Coping With CRPS/RSD and Chronic Pain
When you are faced with a diagnosis of chronic pain or CRPS/RSD, you will have many different feelings, thoughts and problems you are going to have to deal with. Learning how to cope and using some coping strategies for CRPS/RSD and chronic pain can help you handle the situation and what you are faced with in the future.
Within this particular blog the aim is to try and give you 11 Coping Strategies to deal with daily living with a chronic, long-term condition like Complex Regional Pain Syndrome (CRPS/RSD) or chronic pain. Chronic means that the problem has lasted for over 3 months or 12 weeks. Complex Regional Pain Syndrome is a very challenging and complex condition in that as it is considered an invisible illness most people are unaware of it when they first see you. You may have already been told by many including friends and family:
‘But you look really well!’
‘You don’t look ill!’
‘Surely there’s something the doctors can do?’
‘There’s nothing wrong with you!’
‘You’re just being lazy!’
‘I can’t believe that you’re in so much pain’‘Why aren’t you better yet?’
Most of you will have heard at least 1 of the above phrases since diagnosis and every time something is said along those lines, it gets harder and harder to take. The problem is that people do not understand the condition which unfortunately includes some of the medical and healthcare professionals, which is sad to say.There are various parts of your daily life that you have to try to learn to cope with such as;
- Your diagnosis of CRPS/RSD or chronic pain,
- Your emotions,
- Your physical & mental limitations because of the condition,
- Family and friends,
- The various treatments that you may need to have or to try
- Your stress
How do I learn to cope with CRPS/RSD and chronic pain?When you are faced with a lifetime diagnosis such as CRPS/RSD and other chronic pain conditions it can be very difficult and challenging to actually accept the diagnosis in the first place. Learning acceptance is important, take a look at the Acceptance for CRPS/RSD & chronic pain blog in this website. You may find that your friends and family find it hard to believe you and about your pain because they cannot physically see it . This makes coping even more difficult but it isn’t impossible and this is what this blog can help you with.
What are coping strategies for CRPS/RSD and chronic pain?Coping strategies for CRPS/RSD, other chronic pain conditions and chronic pain in general are varied according to each person. Every sufferer will have their own unique ways of how to cope with their CRPS/RSD or chronic pain. Coping strategies can include:
- Finding a support group – either online or near your home. Visit the Burning Nights CRPS Support FORUM
- Pacing yourself on each activity – See PACING
- Learn to Relax – See RELAXATION
- Accept your diagnosis of Complex Regional Pain Syndrome (CRPS) or chronic pain – Read ACCEPTANCE for CRPS/RSD and chronic pain
- Speak to your GP, local Doctor, Counsellor, Psychologist – Get some advice if you feel that you are not coping too well with your CRPS/RSD and chronic pain or visit our Psychological Treatments blog series
- Take up or continue doing your hobby or doing exercise
- Discover Distraction – See DISTRACTION TECHNIQUES
- Try some Visualisation / Guided Imagery – See RELAXATION TECHNIQUES
- Introduce Deep Breathing exercises into your routine – Visit BREATHING EXERCISES
11 COPING STRATEGIES FOR CRPS/RSD AND CHRONIC PAIN – In Detail
1. FINDING A SUPPORT GROUPSupport groups can be extremely helpful when you want to talk with other sufferers like yourself that are dealing with things in their way. Being able to chat with others can help you learn new ways of coping, understand how others cope and interact with people who understand what you’re going through. Support groups can be either interactive like the Burning Nights FORUM, on Social Media (Facebook, Twitter, Google + etc) or in person where you physically go to a group and meet other people in similar situations like yours such as our CRPS support groups.
2. PACING YOURSELFLearning how to pace yourself is an important part of coping with your condition. Unsure what pacing actually is? Pacing is discovering where your limit is for doing an activity and staying with your limits. For example if you are doing the washing of your clothes, you may want to do it all together in 1 big pile and ‘throw‘ it in the washing machine. Then when you’re finished you find yourself in so much pain you need to take more medication and then have a pain flare up for the next few hours or days. Using the pile of washing example, by learning to pacing you learn to split up your activity into more manageable chunks. So you would split up your washing into maybe 3 or 4 or more sections and have a rest in between each load of washing for example. List your jobs you need to do for the day and if necessary delegate to friends or family. If that isn’t possible, then write yourself a list and set yourself a task to do that morning, afternoon or day and stick to it. Don’t be tempted to carry on to the next task on the list as it could make your pain worse even if you don’t feel it at the moment, by stretching yourself further may cause a flare up. Visit Burning Nights PACING blog for more detail or the blog on Tips on How to Cope through Christmas which gives you some tips on how to pace yourself during the Holidays.
3. RELAXATIONRelaxation techniques are to help calm yourself right down and also slow down your nervous system which will be working overtime because of your chronic pain. By learning a few simple relaxation exercises can really help you cope with the stress and range of emotions that living with chronic pain or CRPS/RSD evokes. Burning Nights CRPS Support has a blog for RELAXATION EXERCISES, why not take a look?
4. ACCEPTANCEHaving a diagnosis of CRPS/RSD or chronic pain you face a range of emotions, thoughts of feelings including loss or grief for your old life, your old ways of doing things or your old career. By learning to accept your new way of life, yur new ways of doing things or new activities is important in your healing process. Some people never accept their condition, some are constantly looking for answers, new treatments or new specialists.
Accepting your chronic pain or CRPS/RSD is the hardest thing to do; accept that you have your chronic pain or CRPS/RSD permanently and it cannot be changed. This will be the most difficult thing to overcome in your ‘new‘ life living with a chronic condition. However you will go through various stages just like you’ve had a major loss. You have had a loss –loss of your old life.
Visit the ACCEPTANCE blog to give you the best information possible to help you to accept and cope with your CRPS/RSD or chronic pain.
5. TALK TO YOUR GP, LOCAL DOCTOR or SPECIALISTTaking the step to admitting or accepting your chronic pain or CRPS/RSD is extremely difficult and so talking to someone other than yourself or your friends and family around you is also an extremely difficult thing to overcome. But talking to a doctor about how you are coping can give you a release that you may need. For those of you living in the UK, you can use the NHS CHOICES website to find a local GP if you don’t already have one. If you have a GP or local doctor (for those outside the UK) book an appointment and go to see them, talk to them about how you are coping with your CRPS/RSD or chronic pain. According to F. Michael Ferrante, MD, director of the UCLA Pain Management Center in Los Angeles, he says:
“Pain is always personal”The website and article entitled ‘Helpful tips on talking to your pain doctor’ is a good source of information and does provide some good tips. (See below for full details)
6. HOBBIES & EXERCISEMeeting with other people whether they have chronic pain or not can help you cope with your chronic pain or CRPS/RSD. Gentle exercise such as Yoga, swimming, gentle walking, Tai Chi can all help, as long as you pace yourself doing the activity. Hobbies such as knitting, sewing, computing or art work are all considered distractions and can help you deal with chronic pain or CRPS/RSD. In an article by Christina Lasich MD ‘Accessible Hobbies for people in pain’ she says:
For those who need not only joy but a way to relax, some hobbies can provide a comforting combination of repetition, skill and accomplishment. One hobby that seems very easy for people in pain to do, if done at a reasonable pace, is knitting.The repetition of throwing stitches is a form of meditation that evokes a relaxation response. The skills necessary to create items like scarves, hats, throws, and mittens stimulates and distracts the brain.”
7. HYPNOSISHypnotherapy for chronic pain management is another alternative therapy that can be used in conjunction with medication or as a single type of treatment. But you need to discuss hypnotherapy with your medical doctor or pain specialist before you begin to try hypnosis to help with the treatment of your chronic pain or CRPS/RSD. According to Elkins, G et al. (2007) ‘Hypnotherapy for the management of chronic pain,’ (See below for full details):
“The findings indicate that hypnosis interventions consistently produce significant decreases in pain associated with a variety of chronic-pain problems.”Hypnotherapy is to help you change the way you perceive your pain and to lower the sheer intensity of pain that you feel. Usually within hypnosis or hypnotherapy there’s an element of self-hypnosis and this self-hypnosis where you are able to practice what you have learnt during the hypnosis sessions. The Hypnotherapy Directory (See below) says that:
“As well as using certain hypnotherapy techniques such as suggestion hypnotherapy, analytical hypnotherapy and visualisation, some practitioners may also use Neuro-Linguistic Programming (NLP) and Psychotherapy to enhance their treatment.”
8. BIOFEEDBACKAccording to the Mayo Clinic website (See below for details) Biofeedback is:
“.. a technique you can use to learn to control your body’s functions, such as your heart rate. With biofeedback, you’re connected to electrical sensors that help you receive information (feedback) about your body (bio). This feedback helps you focus on making subtle changes in your body, such as relaxing certain muscles, to achieve the results you want, such as reducing pain.”Biofeedback is good for a wide range of conditions including chronic pain, fibromyalgia, hypertension, stress, anxiety and much more. There are several types of Biofeedback which include:
- Electroencephalography (EEG) or Neuro-feedback – Measuring the brain wave activity
- Electromyography (EMG) – Measuring muscle tension
- Thermal Biofeedback – Measuring skin temperature
- Galvanic Skin Response Training – Measuring your sweat glands and how much you sweat
- Heart Rate Variability Biofeedback – Helps control your heart rate
9. DISTRACTIONDistraction can be anything that takes your attention and focus away from the pain that you are feeling. It is a temporary way of turning mind and thoughts to something other than just your pain. So while you wait for the medication to work try adult colouring, painting, drawing, craft-work, photography, watching television, writing, poetry, sewing, art-work or even knitting. Visit the Burning Nights DISTRACTION blog.
10. VISUALISATION / GUIDED IMAGERYThis is all based on the idea that both your mid and your body are joined or connected. It is a cycle of specific positive thoughts and ideas that point or guide your imagination in the direction of a calm and relaxed but concentrated state. You need to use all of your senses available to you and your body naturally appears to respond to what you are imagining, so much so that you believe that it is real. Visualisation can literally change all your emotions. WebMD (2013) (See below) give an example of:
“…to imagine an orange or a lemon in great detail—the smell, the color, the texture of the peel. Continue to imagine the smell of the lemon, and then see yourself taking a bite of the lemon and feel the juice squirting into your mouth. Many people salivate when they do this. This exercise demonstrates how your body can respond to what you are imagining.”You can find a number of CD’s and exercises on the internet to help you learn the art of Visualisation / Guided Imagery. However a quick an easy exercise from Klein, J. ‘How to Use Visualisation to Heal Physically or Emotionally’ (See Below) is:
- Start with gentle breathing.
- Focus on relaxing all your muscles (head to toe, toe to head, etc.).
- Sensory integration (i.e., using your five senses to integrate yourself into the visual imagery)
11. BREATHING EXERCISESLearning to use deep breathing exercises is an important skill to learn. It is an alternative therapy so no medication is involved it is just you and your breathing that is the focus. When you are in a state of frustration, stress, tension or pain your mind and body and not in a sense of relaxation and this is what is the aim to change, so when you start to slow right down and begin to draw in some deep breaths, the brain and mind begin to slow down and to relax. This then gets a message sent from the brain to the rest of your body and soon after both the body and mind will become relaxed, your blood pressure will drop, your heart stops pounding and racing fast and your heavy fast breathing begins to calm down.
Although deep breathing exercises will not cure your chronic pain, but could help get you through the day. Why is breathing a good source of managing pain? The answer is that not only does it relax your mind, lessen stress and tension but it will also make you and your brain focus on something totally separate from your pain or flare up.See BREATHING EXERCISES
RESEARCH / STUDIES / ARTICLES / WEBSITES REFERRED TO WITHIN THIS PAGE
ESSENTIAL RESEARCH and STUDIES
- Abbott, A. (2011) ‘The Coping Strategies Questionnaire’ 23 February 2011 Karolinska Institute, Sweden. Journal of Physiotherapy. Vol 56 Issue 1 pp 63. Available from: <http://www.sciencedirect.com/science/article/pii/S1836955310700618> doi: 10.1016/S1836-9553(10)70061-8Peres, M.F, Lucchetti, G. (2010) ‘Coping strategies for chronic pain’ 2010, Oct. NCBI NIH. Vol 14(5) pp.331-338. Available from: <http://www.ncbi.nlm.nih.gov/pubmed/20680705> doi: 10.1007/s11916-010-0137-3
- Bruehl, S., et al. (2006) ‘Psychological and Behavioral Aspects of Complex Regional Pain Syndrome Management’ 2006, June. Clinical Journal of Pain. Vol 22 Issue 5 pp 430-437 Available from: <http://journals.lww.com/clinicalpain/Abstract/2006/06000/Psychological_and_Behavioral_Aspects_of_Complex.5.aspx> doi: 10.1097/01.ajp.0000194282.82002.79
- Elkins, G. et al. (2007) ‘Hypnotherapy for the management of chronic pain,’ (2007) International Journal of Clinical & Experimental Hypnosis. (Special Issue: Evidence Based Practice In Clinical Hypnosis Part II) Vol 55 Issue (3) pp 275-287. Available from: <http://www.tandfonline.com/doi/full/10.1080/00207140701338621> doi: 10.1080/00207140701338621 Received Accepted 14 February 2006. 26 August 2006. Published 29 October 2010.
- Geisser, M.E., et al. (1994) ‘The Coping Strategies Questionnaire and chronic pain adjustment: a conceptual and empirical re-analysis’ 1994, June. NCBI NIH & Clinical Journal of Pain. Vol 10(2). pp 98-106. Available from: <http://www.ncbi.nlm.nih.gov/pubmed/8075472> PMID: 8075472
- Marinus, J. et al. (2013) ‘The role of coping and kinesiophobia in patients with complex regional pain syndrome type 1 of the legs,’ 2013, July. Clinical Journal of Pain. Vol 29(7) pp 563-569. Available from: <http://www.ncbi.nlm.nih.gov/pubmed/?term=coping+strategies+with+CRPS> doi: 10.1097/AJP.0b013e31826f9a8a
- Mior, S. (2001) ‘Exercise in the treatment of chronic pain,’ NCBI NIH. Clinical Journal of Pain. Dec 2001. Vol 17 (4 supplement), pp S77-85. Available from: <http://www.ncbi.nlm.nih.gov/pubmed/11783835> PMID: 11783835
- Rosenstiel, A.K., Keefe, F.J., (1983) ‘The Use of Coping Strategies in chronic low back pain patients: Relationship to patient characteristics and current adjustment,’ Accepted November 1982. Journal of Pain. Vol 17 (1983) pp.33-44. Available from: <http://www.sciencedirect.com/science/article/pii/0304395983901252> doi: 10.1016/0304-3959(83)90125-2
ESSENTIAL WEBSITES and ARTICLES
- American Psychological Association & Molitor, N. PhD. et al. ‘Coping with Chronic Pain,’ 2015. Available from: <http://www.apa.org/helpcenter/chronic-pain.aspx>
- Block A.R. PhD (2007) ‘Chronic Pain Coping Techniques – Pain Management,’ Spine-Health. Available from: <http://www.spine-health.com/conditions/chronic-pain/chronic-pain-coping-techniques-pain-management>
- Ehrlich, S.D. NMD (2011), ‘Biofeedback,’ University of Maryland Research Center. Last Updated 7 May 2013. Available from: <http://umm.edu/health/medical/altmed/treatment/biofeedback>
- Hawkins, G. PhD ‘Helpful Tips on talking to your pain doctors,’ Chronic Pain Recovery. Available from: <http://chronicpainrecovery.com/Article_Talking_to_your_doctor.asp>
- Hypnotherapy Directory ‘Hypnotherapy for Pain Management,’ Available from: <http://www.hypnotherapy-directory.org.uk/articles/pain-management.html>
- Klein, J ‘How to Use Visualisation to Heal Physically or Emotionally,’ Available from: <http://life.gaiam.com/article/how-use-visualization-heal-physically-or-emotionally>
- Lasich, C. MD (2011) ‘Accessible hobbies for people in pain,’ Health Central. 3 December 2011. Available from: <http://www.healthcentral.com/chronic-pain/c/27148/147689/accessible/>
- Mayo Clinic Staff 12th April 2014, ‘Coping and Support,’ 2014, April. Mayo Clinic Website. Available from: <http://www.mayoclinic.org/diseases-conditions/complex-regional-pain-syndrome/basics/coping-support/con-20022844>
- Mayo Clinic Staff (2013), ‘Biofeedback: Using your mind to improve your health,’ Mayo Clinic. Last Updated 26 Jan 2013. Available from: <http://www.mayoclinic.org/tests-procedures/biofeedback/basics/definition/PRC-20020004?p=1>
- RSD Guide (2015) ‘Coping with CRPS,’ RSD Guide. Available from: <http://rsdguide.com/coping-crps/>
- The Association for Applied Psychophysiology & Biofeedback – Available from: <http://www.aapb.org/i4a/pages/index.cfm?pageid=1>
- WebMD (2013) ‘Guided Imagery,’ 11 June 2013. Available from: < http://www.webmd.com/balance/stress-management/tc/guided-imagery-topic-overview>