What Is Idiopathic Pain and How to Manage It

Updated on March 8, 2018
nifwlseirff profile image

Kymberly has managed many chronic illnesses for 25+ years, including sciatica, costochondritis, fibromyalgia, PTSD, endometriosis, and more.

Idiopathic pain is exhausting and frustrating.
Idiopathic pain is exhausting and frustrating. | Source

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'?

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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 chronic pain is a very lonely, frustrating and depressing experience.
Idiopathic chronic pain is a very lonely, frustrating and depressing experience. | Source

Idiopathic pain conditions

The following conditions and illnesses can be idiopathic - they have no physical detectable cause, symptoms and successful treatments vary among cases.[1]

  • 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.

Migraines and headaches are typically not idiopathic - they have known and detectable causes.
Migraines and headaches are typically not idiopathic - they have known and detectable causes. | Source

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]

Strong pain killers often don't work against idiopathic pain.
Strong pain killers often don't work against idiopathic pain. | Source
  • 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.

A healthy, varied diet is especially important when managing chronic pain.
A healthy, varied diet is especially important when managing chronic pain. | Source

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.

Healthy habits
Stress management
healthy diet
meditation
aerobic exercise
cognitive therapy
flexibility and strength exercises
journalling
posture improvement
yoga or tai chi
time management
support system or support group
household organization
relaxing hobbies
  • 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.[1]

Tip: if your workload or workplace is contributing to stress and leading to burnout, you may want to consider downshifting.

Cross stitching is meditative and relaxing for me.
Cross stitching is meditative and relaxing for me. | Source

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.

Aromatherapy is relaxing, when you choose scents you like!
Aromatherapy is relaxing, when you choose scents you like! | Source

What type of headache do you suffer from the most?

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References

  1. Idiopathic pain disorders--pathways of vulnerability, L Diatchenko, et.al., Pain, August 2006, 123(3):226-30
  2. Chronic Idiopathic Pain Syndrome, Z.J. Lipowski, Annals of Medicine, 1990 22(4):213-7
  3. 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
  4. Clomipramine and mianserin in chronic idiopathic pain syndrome, D. Loldrup, et.al., Psychopharmacology, 1989 99(1):1-7

Painful experiences

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!

Questions & Answers

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      • profile image

        Unki Kim 

        2 months ago

        I was diagnoss 2013 IPF doctor say no cure every 6 months visited to my pull monologist how was thing all about I had MRI&CT Scan to be sure that's why I'm positive for that the last X-Ray I had its very bad looking I was confined in the hospital due to fever findings Pneomonia I was 5 days admitt and two days in ICU to make short story doctor suggest for Lung Transplant I was really down and I don't know what to do because first of all my health insurance start on September when I turn 65 yrs old and my cough is to bad especially at night he prescribe me cough medication but not really help pls help me what to do and thank you more power

      • profile image

        marguerite joyce 

        11 months ago

        I started pain in 7th grade when fell down stairs cracked tail bone 6" straight up was put on pain meds way back in 90's have fibro, sciatica nerve, heart disease, peripheral mellitus diabetes type 2 neuropathy, arthritis's nerve damage no cushioning between any bones in body and much more. migraines started age 13, had pain meds up till Dec 017 now Drs refuse to give them back. health list like a long laundry list. Nothing they can do for many yrs. DNR was told in 2010 stay as comfortable as possible but I suffer from SEVERE CHRONIC pain 24/7 non stop and 67

      • nifwlseirff profile imageAUTHOR

        Kymberly Fergusson 

        15 months ago from Villingen Schwenningen, Germany

        Dear Judith, That's a horrible pain journey through so many doctors and treatments. Pain clinics have also been of no help to me :-( Gabapentin (similar to pregabalin) also helps only a little for my pain, it doesn't stop it. I wish you a lot of strength to keep on keeping on, and encourage you to keep asking questions. If you haven't exhausted all the 'types' of doctors (bowel, orthopedic, rheumatologist, neurologist ...), please do keep searching. But do it at a pace that you can manage. Best wishes, Kym

      • profile image

        Judith Day 

        16 months ago

        I have suffered with pain ever since I had a prolapse bowel operation over 10 years ago. Been back and forwards to Dr's and hospital. Had further operation about 6 years ago but didn't do any good so was refered to a pain clinic. Was given tablets. Also had 2 courses of Injections in bottom of my back but nothing relieves it. Went back to Dr's and asked if I could go to different hospital. Consultant who I saw said I needed mri scan. When results came back he said I needed to see a Professor in London as the operation I would need was to complex for them to do. Went there he said that my pain was Ideopathic anal pain and they couldn't do anything for me. So I'm taking pregablin and duloxatine but it doesn't stop the pain.

      • nifwlseirff profile imageAUTHOR

        Kymberly Fergusson 

        18 months ago from Villingen Schwenningen, Germany

        Hi Pam, I hear you - I'm going through exactly the same thing with my legs at the moment. There is something visibly wrong, and it's really painful. But the rheumy, GP and skin doctor have all given up. I'm still trying to seek answers, and try different things to relieve the pain (compression, massage - ow!!, stretching, ... ) It's so awfully frustrating.

      • profile image

        pam 

        18 months ago

        just about tried everything nothing works anymore doctors dont understand.

      • profile image

        G Leigh 

        3 years ago

        Hello,

        It is wonderful to see this site. My daughter was diagnosed at the age of 9 years old with chronic pain. This was after 2 years of seeing many paediatricians.

        We have tried many different treatments (most of the above), which have unfortunately not helped her very much over the past eight years. Two years ago her condition became worse, previously she had pain in her fingers, toes, knees, elbows and ears. She now experiences headaches, dizziness and sickness on top.

        My daughter is now 15 years old and sitting her GCSEs, which is a very stressful time for any 15 year old. Over the years I have found her schools and the education system unhelpful. Their main concern being her attendance, which I do share. However when she was 11 years old I was forced to take her into school in tears and a lot of pain. I do believe that she needs a good education but not at the cost of her physical and mental health.

        At present we have a great G.P who supports my daughter's decision to not take any medication. She was on amitriptaline for seven years. She is also receiving support from Children's and Adolescents Mental Health for CBT and pain management.

        The main thing that has helped my daughter has been teaching her to have a positive mental attitude and being there to support her. If there are other parents out there who's children experience chronic pain, my heart goes out to you. I would like to recommend the book Lonnie K Zeltzer and Christina Blackett Schlank , Conquering Your Child's Chronic Pain. This book helped me realise that her condition was not my fault.

      • nifwlseirff profile imageAUTHOR

        Kymberly Fergusson 

        3 years ago from Villingen Schwenningen, Germany

        Adam - it certainly is hard to see a child in pain, and to see the pain limiting their life.

        I've had idiopathic chest pains since I was 13 (25 years ago), so I can understand. At that time, I wasn't sedentary at all - tennis, athletics, school sports and loads of chest-moving music (clarinet, bass clarinet, flute, violin). Although, a sedentary life can make conditions worse, at least mine, was not brought on by minimal exercise. Sadly, no doctor, medication, physio or acupuncturist has helped me with these chest pains. I've found heat-therapy (pools/heat packs) helps the most, along with movement modification (bags on both shoulders, not too heavy, lifting things evenly without twisting, being careful about opening heavy doors).

        I hope your son can find something that does help - do keep trying different things, and keep the ones that make even a slight difference!

      • profile image

        Adam 

        3 years ago

        A lot of this hits home as the father of a 15 your old son with idiopathic chest pains for approx. 3-4 yrs. These are usually brought on by minimal exercise and have gotten worse as the years have gone on. We have been to so many specialists (Stanford, UC San Francisco as well as acupuncture just to name a few). We come away from these appts disappointed. I feel bad for my son who now leads an unhealthy, sedentary life to avoid chest pains and has a negative attitude toward medicine after going from one type of Dr. and medication to another).

        We have tried a myriad of medications from pain killers to gastro meds to currently asthma and anti-depressants which do nothing. At this point I can only hope this is something he outgrows which is what we were told yrs. ago but now I really cannot pin my hopes on that. Thanks for letting me vent.

      • nifwlseirff profile imageAUTHOR

        Kymberly Fergusson 

        6 years ago from Villingen Schwenningen, Germany

        Vespa - I don't think it should matter if the pain is caused by physical damage, chemical imbalance, nerve malfunctions, or anything else! It's still pain, and sufferers shouldn't be made to feel like they are lying. (Can you tell I've had too many people tell me I'm imagining things?!)

        Thanks for dropping by!

      • vespawoolf profile image

        vespawoolf 

        6 years ago from Peru, South America

        I have several friends who battle with idiopathic pain...one of them is my mother. Of course, the human body is so complex that no one should accuse someone of imagining the pain. Does it matter, anyway? If there's pain and the source isn't obvious then the most important thing is to find a way to manage it. I do feel a balanced diet and lifestyle is important and you make some great suggestions here of trying antidepressants and alternative therapies. Thank you! I think this hub will be helpful to a lot of people.

      • nifwlseirff profile imageAUTHOR

        Kymberly Fergusson 

        6 years ago from Villingen Schwenningen, Germany

        Kristyleann - Unfortunately, medical science is still largely a field of unknowns (and of wrong assumptions). I'm happy you haven't experienced anything idiopathic! I wouldn't wish such a disorder on anyone!

        kj force - thank you so much! It means a great deal to have a medical professional drop by! I'm glad that treatments are being found, and that research is ongoing for the various idiopathic pain disorders. It's relieving to think that younger patients will have a (hopefully) less difficult journey to diagnosis and treatment.

      • kj force profile image

        kjforce 

        6 years ago from Florida

        nifwlseirff...being retired from medicine, I know the turmoil with which " idiopathic " brings..for more years than I care to count..fibromyalgia was never a factor..yet patients had the symptoms and were written off as " all in their head "..thanks to medical research it is a notible condition which plagues many of all ages..and there is finally treatment ( no cure)..thank you for sharing your knowledge of the disorder and treatments..very well researched and written hub...

      • kristyleann profile image

        Kristy LeAnn 

        6 years ago from Princeton, WV

        I've heard of idiopathic pain (and other conditions, like idiopathic seizures, etc.) but I had no idea there were so many specific types of idiopathic pain. I'm fortunate (so far) in that I've never had any bad pain disorders (idiopathic or otherwise). It never ceases to amaze me just how much we DON'T know about the human body.

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