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”!


More information about pregnancy and Fibromyalgia

Pregnancy andFibromyalgia_resources

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My book is everything I have learnt and researched over two pregnancies.

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.

This is a free printable PDF in my Resources page, sign up here to find it.

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?


 

More information about pregnancy and parenting with Fibromyalgia:


Pregnancy andFibromyalgia_resources

What it’s Really Like to Live With Fibromyalgia

I tend to sanitize my illness for people. Or I’ll say what’s bothering me the most (usually my neck or the fatigue). Usually my writing is very positive and I try to look at the bright side – what I can do, not what I can’t. Today I am going to share what it’s really like to live with Fibromyalgia, as someone who has lived with it for more than ten years.

what it's really like to live with fibromyalgia

The definition of Fibromyalgia, chronic widespread musculoskeletal pain, chronic fatigue and sleep disturbances, doesn’t convey the depth of the impact of this illness. In addition, the body is a whole – therefore one system acting up has effects on others, for example my tummy tends to get upset when I’m very sore.

Could a person imagine that they had one or two hours less sleep than their body needs, never sleep in a block of longer than one or two hours (that’s rarely completing a whole sleep cycle), spend some time awake (alone, in the middle of the night) in too much pain to sleep, need a medicine to help them get to sleep but still struggle to do so, and never wake feeling well or refreshed (whether they’d had four or nine hours sleep) EVERY DAY for ten years, they may understand my illness.

People who are just tired don’t get this level of exhaustion. This level of fatigue causes brain fog – loosing words, swapping words, memory problems and clumsiness.

I do everything possible to maximise sleep. It just doesn’t seem possible for me to sleep well.

In addition to the sleep problems and soul crushing fatigue that accompanies this, there is the pain. Chronic pain seems so tidy a term. What it means is that I have pain levels of 4-6/10 every day.

My neck takes the centre stage, interrupting sleep, being extremely stiff in the morning and generally tight and sore. When it gets worse it causes secondary symptoms – severe headaches, dizziness, nausea and vomiting. I have to see a physiotherapist every three weeks for neck tractions and acupuncture to keep it away from the worst end of the spectrum. Working at a computer, sitting still, and moving too much aggravate it.

My back is a close second, it often feels two moments away from spasm – like the back of the ribs are electrocuting it. When my lower back gets sore it radiates down into my glutes and upper legs. All down the spine are tight, angry muscles. I have to put a pillow under my legs in order to lie down.

There are more transient pains that come and go, such as my wrists and lower arms when I’m at work. My upper arms always feel bruisy, if I bang into a door frame (brain fog steals spacial awareness) it can hurt for ages, people grabbing my arm hurts far more than it should (hyperalgesia). Severe period pain for a week every month (dysmenorrhea). My knees have recently decided to join the party and have caused some problems – on some days the pain gets so bad that I can’t walk and walking is one of my daily pain management techniques.

Fibromyalgia also causes flare ups – a temporary exacerbation of one or more symptoms lasting from a day to several months. My entire pregnancy and my son’s first year were a giant flare up, all of my symptoms were wildly worse (pregnancy symptoms are like mild to moderate Fibromyalgia symptoms – so I had a double dose).

Sleep deprivation doesn’t help pain. There’s been studies on this – healthy subjects subjected to minor sleep deprivation develop Fibromyalgia symptoms. Luckily for them they could have a few good night’s sleep and recover. Severe sleep issues has been widely researched and is extremely detrimental to health .

Every day requires multiple pain management techniques. Including stretching, meditation, resting, pacing, walking, trade offs and judicious use of pain medicines. My pain specialist has recently made me see that by not controlling the pain as well as I can I am causing physiological damage – chronic pain changes the body – and I am leaving myself susceptible to more pain and fatigue. The neverending cycle of Fibromyalgia.

You might also like:

Free Printables from Melissa vs Fibromyalgia Book

My Low Dose Naltrexone (LDN) for Fibromyalgia One Year Experiment

Essential Oils for Pain Relief and a Pain Cream I am Loving

What I’d Start with upon Diagnosis with Fibromyalgia (If I got a Do-Over)

Here’s the thing – I manage this illness well.

I, mostly, kick fibro’s butt. I work 20 hours per week, have a toddler, a hunky hubby and hobbies. I do a lot while in a lot of pain. There are people far worse off than me. There are people with milder symptoms than me. But for my level of symptoms I cope remarkably well. The pain specialist, my doctor and the rheumatologist are impressed with my progress. The pain clinic has nothing but medicines to offer me because I do everything else they suggest.

I wish, with all my heart, that I didn’t have these limitations. I fervently pray for healing. I feel more guilty than anyone could know about the effects of these limitations on my family.

So when I make a call to miss out on something, to go to bed or ask for help – I’m far past the point I can push through.

I have exhausted every avenue I have and know I can’t afford the consequences coming to me if I don’t rest. I’ve been doing this for ten years. I have lived it, researched it and constantly push myself. So all I ask of the people around me is to respect it when I say I can’t do something or that I need help. Trust that I am just trying to live well. It’s incredibly hard and I survive only by my faith in God and incredible willpower.


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Amitriptyline – Off and On Again

Amitriptyline is a tricyclic antidepressant that, when taken at a lower dose, can help with the sleep disorder and the pain associated with Fibromyalgia. I had been on it for nearly 10 years, since before I was diagnosed. medicine-thermometer-tablets-pills

Struggling with restless nights (losing 50-70 minutes a night to awake/restless times), I asked my doctor what else may help and he suggested I increase my dosage. But I didn’t want to do this.

I also wanted to be sure it worked, I had a fear of being stuck on it forever, without really knowing it worked. It was also a scary proposition to go off it and not sleep.

I sucked up the fear and started my experiment in November 2015 and tapered off by 5mg at a time. In the reductions from 50mg down to 30mg my sleep actually improved. But the fatigue increased, I became very fatigued and struggled to stay awake during the day.

By the time I got to 10mg at the beginning of January 2016, I was sore, sensitive and (more) exhausted. My sleep was light and it was difficult to get to sleep and back to sleep when woken.

On my first night completely off it, it took a little while to get to sleep, I slept deeply (I think, I didn’t take my Fitbit on holiday) from 12-6.30am and then my son got up. I was exhausted and sore.

As I continued it took longer and longer to get to sleep, except for the few nights when I was so miserable and exhausted I fell asleep fast and slept like the dead.

I tried 5-HTP and SleepDrops and lavender massage oil. I tried keeping the same bedtime routine, hot baths and no caffeine after lunch. I tried meditation, yoga and any pillow set up possible.

I was experiencing more wide spread pain, near constant headaches and worsening fatigue. I wasn’t coping.

I went back onto 25mg of amitriptyline and had a big sleep on the first night. And a normal sleep, albeit with a six hour block on the second night.

Within a week I was back to getting to sleep well, sleeping restlessly (mostly due to pain), but getting (a broken) eight hours. This doesn’t seem like a win, but it’s the same situation as before with half the dose of amitriptyline, which is a win. The headaches have mostly receded and the generalised, all over pain has quietened. The fatigue is more manageable.

I can only conclude that amitriptyline is working for me at the moment and I am happy enough with that. It has a valid place as the base of my wellness plan.

Things I’d Like: 2016

It’s 2016! That happened quickly. There are more than a few things I’d like from this year, from the profound to the trivial. A sort of goals list. I’ve compiled them below and will come back to them throughout the year when I need a reminder of my intentions.PhotoGrid_1451589339246

  • I’d like to challenge the perception that one must just “do their time” when they have kids, that sleep deprivation and self-denial is some sort of rite of passage.
  • I’d like to find a way of socialising that doesn’t involve my pain and fatigue levels spiking. We could have rocking lunch parties.
  • I’d like to be unashamed of my preferences and needs and wants. Especially when it’s contrary to those around me.
  • I’d like to stop feeling guilty for what I’m not doing for my family’s sake. Especially when I’m already suffering the consequences of overdoing it for their sake. I’m always going to feel bad when I hold them back, but it costs me so much more when I push myself too far than it does for them to compromise. Which leads to the next one:
  • I’d like to get a better balance of overdoing it and not pushing it (in the right direction) enough. Enacting my cost/benefit analyses better.
  • I’d like to create a toolbox of options to help me sleep well. This doesn’t include permanent medicine, if I can help it, I plan to be off amitriptyline by next week.
  • I’d like to lose a few kilograms and increase my exercise tolerance.
  • I’d like to go to Fiji. This is a few hours of flight time from here and a different climate, a toe in the water for further afield.
  • I’d like a regular date night with my husband. This has been an aim since we were married, but between his shift work, the baby and other commitments, it gets shoved aside too easily.
  • I’d like to get my B12 and iron levels to a better level.
  • I’d like to keep learning.

The list isn’t exhaustive, but enough to keep me moving in the right direction. Do others have a similar list? What sort of things are on it?

Curcumin for Chronic Pain

When I came across using curcumin for chronic pain, I found the specific product Curamin, I was becoming rather despondent about my neck pain and the effects it has on my life.Curaminb

It felt like my neck was getting worse and progression is the closet worry of a mama with Fibromyalgia (it’s not supposed to be progressive, but it developed over a period of ten or so years before plateauing for several).

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I was curious and also wary. Nothing ever seems to give me the effect advertised, or noticeable positives.

The ingredients in Curamin

Curamin “is a blend of all natural ingredients such as DLPA, boswellia and nattokinase which are proven anti-inflammatory compounds. DLPA boosts the effectiveness of endorphins and enkephalins (pain relievers already in the body), nattokinase boosts circulation and alleviates muscle pain by balancing fibrogren levels in the body while boswellia has been known to remove pro-inflammatory compounds.”

Dr Teitelbaum recommends it as one of his favourite 10 supplements for Fibromyalgia/Chronic Fatigue Syndrome.

My experience

From the first day I noticed a change in my neck, it brought the pain levels down a point on the pain scale.

It also helped me in the night. Recently my neck was becoming so bad that I woke several times and needed to change pillows multiple times. I was waking with extreme stiffness causing severe headaches.

The Curamin enabled me to get better blocks of sleep and this has translated into more energy – it lasts me longer into the day.

I still, however, started to get sleepy very early. I have learnt that there’s a difference between fatigue and sleepiness.

I have revelled in feeling just a bit less soul-crushingly fatigued.

The true test for the difference it makes came when I ran out before the new bottle arrived, I slept poorly (the restless/awake time shot back up to an hour with less blocks of sleep), felt super exhausted upon waking and my neck pain went up a level.

It is so nice to have found something that helps. Unfortunately, neither curcumin nor boswellia is recommended for pregnancy or breastfeeding, so mamas who are going down that path will have to give it up for a time.

For me, the cost is worth the effect. I completely understand that nothing works for everyone, but, if you’re not allergic to these ingredients, then it may be worth a try.

What are the options?

The “original” Curamin that I tried

Curamin PM for nighttime relief

Curamed is curcumin without the three bonus ingredients (DLPA, boswellia and nattokinase).

curcumin for chronic pain

Update August 2019

Having been pregnant and nursing for the past 1.5 years I have not been able to take this (turmeric in food doses is all that is recommended). I have been taking MSM, you can check out my post about this here.

Has anyone else tried this? Or other things that have a similar effect?


For help with your fight:

Tiny Mission Sleep – Melatonin

After declaring war on my sleeplessness, I have formulated a new series of Tiny Missions to attempt to get some sleep. To get 8-9 unbroken hours per night with as few restless/awake periods as possible.yawning dog

Recently, I have tried chamomile tea, SleepDrops and altering the time I take my amitriptyline in order to see if I can effect better sleep.

Through my observations I have managed to learn that my neck tends to be what wakes me up and keeps me restless. So it’s part sleep, part pain that make sleep so elusive.

Having heard personal reviews from people in a Facebook group and coming across research in support of the use of melatonin in Fibromyalgia, I decided to give it a try:

“Melatonin has been reported to improve sleep, severity of pain, tender point count, and global physician assessment in patients suffering from fibromyalgia. One commentary describes how melatonin 6 mg was given to 4 patients with fibromyalgia. After 15 days of treatment, patients reported normal sleep and a reduction in pain. At this time, hypnotics were withdrawn. Other medications such as analgesics and antidepressants were withdrawn after 30 days. They continued to report normal sleep patterns, lack of pain and fatigue and improvements in behavioral symptoms, such as depression.”

On the first night I took 3mg of melatonin in addition to my usual amitriptyline dose. It was a pretty positive start to this experiment! I achieved 8.5 hours of sleep, with only 30 minutes wasted on awake/restless times. Both significant awake times were my husband’s fault. I felt like I slept soundly, so was surprised at the presence of any restless times. And while there were – I managed a few blocks of sleep long enough to be a full sleep cycle! I woke at 630 and was unable to get back to sleep, but unlike usual occurrences, I’d managed to get enough sleep already.

Night two was not as good as I hoped after such a good first night. My neck caused me to be quite restless until 4 when my husband woke me when he got up for the rugby final. I was stuck awake and in a lot of pain. I wonder if the melatonin wears off making it harder to get back to sleep when woken. It was a miserable morning.

Night three made me acknowledge that my sleep cannot get better until I can manage my neck. I had a few blocks of one or so hours sleep, but still lost an hour to awake/restless times. I felt a bit heavy in the head and didn’t want to get up. But otherwise quite relaxed (apart from the neck).

The fourth night was somewhat better. I had a five hour block with very few restless lines in it! My neck was very stiff and sore after this though, it took 15 minutes of trigger point massage to get back to sleep. My pain level in my neck was 7/10 when I woke at 630 and I felt extremely groggy.

The feeling of having slept soundly is a very nice one. On the fifth night I woke, earlier again, to a feeling of having slept and my neck wasn’t super tight, it was about a point below the usual first thing pain levels. My Fitbit sleep chart showed a block of four hours sleep and a block of three hours with only 45 minutes restless/awake in total. It did take half an hour to feel less foggy and be able to get up, but it was quite a relaxed feeling.

After a few nights of my son and a few other external factors interrupting my sleep, I was not feeling well. However there were continued periods of more thorough restful sleep spots – 2-4 hours of almost complete rest.

My sleep deteriorated over several nights, but I persevered for a few more nights, really wanting to see if I’d adjust, but I had to realise that sleep is paramount.

After 12 nights of increasing pain and fatigue, I checked with the pharmacist and agreed to reduce the melatonin to 1.5mg and leave the amitriptyline as it was in order to try and stabilise.

After two further nights of greatly interrupted sleep on 1.5mg, and days of headaches and extra tension, I took a break from the melatonin.

The first night off melatonin and I had a seven hour block of sleep! There was only 15 minutes awake/restless. I managed eight hours total. One thing that I did was have my husband help me to stretch my neck, so it felt less compacted, that made a big difference.

It was a worthwhile experiment, but, for me, melatonin is best saved for a once in a while sleep help and only for a couple of days.