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Chronic pain: The “invisible” disability

April 28, 2017

About the Author

photo of Laura Kiesel

Laura Kiesel, Contributor

Laura Kiesel is Boston-area freelance writer whose articles and essays have appeared in The Guardian, Salon, Washington Post, The Fix, Vice, Al-Jazeera, The Atlantic, and many others. She is currently completing a collection of personal essays. See Full Bio
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Richard A. Lawhern, Ph.D.
May 13, 2017

As a patient advocate, healthcare writer, and peer to peer website moderator, I frequently communicate with people like Laura Kiesel. She is one of (literally) millions of women who are regularly written off as head cases by incompetent or poorly trained physicians who have little familiarity with the assessment of pain. As a result of this pattern, women reporting to emergency rooms with chest pain have a substantially higher likelihood of DYING of heart attacks than do men. Likewise a substantial majority of people diagnosed with chronic pain conditions are women whose treatment has been delayed long enough to exacerbate and complicate their underlying conditions.

Early this week, I gave a 3-minute presentation before a panel in an FDA workshop on “educating physicians in safe prescription practices for opioid medications”. At least three of us spoke on behalf of chronic pain patients during the public commentary periods of this workshop.

My personal input was that the Workshop organizers should feel a deep ethical obligation to adjourn the event without offering recommendations on “safe prescription practices”. This is true in large part because the March 2016 CDC guidelines on prescription of opioids do not comprise a safe or reliable standard of care. In fact, there is compelling evidence that the CDC guidelines were influenced by financial and professional conflicts of interest among the core group of consultants which wrote them. Moreover, this group cherry-picked studies from the medical literature in a deliberate and biased attempt to prejudice their findings against opioids and to magnify the percieved risks of this class of medications. The CDC guidelines are resulting in wide-spread discharges of patients who have been stable and well managed for years on opioid medications — and who are fundamentally not at risk for addiction behaviors. This is a fundamental malpractice and an abuse of human rights in denial of care.

When I wrote about the state of American healthcare at the American Council on Science and Health, I titled the article “A Report Card on the American Healthcare System — F”. Particularly for chronic pain patients, that assessment is highly apropos.

A. Mayo
May 11, 2017

I have adhesive arachnoiditis, level 4 endometriosis, and EDS. I have been on the Whole30 since January of this year. I walk 1-1.5 miles everyday, I do private Iyengar Yoga lessons and practice after my walks everyday. I’m taking every supplement known to help nerves, pain, and inflammation. I have medicine to help me get at least 4-8 hours of sleep. I have a large support system including a therapist. I meditate every day to work on my chronic pain. I have a TENS unit. I have lidocaine patches. I take epsom salt ice baths every night. I fasciablast and dry brush to move my lymph and release my bound fascia. I work damn hard and I am STILL IN PAIN. I still need something to take the edge off. Gabapentin only worked for 1 month, 1 MONTH! Lyrica made me plan out my suicide, thank goodness my sis in law was getting married because that saved my life. Cymbalta gave me a three day migraine where I couldn’t leave the bed. SO WHAT OPTIONS DO I HAVE LEFT!?!? As it is now the only thing I’ve been given to deal with the pain that I’ve had for 2 years is Tylenol 3. Nerve pain is different than normal pain and until they come out with options that are ACTUALLY DESIGNED TO TREAT NERVE PAIN, the chronic pain community needs access to opioids. If we don’t have them you will see the death toll go up, it’s not an opinion, it’s a fact.

Elizabeth K.
May 10, 2017

For 49 years whether it was muscle spasms, displaced vertebrae, tingling in my arms and legs, blackout causing headaches; I was told it was all in my head or to exercise more. This being said to a woman who played basketball and volleyball 6days a week. Ran 2miles a day 7miles a day. I believed the doctors that there was nothing wrong with me.
In reality there was a lot wrong with me, chronic meningitis, degenerative disc disease, cauda equina, advanced adhesive arachnoiditis with ossification, scoliosis, bulging discs, arthritis, undiagnosed fevers and rashes. These conditions could have been minimised had I been diagnosed and treated early on in my life. At age 48 I could no longer hold a job. My life is constant unrelenting pain. Coursing shafts of electricity through my arms and legs strong enough to kill every battery powered watch I’ve owned.
And at age 58 I was blessed yet again by doctors who scared of the government powers that be discontinued all medications to control my pain. Irreguard that every other non opiate I was given produced violent allergic reactions whether by rash, fever or incoherent speech.
I have lazy egotistical doctors to thank for many of my problems, and scared cover-my-ass doctors who put my life in jeopardy by removing my access to the high doses of fentanyl in one day. No medication to help with the withdrawls. Excuses about cdc rules and state laws. The truth was and still is my condition is pallative, there is no hope for full recovery, the only thing a doctor could do for me is help manage the pain. By doing this my life was ok, I was able to feel like I contributed. Now I sit and hurt, the pain is too strong to concentrate on anything else. It is a force stronger than me that gets me out of my bed daily. But that force is losing its hold, I think more about when I die than what life I have to look forward to.

So thank you Doctors in my past for not being good or even decent at your jobs. For not living up to your oath of do no harm. Thank you for ruining my future and my past. And yes now I really should exercise.

May 10, 2017

I have degenerative disc disease, severe arthritis and now I have Arachnoiditis (a very rare disease that for me affects my low back and nerve pain down my left leg). I live in Alabama where there are not enough doctors that know how to treat chronic pain and more importantly don’t know how to treat Arachnoiditis. I am now at a clinic where a pain management doctor who has a practice in D.C., comes down once a month because of the lack of PM doctors. I can tell you that if you saw me out in public (which only be one dr. appointment days) that without a shadow of a doubt you would know chronic pain is NOT invisible. I stay bed ridden most of the day because the CDC has their head in another world, they are making it impossible for doctors to treat chronic pain patients with the right medication so we don’t have to suffer. If the CDC doesn’t allow PM doctors to prescribe the medication necessary NOW, the suicide rate is going to skyrocket! There are patients whose medication has been cut in half. I’ve been on just about everything out there that the doctors are able to prescribe and I’m still in pain. I’m scared to death that when I go back to the doctor next week, they are going to tell me their hands are tied because of the CDC guidelines and they won’t be able to give me enough medication to help my pain.

May 10, 2017

Thank you so much for writing this article. It’s a voice for so many people like us. That have no voice. I have a long story that would take pages to tell. In a nutshell, I was a very active outdoors person, trained and rode horses avidly among other outdoor activities, was an extremely ambitious worker, and was completely independent. I was in a series of three car accidents over the space of seven years, beginning when I was 31. The first 2 we’re very serious, the first I was ran over by a car. The second I was T-boned at highway speed. I got relatively lucky because I “walked” away from both. I did not receive very thorough medical care, so I do not know if I actually broke any bones or not, but it was said that other than a rib or 2, I did not. I did end up with quite a few “mild” bulging disks in my neck and lower back. Because I am extremely stubborn and extremely tough, my injuries did not keep me down in the beginning years like they would’ve other people. I also was religious about doing physical therapy, and did not believe in opioid therapy. Through a combination of exercise, physical therapy, other alternative therapies, good diet, exercise and some other medically advised procedures, I was able to stay working and almost as active as I used to be for several years. By age 37, adter some events, I realized that my injuries were going to catch up to me and I wouldn’t be able to use my body to make a living much longer and that I also wanted to achieve my longtime dream of becoming an engineer or scientist. Or both. So I packed myself up and moved several hours away to a college town and began college. There, I was in a third accident that was relatively mild. I received treatment for that, but my health rapidly deteriorated. For the next 5 years I was in excruciating pain (still am). My feet were on fire all of the time, I had pain in my legs and back, pain in my neck and down my arms and numbing in my fingers. I lost count of how many doctors I went to in the end, but it was well over 20, maybe as many as 40. Before this I had had the pain of bulging disc’s, and other pain. The pain that I experience now was/is severe and debilitating. Instantly upon standing or sitting, anything that was not laying down, my feet start to burn, and it is horrible horrible pain. Not being able to stand or sit without pain interferes with basically every single activity that I do. I tried to maintain my life for a while, but went from a 4.0 GPA to flunking two classes. I’ve never flunked a class in my entire life, in fact I rarely had ever gotten anything below a B, and certainly never anything lower than a C. I went to doctor after doctor trying to find help amd answers. I did not want to let go of my life. But the pain I was in was – and did – destroy my entire life. In a nutshell I was told multiple times things like I was just not being tough enough and I needed to learn to cope “with the kind of pain that happens as you age”, I was told that I “must have had psychological trauma” when I was young and it was now manifesting as a physical pain as an adult, I was told I was faking, I was told I was lying, I was told that since nothing showed up on my blood tests or on my MRIs that therefore nothing was wrong with me and that I “just” needed counseling. Somewhere along the way a doctor, or two maybe,
diagnosed me with fibromyalgia, but then other doctors told me that that was just a “fake” diagnosis and wasn’t a real disease therefore I wasn’t actually sick. This is all while I’m so disabled that putting on my own clothes, getting my own meals, driving myself places and getting groceries were so nearly impossible that I only did it because I am extremely tough. And stubborn. I know other people that could not have done what I did. And because I was so tough and got through it, that actually my doctors disbelieve me even further. I was told that if I could get myself to the grocery store then I wasn’t disabled. It didnt matter to them that I would have to rest in my car for 20 or 30 minutes before going in AND after coming out before I could drive home. I didn’t matter that I couldn’t walk one direction across the entire store therefore was not able to make a whole grocery run in one trip. It did not matter that often I would barely make it across the store to get my groceries, and then the line would be too long (more than 1 person ahead of me) and I would have to abandon my cart and go home. Never mind the fact that if I did not drive myself I literally had no other way to eat and would have starved to death. I’m the kind of person that could break a leg in the mountains and would crawl 10 miles to help – but was told multiple times that since I did not have hospice care, I was not disabled. I was told I needed to pray more, I need to find God, that I needed to find support groups to get over my pain. I was told that I needed to eliminate all negative thoughts, and only be positive and that would fix my pain. I was told that I needed to eat certain foods and That would fix my pain. When I asked for help for disability I was told that I wasn’t disabled enough, that I was too young to be disabled, I was too young to be sick, was told that I was a beautiful woman and therefore was not disabled, I was told that I was overweight and that’s what was causing all my problems even when I wasn’t overweight when they began. I was told that I had beautiful skin therefore was not disabled. (The “beautiful skin” I had was make up). I have heard all kinds of ridiculous things. By the time I finally got the diagnosis for what was wrong with me, I was so beaten down mentally that I was terrified to even talk to this doctor because I was so sure he was going to also send me away telling me that once again there’s nothing wrong with me. I truly wanted to die. I could not handle the pain and stress and doctors not helping me. in the end my adrenal gland’s stopped working from the pain, other organs started showing signs of stress, and I began developing mental problems and cognitive processing problems from the stress and the pain.

I did somehow find enough courage to follow through with seeing this last and final doctor. He diagnosed with a really horrible disease called adhesive arachnoiditis. It is severe inflammation inside the spinal cord that leads to swelling of the nerves and then them sticking together and scarring to themselves and to the sides of the spinal cord sac. It matched every one of my symptoms. It is extremely painful. It is incurable. The symptoms are barely treatable, and pallative care is the only option. When I went back to some of my doctors to say that I finally have a diagnosis and that I needed their help with local treatment, I was met with disbelief, and told that the diagnosis was incorrect. And then reiterated to me that there is nothing wrong with me. I was actually told just the other day that I could not possibly be in as much pain as I thought I was in and I must just be imagining the level of pain I was in. It is astounding to me at the lack of compassion and understanding that the medical community has towards people with chronic pain. I have come to believe that everyone compares their own pain to what other people say and are unable to imagine that there is more severe pain than what they themselves experience. I would think someone that was intelligent enough to make it through medical school, should also be intelligent enough to imagine that a patient coming in and telling you their experience is true. And that it just might be worse than what the doctor themselves experienced. And yet doctors are encouraged now to only believe established text book diagnosises. As if everything about the medical body has already been discovered. And anything new, different or unexplainable “simply” does not exist.

Then there is a further component to the chronic pain patient now where there is now the stigma that if you’re in chronic pain you’re automatically a drug addict or “pill seeking”.
So now just the plain act of stating that I am in pain, and that I need help with it, makes the doctors compartmentalize me, putting me into an unfavorable category, as though I do not deserve medical treatment since MY ailment happens to be pain. And yet I have never used my medication to get high, I have never sold it, I have never taken more than the amount prescribed, I am None of the things I hear on the news. Yet I am labeled a possible criminal because I ended up with a disease I neither asked for nor wanted.

Because being in chronic pain makes you so desperate to not be in chronic pain, many of us have tried many many many things. I for one have tried just about everything I’ve ever heard of. Including special diets, special foods, meditating, positive thoughts, counseling, essential oil’s, herbs, vitamins, supplements, acupuncture, prolotherapy, physical therapy, chiropractic, etc – you name it I’ve probably tried it.

And what have I learned?

Pain is PAIN. And the only thing that helps pain is to either cure the cause or to give you medicine that numbs it. Period. not every cause can be cured. So not all pain can be cured. Sometimes the only option is to numb it. And sometimes the treatment for the cause isnt an already known treatment.

Chronic, severe, intractable pain is a real medical problem. And it’s turning into an epidemic. It is crucial that doctors be trained in it, but instead they are being trained in things like the pain is all in the mind, that you can overcome it with things like positive thinking. True pain cannot be overcome by positive thinking. Positive thinking can keep you from killing yourself over it, but it certainly cannot make the pain LESS. If that were so then we would be able to cure ourselves of cancer, broken legs, diabetes and heart disease soley with positive thinking, without any sort of medical intervention.

Thank you for your article. Thank you for having the courage to say publically your on chronic pain treatment via opiods.
Im sorry for what you’ve experienced, but is very true. There is a huge hole in the medical community lacking information and compassion around how to treat people in chronic pain

Nancy Kriskovich
May 10, 2017

Wonder article. Myself as well as many people I know are/were in this same situation. Thank you for your willingness to share your very needed to hear story. Wake up Medical field.!!!!

Donna Corley
May 10, 2017

Your story just described my life and thousands of other chronic pain patients as well. My journey has been with Arachnoiditis. Doctor’s denying my diagnosis for years, denying a reason for my pain and they try to make you think it’s all in your head. Doctor’s need to listen to their patients. We DO suffer and all we need is someone to tell us why. We need compassion, understanding, and yes more educated doctor’s. It all should start in medical school but as you say, they receive less training than a vegetarian which is disgraceful.
Thank you for writing your story and sharing with others. Chronic pain patients need to be heard and believed.

Sue Bertsch
May 9, 2017

It’s quite possible that you have some version of Ehler’s Danslos syndrome. This is a connective tissue disorder that can affect multiple systems including the intestines, any joints, skin. I would suggest googling the condition. Unfortunately for you, you also have endometriosis, which possibly could be part of it. My daughter has hypermobile Ehlers Danslos syndrome. She has dysautonomia, joint laxity, scoliosis, fatigue, gut issues, stretchy skin, migraines, and looks perfectly normal and healthy. My mom at 93 is bent over and twisted. I’ve had pelvic prolapse repaired 3 times, varicose veins, wobbly knees, frequent migraines etc. my sister has had numerous joint, back, and digestive problems. connective tissue is throughout your body and it’s weakness can manifest in numerous ways. Also, mast cell activation disorder is common in people with EDS. You can look that one up, too.

May 9, 2017

Comments like “you don’t look sick” or “you look fine” irritate me. As a chronic pain sufferer I struggle day to day to make myself look “fine”, hold in my tears and try to function as close to normal as I can. Most days are difficult. Nothing is easy, even the smallest most simple task is difficult for me and people don’t notice, it got done so I must be fine. It doesn’t matter than a 5 minute task took me 2 hours. Thankfully I have an amazing doc that has committed to helping me but I also know that he is only able to do so much. Standards need to change and more research needs to be done on rare diseases like Arachnoiditis so maybe those of us who suffer can get more relief and maybe one day a cure.

patricia mitchell
May 9, 2017

Thank you for your article. In 2005 I began with aches and pains ,.migraines,extreme fatigue, high triglycerides and high blood pressure, I was heading an award winning art center serving over 2,000 students per week and applying to open a Charter School. Yes the work itself was stressful but I had been doing it for 25 years. I found a Doctor,Jane Gilbert,in Bethesda who welcomed me to the fibromyalgia society! She was a consultant to the Army and said the Fibro looked to be similar to soldiers coming back from the Gulf War. We tried a number of options and then she moved to CA. My next Dr. prescribed Tramadol which worked well for over two years. During that time I would have an “attack” of Fibro every six weeks or so. When the Tramadol stopped working I went on Lyrica for a week and had disastrous side effects pushing me back into severe episode of fibro., My Dr, wanted me to try it again. I had the same reaction. I then turned to my friend Tylenol. At 6×650 pills per day, it helped. In the meantime Sleep Apnea and AFIB joined the group..I recently switched from Pradaxa to Eliquis because of the expense of Pradaxa. After three weeks on the Eliquis I am now back in a constant state of pain and fatigue. It might sound like I sit around and feel sorry for myself. I am 77 and lead a relatively busy life-travel,bridge, tutoring and Board memberships. I would suggest to physicians and friends of fibro patients they show as much support and love as possible given that a major symptom of fibro especially undiagnosed fibro, is whining. The best thing besides an empathetic Dr. and good meds is physical therapy. I have been blessed to receive physical therapy from two highly trained women at the Elements Center in DC. They can feel the tightness in the muscle covers which cause the pain. I have sensitive trigger points galore and gentle stretching and strengthening usually bring relief.

Hope R. Proper
May 9, 2017

As someone who has suffered from a chronic episodic pain condition — which is now chronic, no longer episodic — since 1979, and who was completely disabled by it until I received a diagnosis and treatment by a now world-renowned specialist in pain and palliative care, I can completely relate to Ms Kiesel’s experience with those physicians who are not trained to understand or relate to patients with chronic pain. Therefore, I strongly recommend to Laura Kiesel the following: find a certified pain specialist, preferably one with a neurology background, at an academic center — an academic center that has a separate department for pain and palliative care. I was fortunate. My husband is a cardiologist and, as a physician, he became my informed advocate — one who refused to accept the absurd comments from several physicians who dismissed my pain when they failed to identify its cause. It is imperative that your family member or primary physician support YOU even if they are told by non-pain-certified physicians that you look well and have had normal exams and test results in their specialty. They must believe that your chronic pain is REAL, not a result of some neurotic condition.

After we eliminated the various conditions that could be causing my pain and the doctors who dismissed it with the same absurd comments that Laura Kiesel has been subjected to, my husband found one of the few academic physicians who were actually specialists in pain — and there were very few in 1987 — when I had my second chronic episode. At that time, my pain was indeed episodic. It would occur every few years and last for 6 months to 1.5 years. In 2015, it became chronic. My pain is neuropathic and thank goodness I currently respond to Neurontin, which is an epilepsy drug that was discovered to work for pain as well. It has provided relief for thousands of people who, like me, suffer from chronic neuropathic pain.

As I said, Ms Kiesel should definitely contact an academic hospital system with a full pain and palliative care department. If she lives in New York, New Jersey or in or near Philadelphia, I can recommend the following: (1) New York City: Pain and Palliative Care Dept. founded by my physician, Dr. Russell Portenoy: After 16 years as founding chairman of one of the first departments of its kind in the nation, Dr. Portenoy left the department and is now director of the new hospice institute at Metropolitan Jewish Health System in NY. He no longer sees patients; however, the pain department he founded is excellent; (2) New Jersey: Capital Institute for Neurosciences and Pain Management: I saw Dr. Jorge Alvarez and was very satisfied; and (3) Philadelphia: Dr. Ricardo A. Cruciani: Dr. Cruciani became co-chairman with Dr. Portenoy at the Beth Israel Dept. of Pain and Palliative Care. He is now Director of Neurology and Director of the Center for Pain and Palliative Medicine at Drexel University.

I hope the above information will be useful to at least some individuals who suffer from chronic pain. For those who do not live in or near the above centers, Google pain departments in or near your geographic area and make certain that any physician you see is (preferably) certified in Neurology and has completed a fellowship in the treatment of pain.

May 9, 2017

I have had sciatic nerve pain for 25 years now and only medication helps take the edge off the pain so I can tolerate it. I had two back surgeries, laminectomys, and a neurostimulator implant put in that doesn’t work any more. To top it off the vertebra above my two herniated discs had a compression fracture and collapsed on itself. Two years ago, I saw an orthopedic surgeon, and he told me that my neck was falling forward and the additional pain I have in my back is because the fractured vertebra is acting as a fulcrum so my back hurts all the time and I can’t walk too far. The VA Doctor I just saw said I am too young for a wheelchair. I need one and will get it from other sources. The sciatic nerve pain I endure on a daily basis is excruciating and that and my back problems caused me to have to take a disability retirement from work. I still want to work, but I can’t. I call sciatic nerve pain “the believe in God pain”, because if you don’t believe in him, you will when you get sciatic nerve pain because you will be praying to him to make it stop. Sciatic nerve pain is invisible and can’t be seen, only felt. I had a neurologist say I had minor nerve damage, but the pain I experience says otherwise, so I see an orthopedic surgeon. I think there needs to be a new pain scale for sciatic nerve pain. It should go 1-15 instead of 1-10 because that scale comes woefully short of describing the nerve pain. I have a lot of other serious medical problems, but the one that shows it’s ugly head every day, is the sciatic nerve pain with associated back pain. It really sucks because people look at you and think you are fine, but if they had what I have, they would probably end it all. Not for me. I keep going and hope and pray that eventually I can be “fixed”. My Mom got sciatic nerve pain and is in misery. It rules her life like it rules mine. She said she didn’t know how I stood the pain and I said after a while, you get used to it, and she started to cry saying I shouldn’t have to live like this. Well I do and I hope that everyone gets relief from their chronic pain.

Bonnie Diamond
May 9, 2017

Yes, it’s so important that we start by listening to our patients. This is part of the healing process.

Les Jameson
May 9, 2017

I have found cannabis oil helpful in pain reduction, especially neck pain. I know this is simply an anecdotal comment, but it works for me. Admittedly, I never tried WD-40 or motor oil under the tongue; maybe those would work too, but I doubt it. CBD is now legal in all 50 states and I get it off of the internet. I had a urine test for THC which came back negative for those of you afraid of a bad UA in a work environment.
I am a very skeptical type and really not prone to much natural cure methodologies. I found acupuncture a TOTAL waste of time and money and the whole concept nonsensical.

Max LeSueur
May 9, 2017

Les, what does of CBD do you take, and how long before it showed effect?

A good friend with severe neck pain recommended 1:1 CBD/THC for neck, and 2:1 CBD/THC for gut issues.

I’ve had excellent experience with a THC, eucalyptus, topical product from GTI. It’s a waxy salve type product. It also comes in a CBD formulation, and some folks apply both simultaneously. Unfortunately, it is not long lasting.

Mary Kay McCaw
May 9, 2017

For any of us who have even had “temporary” pain from an injury or surgery can relate in some small way to what it must be like to live with pain as a constant companion. It is shameful that in this day and age medical professionals are still focusing on body parts, rather than the whole person. A holistic, vs a reductive, approach is needed. Integrating alternative therapies and practices (diet, gentle somatic yoga, breath work, meditation, acupuncture, deep therapeutic massage, +) should be routinely integrated with western medical practice. I teach yoga and have worked with many individuals with chronic illness, including fibromyalgia and MS. Nothing will “cure” some chronic conditions, but appropriate integrated programs can have a deep impact on reducing/managing pain and allowing for a better quality of life.

May 9, 2017

I am amazed at all this backbiting. Sorry, yes some people can find some kind of relief from chronic pain by going the natural route. But not all of us. I also am a nurse with fibromyalgia. I do some natural things, that work for me and also take medication. I exercise daily and walk as often as I can or ride my recumbent bike. My husband on the other hand, had incurred a back injury 30+ years ago and despite pain level around 8 still keeps active. No he does not work, but he does what he can everyday. Unfortunately folks, that is the key to overcoming chronic nerve pain. KEEP GOING, KEEP TRYING, DON’T GIVE UP. I too would like to see more research on chronic pain, especially to get away from the opoids, which just mask the pain.

JL in Jersey
May 9, 2017

I suffered for years from chronic back, neck, and intense shoulder pain. I got some relief from anti-inflammatories but they began to take a toll on my digestive system. MRI revealed spinal stenosis. Literature search on anti-inflammatory diets relieved a number of studies on fish oils and their effectiveness here is one example I started to taking 20 ml’s a day of fish oil and within about six weeks saw significant pain relief. Other problems and family history lend to me a gluten free diet, which eventually helped with other issues. While the science on gluten is limited you have to respect the movement by top athletes into the gluten free world.

May 9, 2017

For me its long years and damage to the nerve conduit running through the tricept muscle right arm from known trauma on two occasions in the past. Excellent doctors and diagnostic tests but no definite conclusion on what exactly is damaged or ways to rectify or repair the damage, went through excruciating burning pain 13 on a one to ten scale. Discovered by an accident pain memory “Dr. Norman Doidge” reduced pain to 7~8 but otherwise it continues. The patient is not oblivious or uneducated and understands anatomy and the operation of the parts of the human body.

My heart goes out to those who also suffer pain and reach dead ends, months of waiting and no results, also the concept what the patient tells you is not particularly important. I live with my life and pain and have used tens, ice packs, mild codeine pain killers (some people have a respect for medications that might give temporary relief) acupuncture.

At one point I was told to go for physio and got there to be told it said muscle damage on thhe form that I went along with upon the end of this test he said “Why did they send you to me because you don’t have muscle damage?” It was so obvious it was nerve damage.

Some of my ancestors where early very well known doctors and I grew up looking through medical books. One of my favorite places is the medical library in the hospital I was born in many years ago. We should not be critical of doctors as it is not there fault, rather its because the medical field just did not exist one minute, it grew over time and certain areas are still not well understood, perhaps to say we are only scratching the surface of medicine and the human body would be equally true now as two hundred years ago and two hundred years in the future.

One wish might be to take all the various terms for ailments we cannot diagnose concerning pain and explain they just mean that, like super natural just indicates beyond what we understand presently. Myalagia, Miofacial Pain and all the other terms are just a place to hang these things we don’t understand some are physical and some mental or more likely both. The first thing a pain sufferer needs is a safe place where he/she feels safe and that those there will try to find a root cause with open minds.

Pain sufferers make up the largest segment of our society and need help not derision….

Lucinda Ashman
May 9, 2017

I have watched my daughter for the past four years deal with Chronic Migraines. She has gone through so much all in an effort to have some relief even for a few hours/day. Right now her only saving grace is a Pain Management Doctor who tries every visit to help her find solutions to this goal. He is a blessing in her life and gives her hope, if nothing else, that there is one doctor who cares. Truly cares and believes her that she suffers this pain. That if she has to go anywhere, her ice pack goes with her and sunglasses no matter what time of day. I think this is one thing the doctors need to learn that in the busyness of their days, they have to have their patients have hope.

May 9, 2017

I had chronic pain for 30 years following a whiplash injury. Was severe. Went to dozens of doctors and chiropractors to no avail. (found the doctors quite condescending and dismissive, and they prescribed useless medications). Finally found a chiropractor who could help significantly through her “network spinal analysis” light touch technique which calmed down and reset my nervous system and I am now 95% better& not taking any medication.

Tsegaw Zewdie
May 9, 2017

Thank you those who share their experience of pain, how come like this pain suffers the person, can’t he get painkiller? I wonder this time in the hospital due to pain suffering for a long time, I don’t understand how it happens.

Carolyn M
May 9, 2017

Liz P I’m so very happy for you that you found a solution to your health issues. It sounds like you just needed some internal simple changes, at least for now, to improve your life and I hope you are grateful. For the rest of us that aren’t as fortunate as you we are “stuck” dealing with doctors and other people who are either close minded or lacking knowledge or worse. those medical people who refuse to admit they don’t know everything. I have spent the last 20 years trying to find out why I am in so much pain in so many places so much of the time. I have tried everything from diet, acupuncture, various exercises, chiropractic, all kinds of doctors and tests and medications and nothing changed but I got worse. I have scoliosis, arthritis, degenerative disc disease, RLS, Fibromyalgia, a hiatel hernia and carpal tunnel. I did have a long term career I loved , a brand new home, lots of friends , a very active social life , a great body , do I need to go on? It was all gone just like that and I was so healthy before. So who really knows the answer or has the right to say who is in pain and who is not trying to help themselves! I sure don’t!

Sue Bertsch
May 10, 2017

Carolyn, you may have EDS, Ehlers’ Danlos syndrome, probably the hypermobile type. Spend some time researching this online. It is a connective tissue disorder.

May 9, 2017

I am 76 going on 77 -1st July .. and I know of very painful times ..but have changed from painkillers to natural products of my ancient ancestors ..which I KNOW NOW TO BE CORRECT . At first I thought that medications by man’s ingenuity was best…how wrong could I have been ! I’ve always worked out and suffered the pains and agonies as if they were to be my life’s companions, taking the usual painkillers when required – which was pretty regular
I always went to the gym regularly; and yesterday I worked out using very heavy weights – which is usual -( as I compete with myself all the time ….) – and burned 0ver 1500 calories in one hour …on just 4 exercises . (Let’s say I may not have done it perfectly .. so at least I’d have burned 1200 calories ). I did leg press ( machines ) 200kgms x 30 times x 13 sets !!! and various other exercises ..all because about 3 years ago I started taking TUMERIC GINGER AND CINNAMON IN MY COFFEE AND MILK sometimes 2 to 3 times daily . I now have no complaints although I’m aware that I’m not young anymore ..

Laura DeAlmeida
May 12, 2017

Dear Jay.JOKHAN, I am very impressed with your vitality and would like to ask – what is the dosage of your tumeric ginger and cinnamon used in your drinks? Do you buy on-line for special and pure forms? How much do you spend on them monthly? My pain cannot even be voiced in just a page like these others. I am going on 47 this year and as everyone thinks I looks so good for my age – this article mean a lot to me! When I hear someone say to anyone who is in pain -“Well, you don’t LOOK like your disabled – in my mind – I say “Well, you don’t look STUPID!” Please feel free to email me directly at I thank you for your help. Sincerely, Laura

just call me grumpy jack
May 9, 2017

when the answer to a problem is not in your doctors head they often tell you the problem is in your head

May 9, 2017

Spot on! I have been reprimanded by doctors that my debilitating chronic fatigue and distended abdomen is “all in my head” whilst I was suffering from those symptoms for months…

You need a doctor who has suffered the same to be able to appreciate the conditions suffered, and to want to probe further….

Else it is all conveniently categorised as “neurosis”!

Thomas Abbott, Ph.D.
May 9, 2017

Fibromyalgia is one of the few diseases for which there are no medical tests to aid with the diagnosis. The diagnosis rests completely on the patient’s self-report.
Unfortunately, most of the sociopaths in our society have discovered this fact. M.D.s are constantly bombarded by people claiming fibromyalgia so that they can qualify for government disability payments. And some pretty groovy opiates too.
This causes doctors to try to avoid rendering this diagnosis for anyone. Unfortunately, people with real chronic pain are treated like the others.
The answer is to arm yourself with as much knowledge as you can about chronic pain syndrome before you see the doctor. Know what treatment options are available. Insist on a specific course of treatment, based on your research. Don’t take no for an answer.

T Erb
May 9, 2017

And then there’s Ehlers-Danlos Syndrome, which diet will not “cure.”

Sue Bertsch
May 10, 2017

Hi T, I’m with you. I imagine half or more of the people replying here have EDS and have not been diagnosed because of the Zebra effect- i.e. When you hear hoof beats you think horses not zebras. And so MDs think they are dealing with common maladies not EDS. However diet can help somewhat to help repair collagen and to control gastroparesis and to deal with MCAD. Treatment for EDS is for the symptoms as it can’t be cured.

May 8, 2017

I am with your friend on the “made up” condition. From my perspective, it isn’t the discounting of the diagnosis of fibromyalgia that’s the problem, it’s the fact that the underlying cause(s), as with other women’s issues, are not identified and addressed. If your diagnosis of endometriosis was found, perhaps you wouldn’t have “fibromyalgia”. How could anyone be well while abdominal organs are deprived of blood and oxygen? Nerves compressed? Anyone would get sick if their digestive system is chronically compromised.

Doctors are not informed. How can we justify spending tens of thousands of dollars on the wrong scans and tests and brushing patients off, leading one to the corners of the web to research on their own? And once a patient starts becoming knowledgeable of medical conditions and terminology, they likely get treated as though the condition is a result of a mental disorder. Perhaps an issue undiagnosed for years (compromised digestion) leads to depression symptoms as well.

It’s a fact that many doctors don’t know how to diagnose, and instead, prescribe many pills and expensive treatments without first knowing the cause. Many of these treatments (ie antidepressants) can lead to more and more problems, which cascade into new diagnoses and treatments.

Anyone can figure out treatments for symptoms with the information available online. Solving the problem (diagnosing) is the difficult part and is what is not being done. From a rational perspective, especially considering all the money that is wasted and lives ruined, this is crazy. Sometimes it takes actually listening to the patient instead of mindlessly assigning meaningless diagnoses according to probability.

So easy to not have to solve the problem and just label someone with a mental disorder instead! This is inhumane. Doctors have no business blaming patients or allowing people to needlessly suffer because they are poorly trained and uniformed. This starts (and often ends) with primary care. And please-let them be doctors, not administrative workers doing clerical tasks.

Thanks for sharing your story. You are courageous.

Suseela Ravi
May 8, 2017

Liz P,
Thanks for your post. I’m a retired physician, currently living in Bangalore, India. I had chronic pain for years with confirmed dx of GERD, osteoporosis, shoulder pain from an old injury, inability to wear anything tight, stomach bloating and back pain. I made several changes in my diet (choice of foods, timing of intake, limited portions portions) over the years. Constant body movement with activities like house cleaning, cooking, etc has helped me tremendously. Where i used to sit a lot with minimal movement, i now take care of everything around the house. No more back support, pain meds, etc. I wear very loose clothing, no hra even.
It worked for me. No gurantee that it would work for others, but some improvement is guranteed. It also helped me to get out of the cycle of pain meds and doctor visits.

Suseela Ravi
May 8, 2017

Liz P, Thanks for the suggestions you have made. The diet and constant movement of the body to do anything, from sweeping to toilet cleaning after i fired my maid, resulted in tremendous improvement in my chronic pain. Timing of my food intake, my choice of food items, and portions of food that I consume seem to have helped too. My Gerd, back pain, shoulder pain, and chronic bloating have subsided. I don’t pay attention to the little aches and pains anymore. They don’t limit my daily life. I’m quite depressed for reasons other than my physical illness, but that has not impacted my physical health at all.
Probably it works for some and not for others.

April 30, 2017

Concerning Chronic pain, sadly so many people are suffering for being cut off for the idiocy of those who have misused, abused, sold, or overdosed on pain killers. I know so many. I being one. Now we just suffer. I care for my elderly parents and don’t have all day for hospital beds, cervical pillows, TENS units, and various other tools of the trade. 15 years of Morphine Sulfate… and suddenly the medical world tells me I’m fine?

Elizabeth McLeod
April 30, 2017

I know what it is like to be brushed off. I had two ligaments in my right buttock that had juxtaposed due to my active life in and out of work. I was a hiker/ backpacker, skier, ballerina, gymnast, cheerleader, avid gardener and dog walker. My work required repetitive stooping, squatting and lifting every shift I worked.

The ligaments had been overused and were causing fascia and nerves in my rectum to become compressed and pinched in three separate spots;two spots on my inferior rectal nerve and one compression on my right pudendal nerve branch that innervates the perineum and rectum.

At the same time, a titanium metal Filshie clip put on my right Fallopian tube in 1998, has migrated and It is adjacent to the top of my rectum where it meets my lower sigmoid bowel. This was not found in an MRI done nine years ago! Why not?

The pain I had prior to decompression surgery was life threatening and was not controlled properly for three years! I could not sit or lie down and thus I became so sleep deprived that I almost died. To this day, no doctor has apologized. I went mad from being brushed off. I do not get depressed. I fought fir my life.

An independent chiropractor did an X-ray on my pelvis last Spring 2016 ( 5 years post-op after having the above nerves released ) and he found the migrated clip. What a shock! X-rays were never ordered back in 2008 when my chronic neuralgia began. Why not? It wasn’t on the doctors’ radar?!

It is obvious they all thought I was psychosomatic and/ or bi-polar! I was 51 when this began and I lost everything. I lost my career of 31 years, my family relationships have suffered irreparably, my friends are few and far between and I have had to use up too much of my retirement savings to keep afloat. I can longer hike, ski, scuba dive, own a dog, travel the world and play tennis. I have been a prisoner in my home for 9 years!

I was slandered, misdiagnosed with post herpetic neuralgia and left to die. I have suffered and I have lost respect for doctors. They committed medical fraud. The pain specialist breached the Standard of Care for a pain patient with the complex neuropathy I had. I am a victim of medical negligence. I did all the advocacy, The Net saved my life. I found the specialists who could help me.

I believe all med schools need to have a Chronic pain course that extends to enough time for students to learn about myalgia, neuralgia and chronic pain diseases. When neuralgia is not treated, the person develops a centralized neuropathic pain disease. Ignorance is killing people.

Bennett Cohen
May 8, 2017

My daughter had chiari malformation type 1, which two chief neurologists missed, the first one at my local hosptial a woman phony who altered after wititing our daughter had tension headaches and or cluster type headaches requiring therapy, we mandated an MRI which showed the Cerebella herniations, then rewrote her chart to say it was her ; this phony chief neurologist’s diffffernetial diagnosos to be Chiari. WE promptly took her to another Chef neurologist at a bigger new york hospital a dismissive wacko who told us not to do a spinal MR despite the radiologist of almost a year earliear to do anoterh follow up MRI of the spine with contrast as a shadow was seen in the spinal area. WE then whe nt to another but this was the chief ped neruosurgeon who quoted statistics on the chairi saying he would nt oeprate as none was needed and to do another MRI in five years, upshot our daughter had a syrinx (fluid filled cyst) growing and compressing her spinal nerves. Upshot required two separate neruosurgeries which had they responded seriously to her condition and not played god games and arrogance our daughter would have been left with chronic pain and would of had only one surgery. To mush damn arrogance and stupidity in medicine and surgery. I see Doctors now as car salesmen who are mostly flim flam people dressed in white with latin names to hide behind, its growing reality that its now more then ever a business making money on the sick and dying. Instead f studying to keep abreast of knowledge and having an open scientific mind too damn grabbing and arrogant for their own good. To this day many of the md’s we see for her condition, and this is the saddest part contact the first neruosurgeon who misdiagnsoed our daughter to protect his position/post at the major hospital and self quote her as having an emotional problem not pain, how sad and depressive is that? Thus all new MD seeing our daughter have to wade through the lie to protect his image and post if they;the new md’s we bring her to would, many do not and accept and treat her as having such an emotional problem and not real pain.

Jo Marie
May 8, 2017

You are so right… as a nurse, I find your situation horrifying and in my opinion your care givers are negligent.
I too have suffered from this condition. It can take away your way your life but you can help by continuing to speak out.
May God bless.

Jo Marie

May 10, 2017

Elizabeth-I’m so sorry for what you have been through. I hope you are doing OK and glad that you found specialists that could help you.

Kimiko Alexandre
April 30, 2017

I am trying to help people in chronic pain like myself and those you are speaking of. Forgive the link but I have created a petition to start a chronic pain hotline that is currently being considered by Random Acts of Kindness. Signing would give more proof that this might not be the answer but something to help in dire straits when it’s too much to take on our own.

May 8, 2017

I was in a serous skiing accident 2007 racing in Sun Valley ,Ohio. My speed
when I feel and only one ski release was 50 miles per hour. I ended up with a right knee full ( not just my kneecap) dislocation with my knee turn to the back of my leg completely destroying all four ligaments and damaging both sides of the meniscus. Also, this fall lead toc a 2 level fission. This one fall required 13 surgeries by Super-Star doctors in the Stanford and Palo Alto area. My last surgery was at John Hopkin’s to decompress the nerves causing the pain.
I’m up on the later alternative pain relievers and technique to reduce or ellimitate your pain and the steps that can help you ask the right question. I’m 58, the accident was 10 year prior. Feel free to contact me.

May 9, 2017

I agree with you 100%, every statement made by you about doctors… If doctors don’t want to listen to their patients & be sympathetic to the pain they are experiencing, they chose the wrong career… I am a chronic pain sufferer myself & I was treated like I was ignorant & like I was exaggerating the pain I was in… My ex husband also was unsympathetic to my pain & actually came right out & told me that I was faking it, just one reason he is now my ex, lmao…

April 28, 2017

Change your diet, change your life. Eliminate inflammatory foods like gluten, casein, soy, and corn, eliminate chemicals from anything you eat, drink, or use, eliminate anything GMO, eliminate anything artificial, eliminate all processed sugars. I guarantee at least some improvement if you don’t cheat. I no longer have chronic fatigue syndrome, fibromyalgia, lupus, gerd, ulcerative colitis, rheumatoid arthritis, or osteoporosis. I went from being unable to walk 1/4 mile to running 1/2 ironman events!

Andrew Jarvis
April 30, 2017

Do you have any scientific evidence to back up these bold claims or just a single anecdote?

April 30, 2017

I’m glad that worked for you, but for every one of you, there is one of us who has tried that (and more, and didn’t cheat) and is still in daily pain. These types of suggestions are well-meaning, but contribute to the problem. That being, that chronic pain patients can fix/improve their problem with lifestyle changes. It’s why some doctors don’t take us seriously. That’s frustrating and unfair, but a burden of many invisible diseases.

May 2, 2017

Extremely unhelpful and no proven, reliable scientific evidence at all to back this up. Just as helpful as ‘Green tea on a morning will make you immortal’… You can’t cure Lupus, RA, Osteoarthritis by going gluten free, there are NO known cures. Do you not think scientists would have found them if it was as simple as eating your 5 (or 7) portions of fruit and veg daily?. I come across many people like yourself and highly doubt you had any of those illnesses in the first place.
Eating a healthy diet may give you a bit more energy, losing weight will help ease the pressure on your joints, possibly helping with mobility. But certainly not cures by any means. Please keep false statements to yourself in future.

May 9, 2017

Really interesting!!! Could you please tell me where can I read some more information about diet, inflammatory foods? I drink lots of soy drink every day because I’m lactose intolerant. Thank you for posting

PS. I’m totally agree with everyone who thinks that doctors too much often don’t belive or deny pain… just because they don’t are able to make diagnosis!
My advice is to consult an expert on pain!!! At least they say what are we talking about!!!

May 11, 2017

The dietary changes you mentioned are great habits for anyone-healthy or sick. However, diet does not cure rheumatoid arthritis, endometriosis, and other diseases or serious conditions.

Perhaps your reaction to lifestyle changes is an indication that you had a food allergy or symptoms from a poor diet; that you were misdiagnosed as having a serious condition.

This trend to deny pain medications to people who are suffering immensely is discriminatory, bordering on human rights abuses. Doctors likely have access to these medications and don’t have to reap what they sow.

Once a pharmacist stole a partial script of a scheduled anxiety medication I took at one time and had filled, leaving me to wonder if pharmacy employees are stealing opioid medications that patients get blamed for abusing.

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