Fibro Mama Pregnancy Diaries 4-6 Weeks

I knew something was up when I wanted vegetable soup for dessert one night. Sure enough, the next morning I tested for a big fat positive.fibro mama pregnancy diaries

Baby number two was on it’s way.

I had had a low back burn for a week, this was my new, awful PMS symptom since back labour with Nu. In addition to this I was mildly nauseas and had a mad craving for meat (I’m not usually meat’s biggest fan).

Spearmint flavoured mints and ginger lozenges were really helpful for controlling the nausea in these weeks.

Continuing as I began, I had vegetable soup everyday and my regular fruit and vegetable smoothie in the morning.

Luckily, the week before I found out I had finished a work contract and had decided to give myself a rest, I was running on empty. So the following week was somewhat blissful with less neck pain.

The fatigue was something else. A constant sleepiness. Yet an inability to sleep for long periods of time (Fibromyalgia usual-ness for me) and daylight savings ruining my mornings (waking at 6, the old 7) was rough. I was in bed by 9 each night to read and then sleep early.

Meditation was delicious, 30 minutes (when I could get a break from the toddler) was really nice for the pain and fatigue.
I did this one a lot – Float Away Stress: Relaxation for Pregnancy and Childbirth

Our walks stayed at 20-30 minutes and that was quite enough.

With all the physical impacts I found it useful to stay focused on the miraculous aspects of pregnancy…the highlight of week five was that baby’s tiny heart begins to beat! I was very excited to hear it and see it!


I wrote these posts throughout my pregnancy to share what it was like to do pregnancy with Fibromyalgia. You may also find these posts helpful:

Fibro Mama Tools for Managing Early Pregnancy Symptoms

Second Trimester, The Second Time

Pregnancy, the First Eight Weeks – This is from my first pregnancy!

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Biofeedback Therapy, Another Tool

If you have read through my blog a little, you will see I have found meditation to be immeasurably useful. Especially in my second pregnancy.Biofeedback Therapy

The thought of furthering my meditation practice was a highly appealing one. In addition, receiving some assistance after doing this (mostly) alone for most of my life, was a nice emotional boost.

Having a tool that can help my body and mind relax so thoroughly has been a lifesaver. I have spent many many hours miserable, exhausted, sore and wishing I could sleep. When Nu was small and I was desperate for sleep, my body still refused to nap. And when I lay down, exhausted, hoping I’d pass out, I’d not only not sleep but become upset that I couldn’t. Now I can lie down for 15, 20, 40 or 45 minutes, depending on the mediation I choose, and feel rested and calm. Sometimes I fall asleep for 10 minutes at the end. This is one tool I seek to utilise every day.

In addition to this, I have found, through biofeedback therapy that I am able to effect my central nervous system through my meditation. As a person with Fibromyalgia, a central nervous system disorder, my parasympathetic nervous system needs some support. The emerging research around heart-rate variability is shedding light on just how important teaching our parasympathetic to activate is.

My two plus years of practice has made a big difference. Through deep breathing, visualisation and meditation I am able to activate my parasympathetic system (rest and digest) which I believe leads to less pain and more energy. I am definitely in a better place than I was prior to beginning my meditation practice.

So when I was offered biofeedback therapy with a health psychologist at the pain clinic after a non-event follow up with a pain specialist, I jumped at the chance.

A biofeedback therapy session involves having a heart-rate monitor placed on your thumb that sends your heart-rate to a laptop. The newer systems have fancy graphs and many things to look at, at it’s simplest, it provides beeps to let you know how high or low your heart-rate is.

In two sessions I tried two types of guided meditations led by the health psychologist and employed deep breathing and visualisation on my own. I was able to conquer the medium setting on the machine (apparently they don’t usually tell people with chronic pain that there are higher settings than low because without practice it can be very difficult).

I do need to practice relaxing my shoulders and neck as my heart-rate obviously kicked up when we got to those parts in the relaxation meditation. This is unsurprising as these parts are tight and sore all day, every day. A physio can make them relax a little through neck tractions and acupuncture needles in key points, heat can help too, but nothing makes them feel nice. So this is my homework, I’ll keep working on visualising and relaxing these body parts.

Biofeedback therapy has provided a useful check in with how my meditation practice is going and provided some areas to work on. I feel so empowered to have a tool that can not only initiate short term relief, but has long term effects (which are only just starting to be researched).

Has anyone else had experience with biofeedback therapy? Does anyone else find meditation to be so helpful?

Low Dose Naltrexone: Update 16 Weeks

My major experiment post- baby is Low Dose Naltrexone (LDN), you can read about the beginning of my experiment here.

Varying information will agree on anything between 8 weeks and one year to experience the full effects of LDN. And a dose of between 3 and 4.5mg depending on the illness.

At 15 weeks into the experiment, after six months of sleep deprivation from the baby on a grand scale (read: wake ups of between 2-10 times a night), I had a flare up. My neck was so sore I was extremely nauseas and had a severe headache for days. The doctor I saw told me it was my C3 and C4 vertebra that were causing me trouble. The pain was actually spasms. He suggested a muscle relaxant and slow release Brufen.

Feeling like I was taking a lot of pills, I skipped a dose of LDN for a night. A lot of people note needing to skip a night occasionally to clear the receptors as a way to increase effectiveness. There were no changes noted.

Two nights later I went on my first date with my husband since the baby. We had a glass of wine. I decided I’d better not take the LDN (full dose Naltrexone is for alcohol and drug withdrawal, it can cause vomiting when mixed).

The next day I felt like I’d been hit by a truck. The fatigue sky rocketed. I was at 6-7/10 levels, hardly functioning, needed two rests and craved sugar like mad.

Taking my 3mg dose as usual that night I went to sleep hoping to feel better when I woke.

I did feel a bit better! The fatigue was about 3/10 and the filmy fog on my brain had descended a level or two. My neck came down a point, that could be related or not.

This is proof to me that it’s making a difference. At 3-3.5mg LDN is helping my fatigue.

I patiently continue for my maximum benefit. One woman in an LDN group told me of feeling progressively better over a year to approximately 90% function at one year! It gives me such hope. So I shall continue on for my one year experiment.

A Tricky Parenting Secret

Do you want to know a tricky wee parenting secret? After three years of being a mama with a chronic illness, it’s just dawned on me…A Tricky Parenting Secret

It doesn’t take as much as you think to make a nice day for your kids.

Take a day recently as an example, I’m exhausted and my pain levels have been creeping up thanks to the baby waking up to six times a night. We went to church (with a baby and a three year old, it’s not so peaceful anymore) got frustrated with Nu not being quiet. We’re not crazy, we know he can’t sit quietly for just over an hour. But not yelling would be great.

Back at home, he was frustrating us, we were feeling cabin fever but also the weight of the incomplete housework (sorry our bathroom gets cleaned fortnightly now eek). Baby wasn’t playing ball with the napping. I was so tired I felt sick.

But we decided to go out. I wanted to be tired and sore out, instead of tired and sore at home. So we bundled into the car, drove half an hour, of which the baby slept 25 minutes (he’s a chronic catnapper) and visited a nice beach with a park. Parking was difficult, we got a 30 minute park, unbundled and faced the cold but beautiful scene. Nu happily rode his scooter up and down the beach, baby watched. On the way home we stopped for chocolate sundaes at a special chocolate cafe.

Nu was difficult to keep occupied as we waited for our order. He was loud on the drive home.

But at the end of the day, as I remembered how frustrating it was to wrangle Nu and the overtired baby and my own issues. While admitting I had a nice time. Nu remembered a great day. He had fun. He remembered the scooter, the birds, the swing, the chocolate sundaes. And our photos look so great.

All it took was a park and a treat. And I managed to give that to him (granted, with Husband’s help) despite pain levels of 5/10 and fatigue levels up the whop.

It is a timely reminder as I worry about my lack of energy and time. As I worry that I don’t have enough to split between two kids. But I do. I continually find reserves I didn’t know I had, for their sakes. And my little efforts to keep Nu occupied pay off.

On days where we’re housebound by baby and pain levels, Nu is just as happy to bake (he loves to stir!) and colour, an ride his digger (as long as I’m watching!) and snuggle while watching a movie.

So now my definition of a successful day is when I ask Nu, “did you have a nice day?” And he responds with an emphatic yes!

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Nu loved his chocolate sundae!

Nursing with Fibromyalgia: My Experience and Some Research

Like many areas of living with Fibromyalgia, I have found there to be little information on nursing with Fibromyalgia. There are a few articles, like this one on Fibromyalgia Symptoms that mentions research but provides no links, “Numerous studies have been done evaluating how fibromyalgia influences breastfeeding. These studies all indicate that it is very hard to breastfeed with fibromyalgia.”Nursing with Fibromyalgia

The Fibromyalgia Health Center on WebMD posted an article in 2004 referencing a new study about nursing with Fibromyalgia.  This study was very small, with just nine mothers included:

“All nine women felt that they were not successful in their attempts to breastfeed, and felt frustrated,” Schaefer writes. Difficulties included muscle soreness, pain, and stiffness; fatigue; a perceived shortage of breast milk; and sore nipples.”

The article lists a few tips from the study which includes good nutrition, proper rest and paying attention to where and how you are nursing.

Having had two children now, I thought I would share my experience. As with all areas of this illness, my experience may not be the same as another’s with Fibromyalgia, so my difficulties do not translate to all women with Fibromyalgia.

With both children I found nursing extremely painful, I had cracked and sore nipples from the second day cluster feeding with both babies. Both times, it took a long time for them to recover. Expressing was less painful, but still resulted in sore breasts.

The differences in situations were extreme.

With Nu, we found he was excessively windy and by week two we were going back and forward to doctors at the after hours centre. At last, at week three, we were sent to the hospital and there they found that he had pyloric stenosis – a thickened sphincter that wouldn’t let food out of the stomach to be digested, so it was forced back up and out of his mouth in projectile vomiting. After several days in hospital and a small operation, we came home and found that he doubled the amount he was taking at each feed. My supply couldn’t keep up, despite pumping three hourly the entire time he was in the hospital, my supply decreased in real numbers and relative numbers. I managed to keep him exclusively on breast milk until eight weeks. At this point whenever it was time to express, I would cry, so I knew it was time to finish up. I was just tired and sore and Nu was not a very settled baby and so cried the entire time I tried to express.

I was so relieved when parenting no longer needed to include my breasts. I am proud that I managed to give him such a good start in life, but I also wish I had given up sooner, but the pressure on mothers to breastfeed is enormous, even my expressing rather than feeding directly was seen as failure. My doctor and my Plunket Nurse were both supportive as they understood the Fibromyalgia and how hard I had tried.

With W I managed to persevere a little longer. My right breast got so sore and cracked from the second day cluster feeding that when I first tried to express, I expressed blood in the milk, it was a frightening sight! I persevered with the one side for another week before that became too sore (this guy is a rough feeder and liked to pull away with it clenched between his gums). I expressed four hourly during the day and once in the middle of the night (that was hard to leave baby sleeping after giving him a bottle and stay awake). My supply stayed static no matter what I did to try to increase it, so by week four, I was only just producing enough from both breasts for one feed. Luckily I had a lot of frozen milk from the first weeks of expressing.

This time I knew it didn’t have to be all or nothing (this is an important message for all mamas, you can mix feed!), I had more knowledge and therefore more power. I also ignored any messages of my being deficient or not trying hard enough. I managed to add in a physical feed each evening after he had spent the previous few hours having more regular bottles in his nightly cluster feed, this meant I didn’t have to worry about him not getting enough and he got some comfort from it at the end of a long day. It hurt, but swapping which breast I gave him each night helped me to cope. I worked with my midwife to reduce to a few feeds a day of my milk and add in formula for the shortfall. My plan was to give him whatever breast milk I could, for as long as I could.

As we know, plans do not always work out. Little W developed reflux and vomited my milk and got very sore. Through long weeks of trial and error we found that I could feed him directly (my measly 40 ml or so) followed immediately by a bottle of thickened formula, reducing the vomiting to spills and the gas pains greatly decreased. At seven weeks I was still managing to mix feed, with the miniscule supply I produced.

Due to the very different positions in my health and a lot more knowledge and confidence, I believe it was slightly easier the second time around. However, by 12 weeks my supply had completely dried up. I was really happy that I had been able to provide him with these vital nutrients for that long. I was also happy to not have to deal with expressing, feeding and bottles – it had begun to feel like my whole life revolved around his feeding. And at this time my life turned to revolving around his sleep, or lack of!

My tips would mirror what most nursing women are told:

  • Try to rest as much as you can
  • Try to eat as well as you can
  • Drink lots of water
  • Make yourself as comfortable as possible when you feed
  • Know that whatever you manage to give your baby is awesome and that you cannot fail. You will be a great mama whether you feed physically, by expressed breast milk or by formula. A fed baby and a happy mama are both minimum requirements. (Your well being counts as much as baby’s and don’t let anyone tell you otherwise!)

I’d love to hear about your experiences with nursing with Fibromaylgia, if only so that others have something to read when they Google about it.

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!