What Is Idiopathic Pain and How to Manage It
Idiopathic pain is long-term pain, lasting for more than 6 months, that has no obvious or detectable physical or organic cause.
The term itself is derived from the Greek: "idios" meaning one's own, and "pathos," or suffering.
Pain may be idiopathic, with an unknown origin, from the outset. Or pain may become idiopathic over time—for example, pain than remains long after an injury has fully healed, with no remaining tissue or nerve damage detected.
There are several diseases that are idiopathic in some sufferers, but have an obvious cause in other cases. Pain triggers do vary among patients. Treatments that work for some idiopathic pain patients, don't work at all for others.[1,3,4]
Dr. Gregory House noted that idiopathic pain makes doctors look like "idiots," because they can't reach a diagnosis and treatment.
Idiopathic pain is incredibly frustrating for both the sufferer and the doctors. The experience may be characterized by:
- Never-ending tests - A multitude of tests are made, yet none give any idea of a cause or appropriate treatment.
- Change in treatments - Treatments that did give some relief, may stop working with no logical reason.
- Disappearing symptoms - Even if the idiopathic pain condition disappears, the doctors (and patient) have no idea if it may return.
There are many things that you can do and try to help reduce your idiopathic pain.
Has a doctor ever said your pain was imagined or 'all in your head'?
In this article, I will cover:
- What causes idiopathic pain
- Illnesses that are idiopathic
- Conditions that are NOT idiopathic
- Medications to help you manage
- Lifestyle modifications
- Physical therapies
- Alternative therapies
Disclaimer: I am not a doctor, but I do have more than 20 years of experience with both idiopathic pain (fibromyalgia), and pain caused by a number of illnesses and nerve damage. I currently battle, and sometimes win against sciatica, costochondritis, Moreton's neuromas, migraines, cystitis, endometriosis, adenomyosis, sinusitis, IBS, TMJD, and more.
So what actually causes idiopathic pain?
No one knows!
Doctors still don't understand how pain works. The areas of the brain that are responsible for processing pain have been mapped, but the mechanism is still a mystery.
It's difficult to get approval for human experimentation when pain (or the brain) is involved, so progress in this area of medicine is slow. The brain may well be the final frontier in scientific research.
Not in my head!
A lot of pain remained after my extremely severe endometriosis was removed in three operations, but the surgeon told me it was idiopathic and imaginary - I was making up the pain.
Not happy with this diagnosis, I saw another surgeon who discovered severe adenomyosis via laparoscopy and biopsy. So much for it being "all in my head"!
Idiopathic or obscure?
Doctors are only human, they do not know everything.
A good doctor will seek other opinions, make different tests, and recommend different treatments during their search for the cause of your idiopathic pain.
A bad doctor will call you a hypochondriac, say you are making up the pain, that it is "all in your head." Find a new doctor if you are ever treated like this!
There are pain causing diseases and conditions that are not widely known (obscure). There are other diseases that are not understood (idiopathic), such as fibromyalgia and myalgic encephalomyelitis (chronic fatigue syndrome).
Idiopathic pain conditions
The following conditions and illnesses can be idiopathic - they have no physical detectable cause, symptoms and successful treatments vary among cases.
- Fibromyalgia syndrome (FMS) - widespread pain, fatigue and cognitive problems
- Ice-pick headaches - pain in the nerves of the eyes
- Fluid pressure in the brain - headaches, dizziness and loss of vision
- Interstitial cystitis (IC) - urinary tract and bladder pain
- Interstitial pulmonary fibrosis (IPF) - chest pain, cough, and lack of breath
- Irritable bowel syndrome (IBS) - digestion pain
- Multiple sclerosis (MS) - pain, fatigue, tremor, and more
- Peripheral neuropathy - numbness, tingling and pain in the nerves, not caused by any damage or compression of the nerves
- Persistent idiopathic facial pain (PIFP) - stabbing or burning pain in the face with no obvious nerve or tissue damage
- Temporo-mandibular joint disorder (TMJD) - jaw pain and headaches
- Vulvodynia - pelvic pain in women with no obvious nerve, hormone, chemical, infection, or soft tissue cause
These are NOT idiopathic pain
If you have the following conditions, you do not have idiopathic pain, even though the underlying conditions may be idiopathic:
The search for the cause of idiopathic pain
Genome-sequencing companies and research groups, such as Scripps and Cypher Genomics, are encouraging patients with idiopathic pain and diseases to submit samples in an effort to find common elements among sufferers.
- an injury or inflammation causing pain
- compressed or malfunctioning nerves causing pain, numbness or tingling (neuromas or a stroke-damaged central nervous system)
- a bacterial, viral or fungal infection causing fever and pain
- an obvious chemical or hormonal imbalance that can be detected with a blood test, such as in many auto-immune diseases
- period pain caused by endometriosis, adenomyosis, fibroids or cysts
- headaches and migraines caused by tension or constricted blood vessels
- back pain caused by inflammation, nerve compression, soft tissue or bone damage
- post operative pain caused by irreversible nerve and soft-tissue damage or inflammation
Idiopathic pain is also not caused solely by depression, although these two illnesses often occur together.
Therefore many idiopathic pain patients do benefit from depression treatment.
Treating idiopathic pain
Treatment for idiopathic pain uses many different approaches. A combination of approaches and treatments are often recommended.[1,2]
- pain medication
- psychological treatment and pain-management classes
- physical therapies
The aim is not to cure the idiopathic pain, but to improve the quality of life and reduce pain levels so the sufferer as can get on with living.
Medications to manage idiopathic pain
Patients are often encouraged to trial different types of medications to find the most simple and effective treatment, with the fewest side-effects. However, effectiveness may change in different situations and over time.
Your doctor may prescribe any of the following medications according to the severity and type of your pain. However, idiopathic pain may not respond to many of them.[3,4]
- Basic pain medications - paracetamol (acetominophen), aspirin and ibuprofen.
- Strong pain medications - opioids (codeine, morphine, and others) are recommended only for severe break-through pain, as these are highly addictive and lose effectiveness over time. Strong NSAIDs are not recommended unless significant inflammation is present.
- Muscle relaxants - diazepam can be used to reduce the tension in muscles which can aggravate a pain condition.
- Sleeping tablets - recommended when severe pain stops patients from falling asleep.
- Anticonvulsants - gabapentin and pregabalin can suppress the pain response and pain-windup cycle.
- Anti-depressants - amitriptyline is often recommended for chronic muscular pain in addition to treating the depression associated with chronic pain.
In extreme cases, steroid injections and nerve-block operations may be recommended to block pain signals from nerves.
Lifestyle modifications for decreasing idiopathic pain
Many idiopathic pain sufferers struggle to maintain a healthy lifestyle.
However, a healthy diet, exercise, relaxation and stress management help sufferers cope with chronic pain.
flexibility and strength exercises
yoga or tai chi
support system or support group
- A healthy diet, rich with whole foods, vitamins and minerals gives the body the nutrients it needs to deal with the pain. Vitamin and mineral supplements may be recommended to correct deficiencies, found in blood tests.
- Moderate exercise, flexibility and mobility training and good posture often help reduce pain and increase the ability to cope with pain.
- Stress reduction and positive psychology is extremely important, as stress and distress amplifies pain.
Tip: if your workload or workplace is contributing to stress and leading to burnout, you may want to consider downshifting.
Physical therapies treating idiopathic pain
- Alexander technique - improves posture and may decrease pain caused by tense muscles.
- Hydrotherapy or warm water exercises - warms muscles, calms nerves, increases mobility and fitness.
- Massage and myotherapy - calms the nerves and the pain response to provide short term relief.
- Osteopathy - with more emphasis on the correct posture during movement, osteopathy is a cross between physiotherapy and massage.
- Physiotherapy - increases mobility and strength in joints and muscles, which can decrease pain during movement. McKenzie exercises may help with idiopathic back pain.
Alternative therapies for idiopathic pain
Many people who suffer idiopathic pain are ignored or under-treated by traditional medical fields, and thus turn to alternative therapies.
They can be very expensive, as they are usually not covered by health insurance, and are usually only for short term relief.
My rule of thumb: if it works, is legal, and does no harm, then by all means use it!
Hypnosis or hypnotherapy - Hypnosis may help patients change bad habits, learn to relax and stress less, which can result in lowered pain.
Supplements - Vitamin and mineral supplements may provide pain relief by fixing deficiencies, detectable using blood tests. In particular, vitamin D levels are often low in chronic pain patients.
TENS - Transcutaneous electrical nerve stimulation (TENS) sends electrical impulses to nearby nerves in a small area and may shut down (or increase) the pain response for a short time.
- Acupuncture - The small amount of local pain stimulates the nerves, and may quieten (or increase) the pain response in the brain.
- Aromatherapy - Pleasant scents may be useful to provide relaxation and distract from pain. Essential oils can be inhaled or applied to the skin in a carrier oil.
- Chiropractic adjustment - Adjusting the alignment of joints, outside their normal range of motion, can decrease pressure on nerves and soft tissue in the short term, but can also cause damage.
- Homeopathy - The extremely dilute cures used in homeopathy have no medical basis, however, they may work as a placebo.
What type of headache do you suffer from the most?
- Idiopathic pain disorders--pathways of vulnerability, L Diatchenko, et.al., Pain, August 2006, 123(3):226-30
- Chronic Idiopathic Pain Syndrome, Z.J. Lipowski, Annals of Medicine, 1990 22(4):213-7
- Lack of analgesic effect of opioids on neuropathic and idiopathic forms of pain, S. Arnér and B.A. Meyerson, Pain, April 1988, 33(1):11-23
- Clomipramine and mianserin in chronic idiopathic pain syndrome, D. Loldrup, et.al., Psychopharmacology, 1989 99(1):1-7
Have you suffered idiopathic pain?
If so, how do you cope with and reduce the pain on a day to day basis?
Let us know in the comments below!