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.
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.
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.
- 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?
With the end of the year at hand, I have been reflecting on where I am at and all of my experiments. I have learnt a lot through ever increasing threads of information.
Me and my little elfie!
I have taken 50mg of amitriptyline to help with sleep and pain for nearly ten years.
Earlier this year I got fed up with the fact that I take this medicine everyday and yet I still struggle to sleep well – loosing up to an hour a night to restless/awake times is not “good” sleep. So I have tried SleepDrops, chamomile tea and playing with the time/dose of amitriptyline (anything but a higher dose). Finally, after a lot of research, I tried melatonin and reported back on that here.
Research has confirmed my suspicions that the amitriptyline is not helping as much as I hope and any effects must have worn off. So I have slowly begun to reduce my dose. Currently, I’m on 20mg.
I found Curamin and report back on this here. With its help, I have managed to get blocks of sleep, longer than an hour or two! Before I ran out waiting for the new bottle to come, I was consistently sleeping for five or six hour blocks. This made a huge difference to my day and my energy levels were slowly picking up.
Sleep is a huge battle and has a huge impact on my day – but I’ll be happy when I’m not reliant on chemical manipulation to sleep.
My neck has been hovering at 5-6/10 most days. It will reduce slightly after meditation and physio (acupuncture).
It did creep up to 6-7/10 for a good few months in a prolonged flare, but the Curamin helped bring it back.
My shoulders and back tend to be consistently tight and move from moderate to minor pain depending on sleep and the day.
My knees have been giving me a lot of trouble, the physio thinks it’s due to one of the quad muscles being lazy. The rheumatologist wasn’t bothered at all that I suddenly have joint problems (my index finger joints have become achy) after years of stable symptoms. The Curamin seems to have helped this. As does the yoga.
My fatigue levels have hovered at about 5-7/10, depending on a lot of factors, this year. First thing in the morning I feel really foggy. I crash late morning and mid-afternoon. And become too sleepy to hold my eyes open by 9pm.
But I am managing working 20 hours over four days far better. It’s difficult to come home with the toddler and not get a rest or time to meditate, and this has caused corresponding increases in fatigue and neck pain.
Well Being Practices
My staple supplements are Curamin and high dose magnesium.
I try to meditate (body scan or Yoga Nidra of varying lengths) most days, I feel like it really helps. As I said above, it can reduce my pain and fatigue levels, and, when done around mid afternoon, helps me cope with the evening routine better.
I see a physiotherapist who performs acupuncture about every three weeks. This is vital for my neck, the little needles in key points for 15 minutes allows them to release. They also do a neck traction which helps it to feel less compacted.
I try to be mindful of what I consume. I have a smoothie most days and adore salads with a variety of veggies, nuts and seeds. I aim for more than five serves a day (which I don’t always hit, but its a good goal!)
My exercise levels have taken a hit with my knees playing up. I walk 20 minutes when I can and do yoga as often as my energy/knees/time allows.
- Acetyl L Carnitine – meant to increase energy and repair nerves. I did this for two months and upon stopping couldn’t ascertain a change. There was too much going on.
- Melatonin – after 16 days of awful sleep I aborted the mission.
- D Ribose and CoQ10 also weren’t for me.
- Probiotics were really useful when I was beset by gastrointestinal symptoms and infections.
- Iron supplements and B12 injections monthly, I have a month to go on a three month experiment, but the iron levels have already crept higher than I’ve ever seen them!
I’m so grateful that I’m in a far better place than I was a few years ago or when I was pregnant. My passion for finding better options for me and for sharing them with others is not diminished, so I’m looking forward to continuing in 2016.
I want to wish you all a happy New Year. Thank you so much for reading my little blog and sharing my journey with me. X
When I came across Curamin, I was becoming rather despondent about my neck pain and the effects it has on my life.
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).
Some of these links are affiliate links, I may make a small commission at no extra cost to you. I only recommend what I support.
I was curious and also wary. Nothing ever seems to give me the effect advertised, or noticeable positives.
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.
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.
Update February 2018
I have given Curamin a break for now, in favour of MSM and trying some new supplements that I’ve been researching. But I will utilise this again in the future. I think a rotation of supplements is a good idea.
Another way to try the benefits of curcumin for chronic pain is to make your own capsules. Purchase turmeric, a little black pepper (add a small amount for absorption) and empty capsules.
Has anyone else tried this? Or other things that have a similar effect?
For help with your fight:
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.
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.