Five Ways I Cope With Fibromyalgia: AKA Lifestyle Choices to Live Well

We all know the recommended steps for being well- eat healthily, exercise moderately and get plenty of sleep. I believe that people with Fibromyalgia need to adhere to the healthy living guidelines, augmented to their ability level, of course. But what happens if no matter what you do, you are exhausted and sore? There’s no escaping it, you have to do the work.

Here’s the five lifestyle choices I make daily to cope with Fibromyalgia and chronic fatigue:

1.       Healthy eating

Food is fuel, right? Everyone should eat healthily with a diet full of fresh fruit and vegetables and rich in whole grains and protein. When you are battling extreme fatigue and travelling muscle aches, what you eat can be of great help.

In my worst flair ups, my food diary used to become a love song to carbohydrates. I subconsciously craved fuel that my body could turn into energy; unfortunately, all those carbohydrates created the opposite effect. My already exhausted system was battling its way through the simple and complex carbohydrates I was throwing at it every few hours – it had no time to create energy. It took a few days of concentrated effort, but once I replaced a few of these servings with other foods, I began to feel the effects.

For me, eating a moderate diet rich in fruit and vegetables is a good start. Some people swear by Paleo, or Keto or gluten free or some such diet – it’s all worth a try.

2.       Exercise

Unless your doctor forbids it due to a medical condition, you should be exercising. A person with Fibromyalgia will work at a lower intensity and for a shorter period, but they should still exercise.

The amount of energy I have fluctuates, depending on many things, but I always go for my walk with my dog. Sometimes it is only around a 15-minute block, other times I will go for a course with a decent hill or will walk for a little longer. I have found 25-30 minutes to be ideal for me. I am always treading the fine line between proper muscle exhaustion and pain. This can be hard to monitor with constantly changing goalposts like fatigue and pain levels, but after two years, I have worked up to my current level.

Pilates is my favourite form of resistance exercise. I have done it faithfully for about ten years. Sometimes I operate at a beginner level and other times I can advance the exercises. When I was starting again after a bout of extreme pain, my physiotherapist created a 20-minute programme for me to follow. With my experience, I was able to advance the exercises as my energy levels allowed.

I have found it very important to keep the strength in my muscles with gentle activation. There is a strong correlation between less exercise and more pain.

lifestyle choices I make daily to live well with fibromyalgia

3.       A compassionate, knowledgeable physical practitioner

My physiotherapist is a valuable component of my healthy life. Someone you trust, who knows about Fibromyalgia and can bring about lasting changes with their treatments is vital to coping with long-term pain and fatigue. Someone who can come alongside you and take the burden of your body, even if only for half an hour is great for physical and emotional health.

My physiotherapist is the only person I can speak candidly to about what I have been coping with for the last 7-14 days (depending on how long I can stretch out the periods between treatment). After trying many of the different types of therapies, I have found acupuncture to be (one of) the least invasive and longest-lasting treatment.

Other posts you might like
Why I’m Treating the Fibromyalgia as Naturally as Possible
My Daily Log, Why I Track Fibromyalgia Symptoms
Free Printables from Melissa vs Fibromyalgia Book

4.       Sleep and rest

Sleep is my hardest battle. A full night’s sleep is the best way to cope with life. I try to go to bed around the same time every night and have a set routine that involves getting ready and reading before I switch off the light. I also try to get up around the same time every day. This helps, but I will not always sleep through the night, I will not always fall asleep straight away and I will often wake up at 4am (or every hour or two) with an incredibly stiff and sore neck. Since I began Low Dose Naltrexone in 2017, I have finally managed to sleep in blocks of more than an hour! I don’t sleep through the night, but I do sleep much better and this has flow on effects.

In order to cope on days when the kids have had me up in the night or the fatigue is just worse, meditation is a go-to. I can’t nap, so meditation is a way to get decent rest when I need it.

5.       A plan for the “hard” days

These are inevitable. Everybody gets sick from time to time. A person with Fibromyalgia will have some harder days. I have found a written list with suggestions for what to do on one of these days to be useful for pulling me out of the downward spiral of panic that accompanies intense pain.

Things like:

  • Specific stretches for my neck (tightness in my neck often causes headaches, nausea, dizziness and extreme fatigue)
  • Things I can do in descending order of ability (a gentle walk, gentle stretches, watch a DVD, read, lie down with an audio book on, lie down and do nothing else)
  • A reminder of the pain relief options I have at my disposal (wheat pack, icepack, heat cream, Ibuprofen, prescribed pain killers) – you would be surprised at how often I forget these things exist in the grips of serious pain.

All of these ways for coping should be underpinned by hope. Hope that your “hard” days will occur less often. And hope that you will be able to compile a life that is heading towards wellness, rather than just away from sickness. This is what I have experienced over the past two years as I have found more to help, particularly the low dose naltrexone, and it is what I hope for you too.

19 Weeks…It’s a Boy!

I fell down.

One Sunday morning, a few weeks ago, I woke up to pain in my left side and lower back. As the day wore on it became intense. In tears, on the phone to my midwife, I was told it was probably a pulled muscle. I took a Codeine and lay on the couch, vaguely watching TV.

After a painful physio visit the next afternoon, it was confirmed, I had pulled muscles in my lower back and left hip, which in turn had tripped my very tight glute muscles.

Since then, I have recovered slowly, but in dealing with the extra pain and resulting fatigue, I have fallen down. I haven’t been coping. Between the pregnancy and those injuries, sleeping is very difficult. I can only walk the dog for around 15-25 minutes at a time and have had to give up my mat Pilates routine.

In addition to this, I have been planning my wedding, for February 2014.

So I am planning a wedding, working, gestating, attempting to be healthy and am desperately, soul-achingly exhausted – and no one seems to get it.

Meanwhile, my baby has been growing furiously! I felt my little flutter ball the other day for the first time and then saw him yesterday in the anatomy scan.

Yes, we have been blessed with a baby boy! Feeling and seeing him makes it feel worth it! It is so amazing. I can’t wait to meet him.

I just wish I could focus all of my limited energy on preparing for him. He is my priority.

This is a pregnancy diary from my first pregnancy in 2013/14. For my most recent pregnancy diaries and my pregnancy resources see here.

Week 14

My neck has been uncomfortable for my whole pregnancy (yes, 14.5 weeks of 5-7/10 pain every day). So on Friday I went for a massage, unfortunately they thought that due to my pregnancy they shouldn’t use the usual pressure. Needless to say, I went away with almost as tight shoulders and neck as I went with. With chronic pain and fatigue, caused by chronic tightness in these muscles that I use frequently (especially for work), the only method to release the muscle (and therefore gain some respite) is deep tissue stimulation.

Due to my increasing pain over the weekend, last night I slept very poorly. I do have an appointment with my physio on Wednesday and I am counting down to it. Also, I am counting down to the end of the pregnancy, when I can have something stronger than paracetamol again!

I confess, I had been hoping to keep the maternity clothes at bay with belly bands (that cover my open pants button and keep my pants up). Most of the time, I am more bloated than pregnant, so I prefer to have nothing around my waist. It feels rather early to contemplate maternity clothes though…I am so pleased that I mostly work from home, so I can sit here with my pants wide open or live in tunic tops.

In unbearably cute news, I bought my first item that wasn’t a big-ticket, budgeted one…a tiny hat! It is mint green with a knot at the top, I can’t believe my baby is going to fit into that little thing.

We met the midwife this morning and heard the heartbeat. Due to belated shifts in timings for the scan (by the radiology company), my partner hadn’t made the scan appointment, therefore he hadn’t heard baby’s heart beat yet. That tiny, rhythmic beating, engenders such hope, such happiness, such contentment. I was so glad to share that with him. We are now on the countdown to the anatomy scan in four or five weeks!

This is a pregnancy diary from my first pregnancy in 2013/14. For my most recent pregnancy diaries and my pregnancy resources see here.

So Much Has Happened!

The last week and a half have been massive! I was awed by seeing my baby by my 12 week scan on the Thursday before last. Then on the Saturday, as a birthday present from my love, we went over to Kawau Island (off Matakana, North of New Zealand). The water was deliciously blue as we were shown around the edges of the island by boat, before being dropped off by the Governor’s Mansion.

We walked through a track in forest land to a remote beach…where my love proposed!

It was the most beautiful, romantic proposal I could have imagined. I was blown away. Of course, I said yes!

We then spent the week touring the upper parts of the North Island, as I had never been past Matakana previously. It was beautiful. A whole week, mostly alone with my love, to be calm and just enjoy. We experienced the richness of New Zealand’s history in Russell, at Waitangi and in various historical properties around the areas we traveled.

In the middle of our trip, the pregnancy clock ticked over to 13 weeks. Over the past week, I have noticed an improvement in my fatigue. I am still tired, but then I have chronic fatigue so that’s usual, but I am no longer desperately tired from the moment I wake. I no longer crave a nap at 10am or in the afternoon. I am back to afternoon rests (with a book or an episode of a TV series) and I can read before bedtime again! My eating has also settled down. I am still hungry regularly, but I am closer to my usual eating habits, which is great as I have put on a bit too much weight with the fatigue, pain and nausea.

So it is all very exciting!

12 Weeks & a Beautiful Baby

My tiny baby is gorgeous! I saw baby in my 12 weeks scan today. It was a very moving experience. Baby is healthy and on track for growth. He/she was sleeping when we began with a little hand raised above their head. Once he/she had been prodded a bit we got to see some movement. It was surreal to see baby moving, but not be able to feel it. It was truly a wonderful experience.

Unfortunately, due to the clinic cancelling my scan at the last minute two days ago and having to take the only time available (midday) this week, my partner couldn’t attend. This is very sad because, as a dad it is one of the few times he can really be involved at this stage. But we have a picture:

Now that I am at week 12, I feel like I can finally buy stuff. I have already researched all of the big, essential items and there are big differences in price! In an online store there are cots with mattresses for around $200, in a store the other day the prices seemed to start at $500 for just the cot! So I have to be wise and check the price (and quality)!

We have decided to go with a convertible car seat, rather than an infant capsule, because it will last the baby’s whole career in a car seat and then be useful for any future babies, it is a worthy investment. Also, having the noodle arms that I have, carrying the infant capsules is rather difficult for me!

As we leave the first trimester, and come into the second, I am hoping the fatigue will recede a little and that the hunger will abate to a more manageable level. As it is I can only fit one pair of my pants!

This is a pregnancy diary from my first pregnancy in 2013/14. For my most recent pregnancy diaries and my pregnancy resources see here.

Emotions and Mood

I have always prided myself on my effort to keep a level head, despite extreme fatigue and pain and the associated barrage of emotions that come from dealing with that.

But at the moment, I am a mess! I can get really sad, for no real reason and I can’t bring my head into it to tell myself it is just a moment and it will pass.

I prefer to be positive, especially when talking about my fibro/chronic fatigue. Positive but real. My neck has really amped it up, the pain levels have hovered around 5-6/10 almost every day. Sometimes they shoot up to 7-8/10 and only being allowed Panadol is really hard!

In just four days I get my first week-long holiday since Christmas last year! So I am counting down!

Post-Exertion Wipe Out

This is an old post on the post-exertion malaise I experienced in early pregnancy, when I wrote diary-like entries during my first pregnancy. I found myself alone with not even doctors who understood what might happen to me. One doctor suggested I ought to be feeling better (which I most certainly was not) but what an odd, uninformed thing to say! For the most recent pregnancy diaries from pregnancy number two and three see my Pregnancy and Fibromyalgia resources page

post exertion wipe out: pregnancy and fibromyalgia

Diary entry

With the high levels of fatigue and struggle to sleep, my body is struggling a little. I have found that post-exertion I am wiped out. Walking up the stairs can leave me a little breathless. But my 25-30 minute walk with the dog can leave me flat for a good half an hour. 

I was finding the level of fatigue after yoga or Pilates unbearable, which is why I have done neither in a few weeks. I was feeling wiped, to the point of feeling faint, so I’ve had no inclination to force myself again yet.

However, I want to try to do a gentle session of Pilates tomorrow, to get back into it again. I want to reclaim my little schedule as soon as possible. I am determined to help my body prepare for the endurance race ahead, with pregnancy, labour and then caring for a tiny baby.

Meanwhile, I am so pleased it is time for another weekend. Tonight my love is coming over for the evening. Tomorrow I shall meet a friend, do some exercise and otherwise potter around home. On Sunday we are going back down to the little town we have found for another round of house hunting. This time we are taking my mother, so she feels included and realises it is not so far.

Feeling so blessed to have my mother onside. She came with me as I met my midwife for the first time today and she is already talking about the things to buy me for when I get bigger (thanks, but I’d like not to think about that for a while yet)!

Articles for you

Pregnancy Diaries 2018: The First Trimester of Pregnancy with Fibromyalgia

Pregnancy and Fibromyalgia: An Interview with Doctor Ginevra Liptan Fibromyalgia Specialist

Things to Consider Pre Pregnancy with Fibromyalgia, Chronic Pain, Chronic Fatigue

The Paced Guide to Cleaning: AKA Cleaning With a Chronic Illness

Fatigue and Energy in Fibromyalgia -Fibromyalgia Framework Series Part Seven

If you wanted a good explanation of post-exertion malaise you may like this article.

Are you new here?

Hi! I am Melissa, a mama who has had fibromyalgia throughout all three pregnancies. I have worked hard for the past several years to compile the information that I wish existed back in my first pregnancy when I could find nothing. Checkout the Pregnancy and Fibromyalgia Resources page here.

Week Ten, Blessed

We now have a fetus, rather than an embryo! It is very exciting to be past the critical development phase. Now that we are on the downward slide to 12 weeks and our next scan, I am getting excited to tell people and to start buying the many things we need.

I really hope the fatigue will drop off enough to allow me to do some gentle Pilates again. My neck is really struggling without it, to the point of keeping me awake and waking me frequently in pain. I am off to the physio today, so I am pleased about that.

It is rather shocking that I have a baby growing inside me. It is something I have always dreamed of and known I’d do, but to actually be pregnant is something else. Despite being earth-shatteringly exhausted, sore and the rest of it, it somehow feels, deep in my core, worth it.

Of course I am nervous about a great many things. Number one is how I am going to manage physically with fibro/chronic fatigue, baby and a job. Though, I do know the number one priority will be baby and then my health, the rest has to fall into line. For now, I have to focus on continuing to grow her/him and keep her/him safe.

 

This is a pregnancy diary from my first pregnancy in 2013/14. For my most recent pregnancy diaries and my pregnancy resources see here.

Fancy Date Night

Last night was fancy date night. A date for just us, out for a nice meal and I dressed up! We went to a fabulous Japanese teppanyaki restaurant, where our food was cooked in front of us by an amazing chef. She flung the utensils in the air with ease and cooked my seafood dish to perfection.

Being a fairly new couple, about to buy a house and have a baby, we still have some things to talk through. Religion has been nutted out fairly hard, I’m starting Catholic conversion classes this week.

We had to talk financials last night and the issue of being unmarried came up again. I know people get divorced everyday, some celebrity marriages survive shorter than my gestation period will, but it makes me feel insecure. Like it’s a box that’s unticked, but a rather important one to me. My partner would like me to be super close with his family and then he would like both of our families to be close. I can’t do much about the family thing as there are just massive differences, they will get along, but they probably won’t share Christmas. I can hang out with his family more, except that he laughed at the fact that I struggle to go over for a 9pm meal and then drive home alone later.

With my fatigue levels at the moment, I wait for bed all day. By 7pm I am exhausted, I don’t enjoy leaving the house. At 9pm I am usually getting ready for bed. If I get home and take my medicine (to help me sleep) at 10pm, I won’t sleep until around 11.30pm, It takes time to kick in. So nights out for parties with his friends, nights out for dinner with his family and fancy date nights, on top of what I’m currently coping with, is a lot.

Is it the same for every partner, do they not get the level of fatigue that early pregnancy generates?

Tiring, Awesome Weekend

Chronic fatigue + pregnancy fatigue = devastating!

We had a very busy weekend. On Friday night my partner and I went to a party and I didn’t sleep until about 2am. On Saturday I took my baby brother out for timezone, lunch and mini-golf. We also had dinner and a movie night with my family.

Sunday was a whopper day. We started with my church (Anglican) and then went about 45 minutes drive away to a gorgeous little town where we are considering buying a house. There is a sizable town center, farmland views, a rugby stadium, a beautiful pond with ducks (near one of the houses), many beautiful reserves and parks, and it is so quiet. Just 45 minutes out of the city, we can get three or four bedrooms with a little bit of land in a nicely presented house.

image

For the same price in the city, we can get two bedrooms, attached houses in dire need of a makeover with little land.

We also did evening mass and dinner with my family.

When I finally did get to bed, I got quite upset, because my neck was so sore I couldn’t get to sleep and panadol does nothing for a bad neck ache!

But the weekend was worth it. I got to spend some time with my gorgeous baby brother (14 years old next month, where did the time go? I remember my parents bringing him home as a brand new baby!).

We were also able to tell my family on Saturday night about baby. They were over the moon. Which was so fantastic! It was such a relief to have people in the know and the support and love. I don’t know how I hid it this long.

My beautiful partner has also started to perk up and get more excited about baby and our big life changes. He also dealt beautifully with my fatigue, needing to eat randomly and pain all weekend.