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by Kit
Kit first shared her pain story with fellow members of the OzME mailing list. Later the story appeared in Chameleon magazine, and she also kindly gave me permission to post it here. Kit warns: "I have no medical qualifications, and what I write is based on my own experience and what I have read on the topic."
The effects of chronic severe pain
Convincing your GP to take your pain seriously
Developing a pain management strategy
Using opiates
As a support group leader I have come to appreciate that I can't help others in my support group unless I honestly acknowledge the devastation and debilitation of living with constant, 24-hour-a-day pain. Sometimes I find it helpful to relate some of my experience, as this often encourages people to share their own experience and, sometimes, their desperation for help. Silent desperation is deadly. From my experience as a Lifeline telephone counsellor (some years back now), silent suffering frequently contributes to suicidal ideation.
And don't forget the carers either! Think about it. The person you love so dearly is suffering constant severe pain - and you often feel that there's absolutely nothing you can do about it. You may feel helpless, frightened, agitated etc. So remember that pain reaches well beyond the boundaries of an individual.
CFS and FMS patients all experience pain in one form or another. It may not be global myalgia (muscle pain) or arthralgia (joint pain) as in FMS, but headaches, migraines, lymph node pain, sore throats ... these are all pain (and all sub-criteria of the research diagnostic criteria for CFS). Then there is also temporomandibular joint pain (TMJ), myofascial pain, muscle fasciculations, and the severe pain that can be associated with irritable bowel syndrome (IBS). The list goes on.
In the recent Quantum program about chronic pain research, I found the following comment particularly interesting, as it rings true with my personal experience as well:
"There's growing evidence that prolonged severe pain can diminish or kill pain inhibitors - the body's volume control on pain. If inhibitors are out of action, there's no way the nervous system can regulate pain reaction levels." (see note)
There have been times, like this week, when the pain (tonight it's in my legs) feels like a constant, low-level electric shock running through every nerve. It's similar to the feeling I got once when I once touched a tap that was "live" (after I flooded the bathroom!). Naturally I removed my hand fairly smartly. But what do you do about it when it's a pain that lasts for days or weeks, months or years ... and you have no way of physically removing yourself from it?
In my experience, some GPs (even some who are otherwise "simpatico" to ME/CFS/FMS sufferers) are too quick to tell their patients, "Oh, the muscle and joint pain? That's just a part of the condition." To me, pain is never "JUST" anything. However, doctors can be extremely cautious/circumspect about prescribing pain medication. Doctors must comply with government regulations (especially concerning S8 prescriptions) and must be vigilant in maintaining good clinical practice in the use of pain medication (for clinical reasons, as well as legal ones).
So we, as patients, have to be insistent. If you have 50 symptoms, but pain is the number one worst thing you experience ... don't go and tell your GP about the pain in the middle of a list of the 49 other symptoms, or your GP is likely (understandably) to assign pain the same level of importance (in treatment priorities) as all the other 49 symptoms.
When I talk with CFS/FMS sufferers who are suffering severe, intractable pain, I suggest that they go to their GP and ONLY tell them about the pain ... and give examples of how it directly impacts what they can and can't do in daily life. Your GP is not able to observe the effect it has on you on a daily basis, so you have to draw them a picture. They can't "see" your pain. But they will understand it better if they realise how it is affecting your quality of life.
If you feel it will help, get a calm, objective family member to accompany you, so that they can tell the doctor what they have observed about the impact that pain has on your life and your well-being (emotionally as well as practically). This can be especially helpful if they knew you before you became ill, and can tell the doctor how you are now in contrast to how you were when you were well.
I was fortunate enough to have a GP who had known me for many years before I got CFS/FMS, so he could see the difference for himself. I remember, about 6 months into my (effective) pain management, he looked at me thoughtfully and said, "You know what, Kit? You're back! You're really back! This is the Kit that I know and love. It's SO good to see that sparkle and fun in your eyes again". (An emotional moment for both of us. As you can probably tell, my GP and I are very good mates, and I love him dearly!)
So, with your GP, if pain is the number 1 symptom for you, give it the centre stage ... and this will help your GP to understand that it REALLY is a significant problem and requires treatment. Also, bear in mind that treatment options that you try out with your GP will probably follow a fairly systematic progression starting with non-medication options. You will probably have to try out a number of pain management options until you find one that works for you. You should also realise that finding a solution for your pain management is going to take some time. (Believe me, you don't want to start with the "big guns" if you don't have to ... too many side effects.)
Finally, pain "relief" is not the same as pain "absence". You shouldn't expect that any treatment will completely eradicate ALL the pain that you experience. It doesn't work that way. I still have a certain level of pain ... but now I also have a life (and a satisfying, fulfilling one at that)!
I now have a whole strategy for pain management, and medication only forms part of it. This strategy includes:
You'd be surprised how effective the first item, distraction, can be! If I can become "absorbed" in a good book, or talking to a friend on the phone, or doing some email correspondence, or even playing a mindless computer game ... then my mind doesn't have as much ability to "concentrate" on the pain. (I no longer have the same capacity for concentrating on more than one thing that I had before I got CFS/FMS!)
Regarding sudden, very severe, acute pain: I steer clear of medication if I have this kind of pain (though I'll try all the other strategies). This kind of blinding pain, especially if it's not something that I've experienced before, is my body's way of telling me that something is not right. It stands to reason that, if I "smother" it with medication I will have no way of telling if it's getting worse, or if the pain is significant enough for me to consider getting it checked out at Emergency. In the past I've had some events that have required urgent medical attention ... and the only way I knew something was wrong was from the sensation signals I was getting from my body.
The social stigma of some pain medications is certainly a contributory factor to untreated pain and should not be ignored. However, don't let your decision (in consultation with your GP of course) be determined by social "judgements" ("What will people think!?"). Discuss any proposed medication treatment with your doctor and ask as many questions as you need to until you understand what the pros and cons are for this treatment. What are the possible side effects? How can you differentiate between these side effects (if they occur) and the symptoms associated with your CFS/FMS (not always an easy call)? And remind your doctor about ALL the other prescription and over-the-counter medications you're taking, in case there could be interactions.
Another big problem is the subjectivity of pain. You can't measure it, you can't test for it, you can't easily quantify or qualify it. (This is why I suggest that people talk, instead, about the impact that the pain is having on their life.) Doctors may dismiss the "perceived" pain of their patients ... particularly if they have little experience in detecting the difference between "pain relief seeking behaviour" and "drug seeking behaviour". To compound the problem, little is understood (or published) about the safe and effective use of narcotics in the treatment of severe chronic (non-cancer) pain.
Because of all these aspects, it often falls to the patient (or their carer) to "convince" the GP that they are in true need of an effective pain treatment. This is where a knowledgeable support worker can help. If you are a support worker, talk it through with the PWC on the phone; let them "practice" describing their experience of pain and how it affects them. Offer suggestions about how to explain the situation more clearly. An unfortunate but significant factor is that women who are more articulate, and less emotional, than average are more likely to be taken seriously (by some doctors).
Medicine often defines "acceptable" uses of opiates to include only terminal diseases, cancer, etc. And many doctors that I have spoken to about this refer to narcotic pain treatment as the "last resort" mostly only applicable if the patient is approaching death.
I can understand a certain amount of hesitancy. Many of these medicines have the potential of resulting in addiction - though this rarely occurs in true cases of severe chronic pain, according to the recent research. The reason for this became very clear from my own experience: If you take morphine for severe chronic pain, the medication has so much "work" to do in lessening the pain that you don't get a "buzz", or "euphoria", or "bliss", or anything like that. All you get is somewhere back toward "normal"! This is why dosage is so important. Work with your doctor to determine the lowest effective dose of pain medication and review this dosage regularly. In my experience, once the pain is under control, the required dose decreases over time.
My doctor commented that, if I started on the pain management strategy that we were considering, it was quite probable that I would become physiologically dependent on the pain medication. This is quite different from addiction, and is something that I was prepared for. To make both my doctor and myself comfortable with my pain control treatment trial, we made a deal: if I developed a tolerance to the medication (i.e. I kept asking for higher and higher doses), he promised to assist me in getting off the medication using a controlled withdrawal strategy. This was my condition for embarking on the trial.
Use of many of these medications will result in physiological dependence (the body comes to rely on the medications to function normally). And, in my experience, withdrawal from the medication (which I have recently done voluntarily, having found a more effective, non narcotic medication combination) can be very unpleasant - even without addiction. You may want to discuss this process in detail with your doctor before you decide which options you are willing to explore.
In line with current research, my required dosage actually decreased continually. The theory is that constant pain is self-perpetuating. Nerve cells (pain receptor cells) are dealing with a continual flow of pain information. They, in turn, recruit nearby nerve cells to adapt their function to become pain receptors, and so more pain messages are sent through. Once my pain was treated effectively, many of these nerve cells got out of the habit of pain reception, and so my need for medication decreased.
This is one of the reasons why constant, low level sustained release medication is a better solution than only taking something when the pain reaches an intolerable level. If you do that, the body seems to begin to generate messages for this high "intolerable" level of pain quicker and more often - since that is the "trigger" (cause) for pain relief (i.e. you finally take a codeine). So, in the long run (and in my experience) this kind of sporadic treatment is more likely to perpetuate severe pain, than relieve it.
It wasn't until after I experienced (for the first time in years) my first pain free day, that I truly comprehended the severity of the pain that I had been struggling to co-exist with. I can now acknowledge (without any self-congratulation) that I'm a very, very brave and stoic woman. But this trait was also a problem, because I didn't really give my doctor enough information/description at the outset for him to realise the severity of the pain I was suffering.
My hope for those of you who are suffering chronic, severe pain is that you will also be able to find a caring and compassionate doctor who will work with you until you find an effective pain management strategy. I know that this is an achievable goal and I hope that, in sharing my experience with you, that you can find the courage to persevere until you succeed.
Note: Kit is referring to a report on chronic pain by the ABC's science program Quantum in October 2000 which featured research being done at the Sydney's Royal North Shore Hospital. The researchers were looking at nerve injury, and the mechanisms by which pain can become chronic. The report warned, "if severe pain is not treated effectively, the result can be lasting damage to the nervous system."
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