There are so many of us living in the constant pain of CRPS (Complex Regional Pain Syndrome), which sits at the very pinnacle of the McGill Pain Index. There is no way to describe it, I know that I never would have believed such an illness existed, much less believe the sheer ignorance on it by medical professionals despite it’s all-pervading grip on everything in a patient’s life.
It’s frightening. It can be lonely, we are so often isolated but even in company, our invisible symptoms set a window between us and the world. Social media and the internet may have helped us cope, even have some semblance of life from our homes or bed, though sadly even that time can be limited because of the pain caused by it.
Yet though awareness is growing, our CRPS community too, a beautiful and evolving shared courage, so many have never even heard of it even in the medical community and herein is the heart-wretching sadness and danger too, we don’t have to live with this disease. The chance of remission if caught early enough is high. After months of disbelief or confusing symptoms and severe pain, that chance decreases and continues to decrease, making it all the more difficult to come to terms with this ‘new normal’.
CRPS Awareness Month
As I proudly wore orange in honour of CRPS/RSD Awareness Month, I thought on how to raise awareness and of course, help those also living inside a body that CRPS has turned into what can only be described as some kind of medieval torture device. Although this website is dedicated to helping everyone who lives with pain and painful chronic illness, CRPS is the excruciating inner gremlin that snatched the rug from under my 22-year-old feet, before all else, and it being the month of spreading awareness, this post focuses on ways you can help yourself as a patient.
If you have recently been diagnosed with CRPS, this piece by friend and CRPS warrior, Lili at Taming the Beast: So You’ve Been Diagnosed with CRPS, What Now?
Everyone with CRPS needs good medical support and treatment. While this is not always possible, with both knowledge and awareness of CRPS being so sparse, especially if you live in a rural or remote area, and the great difficulty in its management and treatment, this website can help guide you in things that help improve your pain and function.
How is Complex Regional Pain Syndrome treated?
As pain involves the whole person and because CRPS is so much more than ‘just’ pain, to get the best outcomes for you and your symptoms, treatments and management usually require a combination of the following approaches:
- Pacing and planning everything. Unless you use pacing and plan, you may find that you manage for a while but the painful payback of exceeding limitations is fierce. Visit the page on pacing here.
- Relaxation techniques: diaphragmatic breathing, meditation, body scan, restorative/therapeutic yoga.
- Mindfulness has helped a lot of pain patients cope but distraction also is a useful coping/pain management tool.
- Meditation and other forms of relaxation – vital to calm your sympathetic nervous system.
- Gentle movement and mobilisation techniques:aqua physio, Tai Chi, Chi Kung (seated or standing), restorative/therapeutic yoga.
- Learning and practicing every coping and pain managing technique that helps you.
- Brain training techniques – so much of the focus in treatment has shifted to retraining your brain to counter and in theory reduce the maladaptive neuroplasticity that CRPS causes.
- Use of pain medicines and medical procedures.
- Complimentary medicine also visit this wonderful site, written by CRPS warrior, friend and complimentary therapies expert.
Successful treatment of RSD/CRPS is dependent on:
- Early diagnosis. If diagnosed early, the prognosis is very good.
- Begin treatment of the RSD/CRPS process. The key approach is to provide enough pain relief in order to undertake rehabilitation, though it is obviously still going to be painful (slight understatement!). However in spite of this being a very reasonable goal, it is sadly so frequently not met, with thousands of CRPS patients being under-treated and facing far greater challenges than they already do.
- The primary aim is to restore function. This is crucial in increasing and maintaining mobility but must be paced and the increase in movements very gentle, very slowly (to avoid flaring-up), and inside your personal limitations. To read more on this, visit the page on Pain Pacing here.
- Movement is vital. If you do not move, even if it is as humble as wiggling your toes regularly, your muscles will weaken, causing further problems and pain, and the body, which is designed to move, is at greater risk for other complications. Many patients find that exercises in warm water are far less painful. The water itself is soothing, supportive and also has the added benefit of reducing allodynia, which is the pain caused by innocuous stimuli.
- If newly diagnosed, it is vital to control pain so that pain pathways in the brain do not become maladaptively rewired, making recovery even more difficult. The process by which pain becomes chronic is only hampered by excessive stimulation of your CNS so do everything you can to be proactive, no matter how seemingly impossible, not to mention excruciating the rehabilitation process is.
- Techniques to calm your SNS (sympathetic nervous system) become vital, as does having a basic knowledge of brain retraining techniques. Though I will expand more on this in a separate post.
Stimulus = Pain
The brain behaves a little like a faulty and hyperactive car alarm in CRPS, thinking that everything is dangerous, in turn sending its vicious pain signals at the most innocuous of stimuli. Sound, vibration, even a breeze can send our pain levels soaring so ensuring that your environment is as calm and quiet as possible has a huge effect on your levels of pain and other ANS symptoms.
This is of course ever so hard to convey to healthy people, who have a tendency to think they know best or that “it can’t be that bad,” but it is. The perplexing symptoms of CRPS are incredibly real to us and without the luxury of denial, unless we are allowed the space and grace for our over-stimulated systems to calm and settle a little, it becomes hard simply interacting with others who do not grant you the quiet and non-stimulating environment you need to manage your CRPS.
With central sensitisation being an added cause of increased pain, allodynia and hyperalgesia, limiting stimulus becomes a vital part of coping and managing your pain levels. Using an eye-mask, listening to the ocean waves or brainwaves can be soothing too, can help you calm your over active sympathetic nervous system.
Retraining the Brain
In healthy bodies there is mental map of where the body is in space and this allows us to function without having to check where we put our hand to pick up a glass or which is the left or right hand. This ability can be lost in CRPS and this altered function seems to be part of the reason that pain persists in CRPS. The Graded Motor Imagery program helps you to re-train the recognition of where the body is in space. For more information about GMI, also an app that you can use to train on your mobile (cell) phone, even from your bed, visit the GMI website here.
GMI and Mirror Therapy
Mirror therapy can help in the early stages of CRPS. This procedure aims to “teach” the brain that the limb where pain is being felt is actually OK, that is, not dangerous or cause for alarm. In CRPS normal inputs such as touch, stroking and movement are misinterpreted as painful.
This ongoing “painful” interpretation is a big part of the problem. With the brain perceiving everything is dangerous, even the most innocuous of stimuli causes and exacerbates our pain.
With mirror therapy, a potent part of GMI, a mirror is set up between the limbs so that the affected one is hidden, but the mirror image of the unaffected limb looks like the one that is in such intense pain. Both limbs are moved gently but the CRPS one is hidden and the brain “sees” what looks like the painful limb working, without pain, and in turn “learns” that it can be moved without harm, see mirror therapy for more information.
Graded Motor Imagery is showing great promise, even in long-term cases of CRPS. Do be aware that it can momentarily increase the pain in some patients but that this evolves into lower pain levels and increased function. GMI helps you to re-train the brain to behave more normally, less reactively, and this has been found to help decrease pain and improve mobility.
Mirrors may be used for a variety of pain and disabilities but especially involving the hands and feet, with many patients, including CRPS warriors and angels, gaining pain-relief and improved movement by using a mirror. Be warned that it can worsen before improving.
What else could I do at home?
- For GMI, you could browse through the internet or a magazine and look at pictures of hands and feet and work out which is right and left.
- Imagining movements or your CRPS limb by using certain postures or positions – Imagery is a great way of ‘exercising’ the mind/brain using a progressive approach. This approach reduces the chance of pain flares and helps you make better progress.
- De-sensitise your CRPS-affected limb(s)/areas by using a flannel in the bath; gently move it over the area and keep affirming that “this is just a soft flannel” – although the research is yet to conclude on this, it has had positive reports of it helping patients.
Mobilisation, Gentle Movement and Mindful Exercise
Physical therapy to maintain flexibility, strength, and range of motion is important butfind out your pacing limitations for each activity and build up very slowly to avoid and set-back or falre-up, and never exceed those limitations. Not using an affected limb can result in atrophy and eventually not being able to use the limb.
It’s crucial to undertake rehabilitation, though it is obviously painful, unless restoring function can occur, the CRPS can worsen. I understand. It’s excruciating. The last thing you want to do is move. It can feel like walking on burning broken glass when you have CRPS/RSD in your foot/feet, or burning-iced limbs, no one would move with that. But the vital thing to consider, and the thing I want you to avoid at all costs, is to not move at all as this will worsen everything.
It’s a delicate and difficult balance of moving enough but not moving too much. There are and will be times when you flare and are stuck but during rehabilitation, take it very slowly. In those early stages and months of CRPS, even wiggling your toes or fingers (depending on where it is or begins) is excruciating yet it can be the start of your rehabilitation and increasing your mobility again. So wiggle those toes.
With thousands of CRPS patients being under-treated and facing far greater challenges than they already do, so many do not receive adequate treatment. Another thing that helps me personally and something I will expand on in a post of its own is baths and exercises that you can do – very gentle exercises – I tend to call it mindful movement as exercise conjures up the wrong image.
If you do not move, your muscles will weaken, causing further problems and pain. For pain relief, to reduce stiffness, increase circulation, ease movement and regain a good sense of your body are all important in maintenance and rehabilitation but also if you need to spend a long time in bed or resting due to high pain levels, see Pain-Relief and Coping for Severe Pain.
To mobilise tight & stiff body regions and develop control of movement; gradually progress from just a couple of repetitions (see a physical therapist for guidance on how to strengthen muscles and rehabilitate). Progressively build up your tolerance slowly, this is vital. To begin you may only do two repetitions of an exercise and that is fine. Consistent and slow is far better than pushing through and causing a flare and therefore set-back in progress.
Always keep within your limitations, increasing your timed activity very gradually. For example,tai chi can be done in a chair, also see this seated tai chi routine here; restorative or therapeutic yoga is incredibly gentle or even mindful and gentle movements in the bath can help reduce your pain and increase muscle mass and strength.
Swimming/aqua physio is also immensely helpful with RSD/CRPS. Also read: 3 Natural Ways to Reduce and Manage Your Pain and see Natural Therapies to Ease Chronic Pain.
Graded Exposure & Pacing
There are often particular activities that are challenging, painful and sometimes avoided for fear of causing damage or harm. You can use pacing to gradually re-engage with some of these activities. Pacing means that you set a baseline and work towards your goals, see the Pain Management page for more information. You may also enjoy this useful piece that shows you how to desensitise using epsom salts and bathing.
Mindfulness & focused attention training
Mindfulness can have profound ways on your relationship with your pain. Also as a way of reducing the emotional aspects of pain. Mindfulness helps us to respond skilfully to the inevitable physical suffering that comes with being in bodies when we have CRPS/RSD.
Our habitual reaction to physical discomfort is some form of resistance and aversion, leading to increased frustration or anger and therefore increased pain. In practicing mindfulness, the habitual response is replaced with one that’s more skilful.
For example, if we’re suddenly in increased pain, we can let the habitual response of anger or frustration brew and increase, which increases our mental suffering and physical pain too because the muscles surrounding the pain tighten in response to our frustration. Mindfulness offers many other benefits too. Click here for an example of one of the mindfulness techniques.
Modern neuroscience has transformed the entire view of how our brains work and are affected by chronic pain. With new ways of approaching pain though our understanding of the brain in chronic pain, alongside what we now know about the heightened responses of CRPS – which drastically alters the way our body processes pain, as well as function pf the sympathetic nervous system – we can target the adaptations and changes using particular types of sensory and motor training. For example, the graded motor imagery program and tactile discrimination training.
Ways To Train Your Brain
- Visualisation – Increasing research suggests that visualization of an activity and the action of that activity is processed in the same way in the brain. Because your brain knows no difference, this may be a very useful tool in retraining the brain.
- Relaxation (including mindfulness and meditation) – It quiets an overactive brain, which offers your mind an opportunity to refresh, even imagine desired outcomes, such as visualising you walking – a powerful technique because as far as your brain is concerned, the same areas light up as if you were actually walking. Although research is in its infancy, even 5 minutes a day of visualisation can help. It also reduces stress-related brain chemicals and increase nourishing brain chemicals.
- Nutrition and Rest – How well you eat and how much you sleep will positively affect your brain’s ability to function but it’s not always so simple. Read When Pain Interrupts Your Sleep. I will cover more on nutrition and pain in a separate post.
- Psychological techniques – Keeping your mind as at ease as possible is crucial in managing such high levels of constant pain. Read: How to Use Pain Psychology Techniques to Reduce Anxiety, Depression, Anger and Guilty and also see: How to Cope and Heal Depression When You Have Chronic Pain and illness
- Laughter makes your brain increase production of serotonin and dopamine, both neurotransmitters play a massive part in mood and also your pain. Read more here: Why Laughter is the Best Medicine When You Live in Pain.
- Stimulation – Choosing activities that make you feel good, whether active or passive activities, reinforces the neuronal pathways. Novelty and focus (attention) is another big factor in creating and reenforcing neural pathways, and retraining your brain.
- Mindful Movement, as detailed above, is a fantastic way to train your brain.
Imagery & visualisation
Motor imagery is used as part of the graded motor imagery programme and as a stand alone brain focused training. When we think about movement, the same areas of the brain are active as when we actually move. So if we imagine ourselves walking, running, moving in any way at all, the areas of our brain involved in executing those movements, lights up as if we are actually performing them.
Using this physiology within the cortical network allows us to re-train normal movement (how the brain plans and then executes precise and well controlled actions) at the early stages of rehabilitation. Visualisation is a way of changing the body physiology in a positive manner thereby benefiting the physical self, mood and creating a positive context for rehabilitation.
It is also a wonderful way to help you manage the intense pain. Escape wherever you wish to. Put headphones in, listen to calming music or guided meditations, or simply the ocean waves and pretend you are on a hot beach in the sun.
You can do anything or be anything you please in this clandestine world. Imagine you are walking along a wooden pathway by the tropical sea, or through a bluebell-ladden wood. The [inner] world is your oyster.
Living with CRPS is hard. Escaping to paradise, whatever your personal paradise may be, is healing, nurturing. Anything that helps you cope and reduces the pain, both physical and psychological, is crucial. So escape. Give yourself a gift and try visualisation.
Useful Links for Patients
Here are some incredibly useful links. The first is a link to the RSDSA, the second was compiled by friend and fellow CRPS warrior, Elle and the Autognome: CRPS FAQ This comprehensive and regularly updated list is a fantastic resource for both patients and caregivers/loved-ones of patients.
Facebook offers some unparalleled info, support too of course, for patients. In fact, this blog started out as a Facebook page and grew from there. I think all of you should head to a like this instant (no pressure) to: RSD/CRPS Research and Developments, an unbiased research page run by patient and superstar, Sandra. Also, the miracle that is Marie aka Elle and the Autognome has a wonderful page, especially for the dysautomnia info, which is hard to find:Elle and the Auto Gnome (Living with RSD / CRPS & Dysautonomia). Biowizardry combines CRPS info and experience with the wonder that is Isabel, patient and scientist. Taming of the Beast is the Facebook page for the website mentioned above and also a resource for natural healing and alternative health (created by a CRPS warrior/angel).
CRPS UK Clinical Research Network, RSD Hope, Complex Regional Pain Syndrome – New Zealand, International Research Foundation for RSD/CRPS, a.k.a. International Foundation for CRPS & RSD, a.k.a. RSD Foundation, Women in Pain.
Read A Letter to Those Who Do Not Have CRPS/RSD here.
It would also be a fine time to mention the awareness tee-shirts and other items on the CRPS, Art & Spirit Cafepress shop, which you can purchase directly here. All of the proceeds go straight to the charity, which is involved in sharing information and knowledge with those who need it to help bridge the gap between doctors and patients. If you can’t find what you’re looking for in the shop then let the CRPS, Art & Spirit team know here because they may well be able to rustle up a design at your request.
There is a drive to get information to doctors on the Facebook page CRPS Research and Developments, so pop in online and ask for a postcard or two to drop in for your doctors to read. This is important. So very important. So many lives are lost to CRPS each year, and if we wait for the general medical field to catch up with the specialist research it will be too long. Too late for another soul who found that their safety net was missing because CRPS was not understood.
Natural Therapies and Techniques
Hyperbaric Oxygen therapy had has amazing results with CRPS, even in long-term CRPS and is especially useful as no painful manipulation is applied.
Acupuncture can be helpful at all stages of CRPS, not just for pain but for side-effects from medication and overall well-being. However, it can be difficult to find an acupuncturist who is knowledgeable [or gentle] enough with regard to managing CRPS. Asking for extra fine needles can make a huge difference. Never needle the epicentre of where the CRPS began as it can cause a flare-up of symptoms.
Myofascial Release taken slowly and gently on the body in long-term CRPS (avoiding parts of the body that are too painful, hyperalgesic or allodynic), can be immensely healing body work, especially if you have been bed-bound or sedentary due to your pain, as it can help you recondition your body and lengthen your muscles and fascia.
Using a transcutaneous electrical nerve stimulation machine (TENS) can help confuse the pain signals, thus reducing them and is a helpful aid.
Practicing Mindfulness and meditation can help ease some of the symptoms and help the patient relax, in turn reducing pain.
SCENAR therapy has helped some patients improve their mobility but can be expensive with a therapist. Investing in your own unit can cost from £400 but with each therapist treatment being £40-60, it is comparatively better value.
Effective sympathetic blocks have helped some patients by blocking nerve impulses with anaesthetic agents used in severe pain. Blocks may provide permanent or temporary relief. They do not, however, help once the pain becomes sympathetically independent, which tends to be within the first three years but varies from patient to patient.