Healthcare has a lot to learn from people with long-term pain
RA is a disease that can create long-term pain. At the Pain Rehabilitation department at Danderyds Hospital in Stockholm, Monika Löfgren conducts research from the patient's perspective. One conclusion is that the health care profession needs to increase its understanding of pain.
Monika Löfgren researches long-term pain and rehabilitation and is the section manager at the Rehabilitation Medical University Clinic at Danderyds Hospital in Stockholm. She saw early on in her research that patients have a lot to learn about managing life with long-term pain.
- What particularly interested me was the patient's perspective, says Monika Löfgren. I used qualitative research methods to find out what it looked like from the patients' point of view. It was very interesting and became the entry into my research. Patients have so much valuable knowledge that we researchers have no idea about.
Patients who come to Pain Rehabilitation are part of a team, assisted by various professionals such as occupational therapists, counselors, physicians, medical care administrators, psychologists, physical therapists and nurses. Those who come to pain rehabilitation have long-lasting pain that affects their entire life situation including work life, family, finances, how they move and how they feel mentally.
Long-term pain is pain that persists after three to six months, which is the time it usually takes for an injury to heal. The pain does not have to be constant for it to be called chronic. The term chronic pain can be misleading because it may sound like it hurts your whole life, but it doesn't have to be like that. Long-term pain can be treated, both with certain drugs and other measures. It may not be completely eliminated, but it can be relieved.
Examples of diseases and conditions that can cause long-term joint pain (RA), osteoarthritis, hypermobility, endometriosis, nerve damage, multiple sclerosis (MS), fibromyalgia, headache, muscle pain and back pain. (1)
- Today we know that a lot happens in terms of pain in the central and peripheral nervous system and in the tissues, says Monika Löfgren. We do not yet know why some people suffer from long-term pain while others do not, even if they have the same problem. It may be partially explained by our genes, it can also be about stress and experiences earlier in life. This is where research is going on today.
Pain is an experience in the brain that has its basis in that our pain pathways make signals which reach the brain. We can hurt ourselves without our body noticing it, just as we can feel pain without having hurt ourselves. It depends on what happens in the nervous system.
Pain can also be linked, for example, to mental pain, such as when we lose someone and feel grief. It also hurts a lot and can affect us physically. Our emotional life and nervous system are interconnected and affect our experiences of different things in our bodies.
Young people with long-term pain are especially vulnerable in care
In a study that examined patients at the age of 20, Monika Löfgren and her colleagues discovered that young people are particularly vulnerable in health care. Most patients with long-term pain have a very hard time and feel that they are constantly poorly treated, neglected and their pain is explained away. The young people described how they felt they were seen as troublesome patients and that the carers wanted to get rid of them. They described that it felt as if no one thought they could be in pain because they were "young and healthy".
- There are many people in the healthcare sector who do not know enough about long-term pain to be able to provide good treatment and the right care, says Monika Löfgren. The conclusions I draw from most of the studies we have done are that the level of knowledge available in the care of pain is generally low. It is a low priority area, even though it is one of our biggest diseases.
The importance of a professional approach
The recurring problem that is highlighted in research studies into long-term pain is that as an individual one is not seen, understood and believed enough. Pain is in some way existential and affects us totally as people.
- We need to take our responsibility as health care professionals and start seeing these people and understand that they have severe suffering, says Monika Löfgren. Healthcare is not currently designed for good meetings with our patients. We need to educate ourselves more about what exactly long-term pain is and pay attention to how common it is.
Monika Löfgren emphasizes that it is important that the person seeking care can meet professional people who understand what you are suffering from so you can get an explanation for the pain. We can't always explain the cause, but we know more about what happens when you are in pain and why it doesn't happen. It is also good to have the opportunity to meet other people in the same situation. A safe place where you can share your experiences with people who have passed the difficulty and moved on.
The whole feeling is important
It is important to know what you think you need. It may be a good idea to talk to someone who is knowledgeable in the area of pain: a physiotherapist, doctor or nurse, so that together you can enjoy what you need. How you feel as a whole is important and taking care of it is extra important in the case of prolonged pain. It is important to exercise, eat well, sleep and try to maintain your social life. Unfortunately, it is easy to just pull down on the fun when you feel ill, so that life consists of more than just "the essentials".
Physical activity helps the body cope with pain
Trying to get started with physical activity is also important to make everyday life better again. Learning strategies for thinking and doing in new ways.
- We know physical activity is important for the management of pain, says Monika Löfgren. If you have worse strength and fitness then the pain sensors are activated faster than if you’re in better shape. If you exercise regularly, there will simply be less pain-increasing substances wherever the pain is triggered. Unfortunately, physical activity is a perishable commodity. It must be maintained.
Heavyweight training with individual adaptation
In a large research project, we at Karolinska Institutet together with the universities of Linköping and Gothenburg investigated heavy strength training for people with fibromyalgia. The study looked at function, pain thresholds and pain inhibition. In the survey, most people seemed to get much better after strength training. Physiotherapists were always involved in helping to adapt the training to how the person was feeling, such as in terms of pain and fatigue.
- This support proved to be important, says Monika Löfgren. After the study when the support ceased, we saw that many people stopped exercising. It is difficult when you have long-term pain to work out at such a demanding level without having the support of someone who has knowledge of long-term pain and exercise.
Learning to deal with pain when it comes
The longer a person has pain, the more sensitive the person becomes to the pain stimuli. On the other hand, many testify that they are mentally learning to cope with pain. People describe that they can handle the pain that they never thought they could manage. They have found good strategies and accepted to their situation, that this is something I will live with for a while and it will not be forever. I can't wait for life until the pain has passed, but I have to find ways to do things here and now, even though I'm in pain.
- With long-term pain, it takes both time and effort to feel better. Everyone has to find their own way, says Monika Löfgren. The first thing to remember is that the pain is not dangerous. Although we can understand intellectually that pain is not dangerous even though it is very unpleasant, it still takes a long time to internalize that information. It is important to accept that it is like this right now. What the future carries, we do not know. But what can I do right now, in the situation I am in here and now?
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