeping my immune system up and getting all of the vitamins in one drink. https://secure.endfatigue.com/store/products/supplements/berry-splash/

It costs approximately $30 for one to two months supply – I take half a dose as I find it difficult to get a whole dose down. It is jam packed with nutrients. I get mine from evitamins.com as it is difficult to get these things shipped to New Zealand.

Dr Jacob Teitelbaum is one of a few prominent physicians who treat Fibromyalgia and Chronic Fatigue Syndrome. He wrote From Fatigued to Fantastic! And has developed the SHINE protocol to help manage the illnesses. An important part of the SHINE protocol is nutrition. Based on research, Dr T found that people with Fibromyalgia/Chronic Fatigue Syndrome tend to be short on some key nutrients, including B complex, vitamin C and D and magnesium. http://vitality101.com/health-a-z/simplifying-nutritional-support-in-cfs-and-fibromyalgia-2015-10

He has written an article on coping with pregnancy and suggests this is suitable to continue with for pregnancy. The doctor will probably recommend iodine, folic acid and iron to make up the full schedule. http://www.ei-resource.org/expert-columns/dr-jacob-teitelbaums-column/pregancy-in-chronic-fatigue-syndrome-and-fibromyalgia/

I am loving the combination in this supplement and will continue to take it to make the base of my nutritional plan.

Have you tried it? What has your experience been?

Fibro Mama Baby Diaries: The First Month

I fell in love the moment they put him on my chest. Despite the doctors dealing with my excessive bleeding and then stitching me up, I was lost in my son. He calmly laid on my chest and looked at me as I drank him in. fibro-mama-baby-diaries-month-one
I didn’t get that with Nu because he had been taken for some medical attention immediately.
I was blown away by these first precious moments. My boy, who I had worked so hard to meet, was here. After some time cataloguing all his fingers and toes and marvelling at this creature, we managed a full first feed. I thought things would be easier this time.
But again I found that after nearly 39 weeks of pregnancy and 32 hours of labour, breastfeeding is a real kick in the pants!
The second day cluster feeding led to a mangled nipple on one side, so I had to feed the baby from one and express from the other from day three.
It didn’t fully heal and the other side got very sore from overuse, so by week two I was expressing exclusively.
My energy levels and pain didn’t help production, so baby outgrew the amount I could produce per feed by three and a half weeks. Far from being stressed, I knew that it didn’t have to be all or nothing. I had the tools to mix feed so that he could continue to have breastmilk for as long as I could produce any.
Far from being the “easy” baby I’d hoped for after Nu and his being hospitalized for week three, W didn’t like to sleep in his Moses basket and only slept in my arms or on my husband’s chest for the first couple of weeks. By week three we did manage to get him to sleep in the basket after his last feed and until his 4am feed (when he wanted to stay with mama).
My body coped really well until both my husband and I hit the wall at three and a half weeks. Baby had a few days of extreme fussiness, hungry but gassy is not a good combination.
But I persevered with my coping mechanisms – quick meditations whenever I could, heat pack, ibuprofen, stretching and hot showers.
In addition to the Fibromyalgia, general post-birth pains and sleeplessness, I received a name for the severe low back and pelvis pain I had been experiencing: symphisis pubis disorder. Basically, my pelvis spread a little too far, probably due to the prolonged labour and having to use the stirrups. This made things difficult as I couldn’t spread my legs very far apart – no squatting, no stepping over things, keeping my legs together when getting out of bed etc. I had been so looking forward to being able to sleep on my back again, but this wasn’t possible yet. My physio suggested pelvic tilts and to see my doctor if it hadn’t gotten better by six weeks.
Nu adjusted really well to being a big brother. The sleep habits we instilled in him saved us as he slept from 7.30pm to 7am and then had a nap in the afternoon. Our constant refrain was “quieter!” As he speaks so loudly and gets very excited. He gives many kisses to baby and likes to help to feed him.
Pregnancy, labour and the first weeks seem much like rugby…You can plan all you like and utilise all the tools at your disposal, but in the end you have to put your head down and run in! I’m just super thankful for Husband and his help, because I don’t know if I could have coped without him.

Second Trimester, The Second Time

The second time around I truly found a distinction between the first and second trimesters, a real diminishing of symptoms. The nausea vanished, the more extreme fatigue receded and my low back pain eased. For a time.

second-trimesterThe relative lack of stress, limited work hours and the totally different place in my health journey all helped immensely. I had my coping mechanisms well in place. I already had a plan for coping with the third trimester, labour and the first weeks.

Sleep, of course, was difficult as my neck and shoulders hate (with a capital h!) lying on my sides. Every time I changed position, which was often, I woke. But meditation around lunch time for 20 or 30 minutes really helped me to cope.

Nu was really excited and shared the journey with me day to day, so that was really special!

Here’s what I did to be well:

  • Energy Revitalisation Formula – a general multivitamin to support nutrition for those with Fibromyalgia, any pregnancy multi is a good idea
  • Making better food choices – once I wasn’t so sick
  • Exercise as I could – this meant walking 20 minutes several times a week, being generally active (using 8000+ steps a day) and some gentle resistance work (superman, pelvic tilts and lots of pelvic floors)
  • Stretch – often!
  • Heat pack – not only does it ease pain, but I had to sit or lie down with it for it to stay on my neck or back.
  • Sleep and rest – bed at a good time, meditation about lunchtime
  • Journaling – taking time to write “mama notes” documenting the toddler and the pregnancy
  • Physio – every 2 weeks

As the trimester progressed and sleep deteriorated (due to worsening back pain) it did become more of a slog. But a heavy dose of acceptance helped – pregnancy is a trying time for any body, it is finite and I do all I can to help myself.

It also helped to be able to say things like, “these are my last first kicks,” “this is the last time I will have to cope with pregnancy-caused backache” and “this is my last second trimester”!

In Defence of Doing What Works For You

in-defense-of-what-works-for-youI go to bed relatively early. I do this because I’m exhausted by 7pm and the last couple of hours of the day are a drag, because I sleep poorly (I lose at least an hour of sleep in the night and don’t stay asleep for longer than one or two hour blocks), Nu wakes about 6.30am and because I’m growing a baby.
Regardless of these excellent reasons, I shouldn’t need to explain myself.
I think many of us have encountered people who have an opinion about how we should do things, it’s especially frustrating when they do not understand our illness (or pretend it doesn’t exist).

But how about we let people choose what they need to do and leave them to it.

How about we acknowledge that, as much as culture and traditions and expectations, personal preference counts. I may not have strong cultural traditions, but I do have a way I do things. I have a valid opinion. And what I chose for myself and my son are the final decisions.

A lot of my lifestyle choices are influenced by how I cope with Fibromyalgia. My day to day choices dictate whether I’m miserably sore and fatigued, or whether I have a nice day – usually somewhere in between.

Sleep is very important. Rest is vital. Exercise, nutrition, supplements, heat, medicine and physio also form part of my coping mechanisms. And the only person that suffers when I am forced to overdo it, or let these coping mechanisms slide, is myself. And nobody should have to feel like they’re just treading water.
Fibromyalgia is an illness of self-management. We need the space to manage it.

And no one has a right to comment on this. Unfortunately we will find pressure to do more, to sleep and rest less, but we need to try to make it white noise. We need to keep our eyes fixed on what helps and walk forward with hope.

Fibro Mama Tools for Managing Early Pregnancy Symptoms

fibro-mama-tools-for-early-pregnancy-1Motherhood for a person with Fibromyalgia and Chronic Fatigue Syndrome is not a short sprint, it’s an epic marathon spanning pregnancy, labour and baby’s first year. So it’s really important to get your pregnancy wellness plan underway fast.

Here are some things I have learnt for tackling the early pregnancy symptoms:

Sleep – I tried as best I could, but I had a lot back pains which made lying down difficult. I needed pain relief to get to sleep and woke often either in pain or to go to the bathroom. I had pillows to alternate and utilised brief body scans to encourage certain parts of my body to relax. I found that the Chronic Fatigue was greatly flared up and the amount of sleep I got was almost directly related to my nausea levels.

Pacing – The second time around, I was super lucky that a work contract ended at week four so I had week five off to get into a routine of rest/errand. The first time around, I had little choice and needed to work the entire time, however I worked from home and was able to schedule lie down breaks regularly – for a while there I napped at 10am and 3pm (and my body’s a rigid non napper usually!) The work/rest cycle is really best for managing pain, fatigue and pregnancy. Sometimes it may feel as if the rest needs to be longer than the work portion, but try to allow that as best you can. Some days I was so (miserably) tired but couldn’t nap and  resting was the difference between coping and not. I actually lay down with my eyes closed and listened to Pride and Prejudice audio book which was a lovely treat.

Meditation – as a stubborn (my body, not me!) non napper and a troubled sleeper meditation was a lifesaver. It is useful first thing if you wake too early and cannot get back to sleep. It can be used midday, or whenever you need a lie down. Or it can be used right before bed. You can choose simple breath focused meditation, you can listen to guided meditation or do body scans. You can choose meditations specifically for pain or pregnancy. There’s a heap available on YouTube to try.

Exercise – walking is a big part of my usual pain management plan and this is no different in pregnancy. I had to pause my experiment to see if I could increase the amount I could comfortably walk without increasing the pain or fatigue. But I was able to continue gentle 20-30 minute walks all around our neighbourhood after the hardest weeks were over. During the worst weeks I managed about 10 minutes a day. Yoga was off the menu for me due to post exertion malaise, but this could return in the second trimester for me and may be useful for others in trimester one. Your body will tell you. Anything you did before is usually okay during pregnancy.

Here are three cool yoga poses for your entire pregnancy that I found https://m.youtube.com/watch?list=PLoLbQHZNNqOrHOyfkvlDDvKMi1Clz309c&v=5XKaDOYUpiw

Fuel – I needed smaller amounts of food more often, so I adjusted my meals to suit this and this helped stabilise my energy levels and avoid the more severe nausea. When I was the most sick and unable to eat I found that gently coaxing my tummy back to food with diluted orange juice, small amounts of milk, toast and then whatever I fancied worked. Crackers by the bed for midnight or 3am snacks was a handy hack!

Pain management plan – my doctor helped me to put together a system for dealing with the pain using as minimal medicinal input as possible. My big struggle has always been my neck, so I needed a dose of pregnancy suitable pain killers before bed. I took a combination paracetamol and low dose codiene mixture. I allowed myself one dose per day unless my back pain was severely breaking through the more natural methods of management. You may like to look into homeopathic remedies, using an experienced practitioner’s advice – my doctor is a big fan and I used Crampmed by Naturo Pharm.

There are a ton of natural pain control mechanisms that I have written about before (links) but a snapshot: heatpack, warm bath or shower, meditation, self massage or partner massage or paid massage, herbal topical relief cream (like arnica), gentle walk (seems counterproductive but often helps my neck and back the key word is gentle), a swim, distraction (funny videos, phone a pick me up friend), self trigger point, foam rolling, yoga poses (restorative poses for pregnancy), stretch (seriously, do this several times a day!).

Nausea – this is pretty much unavoidable but I have a few tricks for reducing it: 1. Keep your tummy from getting empty, 2. Don’t get too fatigued (using tools above), 3. Ginger lozenges or mints, 4. Acupuncture for nausea in the wrist point or the seasickness bands that hold pressure in the same point.

Going to the bathroom ALL the time – I can’t really help with this, but I do avoid anything other than water after 3pm and, otherwise, just go with the flow!

Plan – if you’re at all like me, you will find comfort in planning ahead. And write everything down because it may fall out of your head. Figure out potential parental leave options.

Enjoy – you’re growing a tiny human! Revel in that a little. Also enjoy the things you can do now and will have to give up later (weird fact, I do certain stretches and legs on a chair pose like crazy because I know I’ll have to give them up from week 16 or so!)

Do you have any tips for getting through the first trimester?