PART ONE - PART TWO
Hello my lovely loves!
I wasn't planning on posting again so soon, but as it's ME Awareness Month and I'd just finished this piece, I thought I’d jump back into the Symptoms and Tips series this month, with a look at pain in ME/CFS, and how I deal with it.
It's a fairly large one again (as the symptoms and tips pieces often are), so I'll post the rest tomorrow.
I’m actually quite lucky when to comes to pain as a symptom; I do have it, but not nearly as much as most other sufferers. Although saying that makes me nervous about jinxing it!
It feels a bit strange to be writing about it when so many other people have it worse than me, but ignoring it completely is entirely unhelpful. That said, if you suffer from severe pain and want to add anything you’ve found helpful in the comments then please feel free.
There are a couple of things I want to say before we really get into it though.
There is a real stigma around pain: men are told to “man up” and women are considered to be overreacting. (The number of women who have nearly died because they had abdominal pains they knew weren’t right and were told “having period pain is normal” is genuinely horrifying.) Complaining about pain is considered to be whining, and feeling it in the first place is often considered a weakness.
This, my friend, is a giant pile of cobblers.
Pain is a natural response. It is your body’s way of telling you something is wrong. It’s easy for people to be flippant about other people’s pain, because they’re not the ones in pain. There is no shame or weakness in feeling pain, complaining about pain, or needing help and relief from pain.
Do not be ashamed to take painkillers. We will be discussing other methods of pain-relief and control in this post but accepting prescribed chemical help is not a weakness, and punishing yourself with pain helps no one. Talk to your doctor about what pain killer is right for you.
Amybtripyline, Naproxen, Gabapentin, Co-codamol, Co-drydamol, Pizotifen, Solpadol, Tramadol, Nortryptaline and Morphine are all prescribed in the treatment of pain for ME/CFS and Fibromyalgia (although obviously not all together!). There is bound to be something that works for you if over the counter medications like Paracetamol and Ibuprofen aren't working, so talk to your doctor.
You can try topical painkillers like Phorpain Gel if oral painkillers don’t work well, or need to be supplemented (with advice from a doctor); or even try other types of paracetamol like effervescent paracetamol to see if that works better for your body.
Conversely, if you decide pain medication isn’t right for you, then that’s fine too. It’s your body, and your choice. Just make sure you’re refusing it for the right reasons instead of what others might think of you.
I know a lot of people worry about becoming dependent on pain medication. It’s possible, so it’s good that you’re aware of it, but with proper care and support this should be less of an issue.
If anything, being nervous about it is probably going to make you notice any changes in your behaviour quicker.
And in the unlikely event it does happen, again, it’s nothing to be ashamed of, and they are plenty of other medications, and support available.
In the end, you should always double check your pain killer usage with a doctor, ESPECIALLY if you’re on anti-depressants.
(One thing I learned is to NEVER mix anti-inflammatory pain medications with anti-depressants that specifically say you can’t.
Anti-depressant usage can make your body more acidic over time, and using anti-flammatories with that can give you real problems, including an excruciating case of gastritis, as I found to my detriment.
I’ve mention this before, but it’s always worth reiterating, and a month or more only living on unsweetened, liquidised porridge (because it’s the only thing that doesn’t hurt your stomach) will soon teach you not to be flippant about doctor’s orders.)
A lot of the things I use to deal with pain are the same for several different types of pain. I’ll list the types of pain I get first and then the remedies, but only fully explain them the first time to avoid a ridiculously long, repetitive article, but general things that might help:
Check Side Effects
An obvious one, but check your medications and see if there are any specific types of pain listed that you have. If they started after use, then maybe see if there’s something else you can try.
Allow yourself to be angry
Being in pain is frustrating and you have a right to be annoyed. Have a shout into a pillow, mutter to yourself profusely, and have a stomp about if you can.
If you let it out you’ll probably feel a bit better. Plus, not bottling it up means you’re less likely to take it out on any innocent bystanders.
If your rage results in flying knives (for some reason)
then maybe give this tip a miss.
(Thanks Google Image Search. You never disappoint.)
You might find EFT or Tapping, useful for releasing anger.
There’s a lot of talk about how tapping can actually help pain, but, as much as I love this tool, I’m sceptical about that aspect of its use.
It is however, GREAT at letting you get out all the emotions about your pain out, and that can be very useful.
There are lots of videos on Tapping on YouTube, and the least irritating tutor on there seems to be Brad Yates.
(Unfortunately a lot of people who talk about tapping sound like their going to break into a long chat about crystals and rain dances afterwards, but if you can get past that it’s really helpful. I think it helps that I learnt from a no-nonsense Scottish woman.)
Don’t fight it
Most people tense when they’re in pain, which is fine, because ow, but it doesn’t help the pain, and can actually make it worse.
If all your other muscles are tensing because you’re fighting the pain then those muscles can start to hurt as well. Try to breathe into it.
I realise it’s easy for me to say this over in Camp I-Don’t-Get-Pain-As-Bad-As-Most-Sufferers, but my period pain is definitely on the more severe end of normal and I find it useful for that.
Mindfulness mediation is good, especially ones designed to deal with stuff like this. Try the book Mindfulness for Health and it’s accompanying meditations. There are all sorts of meditations and visualisations around designed to help with pain.
I was extremely sceptical of this at first, and to be honest sometimes it’s still hard to remember to do, but when I do it can be helpful. If there’s a chance it might help, then it’s worth a try.
Pain Management Clinics
I haven’t been to one, but I know they exist and can be helpful to those with chronic pain. As far as I can tell it’s really more about management than cure, so keep your expectations realistic, but the more you know the easier you might find things.
Even if you only gain one piece of useful knowledge, it’s something.
Talk to your GP for information on your local clinic.
And now to the types of pain I get! (Yay?)
Joint Pain AKA Bone Pain
My great-aunt used to have a budgie. Apart from being incredibly noisy it also had a cuttlebone that it would scrape on continuously. That is how my joint pain feels; like something is scraping on my bones. It’s kind of a dull ache that builds on itself in waves until it a sharpness is added to it. Although it’s more of a full parrot than a budgie.
Dat beak tho.
There are two levels of this pain for me; parrot and angle-grinder. As you can imagine, if a beak scraping on your bones is painful an angle grinder is excruciating.
It’s incredibly similar to arthritic pain, according to my mum. We both get joint pain in our hands, but I get it in my hips the most frequently.
The main way I deal with this one is by keeping warm.
If I get cold it takes hours to get warm again, and I feel it right down to my bones. I can pretty much guarantee that I’ll get joint pain when I try to sleep if that happens.
(I tend to get pain the most when I’m overtired, having a crash, or it’s cold. I get through at least twice the amount of pain killers in the winter as I do in the summer.)
Keep wherever usually hurts toasty; double up on leggings, cart out the hot water bottles, have warm baths, and fish out the arm warmers.
Also, when we’re in pain we tend to tense our muscles, which inadvertently causes more discomfort. Keeping warm keeps the muscles relaxed as much as possible to avoid further pain.
(On the topic of keeping warm, you might want to check out infrared saunas. These are available for home use, and unlike regular saunas, only heat you, not the surrounding area. There are meant to be a great deal of benefits to use, and while I haven’t used this myself, several people mentioned them to me in my research as something that has helped them, so worth a look for more persistent pain!)
I also use painkillers for this. If I’m lucky two paracetamol is enough. I’ve also been prescribed Cocodamol for when two hot water bottles aren’t cutting it.
The only problem with this is that I’ve never taken it before, and I usually get most of my pain at night, so we’re waiting until I get pain in the day so I can try it when there’s someone around to make sure I don’t have a bad reaction to it.
You also can’t take it with paracetamol, so I can’t try that first and then take the Cocodamol if it’s not working. I’ll keep you posted with how it goes.
If you’re getting pain at night, you might also want to look at your sleeping arrangements and see if there’s anything that needs updating or changing.
Try different pillows to help neck and shoulder pain - I used this shaped foam one from Dunelm and that’s really helped my neck.
Also, find out how old your mattress is and when the last time it was turned is. A lot of mattresses need regular turning to help maintain their shape and reduce sagging, and all mattress are meant to be replaced after about ten years of use.
Finally, bear in mind that although “orthopaedic” mattresses sound like the most medically helpful, it’s actually just an industry term for a hard mattress. If you have joint pain, specifically hip pain, then it could be that you need a softer mattress that puts less pressure on your joints.
I covered this a bit in my N:REM review here, but my hip pain is significantly better since I switched to a softer mattress.
It might mean spending some money, but if you’re able to do it, then it will likely make a difference to your pain, which will have a knock on effect with your energy levels. A lot of places allow you to pay in instalments as well.
Placing a pillow between your knees can also take pressure off your hips. Being of the hippy persuasion (not the hippie persuasion), I’ve done this for years, and it’s really helpful.
Similarly, think about the support your sofa and other chairs are giving you. If you have ME/CFS chances are you’re having to lie down a lot on either a bed or a sofa. If you notice that you pain worsens when you’re on a certain piece of furniture, then it may mean that it isn’t suitable for your needs.
Other things that might be useful for joint pain are:
Lots of people suggest bathing with Epsom Salts for muscle and joint pain. It’s not something I’ve tried yet, but it’s relatively cheap so it may be a good thing to try.
Magnesium is available in topical form (gel/sprays), flakes to dissolve in baths and as an oral supplement. Some people swear by it. I’ve not noticed much difference when I’ve used my spray, but to be honest I usually forget to use it, and I think it’s something you’re meant to use regularly. I’m going to try adding flakes to my baths and see if regular use makes a difference.
CBD Oil is a cannabis derivative that lacks the psychoactive part of cannabis that gives you a high. Cannabis, in all it’s forms, is said to be very effective as pain relief, and it’s slowly becoming more available around the world.
Non-psychoactive oils are legal in the UK and available in various health food shops like Holland and Barrett, and online.
There are different types and apparently it can take a bit of time to find the right type and dose that work for you. It is currently quite expensive, though, so bear that in mind.
TENS (Transcutaneous electrical nerve stimulation) Machines work by applying electrodes on sticky patches to different areas of the body and then sending a mild current to those areas. This confuses the nerve endings and makes it more difficult for the body to process pain. It feels a little odd, as you’re essentially electrocuting yourself at a really low level, but as long as you start slowly it can actually feel quite nice.
Like a massage from a tiny robot.
These are good if you have specific areas that you need to target, and can also be used as a form of gentle exercise for the muscles if used correctly.
If using a TENS machine, remember to put the sticky pads either side of the painful area, and don’t have it turned on while placing them. You also shouldn’t let the sticky patches touch while the TENS machine is on.
Start slowly, and you’ll feel a slight tingle, which will increase as you turn it up. Never turn it up to a point that is uncomfortable for you.
There are many types of TENS Machines on the market. Mine is just a simple one from Amazon.
There are also bigger brand names like Quell and Oska Pulse. Although based around the same technology they work slightly differently.
Quell is strapped a specific part of the lower leg no matter the area of the pain and its designed to stimulate enough nerves at once that the body releases it’s own pain relieving chemicals.
Oska Pulse is another device which utilises electromagnetic fields to try and stimulate the body to release it’s own chemicals to deal with pain. It’s placed on or near the area of pain and, unlike the other devices, there isn’t a pulse or tingling feeling.
My friend Laura Chamberlain, over at Laura’s Pen, has done a review of the Oska, which you can check out here.
I’d love to give these two devices a try so I could compare them for you, but they are much pricier than regular TENS machines and I’m afraid I’m not able to afford it. For now I’ll have to let you decide which tiny robot masseuse you go for.
Around each joint is something called synovial fluid, which is basically the body’s natural joint lubrication. Keeping yourself hydrated maintains this fluid and keeps the joint moving easily and without friction, which should help lessen pain.
Okay! Come back again tomorrow for part two where we jump into muscle pain. Let joy be unconfined.
PART ONE - PART TWO