What is a Pain Trigger? This is anything that can cause, or ‘trigger’, an increase in your ‘normal’ level of pain. Often referred to as breakthrough pain or flares. This is pain in addition to your normal pain and may last from a few minutes, if you are very lucky, to days or even weeks. The longer you have RSD/CRPS the more sensitive your Central Nervous System (CNS) becomes, and what others without pain may not even notice can cause the RSD/CRPS sufferer to experience extreme and often sudden pain. The reaction to the trigger may also vary depending on other factors affecting the RSD/CRPS sufferer at the time, like illness or stress, and indeed these are also triggers in themselves.
When first learning to live with RSD/CRPS what causes the pain to change can be a mystery, but if you keep a diary and note what is happening around you when the pain flares up, you can often identify what the cause is, although even once you have done this you may not be able to prevent it from happening again, but at least you will be aware. Researchers disagree on the actual percentage but it is thought that somewhere between 20-40% of flares are caused by unknown factors—just to make life with RSD/CRPS even more difficult.
This may seem like a long list, but please remember, that NOT everyone with RSD/CRPS will react to all of these triggers, and if they do then their reactions may not always be extreme. Over time many with RSD/CRPS learn to adapt by doing things in a different way, getting someone else to do certain things, or avoiding certain situations wherever possible.
There are many triggers, and they will vary from person to person, but in general the following are often classified as common Pain Triggers:
Weather—this can be anything from humidity, a coming storm, rain, cold, heat and wind (it is caused by a clash of the pressure naturally found in the body and the external barometric pressure, which can even cause body tissues to swell in those who are sensitive)
Light Breezes—from air conditioning, fans, even as simple as a door being opened or closed
Change in temperature—for example if you are in a heated room, especially if you have skin exposed, like the bathroom, and a door is opened and cooler air comes in
Water—one of the biggest problems for those with RSD/CRPS is showering because the falling water, no matter how low the pressure is, can feel like nails, or sharp pellets being fired continuously at the skin—many with RSD/CRPS dread having a shower
Bedding— even the lightest of sheets brushing the RSD/CRPS affected skin can cause a flare up, as can too much weight on the affected area, such as too many blankets, many find a cradle in the bed to lift the sheets etc can help, and using a quilt and/or electric blanket, instead of blankets for warmth
Clothing—in particular tight clothing, this often leads to the affected limb feeling swollen, or rough seams/tags which irritate the skin, loose, light weight clothing is best, and in summer a light weight top with longer sleeves, if your arms are affected by RSD/CRPS, will help to protect the skin from air movement
Noise—sudden sounds like the brakes of a truck or car, a child’s scream, an air horn, also the rumble of traffic, especially buses and trucks, and loud music, especially music with a distinct beat to it, and high pitch noises like the sound of a drill, all these can set off a pain flare
Vibration—along with the noise of traffic and music, those sensitive to external triggers will often “feel” the vibration, also travel in a car or bus, or using a vacuum cleaner, electric hand beaters, having the dentist drill your teeth, all these vibrations can travel throughout the body and will often last long after the event. For example when I have had a tooth drilled for a filling the vibration caused extreme pain in my RSD/CRPS areas, but not the mouth, and this sensation stayed with me for days, sometimes over a week, some with RSD/CRPS have had the same experience when using an electric toothbrush.
Foods—some with RSD/CRPS have found that eating certain foods, especially spicy foods, or tomatoes and potatoes (from the Deadly Nightshade family) sugar and caffeine can have a dramatic effect on their pain, if you are keeping a pain diary to try to find out what your triggers are, remember to keep a list of foods and drinks consumed as well just in case these are a source of pain
Illness—just as illness will wear you down when are basically healthy, when you have RSD/CRPS it can weaken your ability to cope with the pain, even a head cold, mild headache or mild allergies can have this effect
Exhaustion—this is a vicious cycle because the more pain you have often the less sleep you are able to have, and the less sleep the more exhausted you get and the more pain you experience, it is important that if you are not able to sleep properly at night that you at least rest during part of the day, even if you don’t get to sleep, this allows your body to cope better with the pain
Stress—like exhaustion this too is a catch 22 situation, the more pain you have the more stressed you often become, especially if you do not really understand what is happening or are not being treated well, and the more stressed you become the more pain you get, and you are unable to cope with the pain as well
Menstruation/menopause—with the changes in hormones that the body experiences at these times the RSD/CRPS pain may increase, medications or natural supplements that can reduce PMS or menopause symptoms can often help
Medication—yes even medications can cause pain flares, for various reasons, they may weaken your body, they may increase your sensitivity, they may cause a reduction in your Sodium levels, or affect the way in which your pain medication works, and if you are on high doses of Opioids for a long time there is the risk of Opioid Sensitivity—if you are experiencing pain flares and have recently changed medications or increased doses discuss this with your doctor, sometimes a simple blood test can give you answers.
Other simple everyday tasks that can cause an increase in pain can include cutting or filing toenails and fingernails, having your hair cut, removing a band aid or medical tape, shaving or waxing, using utensils that are too narrow and cause your fingers/hand to cramp up, holding the telephone for too long, simple kitchen burns, sitting on the toilet for extended periods because of constipation, uncomfortable seating, and even sex.
But don’t panic, as I said before NOT everyone will experience pain from these triggers, it can depends on where your RSD/CRPS is, and if you do experience extreme pain then you can often adapt your behaviours to reduce the risk.
Aids, such as those used for sufferers of arthritis for example can assist with daily tasks around the home, and ask for help from your family or Carer to reduce the tasks that irritate your pain. When first living with RSD/CRPS keep a diary. Note the level of pain and what activities you have done or foods and drinks consumed, the weather and other possible contributing factors. For example if they are digging up the road or someone nearby is having some renovation work done, may be a cause of your increase in pain.
THINGS TO SAY TO, AND DO FOR, SOMEONE LIVING WITH RSD/CRPS
While it is important not to say the wrong things to those living with RSD/CRPS, and their Carer's families, it is just as important to say the right things. People often feel uncomfortable and don’t know what to say. Also, some people want to help out if they can, but are unsure how to go about it.
So here are a few ideas of things to say that show your support:
“It is so great to see you, I know how hard it is for you to get out and I really appreciate you being here.”
“You look good, I know that is not how you feel, but you do.”
“I know it is a huge effort for you but it is lovely to see you smile.”
“I have a few hours free on Saturday and wondered if you would like me to come and do some washing/cleaning/housework/gardening for you? If you feel up to it maybe we could have a chat at the same time.”
“I had a baking day and thought you might enjoy some home baked goodies.”
“I have been cooking and here are a couple of meals to put into your freezer for when you just don’t feel up to cooking.”
“I haven’t come to stay, but I was in the garden cutting some flowers, and I have brought you a bunch just to show that I am thinking of you.”
“I shop every other day, if you ever need anything don’t hesitate to ask, it is easy for me to drop it off here for you.”
“I am free a few afternoons a week, if you ever need to go somewhere like a doctors appointment, etc, please let me know. It would be no trouble and would give us a chance to have a chat at the same time.”
“My kids are looking to make some extra pocket money, so if you have any jobs you would like them to do for a few dollars just let us know. They can mow lawns, do dishes, wash the car, wash the dog, walk the dog, clean your windows, pull weeds.”
WHAT NOT TO SAY TO SOMEONE WITH CHRONIC PAIN
When you see someone who is living with chronic pain, it is usually on a good day, and they make a supreme effort to look and be as ‘normal’ as possible. This does not mean they are better, or that their pain has gone away. People living with chronic pain have good days and bad days, while a bad day may mean a pain score as high as 9 or 10/10, a good day may only be as low as a 7 or 8/10. A pain score which would have many non chronic pain sufferers screaming in agony!!
Don’t judge a book by its cover.
You look well—you must be feeling better. (Many people living with chronic pain do not show on their face what they feel inside—so please, do not assume.)
It is nice to see you out and about—you must be well again. (Even those in chronic pain need to go out and do some shopping, go for appointments, or simply get out of the house—it takes all their inner strength to do it, and they generally pay for a few hours out for days, even weeks.)
I always see you with a smile on your face– your pain can’t be that bad. (Those in chronic pain do their best to hide their pain from others, often because they don’t want to appear to be complaining all the time, and it helps their own self esteem to be treated as “normal” by other people.)
I saw you in the garden the other day—you must be better now. (Again, people in chronic pain will have good days on which they will often attempt to do those jobs that annoy them when they are having bad days and are unable to do anything at all—this work, whether it be 10 minutes or more, will cause an extreme increase in their pain and they will suffer more than usual for days after, maybe even weeks. But being able to do something, anything, makes them feel less of a burden on others.
I saw you coming out of the hairdressers/nail salon/beauty parlour, etc, etc—you are okay now then I guess. (Well just like everyone else our hair grows, our nails need doing, we need a 'pick me up' from time to time. Jobs like finger and toe nails we may not even be able to do for ourselves so need to go to someone else for even basic manicure and pedicure treatments.)
If you exercised more you wouldn’t be in so much pain. (While some basic movement is needed to stop muscles from atrophying, for many in chronic pain more then this will in fact cause more pain, which can last for days.)
You lay down a lot, you are just lazy. (No, we are in pain and chronic pain is exhausting. Also, it can be difficult to find a position that is comfortable, and often laying with the legs raised offers the most comfort. This does not mean pain free, it simply means slightly less pain.)
If you ate more you would feel better. (Pain, especially chronic pain, takes away the appetite. Think back to the last time you had a very bad headache or period pain—did you feel like sitting down and eating a large meal?)
If you slept regular hours you wouldn’t need a nap during the day. (Chronic pain causes sufferers to lose sleep, because it is very difficult to get to sleep when in so much pain, even with sleeping pills, etc. So having a nap during the day can offer a chance to have a little more rest. But with many chronic pain sufferers often going days with only 1-2 hours sleep a night, even a nap doesn’t make any difference.)
You are too reliant on those crutches/walking sticks/wheelchair. If it was me I would just throw them/it away. (Many with chronic pain need the extra support, and stability, of walking aids,or are indeed so disabled that they need a wheelchair simply to get around. We could throw them away, but then we would not go anywhere at all!!)
You need to make more of an effort. How can you bear being such a burden on your family? (Many in chronic pain do feel that they are a burden on their families, and will do everything that they can to help out, often suffering more in the process. No one chooses to live like this!! And as for making an effort—for many it is an effort to simply get out of bed and go to the toilet before wetting themselves—yes their pain really is that bad!)
My Aunt/Cousin/friend/friend’s friend/next door neighbour/etc, had the same thing and she took some pills and it went away. Why don’t you do that? (Well if indeed she did in fact have RSD/CRPS, not gout, RSI or similar, and has some magic pills, please ask her to call me because there are millions worldwide would love to know what this magical/secret cure is.)
You take too many pills, they are obviously not working or you would be better. (Those with chronic pain often take a variety of pills to help to manage the pain, the depression, and the side effects of the pills they take. If they didn’t take them they would not be able to do the little that they can do now. There is no magic cure, nothing to take all the pain away, sufferers merely look for what provides the best relief, or lessens the pain better.)
You take narcotics you must be a junkie! (Classic ignorant statement—no we are NOT junkies, or drug seekers, we are merely desperate to get some relief from this dreadful pain we are forced to live with and narcotics just happen to be the strongest pain reliever there is. Believe me if eating red jelly beans did the same thing we would do that instead!!)
You take Methadone—do you also have a problem with Heroin? (No, I have never taken Heroin. Methadone also works as a powerful pain reliever.)
Have you been to the Health Food Store/Chemist? I am sure there is a supplement that can help? (Yes, I have, and no, there isn’t.)
Sometimes you walk with a limp, and sometimes you walk normally. Is this because you forget to limp? (No when I walk with a limp it is because I am in so much pain I cannot move my leg normally. When I walk without a limp it is because the pain is a little less. Not because I forget!)
You should try acupuncture, yoga, swimming, aerobics, massage, vitamins, ice therapy, anti inflammatories, prayer, etc, etc etc. (You should try learning about what I have, not what you think I have, and then asking me about it. You might be surprised at just what I have tried, and what can in fact make it worse.)
If you really want to be helpful, learn about RSD/CRPS, then discuss it with the person living with it instead of telling them what they should or should not be doing. Simply taking a genuine interest can help them more than you can ever realise. But by bombarding them with statements, that are born in ignorance, no matter how helpful you may mean to be, only causes more stress and frustration—which in turn, causes more pain.
And Please, Please, avoid the following statements at all costs!!!
You are so lucky, I wish I could– sleep in, sit up late at night and watch TV, get paid for doing nothing, get a concession on my electricity/water/medications/etc, ‘zone out’ on narcotics (which by the way does not happen with people in chronic pain, the medications work in a different way and we do not get high!!), have nips of vodka whenever I feel like it (this is a remedy used by some in chronic pain only when the medications are not helping at all—usually when they are in a pain flare up and extremely desperate), have someone to drive me around/do my housework/do my ironing/cook for me, stay at home all the time, not have to get up and get dressed for work, live in my pj’s/sweat pants, get better parking because of that permit you have, get out of doing things/avoid people or situations just by saying my pain is bad, get to play games/chat/Facebook on the computer whenever I want.
Yes, we are SO LUCKY—we get to live in chronic pain 24/7!!!
For many the job of being a Carer to someone living with RSD/CRPS is thrust upon them, rather than a conscious choice they make. RSD/CRPS comes suddenly into life for the person suffering with it, and because of circumstances they find that they are ‘appointed’ as the Carer. It may be that they are a parent, a sibling, or indeed a child, a partner or even a friend. Without any training, or often even knowledge of the condition, they are expected to look after the person, take over their normal duties (depending on the severity of the RSD/CRPS), be social worker, counselor, researcher, educator of others about the condition and what it involves, and advocate—and a hundred other roles as well.
All of this is happening at the same time they are worried about the person they are Caring for. At the beginning it can be a nightmare, very little is understood, and it may even be a long time before a diagnosis is actually made. So the Carer has 2 choices—stand by and help and support wherever possible while the person they love is in pain and often going through depression - or walk away. Sadly, some do find it too much and they walk away. While others choose to blame the person with RSD/CRPS for the changes in their lives, sometimes to the point of mental/emotional abuse, making their condition and depression worse. In this case it would be better for everyone, if they did indeed walk away.
Being a Carer is a huge responsibility, the role varies from person to person depending on factors such as the abilities of the person with RSD/CRPS, other people involved, ie children, their own responsibilities, ie job, and the help and support of others, ie other family members or friends and medical professionals.
So it is important that Carers remember that they have two main roles—to look after the person with RSD/CRPS and, just as importantly, to look after themselves.
SOME IDEAS WHEN CARING FOR SOMEONE WITH RSD/CRPS
Be Patient Remember we all have bad days!
Show You Care You don’t have to talk about pain all the time to show your concern. A look, a gentle touch, a hug or just a kiss can make all the difference.
Don’t Keep Asking About The Pain If you are continually saying things like “Is the pain bad?”, you can in fact make things worse. The person with RSD/CRPS wants to try and put the pain to the back of their mind as much as possible, and this can be difficult if someone is continually reminding them of it. Once you have lived with someone with chronic pain for a while you will be able to tell how bad their pain is simply by looking at their face, in their eyes, or by their body language.
Be Aware While the person with RSD/CRPS wants to be as independent as possible, and often finds it frustrating to keep asking for help, it is nice if someone can anticipate what they need. This can be as simple as a nice cuppa, or preparing a meal, a shoulder to cry on or a nice hug. If the person with RSD/CRPS uses a hot pack to aid pain relief and you know they are having a bad day, don’t ask just bring them one.
Don’t Try To “Compete” With The RSD/CRPS They realise that they are not the only one with problems but there is nothing worse than to have someone continually complaining about their minor aches and pains when the person with RSD/CRPS talks of their problems. It is not a competition.
Try To Accept The RSD/CRPS RSD/CRPS doesn’t just affect the person with RSD/CRPS. It will change life for everyone else, to varying degrees. But, denying that the RSD/CRPS exists, or thinking that the RSD/CRPS does not affect you, is only going to make a bad situation worse!
Discuss Their Worries Due to the nature of RSD/CRPS and the fact that all sufferers have different symptoms; The person with RSD/CRPS can often get very worried about new symptoms. It is easier if these concerns can be discussed.
Learn As Much As You Can this will help you both to understand RSD/CRPS a little better, and show the person with RSD/CRPS that you care enough to learn more about the condition. You don’t have to take a medical degree, just learn the basics. We can help with information. If you can understand RSD/CRPS a little, you will cope better.
Support The Person With RSD/CRPS This is so important to the person with RSD/CRPS. Supporting them with family, friends and helping other people to understand RSD/CRPS and the problems means a lot to them.
Take The Side Of The Person With RSD/CRPS With Medical Professionals And Remember That The Person with RSD/CRPS Knows Better Than Anyone What Is Happening To Their Body!!! Doctors, etc, often haven’t heard of RSD/CRPS and can try to dismiss the person with RSD/CRPS as weak or a crank, malingerer, or even worse, a drug addict. This is not to say that all medical professionals think this way! This is so demoralizing, and if their family and friends also take the side of the doctor, etc, the person with RSD/CRPS can often feel they are going crazy and feel very alone! This type of pressure, added to the domination and confusion often caused by RSD/CRPS, can lead to thoughts of suicide. They need you to take their side – show your belief in them! After all you know them better than any doctor! If a doctor tries to confuse you with lots of medical jargon, ask them to put it into simple terms. In many cases they can’t because they don’t really know what they are talking about.
Believe The Person With RSD/CRPS Even If What They Say Doesn’t Make Sense To You! Again, there is still a lot to learn about RSD/CRPS and its effects on the body, but just because it doesn’t make sense doesn’t mean it is not true!! For example my pain is worse if there is a change in temperature, my bowel is upset or I am pre-menstrual. Not logical but it doesn’t make the pain any less real – or painful!!!
Don’t Wrap Them In Cotton Wool They know what they are capable of, and this may vary from day to day, and they will want to be as independent as possible. Encourage them to do new things, try new activities and have new interests. Sometimes RSD/CRPS can get so demanding that the person with RSD/CRPS isolates themselves from the community. As tasks prove difficult try to suggest a different way of doing them. You will both need to continually adjust.
Be Careful When Introducing New Aids While you may think that you are doing the right thing, some times the person with RSD/CRPS may think/feel that you are making an invalid out of them. For example, my Mum gently raised the idea of me using a walking stick at home because she was aware of the danger of me falling. At first I resisted the idea because I felt that walking sticks were only for “old people”! I didn’t want to admit that my RSD/CRPS was deteriorating to the point that I needed a walking stick. I did eventually realise I needed one; I bought one and wouldn’t be without it now. But when it was first raised I wasn’t emotionally ready. The fact that RSD/CRPS tends to get worse, and can spread, is daunting, and I felt that if I denied I needed extra assistance, then my RSD/CRPS wouldn’t get any worse. Of course this is illogical, but if my Mum had pressed the point I may not have gotten a walking stick at all, and increased the risk of having a fall. So be careful, be gentle about bringing up the subject, and be aware of the reaction of the person with RSD/CRPS, and not just what they say. After all, they are the ones who are dealing with a very uncertain future and believe me it can be very scary!
Don’t Use The RSD/CRPS As An Excuse! At one time or another we have or will use RSD/CRPS as a reason for not gong somewhere we don’t particularly want to go. However, only do this after you have talked it over with the person with RSD/CRPS. There is nothing worse than having your condition used as an excuse when you don’t know about it. Also, others may think that it is the person with RSD/CRPS who doesn’t want to go out and that they are spoiling it for the Carer – be careful!
Try To Keep A Sense Of Humour This can be life saving for everyone. Sometimes when a condition such as RSD/CRPS starts to dominate a family, or the relationship with friends, people feel uncomfortable about humour. Of course this will depend on the individual, but there’s still no better medicine than laughter. Even when all seems hopeless it is important that you try and see the funny side of things – no matter how bazaar. This is not always possible, but try, it really can help.
HELPING THE CARER LOOK AFTER THEMSELVES
Don’t Be A Martyr! If you are not feeling well or finding dealing with RSD/CRPS difficult, talk about it. The person with RSD/CRPS is aware of the problems their RSD/CRPS causes others, and if someone is trying to be a martyr this can make things worse! You may end up with a situation where the person with RSD/CRPS doesn’t talk about how they feel or any new symptoms, and the Carer doesn’t talk about how they feel – this is a bad situation and could even be dangerous. Always keep those lines of communication open!
Try To Accept The RSD/CRPS As I said before, RSD/CRPS doesn’t just affect the person with RSD/CRPS. It will change life for everyone else, to varying degrees. But, denying that the RSD/CRPS exists, or that the RSD/CRPS does not affect you, is only going to make a bad situation worse!
Discuss Your Worries Just like the person with RSD/CRPS the Carer/partner/family of the person with RSD/CRPS also has worries/concerns, What will happen in the future? What does this new symptom mean? Sometimes if you can talk about these concerns things don’t seem so bad. Remember there is nothing like internalizing a problem to blow it out of proportion.
Don’t Give Up Your Life For RSD/CRPS Although this may sound strange after what I have already said, if you let RSD/CRPS take over your life you will end up being bitter. You must try to find a balance between assisting, caring and supporting the person with RSD/CRPS and also being your own person. If you do give everything up for them this will make them feel guilty and even a burden. This is especially true if you have given up your job/work to become a full-time Carer. Discuss this with them, this may mean that some of the activities you used to do together you may have to do on your own. But don’t exclude the person with RSD/CRPS, sometimes they may be able to be with you, or just participate in part of the activity. For example if you like to go bowling, maybe the person with RSD/CRPS could be a part of the cheer squad and also keep official scores. They are still involved, but not actively participating. This will of course depend on the level of RSD/CRPS. You must, however, be yourself and have outside interests as well. It is important for both of you, and will bring a balance into your lives. Also, don’t be afraid of sharing your outside experiences with the person you care for, they may lead a limited life, in terms of getting around socially, and will often enjoy hearing what you have been doing, or how mutual friends are getting on. Even a funny anecdote may lighten their day. Remember, they don’t live in a bubble, they need outside stimulus as well.
Try To Keep A Sense Of Humour I did mention this before but it is just as important for you as it is for the person you are caring for, and you may be surprised how, even in the most dire of situations, something will strike you as funny, and you can both get some release from having a laugh. It doesn’t mean that you are not taking the situation seriously, it just means you are trying to keep a balanced outlook.
Remember – There Is Help Available There are groups for Carers, where people can go out and talk to other Carers, or join websites and chat rooms. No matter what the person has they are caring for, many of the issues are the same. Sometimes just talking to someone who has similar experiences and/or concerns to yourself can help. You will feel you are not alone. Also, The Australian RSD/CRPS Support Group can help you with information, or just a friendly ear to listen.
Don’t feel you have to do it all alone.
Don’t be too proud to ask for help.
This site is for general information only. I am not a Medical Professional but I do live with RSD/CRPS and so have a good understanding of the issues of this condition. Information here is to be used as a guide only and before trying any treatments you should consult with your GP and/or Specialist. The Australian RSD/CRPS Support Group accepts no responsibility for an individual’s choices after reading the following information.
PO Box 9
POINT PASS SA 5374
Email – [email protected]
Phone – 08 85 811 007
Mobile – 0401 794 884 (send text only with your number and I will call you back)
Reflex Sympathetic Dystrophy - RSD