On my Fibro Mama Pregnancy Diaries page I include my journals from my second pregnancy last year, which I edited and posted over this past year.
I couldn’t believe my baby was coming sometime in the next 7-10 weeks!
This pregnancy was such a different experience to the first one, for which I was so grateful. It was challenging and I was pretty sore and tired (and there’s more to come) but I tried to savour the good bits. To remember the feeling of my tiny baby moving within me, to know I was growing a human life. It’s amazing.
A lot of my to-do list had been ticked off for baby. I was not prepared to go out for long shopping trips anymore. Most of what’s left was to prepare what I could in advance to make life easier.
I had been daydreaming/visualising about how it would be better than last time, without a prolonged labour experience, without being left without my husband in the first days, without my son being sick and needing to be back in hospital after three weeks…The difference this could make. I also had a list of the things I could try while nursing and after that in order to support my health – including rhodiola rosea for energy and adrenal support.
Nursing was occupying my thoughts. With Nu I really struggled, he was sick and a lot of problems arose with that, it also hurt (my nipples were ruined and my actual breasts ached so badly – I cried when I had to go and express). I hated it. It did not help my experience of the first six weeks of motherhood.
This time I was hoping that a better start, the baby being well and a different baby would make a difference. I was hoping that baby will latch well, drink well and not be resolute about going to sleep after one minute! I was also hoping that the entirely different situation will give me some leeway in the pain and energy levels. I had my double expressing machine, nipple cover, cream and ice packs ready. I was going utilise the six weeks my husband is home to really make a luxury out of feeding – go and lie down comfortably with my heat pack and potentially a guided meditation to try to make it a rest at the same time.
My lower back/hips continued to feel rather sore, almost like they were being sawn off. I had found that not taking a walk (in addition to my 8000 incidental steps per day), doing pelvic tilts and yoga stretches on all fours made a difference. As did lying on my side but leaning slightly back on my maternity pillow when in bed. Heat pack, warm showers and arnica rub helped.
Meditation continued to be a life raft. 45 minute body scans with my heatpack about lunch time made a huge difference to my pain and energy levels. The days I couldn’t lie down were quite difficult.
From the day that 30 weeks ticked over, all of a sudden, I felt blinded by exhaustion. By the evening I was in a lot of pain and so tired I felt ill. I had to crawl into bed as soon as Nu was in bed to lie down. Lying down helped, but being in bed for so long made my low back and hips very sore by the early hours of the morning. Being proactive (and knowing at 27 weeks my iron levels had been at the bottom of the normal range) I scheduled an iron injection for a boost. This wasn’t without troubles, it is painful to get the injection and for the day after, and it also leaves a bit of a stain (I still had a stain from where I got it last December). But it actually made all the difference in the world.
I was simultaneously counting down, taking it one day at a time and enjoying my time with Nu.
I thought I would share this journey, as I did with the first, to provide a sense of what it’s like for a mama with Fibromyalgia to do pregnancy. Find weeks 4-6, 7-10, 11-14, 15-17, 18-20, 21-24, 25-29 here and look out for the rest soon!
Following the onset in week 22 or so, my low back and hip pain became worse. Sleeping was difficult, I had to start the night with a hot water bottle and as the night progressed it got harder to ignore. By 5am I wriggled around trying to get comfortable more than I slept. The morning was spent trying to mobilize and push through. My midday liedown became challenging for relaxing enough through the pain to rest and as the afternoon and evening wore on the pain became worse.
I tried third trimester yoga videos on YouTube (this one’s a goodie), used my heatpack religiously, took Panadol and Panadiene as sparingly as possible and attempted to pace appropriately. It felt like the business end of pregnancy came far too early!
I tried to really focus on eating nourishing food such as Bircher muesli, soups and salads. I also took a pregnancy multivitamin and probiotics to support my body.
The fatigue was reasonable (but difficult) given the battle that sleep had become. My body was heavily exhausted but I woke every one or two hours, sometimes more. Getting up was hard, but two year olds wake when they wake and you can’t ignore those loud “mama, mama” calls!
My tiny passenger seemed to make use of his growing space, simultaneously kicking and punching high and low. He always let me know he was there, growing nicely, getting ready to come.
The short Gestational diabetes test was not as awful with better planning this time. I ate a proper breakfast and took reading materials. Though the sugary drink made me feel dehydrated all afternoon!
Unfortunately the results were not good, so I had to do the glucose tolerance test…I had to fast for 10 hours and go to the lab at 8am (with no breakfast or coffee!), have a blood test, drink the same sugar drink, sit for two hours and have another blood test. I was quite unwell with it and so had to lie on the bed in fetal position to stop from vomiting, but I made it! I was pretty wiped afterwards and so hard a very quiet afternoon.
I was super pleased to find the results were “perfectly normal”!
At 28 weeks I crossed into the third trimester. With midday naps, pacing, good food, good supplements and regular physio I felt like I was coping quite well despite the battle that the nights brought (including dead arms every hour). The low back and hips were not so bad when I didn’t overdo it, the upper back was not so forgiving and I did get some regular spasming which wasn’t fun. Lying down with the heatpack, taking Panadiene and meditation helped.
By week 29 I was focused on organising the last of baby’s things so that I could rest more later, reading up on labour and enjoying my last weeks with Nu as an only child. This child brings me such joy and I really revel in the fact that he’s super rough and tumble but always has a kiss and a cuddle for his mama.
I thought I would share this journey, as I did with the first, to provide a sense of what it’s like for a mama with Fibromyalgia to do pregnancy. Find weeks 4-6, 7-10, 11-14, 15-17, 18-20, 21-24 here and look out for the rest soon!
By week 21 my burgeoning bump had taken over! Forgetting my new size, I brushed against things and banged it a few times before learning (that can hurt!). At week 22, I wondered how I could possibly grow for 16-18 more weeks.
A nice, healthy, detoxifying, warming drink I fell in love with was warm lemon (juice of half), honey (1 tspn) and tumeric (1/4 tspn).
I started to think more about the birth. After a 20 hour posterior (baby facing the wrong way causing severe back pain) labour with Nu, I was really keen for a nicer birth story. The news that second labours tend to be shorter and that those who have had posterior labour previously don’t realise they’re in labour until fully established gave me some confidence! I was planning all I could to save my energy and to avoid the stress of the first few days that we had with Nu. The first was that my husband doesn’t leave me, if he had to go, I had to go too! The second was that I know the signs of back labour and if it occured again, I would ask for intervention sooner.
A steady low back ache developed again at week 21, disturbing sleep and making the day more painful. A heatpack, pelvic tilts and child’s pose were somewhat helpful.
The only thing that really helped was reducing my activity level, aiming for 8000 steps or less. I could manage this for most of the week, but on weekends it was more difficult. There’s always too much to do on a weekend and it’s always been difficult to keep up with my husband. Another hard lesson in pacing.
We named our wee boy and the sweetest sound is Nu saying his name and talking to baby through the bump.
At week 23 I felt like there was a lot going on physically. I was put on antibiotics for bacterial vaginosis. My low back and neck were troublesome, to say the least. And I began getting Braxton Hicks contractions. It was time to admit that I was quite pregnant! The countdown may have begun for the end.
I thought I would share this journey, as I did with the first, to provide a sense of what it’s like for a mama with Fibromyalgia to do pregnancy. Find weeks 4-6, 7-10, 11-14, 15-17 & 18-20 here and look out for the rest soon!
The time to give up sleeping on my back came too soon! The night became a rather long struggle of tossing from side to side and waking up to dead arms. My back, shoulders, neck and glutes all yelled at me all night, no matter how I arranged the pillows. Even my meditation/daily rest became difficult due to positioning.
It didn’t help that Nu began really testing the boundaries and took extra energy to manage. Though, he was still very excited about baby, from 18 weeks he talked often about the next scan when he would see the baby dance.
At week 19 Nu got a really bad cold and was clingy and not sleeping well, which was really difficult. My pain issues from sleeping on my side and Nu waking me in the night and very early several times, made coping very hard.
Not having to sit at my computer for several hours four days a week really helped my neck and back. The work I did do seemed to flare it up a bit faster due to the lack of sleep.
It wasn’t all bad news, due to baby being tucked in the back it took a while for movements to become more frequent and obvious (which is the best part of pregnancy, until they wedge a foot in your ribs) but when they came it was reassuring.
One thing my second pregnancy taught me, is that the times my body craves coffee are actually the times I need rest. Having a two year old means I can’t always indulge in a full lie down meditation, however I can sit with my heat pack for a time. It makes such a difference. I can go from miserably exhausted, barely keeping my eyes open, to relatively normal after 30-45 minutes of good meditation.
Plus a 10 minute lie down can make a difference – relax (I use a variety of pillows); Close your eyes and count (in 10, out 10, in 9, out 9 etc) until zero; slowly imagine each body part relaxing (right hand thumb, first finger, second finger etc); lie for as long as you can gently breathing.
I saw an obstetrician at week 19 to confirm that my midwife could keep managing my pregnancy with me. When discussing pain relief she said she’d need to refer me back to the pain clinic, when I expressed my feelings of disappointment with the most recent doctor I saw there, she said that I may get a different doctor. *Sigh* She also said that Fibromyalgia doesn’t affect pregnancy, or vice versa. This stunned me. Pregnancy reduces sleep and places stress on the immune system and body, and Fibromyalgia is worsened through reduced sleep and stress on the immune system and body. The entire body is connected. You can’t have something happen in one area (eg. The uterus) and not affect other areas (eg. The back, neck, shoulders, hips, glutes, sleep system and immune system). So I felt like it was just me and my research in a 20 week endurance event. But I was used to that!
We made sure that my husband and Nu could attend the 20 week anatomy scan – again the baby was very busy so it took some time to capture all the pictures. We waited with baited breath to be told it was a healthy baby boy! Nu took a few hours to warm to the idea that it was a boy. I talked myself into it over the next day. Husband was happy.
I thought I would share this journey, as I did with the first, to provide a sense of what it’s like for a mama with Fibromyalgia to do pregnancy. Find weeks 4-6, 7-10, 11-14 and 15-17 here and look out for the rest soon!
Unfortunately 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.
After 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.
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.
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:
Pregnancy, the First Eight Weeks – this is from my first pregnancy
Week Ten, Blessed – also from my first pregnancy
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.
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:
Pregnancy, the First Eight Weeks – This is from my first pregnancy!
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.”
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.