Pain without explanation? A guide to finding out why it hurts

You can find the video after the text

A Swedish study published in 2010 showed that half of those who had chronic pain had no got an explanation for why it hurt.(1) I think it is like this in most countries. This Video will be about that and what you can do if you have chronic pain and want to find out the reason why it hurts.

My name is Andreas Persson and I am a physiotherapist and specialist in pain and pain rehabilitation.

Between 20 and 50% of all adults suffer from chronic pain.(1-3) Chronic pain means that you have been in pain for at least three months. It can be pain that comes and goes and it can be pain that is there all the time. It can be pain in a specific small area of the body and it can be pain in large parts of the body.

That only half of those with long-term pain have been diagnosed is bad enough. But I think it’s worse than that. Many of those who have received an explanation has received an incorrect explanation. This shows that health care in general has failed to help people with chronic pain. It is under these conditions that I have made this video. It is aimed at people who have been in pain for more than three months and have not received an acceptable explanation for the pain.

I would like to stick my neck out and say that the reason so many people do not have got an explanation for their pain is that they have not been examined by a skilled and updated doctor and/or physiotherapist with the skills to make a pain analysis But it should be said that there are pain conditions that with today’s knowledge it is not possible to find out the cause. But I think it is about 1% of those affected that this is the case, which is very far from the 50% who do not receive any explanation at present. This means that the vast majority who have not received an acceptable explanation and diagnosis could get it if they are examined by someone with the right skills.

But why is an explanation so important? An explanation is important to be able to understand what is happening in the body and how the condition will develop over time. Whether it will disappear or not, as well as what treatments will help. If the affected has not received an acceptable explanation, it means that the person and the care staff do not know what the cause is. This leads to anxiety and uncertainty. What if it’s cancer, what if it’s a serious neurological disease. Will it only get worse and worse? Will I be able to work? Not having an explanation for the pain increases the suffering and ruins the ability to live a meaningful and productive life.(4-6)

It is also important to get a useful diagnosis that is related to the explanation. A diagnosis that describes an injury or a disease is helpful when seeking more information about the condition.

Research studies on various pain conditions usually investigate larger groups with people who have similar injuries or diseases. Often the diagnosis and the diagnostic criteria are what determine who is included in a study. You lump together people with for example Tennis elbow to study what causes the condition, what physiological changes are present in the muscle and muscle tendons. You look at how it develops over time, that is how long does it take before the condition disappears, and you look at which treatments make the condition go away faster. Based on the results of this type of research study, one can then draw different conclusions about the disease or injury. Conclusions about what it depends on, how it develops over time and what treatments help. These conclusions apply not only to those who participated in the study but also to others with similar conditions, that is those who have the same diagnosis.

If you get an acceptable diagnosis that says something about the pain, both the affected and the healthcare professionals can use it to seek information about the condition. Information that can help find out what it is caused by, how it will develop over time, and which treatments will help. There are often medical programs for different diagnoses. Programs based on research on the injury or disease, which provides information on how to manage and treat it. If you have not received an acceptable diagnosis, you will not have access to that information.

In addition to those who do not receive an explanation for their pain condition, many receive an incorrect explanation. Often an explanation based on what was thought chronic pain was caused by 20-30 years ago or an explanation based on myths for which there has never been any evidence. Examples of common explanations that are in most cases incorrect are:

The pain is caused by:

  • Tense or stiff muscles
  • Weak muscles
  • Bad posture
  • Poor movement pattern
  • Obesity
  • Stress
  • Depression
  • Being sad
  • Anxiety
  • Social problems

These are explanations that are often used in ordinary health care. In addition to these, there are other incorrect explanations used by for example Chiropractors, Naprapaths, Massage Therapists, and Other Alternative Therapists. Some common explanations that are in most cases incorrect are:

The pain is due to:

  • A vertebra is located incorrect and needs to be adjusted
  • The pelvis is not straight and needs to be adjusted
  • Something is constricting a nerve in the back and space needs to be created through manipulation
  • Dysfunction occurs in the back or neck that need to be adjusted
  • The muscles are tense and stiff and need to be relaxed
  • The pain is due to eating the wrong diet. You need supplements that I sell.

As you can see, the alternative explanations of alternative therapists are usually related to a treatment they perform for a fee or a product they sell. I do not think that healthcare professionals or alternative therapists deliberately try to deceive those who are affected but provide explanations that they genuinely believe in, even if there is no good scientific basis for them. This is not to say that the treatments given by these therapists need to be ineffective. Many of the treatments given both in healthcare and by alternative therapists can help people with chronic pain, but often not for the reasons stated.

How do you proceed if you have chronic pain and have not received an acceptable explanation? There are a few different steps you need to go through. If you have not previously sought help for your pain condition in healthcare, it is important to start from the beginning and go through the various steps in the order in which they are stated. If you have gone through several of the steps listed but not all, it is important to go through the steps that have not been performed.

Step 1. If the pain is in the joints or muscles, make an appointment with a physiotherapist at the health center to examine your pain condition. If it is a headache, abdominal- or genital pain go straight to step two and make an appointment with a doctor.

The physiotherapist will first interview you and then do a physical examination. You will usually receive an explanation and suggestions on what you can do to treat the condition, or you will get some type of treatment that the physiotherapist performs. Although it is common for the physiotherapist to give one of the incorrect explanations mentioned before, the advice and treatments given are often helpful. If the physiotherapist thinks that you also need to see a doctor, you should do so. The same applies if the pain condition does not improve after a few weeks of treatment or if it gradually gets worse. Then the next step is a doctor’s visit.

Step 2. Examination by a doctor at the health center. The doctor often does a short interview and then a short examination. In addition, a standard package of lab tests is usually done to see if anything deviates, which indicates that you have a deficiency or disease that causes the pain. For example, the samples may show elevated levels of inflammatory markers that may indicate an infection or a rheumatic disease. This step is important and should not be skipped. Sometimes some type of imaging is also included, such as MRI-examination. If something in the examination or samples is deviating, the affected may need to be examined further at a specialist clinic.

Step 3. If the examination by the physiotherapist or doctor and the samples you have taken give suspicion of a certain type of illness or injury, you can be referred to a specialist. It can for example be a rheumatology clinic if a rheumatic disease is suspected, or a neurology clinic if a neurological disease or injury is suspected. If you do not find any cause for the pain at the specialist clinic or if the doctor does not believe that there is a suspicion of illness or injury being investigated and treated at the specialist clinic and you still have not received an acceptable diagnosis and explanation, The next step is a referral to a specialized pain clinic for the investigation of chronic pain.

Step 4. If you still have not received an acceptable explanation and one of the following alternatives is correct, the healthcare system has failed in the investigation of your pain condition:

• The pain clinic rejects the referral for investigation

• The waiting time for an investigation at the pain clinic is over three months

• The doctor at the health center does not want to refer you to the pain clinic

• You were investigated at the pain clinic but did not receive an acceptable explanation.

When healthcare fails, you need to become more active in the investigation of your pain. We will now go through how chronic pain works and how you can find out for yourself what the pain is caused by. What you come up with should then preferably be validated in healthcare.

We will first look at the three different types of chronic pain that exist. (7) Knowing what type your pain belongs to is a good step on the way to knowing the cause of the pain.

The first type is called inflammatory pain. Sometimes the type of pain is also called nociceptive pain. The pain is usually caused by an injury. The injury can be found in a muscle or muscle tendon, in a joint, in the skeleton, or any other tissue. The damage is due to the tissue being overloaded. It may have happened in a traumatic event such as a car accident or a fall. For example, if you fell and broke your wrist. 

The damaged tissue can also have been overloaded by an activity that has been performed for a long time, such as. If you paint the house for 7 hours straight and overload and injure a muscle in the arm. Another way an injury can occur is by repeatedly loading for example muscles and joints without getting enough recovery time between loading. For example, if you have a job where you perform similar tasks every day that load the same parts of the body in combination with the time between work shifts being too short for the loaded body parts to have time to recover.

The reason why this type of pain is called inflammatory is that the injury causes inflammation. The inflammation and the inflammatory molecules released in the damaged tissue make the pain receptors and nerve fibers more sensitive, which in turn causes pain. Overloading of the body occurs more easily as you get older as the body’s resilience and strength deteriorate. This already starts to happen from the age of 25 and becomes more noticeable the older you get. In an elderly person, the strength of the body’s tissues can be so low that even certain everyday activities can lead to injury. If you stop overloading the damaged tissue, the injury usually heals, which leads to the pain disappearing. Although it sounds illogical to add more strain to this type of pain, properly dosed exercise often helps the damaged tissue to heal and become stronger.

Healing of the injury usually takes place within a few months, which also means that the inflammation and pain disappear. However, if you continue to load the damaged tissue over its capacity, the damage does not heal completely and the pain continues. Inflammatory pain also occurs if you have a rheumatic disease such as. Rheumatoid arthritis where the immune system attacks the body tissues and thus creates damage and inflammation

The second type of pain is neuropathic pain. Neuropathic pain is created as a result of nerve damage. Nerve damage can be caused by pressure or pull on a nerve or due to an illness. Neuropathic pain occurs mainly as a result of the nerve fibers being damaged. When the nerve gets injured, it sometimes starts sending pain signals spontaneously. If you move in a way that pulls or presses on the damaged nerve, it hurts more. Common causes of nerve damage and neuropathic pain are disc herniation in the back or neck which causes pressure damage to a nerve and diseases that cause chemical changes around nerves and thus damage them such as. In diabetes.

Typical with neuropathic pain is that the symptoms follow certain patterns that are easy for a trained doctor or physiotherapist to recognize. In the event of an injury to a nerve in the back, for example as a result of a herniated disc, in addition to pain nerves, other sensory and muscle nerves are almost always damaged. This means that in neuropathic pain you often also have reduced sensation and reduced strength in some muscles. Here is an example of a typical pattern for a person who has had a herniated disc in the lumbar spine and suffered an injury to the S1 nerve on the right side. The affected has pain in the back and also in the leg somewhere in the marked area. In addition, he has reduced sensation somewhere in the marked area and reduced strength in the ability to stand on his toes.

Chemical injuries due to, for example, diabetes, alcohol, chemotherapy in cancer treatment, or sometimes for unknown reasons are usually called polyneuropathy, which means that you have damage to many nerves. (8) This type of nerve pain and nerve damage also follows a specific pattern. But the patterns are different compared to if you damaged a specific nerve. Here are examples of where it often hurts. It often hurts more in the arms and hands and legs and feet. Most often you also have reduced sensation in the painful areas.

The third type of pain is called nociplastic pain.(9) This is the most common type of pain in those who have not received any explanation for chronic pain. The pain is caused by changes in the pain control system which makes it more sensitive. With this type of pain, you can often not find any damage that corresponds to the intensity of the pain. Sometimes you have had an injury that normally heals in a few months in the area. But when the pain persists for several years even though the injury has been allowed to heal, it is probably nociplastic pain that causes the pain. Nociplastic pain is more common over a larger area and more areas than the other types of pain. But it can also be found in just one local area. A common variant of extensive nociplastic pain is fibromyalgia. In fibromyalgia, the pain is present in large parts of the body. Most people with fibromyalgia also have poor sleep quality and problems with fatigue.

As with neuropathic pain, those with nociplastic pain often have numbness and decreased sensation and muscle strength in different parts of the body. In nociplastic pain, however, neither the extent of pain nor the reduced sensation and strength follow the patterns typical of neuropathic pain. Other symptoms that are often associated with nociplastic pain besides those mentioned, poor sleep, fatigue, impaired feeling and decreased muscle strength, are impaired memory and concentration, a sensation of fever after physical activity, and sensitivity to other sensory impressions such as bright light, loud noises, and strong scents.

Other terms used in the past and to some extent still, that means roughly the same thing as nociplastic pain are: central sensitization, sensitization, and centrally disturbed pain modulation.

Do you find that your symptoms seem to belong more to any of these categories? We will now go through a table with information about what is typical of the different types of pain and what distinguishes them. The table is on my website. You can use it when analyzing your pain condition. It can be a good idea to underline what is true to you in the table. The type of pain you have is probably the category with the most underlined clues. Then we will also look at some typical pain drawings for the different types of pain. The description text also includes a link to a pain chart you can print out and fill in any areas you have had pain in the past month.

Let’s look at the table. There is a column for each type of pain and we will go through different types of clues line by line. We start with history. In inflammatory pain, you usually have an injury that has not healed, which means that you have overloaded the body in some way, there may also be age-related changes, often in the form of osteoarthritis, there can be some type of rheumatic disease. In neuropathic pain, there is sometimes information about that you have damaged a nerve or have a neurological disease. With nociplastic pain, you often, but not always, have close relatives with similar pain problems. The pain often debuted in connection with a stressful period, a period of poor sleep, or an injury that should now have healed.

On the next line, with inflammatory pain, it is common with increased pain during the time and after loading the body part that hurts. This is also the case with neuropathic pain. But with neuropathic pain, there is usually also a feeling of numbness in some areas and sometimes also weakness in some movement. In nociplastic pain, it is also common with increased pain during and after loading, but it is also common with pain at rest, even when the painful part of the body has not been loaded.

On the next line, other symptoms, in the case of nociplastic pain, there are often also problems with difficulty sleeping, fatigue, and impaired concentration and memory.

The extent of the pain, that is, the areas that hurt, is usually relatively small in inflammatory pain, except in rheumatic disease where one can have pain in many different joints according to specific patterns. In neuropathic pain, the pain is located in a specific area to which the injured nerve is connected. Doctors and physiotherapists have specific maps to be able to determine which nerve is damaged with where it hurts in neuropathic pain. Most often, there is also a feeling of numbness (that is sensory loss) in the same or nearby area. And with nociplastic pain, the pain area is usually larger than with the other types of pain and you usually have pain in more areas of the body.

The next row for signs that are normally assessed by licensed healthcare professionals, in inflammatory pain there is often redness, swelling, heat and sometimes also bleeding, that is a hematoma in the painful area, especially in the immediate time after the injury. In neuropathic pain, there is often weakness in a specific movement and loss of sensation. In nociplastic pain, there is tenderness when touching over a large area and often also impaired sensation (that is numbness) that does not follow the patterns that exist in neuropathic pain.

The next row describes the effects of paracetamol or ibuprofen or similar anti-inflammatory drugs taken at the full recommended dose for three days. This is something you can try. However, you must tolerate these medications. If you are not sure, talk to your doctor. In inflammatory pain, you often experience a clear reduction in pain. In neuropathic pain, there is often no clear effect, nor in nociplastic pain.

The next row describes the effect of the TENS treatment method and the next line is acupuncture. Testing these treatments to get more information about the cause of the pain is not a must, but can be a good addition to get extra clues, especially if the other clues in the table do not point to one of the specific types of pain. In TENS treatment, those with inflammatory pain usually experience reduced pain or no effect at all. Those with neuropathic pain usually experience the same thing, reduced pain or no effect. In nociplastic pain, on the other hand, some experience deterioration. If you get increased pain from TENS, it thus indicates that you have nociplastic pain.

The next row, which describes the effect of acupuncture, describes the same thing as in TENS. What distinguishes the different types of pain is that you can get increased pain if you have nociplastic pain.

As stated in the table, the extent of the location of the pain differs between the different types of pain. After the video, it can be a good idea to fill in your pain drawing. A link to a pain drawing can be found in the description text for the video.

Here are some typical examples of pain drawings for the different types of pain.

Here we see pictures with inflammatory pain. As you can see in the first picture with marked pain on the arm, it is a relatively small area. Also in the second picture with local pain in the knee. And in the third picture with pain in several different joints, indicates that the person in question has a rheumatic disease.

Here we see two examples of neuropathic pain. In the first picture, the pain follows a certain pattern that shows that the pain is neuropathic and is caused by damage to the nerve root in the lumbar spine on the right side called S1. The second pain drawing Indicates a pain condition that seems to be due to polyneuropathy, that is pain due to damage to many small nerves.

And here we see examples of pain drawings that suggest nociplastic pain, that is pain due to the pain system have become more sensitive. In the first picture, the pain is located in the neck and shoulder area and the left upper arm. As you can see, the pain is located over a relatively large area, which is typical of this type of pain. The second image shows even more widespread pain and the third image shows pain throughout the body. This is a person who most likely has quite severe fibromyalgia.

Now that you have looked at the table, and filled in the pain chart, which type of pain do you think you have? I will now mention what you can do to move forward in your investigation of the pain.

If your pain condition seems to be inflammatory, you need to book a new visit to a physiotherapist. Bring the table and the pain drawing. A skilled physiotherapist can often locate which tissue has been damaged and advise on how you can make the injury heal. If you have received one of the usually incorrect explanations that I mentioned before, you should refer to the table that shows that it is probably inflammatory pain. If you feel that the physiotherapist is unable to help you, it may be a good idea to try to see another physiotherapist.

It can also be a good idea to ask the physiotherapist directly if there is a risk that you have a rheumatic disease. If there is a suspicion of rheumatic disease, you should see a doctor again and possibly also be referred to a rheumatology clinic. For those of you who have been to a rheumatology clinic before and have not received an acceptable diagnosis, it can often be worth a new visit if some years have passed and the symptoms have worsened. Sometimes rheumatic diseases can develop slowly, which means that it is not initially detectable by the examinations and samples. If you have a rheumatic disease, however, it usually becomes more clear over time both in the clinical examination and the various lab samples.

If your pain condition appears to be neuropathic. Then you need to book an appointment with a physiotherapist to get it confirmed. Take the table and the pain drawing with you with the result that indicates that you have neuropathic pain. If the physiotherapist thinks that you also need to see a doctor, it is usually a good idea to do so. Even if you have already seen a physiotherapist and doctor for the pain condition at this stage, it is a good idea to do it again with the more specific question of whether your pain condition is neuropathic. If you do not feel you get the help you need, try another physiotherapist or doctor. Sometimes, at this stage, additional examinations may be needed, such as MRI and nerve conduction tests. 

If your pain condition seems to be nociplastic. Then there is a high probability that you have nociplastic pain. This type of pain is very common and there is a lack of knowledge about it in healthcare. A large proportion of those who have nociplastic pain has fibromyalgia. Fibromyalgia occurs in about 3-5% of all adults.(10-12) Probably only about a third of all those who have fibromyalgia have been diagnosed with the associated explanation for the pain condition and the other associated symptoms.(1,4,10,13) You can test yourself if you meet the updated diagnostic criteria from 2016.(14) I have made a short video on how to do that. On my website, you can find the form with the diagnostic criteria that you can use and calculate if you meet the criteria. Link to the video and the form can be found in the description text for this video.

I have also made a short video about the nine most common symptoms of fibromyalgia. Watch the video to see if you recognize the symptoms in yourself.

Although it is the updated diagnostic criteria from 2016 that are recommended for clinical use, the criteria from 1990 are often still used.(14,15, 16) The criteria from 1990 also include tests of 18 pressure points in the body.(16) If you, your doctor, or your physiotherapist want you to test you according to the criteria from 1990, I have also made a short video about that that can be helpful for you, but also for the doctor or physiotherapist, if they are not used to testing the various pressure points.

If you meet the criteria from 2016, you must bring the completed form to your doctor or physiotherapist to have it scanned into your medical record and to have the diagnosis confirmed. If the doctor or physiotherapist says that they do not believe the diagnosis exists, you should switch to another doctor or physiotherapist. The person in question has too little competence to be able to help you with your pain condition. If they do not think you have fibromyalgia even though you meet the criteria, they should have good arguments for that.

But just because you have nociplastic pain, you do not need to have fibromyalgia. Even a local pain condition can be due to this type of pain. Nociplastic pain is a common cause of local pain when no injury is found that causes the pain. Or where the pain is more pronounced than one might expect with a small injury, mild osteoarthritis, or some other mild pathological abnormality. Common areas of local nociplastic pain are the head, the neck, the jaws, the shoulders, the shoulder blades, the forearms, the hands, the chest, the thoracic spine, the lumbar spine, the abdomen, the genitals, yes I will not continue because I think you understand where I am going. Nociplastic pain can be the cause of pain in any area of the body. The typical thing about nociplastic pain is that it is not possible to find any injury that is the probable cause of the pain.

In this video, I do not intend to go into appropriate treatments for various long-term pain conditions. But if you have nociplastic pain, but not fibromyalgia, it is often a good idea to look at the recommended treatments available for fibromyalgia. Treatments and management strategies for fibromyalgia often also help with other nociplastic pain conditions. Check out my videos on different types of physical exercise and other treatments for fibromyalgia and long-term pain.

If the video helped you press the like button. If you know someone else with chronic pain who has not received an explanation, tell the person about the video. Also, check out my youtube channel and some of my other videos about chronic pain.

References

1. Jakobsson U. The epidemiology of chronic pain in a general population: results of a survey in southern Sweden. Scand J Rheumatol. 2010;39(5):421-9. 

2. Fayaz A, Croft P, Langford RM, Donaldson LJ, Jones GT. Prevalence of chronic pain in the UK: a systematic review and meta-analysis of population studies. BMJ Open. 2016;6(6):e010364.

3. Dahlhamer J, Lucas J, Zelaya C, Nahin R, Mackey S, DeBar L, et al. Prevalence of Chronic Pain and High-Impact Chronic Pain Among Adults — United States, 2016. MMWR Morb Mortal Wkly Rep. 2018;67(36):1001-6. 

4. White KP, Nielson WR, Harth M, Ostbye T, Speechley M. Does the label ”fibromyalgia” alter health status, function, and health service utilization? A prospective, within-group comparison in a community cohort of adults with chronic widespread pain.Arthritis Rheum. 2002;47(3):260-5. 

5. Lamotte M, Maugars Y, Le Lay K, Taïeb C. Health economic evaluation of outpatient management of fibromyalgia patients and the costs avoided by diagnosing fibromyalgia in France. Clin Exp Rheumatol. 2010;28(6 supple 63):64-70. 

6. Hughes G, Martinez C, Myon E, Taïeb C, Wessely S. The impact of a diagnosis of fibromyalgia on health care resource use by primary care patients in the UK: An observational study based on clinical practice. Arthritis Rheum. 2006;54(1):177-83. 

7. Woolf CJ. Pain: moving from symptom control toward mechanism-specific pharmacologic management. Ann Intern Med. 2004;140(6):441-51. 

8. Sommer C, Geber C, Young P, Forst R, Birklein F, Schoser B. Polyneuropathies. Dtsch Arztebl Int. 2018;115(6):83-9. 

9. Kosek E, Cohen M, Baron R, Gebhart GF, Mico JA, Rice ASC, et al. Do We Need a Third Mechanistic Descriptor for Chronic Pain States? Pain. 2016;157(7):1382-6. 

10. Häuser W, Brähler E, Ablin J, Wolfe F. 2016 modified American College of Rheumatology fibromyalgia criteria, ACTTION-APS Pain Taxonomy criteria and the prevalence of fibromyalgia. Arthritis Care Res (Hoboken). 2020; apr 5. 

11. Jones GT, Atzeni F, Beasley M, Flüß E, Sarzi‐Puttini P, Macfarlane GJ. The Prevalence of Fibromyalgia in the General Population: A Comparison of the American College of Rheumatology 1990, 2010, and Modified 2010 Classification Criteria. Arthritis Rheumatol. 2015;67(2):568-75.

12. Queiroz LP. Worldwide epidemiology of fibromyalgia. Curr Pain Headache Rep. 2013;17(8):356. 

13. Vincent A, Lahr BD, Wolfe F, Clauw DJ, Whipple MO, Oh TH, et al. Prevalence of Fibromyalgia: A Population-Based Study in Olmsted County, Minnesota, Utilizing the Rochester Epidemiology Project: Estimation of the Prevalence of FM in a Defined Population. Arthritis Care Res (Hoboken). 2013;65(5):786-92. 

14.Wolfe F, Clauw DJ, Fitzcharles MA, Goldenberg DL, Häuser W, Katz RL, et al. 2016 Revisions to the 2010/2011 fibromyalgia diagnostic criteria. Semin Arthritis Rheum. 2016;46(3):319-29

15. Wolfe F. Stop using the American College of Rheumatology criteria in the clinic. J Rheumatol. 2003;30(8):1671-2. 

16. Wolfe F, Smythe HA, Yunus MB, Bennett RM, Bombardier C, Goldenberg DL, et al. The American College of Rheumatology 1990 Criteria for the Classification of Fibromyalgia. Report of the Multicenter Criteria Committee. Arthritis Rheum. 1990;33(2):160-72. 

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