I have had fibromyalgia for several years (although it was only recently diagnosed), which is a pain condition which overlaps with ME-CFS. Symptoms include widespread pain, often in the back or neck, extreme sensitivity, muscle spasms, fatigue, stiffness, poor sleep, headaches, brain fog and feeling too cold and unable to get warm, among others.
There is no cure, but you can manage it well on a daily basis to help improve it over time. Taking painkillers is an obvious solution, but doing that long term can cause problems (see below), so I have spent some time exploring alternative ways to manage pain that I can use in conjunction with, or instead of, analgesics. Some of the ways noted below work particularly well for fibromyalgia; others would work for any pain condition.
It’s often worth trying something a few times, just to see if you get something out of it, even if it seems a bit out there — it’s so easy to dismiss something you haven’t tried because it sounds weird, but you might be surprised by the results of some of these. I certainly was! I hope something in here helps you, or a loved one if you’re reading this for them. (The following are suggestions based on my own experience. I am not a doctor, and it’s important to consult a physician to make sure what you’re doing is right for you.)
1 — Painkillers
Painkillers are great for short term, occasional pain, but they don’t work so well for long term pain conditions. If you use the same painkillers over and over for months or years, they stop working. You also risk developing an addiction, which will give you a whole new set of problems.
I used to get vicious headaches and back pain several days a week for several years, and used painkillers six days a week on average. I made a point of not using the same ones every day, to avoid getting an addiction; but over time, they just stopped working, because I had built up a tolerance for them. I remember getting awful toothache, and taking my painkillers, and nothing happened! That week was brutal. I stopped taking paracetamol and codeine in any form for several months, and eventually they started working again, but I still have a high tolerance for them.
These days I try several other pain management techniques first, and if they don’t work or the pain doesn’t go away after a few hours (if it’s bad), or a couple of days (if it’s tolerable) I take painkillers. Most of the time I can usually get the pain to stop or decrease without taking them, or just ride it out until it fades, using some of the techniques below.
2 — Magnesium
Magnesium is a muscle relaxant. I take vitamin supplements of varying kinds, and the most important is magnesium. It’s available in most large supermarkets just like vitamin C, doesn’t cost much (I just picked up 60 tablets for £3) and makes an enormous difference to the amount of pain I feel.
A lot of my pain is due to muscle tension. All my back, neck pain and headaches is due to tension. Some days it feels like my back is just fusing into rock, it’s so rigid. But magnesium softens and relaxes the muscles, which means they don’t ache, and my headaches go away, and I feel fine. I take it every day and it has changed everything for me. (If taking magnesium for a while, it can be necessary to take other vitamins which get used up when the body processes it, like vitamin D and calcium: always consult a doctor or nutritionist to make sure what you’re taking is safe. The amount I take is 375mg a day.)
You can also use epsom salts, dead sea salt or magnesium salt (chemically speaking, pretty much the same thing, although the branding differs) in the bath. This kind of magnesium is a different chemical so you can’t eat it but you can soak in it, and it is incredibly relaxing! Very good for soothing anxiety too. Instructions for how much to use usually come on the packet. Even without magnesium, baths can make a big difference to pain — the heat relaxes muscles very well, so consider having regular baths rather than showers if possible, so you can soak in the heat and calm. Given their current popularity, I can get a kilo bag of magnesium bath salts for about £4 in the supermarket, but you can buy it online as well.
3 — Arnica
Another cheap, easy solution to muscle problems is arnica. This is a herb, usually ground up into an emollient to make a cream you rub on your skin. A physiotherapist once told me to use it when I felt a lot of aches and pains after a treatment, and it cut down by half! Usually it took me four days of aching horribly before I felt better, but this was one to two days of very mild aching, much more bearable! She told me to use it frequently as it ‘supported tissue’ and I get through tubes of the stuff. I use it when I feel aches and pains, muscle tension, if I pull a muscle or have overdone gardening or something else that strains the muscles. It’s traditionally been used for healing bruises, which I suppose ties in with the idea it supports general tissue health.
Again it doesn’t cost much — supermarkets sell a tube for about £4, and I have found it for £1 in some cheap shops. You can rub it on your arms, legs, or back and it makes a huge difference almost right away. I don’t believe it’s an analgesic, but it feels like it acts like one — I get pain relief within minutes when I use it now.
4 — Meditation
This one is completely free! All you need is a quiet space and a comfy chair or bed. Again, meditation works because it is relaxing — concentrating on your breathing, slowing down and not thinking about chores or rushing around, maybe visualising a peaceful place can all help you feel a little better.
A meditation I have found particularly helpful is from the Gupta Program for ME-CFS, called Soften and Flow. When I was doing it in 2018, the Gupta Program cost about £300 for a six month program, but their meditation app was free. It’s called ‘Meaning of Life’ which has many guided meditations on it, about 10–20 minutes long. Soften and Flow encourages you to be peacefully aware of pain or other sensations or emotions, accept their presence, then say ‘soften and flow’ and allow them to move away rather than be stuck in your body.
I felt quite resistant to it at first — I didn’t want to accept pain, nor did I feel it was possible to be peacefully aware of it! With practice though, I started to see the pain differently: a red scratchy texture, or swirls of green, and once I saw them like that it didn’t really hurt any more. I don’t believe it is the same as dissociation, when we become divorced from our bodies or have out of body experiences; it was more that I perceived it in a different way, so it didn’t bother me as much. It was quite a revelation, and I can’t always do it, but it felt amazing to realise that although we will inevitably feel pain in life, with practice we don’t have to suffer it as much.
5 — Consciously relaxing muscle groups and improving posture
This is related to the above. Many meditations simply guide you through relaxing different muscle groups — the NHS have some on their pain management website, so if you don’t like the idea of meditating because it feels too airy-fairy for you, you might still get something out of listening to someone telling you how to breathe deeply and relax your body.
Improving posture can help with muscle tension and headaches too — when I did the above, I started to realise what horrible posture I have! It’s not surprising I feel tension in my back if I’m hunched over in a defensive ball. Consciously relaxing muscle groups, and just checking in on your body and how you hold it more regularly, can help avoid tension and therefore pain.
6 — Physiotherapy and fascia tissue massage
This is more expensive, but worthwhile — often around £40–£50 per hour. I’ve tried lots of body treatments including physiotherapy, osteopathy, body therapy, massage of different kinds, and they all help: but the most useful type has been fascia tissue massage.
As I understand it, fascia tissue is a connective tissue between your skin and your muscles. It has more nerve endings in it than muscles, so if you’re in pain a lot, manipulating the fascia tissue is more likely to bring you pain relief than a massage which might go deeper and feel more satisfying at the time, but ultimately won’t help you feel better weeks later. I was going once every three weeks for an hour, for about two years, and was almost pain-free! I had gone from feeling pain every day to feeling it once a month or so. It was amazing. Then the pandemic hit, and I couldn’t get any treatments at all for about six months, and a lot of the pain slowly came back — not as bad as it had been before, but about half the days of the week. I’ve been attending regularly again (complicated by moving to a new town and having to find a new practitioner), but hope to get in a good place with it again in time.
7 — Understanding the pain body: managing stress
Stress and fear make pain feel worse. Your emotions affect how much physical pain you’re in, as well as your ability to tolerate it. When we’re stressed, our bodies get flooded with stress hormones and chemicals that make us more physically sensitive. The fight/flight response activates a different part of our brain to normal, which creates physiological changes elsewhere in the body.
If I stub my toe when I’m happy, it hurts for a minute and I swear. If I’m stressed and I stub my toe, it’s agonising for fifteen minutes! Fibromyalgia and related conditions make us more physically sensitive anyway, but at least we can manage our emotions so they’re not also contributing to it. Managing anxiety is a crucial part of your self-care for so many reasons, but please know that it will help you physically as well. Curablehealth.com have a great picture that explains how stress affects the brain and body to increase pain here.
I hope some of the above helps you, and if you have any tips I haven’t mentioned, please let me know! I’m always learning and keen to find new ways to manage chronic pain - I’d be delighted to hear from you.
