4 Lessons I have Learnt While Living With Fibromyalgia

Lessons I have LearntAfter 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.

Necks & Backs, Some Coping Mechanisms

Anyone who follows my blog or Facebook page knows that I struggle the most with my neck. I may not have it under control, but I have a multitude of coping mechanisms for it. I thought I’d share some.

1. Swiss ball – if you have one, sit on it and gently lean backwards over it so that your back is laying on it and let your head relax. Good right?! You can also lean forwards onto it. These stretch out your upper back and shoulders which have a big impact on your neck.

Swiss ball

My swiss ball & foam roller.

2. Foam roller – this is a nifty tool that I haven’t yet come close to fully utilising. One good use for it is to put it under your neck and just chill out for a couple of minutes. Your head is heavy enough so you don’t  need to apply pressure or move about. You can turn your head gently from side to side (like saying no) and hold for a time on each side. Google foam rollers for neck and back and you’ll find a few tutorials on the uses for a foam roller.

3. Stretching – I stretch a lot, it’s a natural coping mechanism for me. The ear to shoulder stretch and the chin to throat stretch are nice neck stretches. But full body stretching is great for general fibro management.

4. Yoga – you can really utilise all different parts of yoga practice for Fibro bodies – just see this post I wrote about it. But for my neck I like cat and cow pose, forward bend pose, downward dog pose and child’s pose. If my whole back is being an issue then half legs on a chair (or couch) pose is a goodie.

5. Heat – I have my heatpack every morning, whenever I can in the day and before bed. It’s a favourite. A hot bath or shower is also good.

6. Rubs and massage – I have an antiflamme cream with natural ingredients to massage into the affected area/s which can be useful. The cream and the quiet time massaging the area are soothing.

7. Rest – sometimes the neck and back pain means I need to rest and cut back. This is part of pacing and general management of fibro.

8. Medicine – this is relatively new for me, I have a difficult relationship with medicine, but I am trying to remind myself that if judiciously used, medicine can reduce my misery. I have several lines of defense from paracetamol, to ibuprofen, to a paracetamol/low-dose codeine combination, to muscle relaxants. I very rarely allow myself the muscle relaxants but it does help when my back and neck have gone to custard.

A mix of these combined with general living well mechanisms (exercise, healthy eating, reducing stress etc.) Are the best ways I know to try to cope with my neck and back. Do you have any others?

How I Manage My (Digital) Thoughts

With a touch of the brain fog, a bad neck and a busy baby, I have to manage my post ideas digitally (and immediately).

These two apps have been a lifesaver:

The WordPress app.

My Evernote app. I have a free account and, in addition to saving post ideas in there, I also keep heaps of recipes and articles in various notebooks (for subjects such as pregnancy and fibromyalgia).

Sometimes the notes I take for blog posts remain sentences for weeks or months, other times whole blog posts pour out of me. But they’re all captured in Evernote – and accessible on my laptop for when I get super motivated and transfer a few posts at a time to the blog.

The apps aren’t great for formatting, so when I want to link and use other formatting options, I use the laptop.

But the apps have been so useful because my neck far prefers using the phone than the laptop as I can sit or lie down, do it in few minute spots and have my neck resting while I use it. Just in case this could be of use to you, I have a list of the digital tools I utilise:

For work:

  • Dropbox – free online document storage, accessible across laptop and phone
  • Google calendar – this is also accessible across platforms and I have access my client’s calendar too
  • Gmail
  • Insightly customer relationship database – this is my preferred database for my client’s needs and it’s free at the level of data we use

For life:

  • Evernote app
  • WordPress app
  • Facebook app
  • GoodReads app
  • Pocket – I share all articles of interest in there so that I can read them when I have time
  • Photo Grid app – for editing the thousands of photos I take of my boy

Are there any other good ones, particularly for manging writing ideas?

A Real Account of a Flare Up

In an effort to be real, and to share the real depths of what I’m coping with to someone, I thought I’d share an account of my current “flare up” – a period where my symptoms increase temporarily.

My current context is making it a little harder to cope. I’ve lost some of my oomph.

For about a year I’ve been dealing with the (sometimes) extreme side effects of being pregnant, giving birth and looking after a tiny baby, while dealing with fibromyalgia and chronic fatigue. This has chipped away at my reserves and I’m now emotionally and physically near bottom.

A few weeks ago I got a bug that required antibiotics to kick. Then my baby got it. Combine the sleep deprivation that comes with a sick baby and the increase in fatigue after illness, and you also score and increase in pain symptoms.

My neck has been so bad that two nights ago, when I got up to my baby to feed at 2am, the pain caused me to throw up.

Since then I’ve managed to keep going (barely) with the help of ibuprofen,  paracetamol and my wheat pack.

My stomach has also decided to join in. I’m hungry, but too tired to eat. It’s also hard to eat when the baby demands to be held right when you’ve managed to heat up the food. So I’ve been eating soup, sometimes cold.

My shoulders and back have been more tight, causing the occasional stabbing pain. The type that causes you to stand still for a few moments to ensure you won’t be beset by a raft of stabbing pains causing a day in bed and very strong pain killers.

The silver lining is that I know it will end. I know I’ll cope. I also know I’m doing well, considering this is new to cope with the pain and fatigue with a baby – I can’t go to bed and rest til it’s over!

It’s hard. And there is so much more I haven’t shared. But it’ll end. And I’ll be OK.