The Pain Game: How to Cope with Pain (Advice & How To Book 2)

The Spoon Theory explains the effects of invisible pain with very effective imagery. Because for you, being in constant pain, even simple things require spoons. The problem is that for most people, pain is temporary. When it becomes a full-time roommate, the things that used to help — going to the gym to work through it, climbing a mountain and communing with nature, going to a concert — become threats instead of pleasurable experiences.

And for many, that kind of sustained bracing is beyond contemplation. This time felt different, because the pain was ongoing and frustratingly opaque. The Portuguese have a word I love, saudade. NPR defines it as follows:. A melancholy nostalgia for something that perhaps has not even happened.

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It often carries an assurance that this thing you feel nostalgic for will never happen again. This word, untranslatable in English, is what I have struggled against these last years. A wistful longing for something that may never return.

I only turned toward healing once I forced that deep, destructive nostalgia out of my mind. Ultimately, if you fall through the cracks of the medical system, or if you fail to receive a diagnosis that has clear, actionable treatment, you have to take some control back for your own sense of self and health. Being encouraged to take care of herself made a world of difference to Carmen, and to us.

In the absence of finding a solution to stop feeling pain, I found hope in being able to reframe my attitude toward the pain. This included actively cultivating a sense of self-compassion, acceptance and gratitude. These are all words that pre-travel Jodi would have taken a look at and rolled her eyes forever. Simply accepting what is unmanageable and not trying to control what you cannot change is a marked shift from my old way of thinking.

It is also directly in conflict with the way I was raised in western society. By focusing on my progress or lack thereof , I was making a difficult situation more untenable. Now, I celebrate the small steps I have started to take instead of fighting for bigger goals. Rachel, a reader of mine who contracted dengue and malaria at the same time, has struggled with issues of chronic pain and fatigue. Her journey mirrored mine, except that she was able to see a pain specialist in her home country.

She and I have gone back and forth about our experiences, and our respective attempts to find joy in a life that is now different for each of us. For her, too, it has meant accepting the pain and not struggling against it. She has also actively sought out what brings her joy. But she too found that focusing on it, even if things hurt, helped shape the outline of her healing.

The most important, most difficult, most fundamentally frustrating thing is this: Even when moving forward feels like crawling on the floor, a millimeter at a time. I do want to add that I have experimented with a lot of different diet-based changes, supplements and therapies. While I appreciate those telling me that I should try x and y thing that will magically fix it, with all due respect, I have tried many of those things.

The pain is here, and it may be here to stay. All I can do is carve out my own joy within it, and accept that it is now a part of who I am. I meditate both morning and night, and while there are times where I feel resistant to the practice, I cannot deny that it makes a big difference. Meditation has helped accepting what my body is feeling moment to moment , and also reduced reactivity in other areas of my life.

I read three very helpful books for stress and pain management. The following books are three of the dozens and dozens that I have read in the realm of pain management, stress, self-help and more. They are books that I will return to, because they tackle the precise tool that has helped turn things around: I highly recommend all three, and each of them were suggestions from close friends who found them comforting.

I started to understand that resilience is a process. Like many overachievers, I trafficked in perfectionism for most of my life. As with opening your heart to others, cultivating openness makes you resilient, not weaker. For chronic pain, baby steps feel like giant leaps. It is what it is. All you can do is work with the reality you are living, and for me that meant accepting that these limits are valid and I need to respect them. What has helped is very simple: 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. Particularly for chronic pain patients, that assessment is highly apropos. I have adhesive arachnoiditis, level 4 endometriosis, and EDS. I have been on the Whole30 since January of this year.

I have medicine to help me get at least 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.

How I learned to cope with chronic pain | Society | The Guardian

I still need something to take the edge off. Lyrica made me plan out my suicide, thank goodness my sis in law was getting married because that saved my life. 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. 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.

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 am now at a clinic where a pain management doctor who has a practice in D. I can tell you that if you saw me out in public which only be one dr. There are patients whose medication has been cut in half. Thank you so much for writing this article. 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 The second I was T-boned at highway speed. 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 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. 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 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.

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. 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. 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.

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 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. I was told that I had beautiful skin therefore was not disabled. I have heard all kinds of ridiculous things. I truly wanted to die. I could not handle the pain and stress and doctors not helping me. 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. 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. 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.

And the only thing that helps pain is to either cure the cause or to give you medicine that numbs it. 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. 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. There is a huge hole in the medical community lacking information and compassion around how to treat people in chronic pain.

Thank you for your willingness to share your very needed to hear story. Wake up Medical field.!!!! Your story just described my life and thousands of other chronic pain patients as well. My journey has been with Arachnoiditis. We DO suffer and all we need is someone to tell us why. 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. 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. Also, mast cell activation disorder is common in people with EDS. You can look that one up, too. Most days are difficult.

How I learned to cope with chronic pain

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. In I began with aches and pains ,. 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. 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. I had the same reaction. I then turned to my friend Tylenol.

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.

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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. 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.

Therefore, I strongly recommend to Laura Kiesel the following: 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 — 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. In , 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. Pain and Palliative Care Dept.

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: Jorge Alvarez and was very satisfied; and 3 Philadelphia: Cruciani became co-chairman with Dr. Portenoy at the Beth Israel Dept. 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.

Low back pain myths debunked and all your treatment options reviewed

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. To top it off the vertebra above my two herniated discs had a compression fracture and collapsed on itself. 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 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.

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It should go instead of because that scale comes woefully short of describing the nerve 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. My Mom got sciatic nerve pain and is in misery. It rules her life like it rules mine. Well I do and I hope that everyone gets relief from their chronic pain. This is part of the healing process. 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 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. A good friend with severe neck pain recommended 1: It also comes in a CBD formulation, and some folks apply both simultaneously. Unfortunately, it is not long lasting.

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. I teach yoga and have worked with many individuals with chronic illness, including fibromyalgia and MS. 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.