Treatments, Adjustments and Adaptations
Being functionally similar in so many ways, these therapeutic treatments, adjustments and adaptations listed here are ones that may prove useful to people living with any of the 3 conditions.
Nonetheless, please be sure to read our Disclaimers at the bottom of our home page.
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Lifestyle Management
Upon recognising the underlying cause of your health changes, your life, lifestyle and daily routines must adapt accordingly.
Lifestyle Management involves assessing your energy baseline, disability level/support needs, and creating a plan to adjust your day-to-day activities. The goal is to minimise symptom flare-ups, manage inevitable relapses, smooth out those peaks and troughs, and avoid the detrimental boom and bust cycle.
The Boom and Bust cycle refers to a cycle of bursts of activity followed by prolonged periods of enforced rest. Something “Spoonies” can be prone to due to a number of physical, mental or emotional triggers.
Help to manage outside triggers through setting realistic expectations, scheduling, and education and support for those who care.
Some of the internal triggers could include excitement over an activity, or frustration and impatience after a period of flare-up or relapse.
However, part of Lifestyle Management is:
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understanding your new range and limits and setting realistic expectation for yourself
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finding methods to manage these states of excitement, frustration and impatience
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being self-aware of warning signs your body and mind give you
all with a view to maintaining long-term, steady energy use interspersed with rest, rather than falling into the boom and bust cycle traps.
The book Fighting Fatigue: Managing the Symptoms of CFS/ME is designed for both those living with ME/CFS and for those who care.
But for any “Spoonie” (see Spoon Theory below) this book can offer useful insights and assist you, and those around you, to adapt while you may be waiting for a referral, or as a helpful source of reminders in the long-term.
The Spoon Theory is a metaphor that illustrates the finite amount of physical or mental energy individuals have for daily tasks and activities, highlighting how this resource can become constrained.
Coined in a 2003 essay by American writer Christine Miserandino, the theory uses a handful of spoons to symbolise units of energy available for everyday actions.
Miserandino's essay recounts her personal journey with chronic illness, popularising the concept that has since been applied to various disabilities, mental health challenges, forms of marginalisation, and other unseen challenges faced by individuals.
“Spoonie”: A disabled and/or chronically ill person who identifies with and uses spoon theory.
Simply put, Pacing is the strategy of balancing activity and rest.
But it is also about finding your thresholds: how much of what kinds of activity can you manage? How best should you schedule your activities and rest through the week/month/year. Eventually, scheduling and planning ahead are things that will become second nature.
There are a few excellent guides out there to help you, and those who care, get to grips with the practicalities of Pacing:
We have information in this section on our Care & Support: Beginning Your Care & Support Journey page, leading to contact links in our Resources section that explain how to access these services offered by, or connected to by the councils in Bury and Bolton.
Making adjustments to your work and home environments through occupational therapy can help reduce body strain. There are also a range of mobility aids and many services to help get you out and about, keep you as mobile and engaged with the outside world as much as possible, as well as help you at home.
A sedentary lifestyle imposed on many by these conditions can result in stiff joints and muscle atrophy, to name but a few things.
If your borough offers a condition-specific clinic for you to attend, they may have their own physiotherapist. Your local GP practice may also have a physiotherapist*.
Treatment, and continued practice of movements recommended, by a trained physiotherapist can help to maintain muscle condition and joint flexibility as well as good circulation. All these things, done taking your own limits into account, can be of massive benefit.
* They may need to be made aware of the limitations of your condition in advance. Requesting that they review the current NICE guidelines for your condition when booking an appointment may be worthwhile.
Though, by definition, Hydrotherapy can be anything from taking a warm bath to aquatic Zumba, in this instance we are referring to the physiotherapist-guided, gentle exercise in warm water pools, and this can be helpful for fibromyalgia sufferers. The warm water relaxes muscles and eases pain, while the buoyancy reduces strain on joints by supporting the body.
See our Section on Healthcare and Subsidised Therapies on our Resources page for Bolton Neuro Voices' Hydrotherapy course information.
Pre-COVID pandemic, the BBME had specially adapted, weekly yoga classes. We are looking to reinstate them. Please check in on the Our Yoga Classes page for updates. We also share any updates in our Newsletter for members.
Other gentle forms of holistic exercise that incorporate gentle movement and synchronised, gentle breathing can be of great benefit, when practiced within your own limits. There are many apps and websites out there, as well as in-person classes in some locations.
The Calm App (see section below) includes “The Daily Move” in its subscription and has a wide range of seated gentle exercises. 7-30 day free trials are always available.
Pioneered in the 1930s by Danish Doctors, Manual Lymph Drainage (MLD) is a gentle massage technique that can reduce swelling and enhance circulation. This method may help ease pain and boost overall well-being. Some physiotherapists offer specialist services in this method, such as the Perrin Technique, while some regular massage therapists may also have training.
See the Healthcare Services section on our Resources page for information on local practitioners of the Perrin Technique.
Modified Swedish Massage can be very therapeutic for anyone suffering with pain.
As with all therapies, it is worthwhile to communicate with the massage therapist in advance of booking any appointment, to make them aware you live with a condition and what it is; also the pressure levels you will need them to work with, as well as any sensory requirements i.e. yes/no to an aromatherapy diffuser, music, small talk during the massage, any particularly sensitive areas of your body.
They may ask you what you’re aiming to obtain from the massage, such as being someone who lives with chronic background or high-level pain and associated stress seeking relaxation and sensory soothing.
Self-Care: Looking after your mental health and wellbeing
Living with any long-term condition takes a toll on a person’s mental health. It can also take a toll on that of those who care.
"Mental and physical health are closely related. People who live with long-term physical conditions are twice as likely to have poor mental health as those who do not."
~ Mind UK
Thanks to the growing awareness of the importance of working towards good mental health and wellbeing, there are more mainstream tools available to help manage this important aspect of condition and lifestyle management.
For Difficult Times
If you feel you are struggling with your mental health, there are a number of places you can reach out to for help.
If you are having a mental health crisis, The NHS says to Call 999 or go to A&E now if:
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someone's life is at risk – for example, they have seriously injured themselves or taken an overdose
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you do not feel you can keep yourself or someone else safe
A mental health emergency should be taken as seriously as a physical one.
You will not be wasting anyone's time.
You can follow this link for the most up-to-date direction from the NHS.
Otherwise:
Talk to your GP
“When you talk to your GP about your mental health they'll listen, give you advice and introduce you to a mental health service they think will be most helpful to you.
"These services may come from your GP surgery, a large local health centre, a specialist mental health clinic or a hospital.
"Your GP can also refer you to a psychological therapy service or a specialist mental health service for further advice or treatment. The treatment may be provided on a one-to-one basis or in a group with others with similar problems. Therapy can also sometimes involve partners and families.”
The ME Association operate a helpline (not 24 hours): 0344 576 5326
Their helpline is open to people with ME/CFS/PVFS AND LONG COVID
You can also contact them via a range of social media messaging platforms.
Fibromyalgia Action UK (FMA UK) have a National Helpline (not 24 hours): 0300 999 3333
See their Contacts Page for the most up-to-date information
Mind UK offer a 24 hour mental health support line: 0300 102 1234
They also have a pdf available to download (opens straight to pdf) called "Ask How I Am: Supporting emotional health among people living with long-term conditions".
The Samaritans offer a 24 hour general support line: 116 123
They are reintroducing their face-to face support services following the pandemic, but you can now also email them or write them a letter, and they’re piloting a live web chat service too.
Membership is only £10 per year
BBME Membership is open to people who support and care for those with ME/CFS, Fibromyalgia, or Long-COVID
Membership is also free to one caregiver from your support network.
