Fibro Mama Pregnancy Diaries: Weeks 15-17

weeks 15-17Unfortunately side sleeping had become a necessity (thanks back) and my neck was not very happy with me. Despite multiple pillow changes, tossing and turning all night and medicine at bedtime, I was waking with a rather stiff and sore neck.

The first moderate neck headache occurred late in week 14 and was managed with repeated heat pack, Panadol soluble and a relatively quiet day (I had a two-year-old boy, quiet was not a word to be applied to our days!).

The physiotherapist, who does neck traction and places acupuncture needles in tight neck and upper back muscles, really helped me. Unfortunately this is not covered at all and private fees are not cheap, so I had to survive on one visit per fortnight. I highly recommend trying this for Fibromyalgia or pregnancy (just ensure they are trained in treating pregnant women as there are points to avoid and there is a slight risk, but they have to disclose this before they treat you).

I had some spotting as we headed into week 15 which gave me a little fright. It’s quite normal in the second and third trimester and is generally alright if it’s light, brown and not accompanied by pain. It would have been so great if I could feel baby move so I could double check!

Nu remained excited about baby, and often told me that he saw the baby on the TV and it was dancing (baby was busy in the scan and it took a while to get the measurements) – confirming it is a direct relation to Nu! He liked to say hi to baby -pat, kiss and do the sign of the cross (a Catholic blessing).

Somehow, while still in bed and having only been awake for a few minutes, I managed to pull a muscle in my neck while stretching out he stiffness from sleeping on my side. OUCH! I was in such agony. On the first morning I couldn’t move without severe spasms radiating down to the shoulder. Luckily, injuries heal, and by day three I could move a little better and had less pain. It took a week to get full movement back and I was rather nervous of moving from side to side in bed after that!

Despite the neck issues, I fully enjoyed the benefits of the second trimester. I relished food and our walks, I enjoyed all my projects and I managed to make a small dent in the tick list of items baby needs. I am determined to organise baby’s room and belongings before the third trimester hits so that I can focus on resting, exercising and generally trying to be well.

I was heartened to find a few blog posts by other expecting fibro/CFS mamas (or mamas when they were expecting) that showed the 20-25 week area to be relatively cope-able too.

The absence of stress and too many work hours really helped me to cope physically. Although the burden on my husband was not light. I was hoping that by not getting so run down in pregnancy and having my husband home for six weeks after, that I’d be able to pick up some work at early as five months after baby.

For the time being I enjoyed my bump and feeling my baby move.

Rough Day With Fibromyalgia

I’m a little disappointed, it feels like one step forward and two steps back.

I had been feeling quite well the day before, home with the children with relatively low pain and fatigue levels. I had had a busy morning ferrying the children around and then getting the baby to sleep.

All of a sudden my fatigue levels spiked, I was unable to stay up and all I could do was lie on my side in bed and breathe and try not to vomit. I was too tired to listen to my meditation (too tired to listen!) After 45 minutes my head was clear enough to get up and take a bath and smear lavender oil on my feet. When the baby woke I was only well enough to lie in the floor while he played.

When this happens, not only am I feeling the symptoms, but I’m feeling the grief and the guilt. I think ahead to all the things I need to do but now worry I can’t do. I think of the burden on my husband trying to earn all the money and help so much with the kids and the house. I think why it is not fair. I have been doing All The Things, everything I can think of to be well. So just feel like this is a slap in the face and a reminder that no matter what I do I still have Fibromyalgia.

I’m taking the Low Dose Naltrexone, going to bed as soon as I can, sleeping as well as I can, pacing as best as I can, taking MSM, doing gentle yoga and stretches, trying to get to the physio (no easy feat to sync her schedule with my childcare opportunities). I’m relentlessly optimistic about my wellness. And here I sit.

I know I’m lucky that my weary legs can carry me up and down the stairs to my baby’s room. That I have a car to get around (because I’d never get anywhere by public transport with two children). That my husband looks after us. I have done so well and experience so much joy as a result of the hard work I’ve put in. But sometimes it’s just a rough day with Fibromyalgia.

4 Lessons I have Learnt While Living With Fibromyalgia

Lessons I have LearntAfter more than a decade fighting Fibromyalgia, I couldn’t imagine that the last two years could bring as much learning as it has.

I have stepped up the fight. I am trying Low-Dose Naltrexone and an MSM supplement at the moment. I am using yoga as therapy (targeted poses to keep my body moving). I am devouring research and books and articles about fighting the symptoms and the illness.

A large school of thought in the cause of Fibromyalgia, is that it is caused by underlying issues that need to be resolved. For example thyroid issues, Candida, viral infections, allergies etc.

Lesson one: Don’t be surprised, or discouraged if one avenue of potential healing doesn’t produce results.

Many Fibromyalgia bloggers/writers/doctors blame Candida overload for Fibromyalgia problems. They recommend cutting dairy and sugar and gluten and taking varying supplements. There are entire articles devoted to clearing Candida. Well, I have zero Candida in my system at the moment and my neck has been worse and the fatigue has been higher.

I also have “optimal” results in the usual blood tests (thyroid, iron, antibodies etc). All worth checking and noting that “normal” does not always mean “optimal”.

I don’t give up, I store this in my “don’t worry about it” column and move on.

Lesson two: Fibromyalgia is a massive undertaking of trial and error, which feeds into lesson three: you have to do the work yourself.

I have had precisely one doctor who is willing to listen to me, work with me and trial things with me in the 15 plus years I’ve been dealing with chronic pain. That Dr still doesn’t have a lot of avenues to offer me, but he is willing to let me trial things I research.

I turned up with research papers prepared to be persuasive about a trial of Low -Dose Naltrexone, he agreed immediately.

I have tried a multitude of things to fight Fibromyalgia. Physical therapies like osteopathy, chiropractic, massage and physiotherapy (neck traction and acupuncture needles in trigger points help me). Supplements like MSM, magnesium, multivitamins, iron, olive leaf extract, probiotics and a truckload more I can’t remember! (A helpful note here, using powders dissolved in water seems to absorb better than tablets for me).

Yoga, walking, stretching and swimming are helpful exercises that I enjoy. I have to modify for my neck and knees though. There’s also a clearly defined line that I must keep to, 25 mins of walking is enough, less causes pain in the lower body and more causes pain also!

Avoiding allergenic foods specific to me (bananas and dairy are occasional foods, corn and wheat are once per day foods according to my test). This was the one good thing that came out of hundreds of dollars spent on a naturopath. I trialed gluten-free eating a couple of years ago and found no effects while off or adding them back in. However, I do prefer non-glutenous grains like quinoa and millet as they have extra nutrients too.

There is a mind-body component. Meditation simultaneously helps me rest (I cannot nap) and teaches my central nervous system to calm down. Gratitude practice keeps me looking for the silver lining. Prayer helps sustain my hope (and hope is crucial, without that I’m done for). Colouring is calming and enjoyable. Reading is my favourite hobby and doesn’t require physical activity. You need hobbies and you have a right to enjoy these even with a limited energy envelope.

Almost every time I read a book written by a Fibromyalgia doctor, I have found that I have made my way to an approximation of their protocols myself.

This is all by time consuming, expensive, roller coaster of emotions, trial and error.

Lesson four is that you can do All The Things and still have Fibromyalgia.

Clearly I do a lot to manage my health as best as I can. I have learnt a lot and do a lot, daily. But I still struggle everyday with these symptoms. Mostly my neck and sleep. However, until a doctor helps me with my neck, my quality of life and my sleep will not improve. 

I have come a long way since I was struggling through the day, so sore I wondered how my body was functioning, so exhausted I was nauseas most of the day and only managed by holding on to the glimmer of hope that getting enough work experience would mean I could earn enough per hour to reduce my work hours. But there is more to go until I am healed and I fight on.

Fibro Mama Pregnancy Diaries: Weeks 11-14

weeks 11.14In week 11 I went away for my sister’s graduation, that meant planes (always mess me up), long days and a different bed.

Surprisingly, my morning sickness flared up the day before 11 weeks and stayed up while I was away (I slept poorly and was quite sore). I was also hungry every two hours, I really got tired of figuring out what to eat.

My back was not a happy camper. The entire spine seemed mad at me! My neck was it’s normal, stiff and sore self and my low back was intense. I experienced a burning sensation along the lower back most of the day and night and needed to lie on a double folded winter duvet to be comfortable. My upper back went into spasm semi-regularly. My usual physiotherapist suggested I see a physio who specialised in women’s health.

Our nuchal scan (assessing the risk for some genetic diseases) was scheduled for week 13, as this week enabled my husband to make it. He got to see the baby for the first time.

I met the second of the team of two midwives who looked after me, filled in many forms and heard my precious baby’s heartbeat.

My energy levels did get a little better as week 12 progressed toward week 13, but I was still super tired and struggling with sleep. The nausea receded and the hunger became less of an issue, which was a big relief!

As my pregnancy would span winter and spring, and the baby would arrive in summer, I had quite a few seasons to address for my maternity wardrobe. I purchased three maternity/nursing bras, two pairs of maternity jeans, two tops with long sleeves and a coat. I intended to buy a few nursing tops in summer.

It had gotten more exciting and more calm once we made it to the second trimester.


I wrote these posts during my pregnancy so that I could share what it was like to do pregnancy with Fibromyalgia, you might also like these:

Second Trimester, The Second Time

Fibro Mama Pregnancy Diaries 4-6 Weeks

Fibro Mama Pregnancy Diaries 7-10 Weeks

Fibro Mama Pregnancy Diaries 7-10 Weeks

Week seven was when things started to turn around a little. I had been rather sick in week six and had managed to claw my way back by eating every two or three hours, going to bed early and limiting activity.fibro mama pregnancy diaries 7.10

I had lost 1.5kg in the previous week, so actually spent weeks 6-7 lighter than I had managed in years.

My favourite foods, which I devoured unreservedly, were olives, hashbrowns, eggs, salmon and cheese. I still found comfort in marmite toast and wheatbix. I also found that I didn’t get hungry, so much as starving all of a sudden!

Nu, Coop and I managed to return to semi-regular 20 minute walks which took a bit of my limited energy levels, but really helped my body. I also utilised my Pilates resistance band and did some gentle arm and leg work, focusing on stretching. My swissball was useful for pelvic circles to keep my lower back moving.

I didn’t remember sleep being so hard last time! I struggled a lot, going to bed exhausted, but taking ages to get comfortable. And waking about 5am, in pain, only dozing from then. It takes three pillows and an extra duvet under my body to help my low back.

When I could avoid doing too much, my neck was much better. Almost less of a problem than my lower back.

At week eight baby was officially considered a fetus and was about the size of a kidney bean. I met the midwife and had a dating scan. Nu came with me and was enthralled by the little peanut. He told dada that he “saw the baba on the TV”.

At week nine I experienced an increase in fatigue, which caused a day of being bed bound and then evened out again. It seemed my body takes a day or two at each surge of hormones!


I wrote these posts during my pregnancy so that I could share what it was like to do pregnancy with Fibromyalgia, you might also like these:

Second Trimester, The Second Time

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

Week Ten, Blessed – also from my first pregnancy

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!

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!

IMG-20170521-WA0010

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.