Creating a Pain-Flare Plan That Future-You Will Be Grateful For
When chatting to a friend about her experience of living with fibromyalgia she described it as walking around the edges of a dark hole and staring down into the darkness. During a pain flare she feels like she is falling down that hole. Though a dark image this makes sense because a pain flare or flare up, is an increase in pain, in physical, practical, mental and emotional needs. The pain becomes overwhelming and all encompassing.
Having lived with chronic pain for many years she has a range of strategies that she uses during her pain flare ups. People who are newer to a life with chronic pain might not have been referred to a pain clinic and they probably haven’t made a plan of what to do when they next experience a pain flare up. I see you 😉.
This blog is a little wake up call to get on that. It should give you a structure to hang ideas on. It should help you think about protecting all of the areas of life that are forgotten when you just want to surrender to the darkness .
Get a pen and paper out and draw yourself a house. If we imagine that this house represents our our health, then the foundation is sleep, the roof is our life purpose and the four walls are made up of nutrition, hobbies, social support and movement. The termite in the corner represents stress that eats the walls and the tree out front is a connection with nature.
During a flare up sleep is difficult but essential. its made more difficult if you take common analgesics such as amitriptyline, gabapentin, or duloxetine which are known to disrupt sleep and may make you drowsy during the day which further interferes with your wake/sleep cycle .
I know one person who sleeps in the spare room during her flare ups so that she doesn't have to worry about waking her husband. I know another who gets up, runs a bath, gets a cup of herbal tea and tries again later. It may be that you are prescribed sleeping pills to get you through a flare up. These will provide short-term relief but are not the long term solution. What can you do to protect your sleep in a flare up?
In the middle of a flare up, the pain takes over everything. If you can connect with your “why" - why you are here on earth - during your flare up, this will help you to focus on a point in the future at a time when the flare up is over. This is the opposite of catastrophisation - a mental state of extreme worry - that serves to make people's pain worse. It also creates perspective and a reason to ride through to the other side of the pain.
If you considerably reduce your activity levels during a flare up it can take a long time to recover; can prolong the flare up; can leave you de-conditioned and more vulnerable to injury or further pain. However, If you believe that it is safe to move you may recover much faster. Yes, you might reduce your activity for a short while.
You will need to pace yourself; prioritise; plan; and be aware of the positions you are in, changing them regularly. You will also need to gradually increase your activity to baseline levels again. Anything that you can manage to do during a flare up will help your recovery on the other side, protecting your fitness and strength.
During a flare-up, cooking can feel too much. Good nutrition is essential for healing though. Batch cook when you are well. Buy soups or meals that just need reheating. Find easy ways to have nutritious food available - can a friend drop something around? You may also want a packet of biscuits or crisps put away as a treat for when you feel rubbish.
Social wellbeing and support during a flare up ranges from getting help with practical needs such as preparing food, running a bath or helping you get dressed to the emotional support of having a buddy who cheers you up. Letting people know in advance what you need during a flare up might seem difficult but can make a big difference.
Also, there is something called spouse assisted coping skills training - which has been found to improve marital satisfaction. It involves behavioural rehearsal and mutual goal setting. It means that your partner is actively involved in helping you acquire and maintain coping skills.
We are social beings - people do want to help, they just need to be told how and in advance. What do your people need to know?
Hobbies serve as a down shift and a distraction. Having nothing on your mind except the pain can make it overwhelming. Distraction won’t reduce your pain levels, but will give you another focus. Turning to a hobby will also help with your mood. Listening to an audiobook while doing a jigsaw or assembling lego also helps shift your nervous system into a relaxed state. Pain does makes it hard to concentrate so choose fairly gentle hobbies - the cryptic crossword can be saved for another day.
The Japanese have forest bathing in recognition of the healing properties of trees. Being in nature is a chance to connect with something bigger than you,
a tree that you walk past may have been here for 400 years it will have been here through previous flare ups and will carry on being here for centuries. Nature helps bring perspective and outward focus to us when all we can feel is our pain.
Flare ups are caused by over doing things, under doing things and sometimes happen for no identifiable reason at all. Most people will point to stress as one of their triggers. We need positive stress in our life, the problem is when we have too much stress for too long. So what can you do to manage your stress levels during a flare up? What can you do to reduce your cortisol, pull you out of your fight or flight state and help your body recalibrate?
That’s the house structure thought through. Well done. Hopefully you have some good ideas written down for what to do during a flare up. There’s just one more thing. Though your pain will return to baseline levels after your flare, the emotional impact will probably remain. You may have a “hangover” period of anxiety and low mood. You might worry about future flares and so avoid physical or social activities. You might worry about the future and have fears that your condition is getting worse. You may create some unhelpful avoidant habits that will make subsequent pain worse. Though these are understandable thoughts and behaviours they are not helpful. It will be better for you to congratulate yourself on having worked through your flare up. Then find what you can control in your recovery and control the heck out of it.
I hope that this has been helpful for you and given you some ideas for a flare up plan. Where can you put your notes so that they are visible when you need them? Beside your computer? On the fridge? Inside your wardrobe? In the notes section of your phone? Is it worth having a flare-up bag or drawer as well? This will mean that everything is in one place and is easy to find when your pain isn't great and you don’t have the bandwidth to hunt around finding a heat pad, paracetamol, turmeric tea bags, affirmation cards, mixed nuts etc.