The Pain Management Toolkit
Pain in any form can be tiring, debilitating, frustrating, anger-making and scary. Sometimes all at once. You may also feel alone and misunderstood.
This is for anyone living with ongoing pain, whatever its name ~ chronic pain, fibromyalgia, arthritis, endometriosis, hypermobility, long covid, nerve damage after surgery, or pain that nobody has yet managed to label.
I live with and manage intractable pain because I have scoliosis plus an ilio-transverse pseudarthrosis (often called Bertolotti's syndrome) combined with sacroiliac issues from an out-of-line pelvis. During surgery to stabilise my sacroiliac joints the surgeon pushed a surgical screw into my L5 nerve root (you couldn't make it up). This left me disabled with secondary pain plus foot drop, neuropathy, spinal arthritis and a variety of other 'stuff'. I have other spinal issues but this is not all about me 🙄
Using the techniques that I share with clients I am able to have a full-ish life as an ambulatory wheelchair user.
What is Pain?
Pain gets sorted into two kinds. But, it is not set in stone and depends who to are speaking to 🤷
Primary pain is a condition in its own right ~ fibromyalgia is perhaps one of the best known examples. There may be no injury to point at and nothing that shows on a scan, but the pain is real and it is the illness itself, not a symptom of one.
Secondary pain comes from something else: nerve damage, arthritis, surgery, endometriosis, cancer. Mine is secondary, the result of a spine that was already awkward and a surgical screw that went where it should not have.
Neither kind is more deserving than the other and neither one hurts less. The tracker does not care which you have.
But, let's get real about this ~ no amount of magical thinking will stop it.
I am not a member of the 'pain does not equal harm' club. By which I mean I have never found comfort in being told that hurting and being harmed are different things. It may be true on paper. It is no help at three in the morning, and it has never been a good enough reason to push on through, "distract yourself, Dear" or "smile more". If you know, you know.
One of the most annoying things about pain is that it fills your thoughts and if you are suffering with chronic pain it takes over everything you do because you have to think about the effect it might have on you: if you will hurt more or if you are unable to participate in something. It is hard to be spontaneous when you are hurting. It can take an immense amount of time in planning an event as exciting as a shower.
Another difficulty can be that if you haven't got an obvious injury or disability it can be difficult for people you associate with to understand how debilitating it can be. And if they see you smile on one day they tend to assume that all is well.
On a bad day you should not have to work out what to do
When pain is shouty, decisions are hard. You know there are things that help. You cannot always remember what they are, or find the energy to look.
The toolkit opens with a Wayfinder. What do you need right now? Anxious and wired, go here. Pain flaring, go here. Cannot settle, go here.
Or, completely ignore and do your own thing.
Why keep track
I live with secondary pain and know first-hand that monitoring your symptoms, moods and triggers helps maintain some semblance of control.
Patterns can emerge. Triggers become obvious. You might notice a flare coming instead of being caught by it, and when one arrives you can look back at what you did last time ~ what helped, and what did not.
Also, if you are under the care of a doctor or a medical team, a filled-in tracker answers "how have you been since I last saw you?" far better than memory can in a ten-minute appointment.
Nothing in the tracker has to be finished. A part-filled page still counts.
Your pain journal, on your phone
Included is the link to the pain tracker web app, a browser-based tool that saves your entries, tracks your history and shows your patterns over time. It lives on your phone like an app and your data stays on your device.
Everything you write is saved on that device only, so it will not follow you to a new phone on its own. Three buttons look after that:
Save a backup ~ a copy of everything, kept wherever you choose.
Restore from a backup ~ puts a saved copy back into the app, on this phone or a new one.
Print or save as PDF ~ a tidy record to take to appointments.
A personal message
I do not want cost to be the thing that keeps this from someone who needs it. If you are struggling financially please get in touch. I will make it available to you free of charge. No proof is needed. We have trust.
Email me with 'toolkit' in the subject line. That is all it takes. email: barb@barbaraford-hammond.com
What you receive when you buy
One zipped folder, sent as soon as you have paid, containing nine numbered pieces.
Start Here ~ your Wayfinder. One page that asks what you need right now and points you to the right piece. A plain list version is included for anyone who would rather not read a diagram.
About Your Toolkit ~ what everything is, four ways to use it, and a guide to every section of the tracker.
Daily Pain + Comfort Tracker ~ daily pain levels AM and PM, overall mood, energy level, sleep, self-care, stressors and triggers, coping mechanism, quality and location of pain, food and drink, medications, changes or glimmers. Print it, or duplicate it each day in GoodNotes, Notability or Xodo.
Pacing Tips ~ ten reminders for spending your energy well. Print, decorate and laminate it, or use it as a screen saver.
Pain Soothing Mind-Loop ~ audio, 5 minutes, to soothe and settle when pain is loud.
Healing Colours Meditation ~ audio, 20 minutes, to quiet an anxious, racing mind.
Relaxing Music ~ audio, 20 minutes, a longer track to rest and restore. This one carries alpha tones, so headphones are needed for that effect. Everything else plays fine however you listen.
Your Pain Journal App ~ the web address, your passcode, and how to save it to your home screen on iPhone or Android.
Notes ~ free writing. No rules, no headings, nothing to fill in, for whatever will not fit in a box.
There is also an all-in-one file with every printable together, for anyone who would rather import the lot at once into GoodNotes, Notability or Xodo.
All printables are A4 and print cleanly in black and white.
Small print that no-one reads
Nothing in this toolkit is intended to replace medical help or treatment.
If your pain is new, changing, or worrying you, please speak to your doctor.
Relaxing Music track and background music by Julians Taylor, used under licence.
All other audio recorded by Barbara Ford-Hammond.