Does anyone else find it ridiculous that many millions of people are exhausted; struggle to get to sleep, to stay asleep, to wake feeling refreshed, to have sufficient energy to live; yet their doctors are not (generally) working their butts off to help find a solution?
I had one GP, several years ago, give me the diagnosis of Fibromyalgia, with no other help. Another GP who I saw once, about the same time, put me on amytriptoline. My first GP in my new city had no further suggestions.
My most recent GP seems open to helping and has referred me to a rheumatologist (who’s done nothing so far).
Yet I am still struggling with sleep, a most basic survival need. I am expected to live like everyone else with a third of the energy.
Sleep is an elusive beast. I long for bedtime, my body will tell me I’m too tired to be awake, yet I wake multiple times in the night. I NEVER feel refreshed or well rested.
I have spent much time awake at 5am wishing and hoping I could get back to sleep, only to still be awake when the baby peeps somewhere between 6-7am.
My Fitbit sleep tracking has shown that it takes at least nine hours in bed to attain eight hours of sleep. Usually more like 9-10 hours. There are many awake/restless periods every night. It is uncommon for long periods of sleep.
A sign that made me comfortable with their approach was that they acknowledge that there is no cure. But there are many treatments to help us.
The site suggests some over the counter, natural and prescription medications that can help sleep. They also suggest that some working together, at lower doses, work well.
I have seen the light, I need to try some other tactics to get some sleep. (Always with my GP’s advice, no mixing medicines unsafely!)
My biggest wish is to be able to spend 8-9 hours in bed and actually get a similar amount of decent sleep. That would be amazing!
And so the experiments begin.
Do you have any suggestions or any experience with the above supplements?
This is an old post, but I have done a lot of research about sleep, find some resources below:
I created this series for those of us who want to take one subject at a time in this printable there is the chapter from my book about sleep and templates for making your own sleep hygiene plan and tracking your sleep.
It’s no secret, the third trimester of pregnancy is a trying time. Especially if you have fibromyalgia and any of the comorbid disorders that can go hand in hand with it.
I struggled so much that I was very scared of the prospect of a second pregnancy. The second pregnancy wasn’t much better, but I was better prepared and that made all the difference.
My Top Tips to Cope with the Third Trimester in Pregnancy with Fibromyalgia:
Create a pain relief plan for pregnancy
Find things that are pregnancy friendly and help you manage, write them up, and enact them. This post on pregnancy-suitable pain relief mechanisms might help you get started. Do your research when it comes to medicines – be actively involved with the cost vs benefit analysis with your doctor and be ready to advocate for yourself if you feel they are being too conservative and you are struggling.
Acupuncture helped me with nausea in the first trimester and then with the pain as the pregnancy progressed. In the third trimester I visited my physiotherapist (who performs acupuncture) weekly. I wish I could have had a full body massage as well, but my neck can only be treated in this way and it was a bit expensive to visit the physio and a massage therapist. Try to find a treatment that helps you.
In my first, I walked until the last day of my pregnancy. It was slow going in the last few weeks, but it was for the good of my mind and body that I went. With my second, I couldn’t physically walk very far at all due to the (undiagnosed) symphysis pubis disorder, but I kept up my pelvic tilts and pelvic floors.
Stretch if nothing else. I love cat and cow pose for keeping my back moving, easing tension in my neck and preparing for delivery.
Find what will help. I had a great full body pillow that I curled around. Sleep was still difficult, but it helped!
Don’t stand when you can sit or sit when you can lie down! Don’t become a couch blob, but take it easy! Meditate!
I fell in love with semolina porridge (or sooji as my Indian family-in-law knows it), it became my power dish. Try to really think of food as fuel. Fruit, vegetables, whole grains, protein. This may be a good area to get some advice in as I have certainly found that nutrition has a big impact on health.
Write a journal
Try to focus on the beautiful baby you will be given and that will help you to remember that this time will pass!
Stop work as soon as you can
If it becomes a real struggle and you are so sore that you can’t sit down, like I was, then try to give it up as soon as possible.
One thing you definitely need to do is check your iron levels. Ask the doctor, when your results come in, what the range is (it’s a large range), and if it’s low already ask for an easily digestible supplement. It’s standard here to wait until week 28 before testing and by then I had become so low that my stores were wiped, making life much harder than it needed to be. I was beside myself exhausted! And for good reason!
Join the Pregnancy and Fibromyalgia Facebook group
We chat pregnancy, trying to conceive, labour and the early weeks every day, it has been amazing for my third time around to have a small community to do this journey with me. Join us here.
Finally, know that there is a finite time that you are pregnant for. Try to enjoy it! Stockpile the rest!
Do you want more information about coping with the third trimester, early labour and the early weeks with new baby? Find information, research, tip sheets and templates to make YOUR OWN plans in module four of my Pregnancy and Fibromyalgia course!
“I found it [the course] easy to use and I feel that with that plus your book Pregnancy and Fibromyalgia I have learnt a lot.” – Amanda, Course Participant
You can also purchase the Pregnancy and Fibromyalgia workbook from my Etsy store and work your way through it at your own pace, there is information, further reading, tip sheets, templates and space for notes.
Let us know, what are your top tips for coping in the third trimester?
My little guy has been rather hard for about six weeks now. First he had a virus, then his tummy was upset from the virus and he had lactose free formula for several weeks. During this time he began waking multiple times in the night. And most recently his sleeping habits during the day have deteriorated.
Last night, after another epic one hour battle to get to sleep, he had a 10pm dream feed and then didn’t wake again until 7am! I was so happy when I woke up!
This morning he was so happy and spent a good 10 minutes on his play mat alone. This is something that went out the window with his virus, independent time.
So I’m having a rather nice morning, leaving my boy to my parents so I can go to the Physio. I also got a coffee on my way – it is delicious.
I’ve taken an unexpected break from posting, my baby has required all of my energy and then some for a few weeks. He’s been teething and had a virus, which led to him being on lactose free formula for a while to rebalance his tum.
He’s needed a lot of mama cuddles and decided that independent time is currently not an option.
So I’m going with it.
He’s getting a vaccination tomorrow to protect him from potential exposure to illnesses that are more prevalent where his father’s family come from. Apparently he’ll be quite sore for a while. Next week he will be having his five month vaccinations.
So I fully expect my attention and energy to be on him. This is what motherhood is, especially as a mama with fibro/CFS, you give your limited energy pennies to your precious little buddy.
My neck has been a bit sad and I’ve been almost overwhelmingly tired from two weeks of either not enough sleep or just enough sleep. It’s hard to catch up when you never have more than your functioning quota. Mine’s 8-9 hours, this makes life nicer for me.
This is a useful piece of advice. Find your ideal sleeping quota and strive for it. Now that my boy is pretty set in his 7ish to 6am night routine (waking once or twice) he won’t increase this, even when he’s up a long time in the night. This means that some nights now, I get less sleep than I did when he woke four-hourly!
If you can get away with it, if necessary, take all the time you need to get your quota. Even if you spend 12 hours trying to get 8 broken hours, it’s worth it!
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.
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.
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.
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. Aplan 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.
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.