How Do You Describe Your Chronic Pain?

How Do You Describe Your Chronic Pain?

By Ed Coghlan.

Because pain is very personal and subjective, it sometimes defies description. One person’s “five” is another person’s “10”.

And patients, and even providers, often express frustration at the inability to accurately describe and measure a person’s pain.

A group of patient advocates is advising a pharmaceutical company that wants to find out how a person in pain visualizes it by using words directly from people in pain.

As Jim Broatch, long-time Executive Director of the RSDSA told his members in an email:

“The idea is that this project might have an impact on how people communicate with their doctors and how doctors can better understand the experience to create treatment plans that align with the patient’s quality of life treatment.”

Grünenthal USA is the pharmaceutical company that is working with RSDSA and other pain advocacy groups on the project.

“I’m very excited to be working with a number of other patient advocacy organizations to collect descriptions of how individuals with CRPS, vulvodynia, and other chronic pain syndromes visual their pain using words or images,” Broatch told the National Pain Report. “By collecting this data, we hope that we eventually can help individuals with chronic pain better communicate their symptoms to their health care professionals.  Certain symptoms can suggest different underlying pain-generating mechanism which can then be targeted.”

Kathleen Kraus works for the ad agency that is accumulating the responses. They’d love to hear from you. You may reach out directly to her by clicking here for more information about how your submissions will be used and in what format.

If you decide to share your thoughts with Ms. Kraus, let us also know how you described your pain in the comments section of this news site.

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Authored by: Ed Coghlan

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Deborah K Fitzgerald

When I’m asked what my pain level is I always ask for WHICH pain? I have 3 different types of Chronic Pain. I have Muscle Pain, Joint Pain and Nerve Pain. I have Fibromyalgia, Systemic Lupus, OA, Neuropathy, DDD, DJD,Depression, Anxiety and more. My answer always starts the same. I say that I HATE waking up every single day. Every day I wake up feeling like someone has beat me all over with a baseball bat, My muscles feel like one solid deep bruise that covers every inch of my body, It hurts to move even an inch since my pain level is always a HIGH 8 or 9.. I don’t want to move yet the pain is too horrible to stay still. The painful movement comes slow. My joints are really stiff and painful to move. This is when the tears run down my face. My muscles are still being hit by the bat. Moving my joints feels like a knife is being driven into them by the bat. I hear loud pops, grinding, crunching and scraps. There’s no cartilage left in my knees and little in my hips. If I sit up too quick I have to contend with the viciously sharp, deep, wrenching and grabbing pain from the muscle spasms in my lower back. That’s just trying to get up from the bed, sofa or recliner to try to make it to the bathroom before its too late.
At this point the pain level is a strong 8 or 9. As soon as you relieve your bladder your looking for your pain medicine. If your lucky to have anything to take. I am lucky, for now at least. YOU TAKE IT AND PRAY THAT IT BRINGS THAT NUMBER DOWN TO A 6 OR 7!! If your to have a good day then as you move a little more, take muscle relaxers, antidepressants, Lupus meds, B/p meds, heart meds, Neuropathy medicine, Cortisone for inflammation that you have all over adding to the pain your feeling, plus supplements, vitamins and more, your pain will come down to a 5 or 6. If it’s to be a bad day I’m afraid your in for a crying day in bed with pain at 7,8 or 9!! That’s when you enter the Unknown World of Guess and Wait. How long might this good day last? Will I be able to cook a good meal for my family or will they eat take out again? Will tomorrow be a good or bad day? How about the day after? Will I be in this constant, miserable, agonizing pain for just one day or 7? Maybe even 14 this time! When you go through this a few times you learn to take life one day at a time. That’s Chronic Pain!!!!

Tracy

I injured my wrist at work and after 2 surgeries developed RSD.
I describe MY pain as the hottest chards of glass running through my veins and being scraped with them. Other days it’s ice ice cold frozen, it also feels like it’s been electrocuted. 24/7 some days are 5’s, some day’s are25 and beyond on a pain scale,however it’s CONSTANT!

S C

Pain steals my soul. It steals my hope. It turns me into a dying animal forcing me to focus on moving air into and out of my lungs. It tricks my body into becoming tense, every single muscle on guard staying knotted for days on end, perceiving a threat due is misfiring of signals. It is a screaming monster 1cm away from my face 24/7. My skin can be an electric current or doused in gasoline simmering, sizzling, burning on fire. My limbs can also become frozen. My muscles, bone and blood have been replaced with blocks of ice, frigid water flowing through. It is a deep ache, like my bones are shattering and splintering off under the weight of my body.

Kelly goodson

Sleep when i can,warm blanket thats heavy, petting my dog,and have a friend to talk to

Jennifer Faust

My pain varies it can feel like my legs and arm are on fire or the majority of the time it fees like a two ton weight is on top of my legs crushing them. The pain is nothing Ive ever dealt with before rsd. I thought cramps were bad growing up ha they have nothing on this unrelenting pain. You can become nauseous because the pain is so bad but peppermints or peppermint tea help calm it down the nausea at least. People have no idea what this truly feels like unless they have it.

Emily Rice

One of my many CRPS symptoms is like the pain of ripping a bandaide off of your arm (hairiest part) but ALL of your skin feels this way. Can feel every hair on my entire hand and arm up though my shoulder to my ear… if only it subsided like when an actual bandaide was removed prior to CRPS. During a flare up, just imagine lighting that on fire. I’ve had RSD/CRPS for 15 years.

lij

Today I went swimming, because the buoyancy of the water relieves my constant pain in my foot and leg. When I walk, it’s always painful. I try to put up my feet, but the pain throbs continuously, hour, day, week, month……. sometimes I get so exhausted I finally fall asleep. Pain just continues all the time. I’ve tried steroids, but they’ve given me cataracts and osteopenia. I hate opioids because I can’t think straight and do things. I believe in physical therapy so I swim and I feel better when I swim. But the pain is always there. So tiring. So exhausting. It is much harder to keep things going when you are in pain all the time.

Greg

Today, it’s like a bunch of ice picks going down the left side of my spine with all the referred pain one would expect from pinched nerves. As this pain radiates, every adjustment to my position sends jolts of pain throughout the upper left half of my body. This is combined with the constant, every day pain which is like a knife under my shoulder blade/scapula, a collar bone and shoulder in a constant, deep ache like it’s being squeezed in a vise. My chest burns as it usually does but today I can breath normally without increased irritation. Pushing off morning meds for some brain clarity and to try and stay awake since I didn’t sleep from pain last night. The tips of my fingers on my left hand and starting to burn along with my forearm so no more typing for me!

Donna Hofmann

It is hell! When I am having a flare, life totally ceases. Even when the pain is controllable, I am tired and fearful of doing too much. Wouldn’t wish this on anyone.

Cindy J Colbert-Hock

I could not get the link above “clicking here” to work.
My pain is constant, I guess I am one of the lucky ones,…I still sometimes have good days where with medication I am actually down to a 3. I dare say yesterday I think it went to 2! My pain is aggravated by activity and weather. I have degenerative joint disease, osteoarthritis, some spinal issues, hip surgery that didn’t go well and Fibromyalgia. Mentally I have depression, anxiety and PTSD. Usually however, with medication my pain is constant pain is 5,6,7. The intermittent pain is terrible it does definitely hit the 10 mark pretty much every time. Unfortunately there is no preparing for the intermittent pain. The pain is exhausting, stabbing, shooting, electrical, throbbing, aching.
Never in a million years did I know pain could be like this. In my healthy years I did everything…very active. Now I am just happy to go to aquatic therapy, walk a little, garden a little and quilt a very little. Aquatic therapy has saved my life.
When I finally found the oxycodone late 2012 I started participating again. Late 2013 I began aquatic therapy, 3 mos. later I began using resistance tools in the water, shortly after that I began driving again because I was stronger. My typical modus of operandi is this: I will exercise walking or water therapy, I will go as long as I can hold out, come home take my pain medication and 1/2 I am up and around again. Without the medicine I would not be up and around again, not for a few days. Can’t get any type of meaningful exercise in at 2 days per week, and I wouldn’t hold out as long as I could knowing there was not going to be any relief. I hope these people wake up and get this. I am on the same dose I started with in 2012, and I have been told it’s a very low dose. But I am very very sensitive to most medications. Whatever most people take I take 1/4. Everyone of us is different I know many other folks need to make more than I do to get the same relief. Oh, and it never takes the pain away completely simply make it’s tolerable.

Sharon Lynn

I have a follow-up to a previous comment I made 3 days ago. Two days ago I had 4 Dr appointments in the one day. From all the walking I did, I could barely walk by early evening. My lumbar spine felt like every muscle there was knotted up, hot and burning. My knee that needs replacing was almost as bad and I could hear and feel it popping and grinding with every small step. Yesterday I was nearly paralyzed recovering from the activity the day before. Simple household chores have the same effect on me.

One of the appointments was with a Cardiologist. Last week I wore a 24 hour study with a sling monitor. Out of 145,000 heartbeats, my heart had skipped nearly 6,000 beats due to pain. I kept a diary of my activities for the 24 hour period. My heart missed the most beats when I was doing laundry and cleaning up the kitchen, washing dishes. Until now I did not realize how my chronic pain is now affecting my heart. Because my problems are degenerative, I shudder to think of what’s next. I take 3 Vicodin daily of the 7.5 mg dose. A year ago I was taking 5 a day and the pain clinic decreased it to 3 even as my pain has worsened. I received a letter recently from the clinic indicating “other methods” they want to try while decreasing the opoid yet again. I have already done all the other options except steroid shots in my spine. As I previously stated, those shots ruined my right hip and I will not do that to my back. It’s falling apart on it’s own and doesn’t need any help hastening the process. With the missed beats and fast heartbeats (avg 128), I’m afraid another decrease in meds will cause me to have a heart attack or stroke. I’ll see in 2 weeks what they are going to do. But right now I might become another pain patient that is forced to the streets for help.

Sue

Since 1962, I’ve dealt with Chronic Pain finally determined from RSD/CRPS. From this we’ve added Fibro, TOS, RLS, Raynaud’s, degenerative back disorder, neuropathy, white matter disease, acute kidney failure, pulmonary embolism, heart probs, spasms, lack of sleep, just to name a few. We have tried all therapies & treatments & now most meds are limited due to acute kidney failure so between the hot & cold, sweats, shaking, not knowing where to place myself for comfort, attempting to look like a ray of sunshine 24/7 without driving everyone else nuts, my life is extremely wonderful! My pain levels are through the roof & am having difficulty finding neurologists in my area to treat me let alone doctors of any type that recognize our affliction. It truly would be nice to find a cure for RSD/CRPS & doctors to aid us especially now with the opioid drama among us all. We need medication to quell the horrific pain as we do not exceed the pain med usage yet we are treated as drug addicts rather than patients with a serious medical problem. So, should this forum have someone or a team that can aid us, please step up to the plate TODAY – we would appreciate your assistance in the worst way before someone else we know loses their life for lack of medical assistance. Thank you for listening & your immediate care for us.

Mary S

Pain with me is 24-7 even when I get medication. My paid is CRPS my dr. said it was RSD years ago. But I also have horrible nerve damage that never goes away and affects my entire right side of my body. My pain is about a 7-8 with medication. A 10-14 without medication. Can’t sleep, can’t function, can’t do anything.
I have throbbing, burning, numbness, feels like someone stabbing me in the spine, neck with a hot poker. Pain feel electric at times, or most of time just gnawing never really go away, ache, stiff, tight, discolored skin, high blood pressure because of pain. Feels like someone taking a 2×4 board across middle of my back. Knocking my legs out.
The government doesn’t belong in our drs. office. This is inhumane to treat humans without medication. I have been injured since I was 35, & on disability, now I’m 65. I’m not sure how much longer I can take this pain!
Please take all of our names & if we have MRI, CSCANS and a history of our debilating pain then we should be in a big dr. database for drs. To see we’re not junkies and use for recreation or sell on the streets. That were ligament chronic pain patients. Tell the government not to group all of us into a box, as a chronic pain patient we are all different as well. Also when I do take medication I don’t get high or euphoric, I get some relief from my pain. I’m not a junkie, never bought anything from the streets, I’m not a addict, I’m a chronic pain suffer, and believe you me I SUFFER every moment of every day. I want the government to know that they will be killing 100,000 people if they don’t get out of the drs. office and leave patient and dr alone. If you have type 2 diabetics you get medication, high blood pressure you get medication. I could go on but you all get the point. Well I have chronic pain and I need medication. When I get medicine I’m not high and I feel relief somewhat of the pain. Please give the Drs. back their dignity that they always stood by. The Hippocratic oath “Thou shall do no harm” let the Drs. be Drs. again and the patients be patients again, without worries from the government.
I’ve been through ganglion blocks, numbing injections to break cycle of pain, point injection, spinel blocks, physical therapy, nerve blocks, surgeries, nuromuscular therapy, non evasive chiropractor, acupuncture, bio feedback, hypnosis, tens units, not a candidate for spinal stimulator, facet injections and not one has worked for any amount of time.

Joy Hidalgo

Chronic! 24/7/365 X 20+ years. The cause began with untreated arthritis in my knees and progressed to Arthritis virtually in every joint from the neck down. The knees have regressed to the replacement stage, but circumstances will not permit it.
My general pain level ( according to most scales I’ve seen) is an overall 5, and I require drug therapy to maintain THAT level of control: 50mg Tramadol @8 hours; Meloxicam and Gabapenten. I use heat treatment in my neck and shoulders as well as T.E.N S. treatment on my shoulders, neck and lower back. My heart condition and general health limits my medication useage.
The problem I have with describing my pain is deciding WHERE and WHEN the pain level is in a particular body part, i.e. Knees, neck, hands, shoulder, back, etc. Why? Because a static 5 in my back is a sharp 7 in my Left shoulder and if I do any physical exercise, my Left knee is zero cuz it’s numb from the hip down., And my back is a sharp stabbing 8. When I fold clothes on laundry day, my hands are a throbbing 7 and my back is a spasming 8 and my feet are a hot swollen 6.
How does a person explain Grocery Shopping to a doctor? Especially, the walking, the stooping and the reaching; The loading and unloading of a basket and a vehicle and the standing while prepping and putting it away at home.
How does a person explain NOT being able to socialize because of the standing in line or stationary, shaking hands and side stepping into aisles and clapping ( for a performance).
There are also dizziness and balance issues that mess with basic things like house keeping, bathing, and meal preparing. Each activity or action causes an alteration in the levels and locations of pain. How does one express all that to a doctor?

Maureen M.

While I sent my comment with a bit more detail… my Pain is both neuropathic and muscle/soft tissue:
Basically and overall it is:
constant/unrelenting, searing/burning/stabbing in my lumbar and sacrum, and at times into my legs and feet, as well as my neck and shoulders. When it is worse I also have numbness. I have great difficulty sitting, standing and lying down without increased burning and long time effects through the day.
I have permanent parasthesias in my left foot, hip and anterior thigh (which arrived after my first spine surgery. I have had four spine surgeries).
It is also lumbar pressure, painful spine stiffness, and the RSD in my right leg and foot is cold, discolored and feels like it is sitting in a bucket of ice water.

Scott Wiemers

I think it’s important for each person to develop a baseline for use with their doctors. For me, every time I see someone new about the pain, I explain to them that for me, a 10 is the worst pain I ever had. That was about a year after I tore a disc in my back playing in the snow with my nephews. After a year of traveling (flying, driving, standing all day teaching) the tear opened up and i had free floating fragments of intra-disc material floating in my spine. My left leg started to go numb and I began to lose all function below the knee. Within a short time, i could barely move. For me, a 10 was when I tried to get out of bed, to stand, and I collapsed-literally-from the pain. My entire body was electrified with pain, my entire torso wracked with spasms. I literally crawled out of bed onto all fours, crawled down the hallway, down the stairs and out to the car. I had surgery a few weeks later. That was the beginning of a cascade degeneration of my spine. And that is just the beginning. Pain ranges from being a medium ache penetrating through my lower back, knee, elbow, hands, feet… To terrible sharp pains like knives stabbing deep into my body. Pulling sensations from sciatica/radiculopathy down to my heel or through my elbow and down to my fingertips. A deep ache in my bones in my legs, my leg feels like a solid mass of pain. No differentiation from the skin on the medial side through to the skin on the lateral side. When I stand for more than a few minutes, arthritic pain begins in my feet and radiates up my legs to my knees. It is an intense ache that immediately hits a 9.9 on the pain scale. No one, no doctor understands the pain. It is completely debilitating and when combined with the arthritis in most of my joints and the severe spinal degeneration… My life is constant torture, and since this BS “opioid crisis” it has increased 10 fold. If I could have one super power, it would be to be able to inflict (and I choose that word very carefully) the pain that I feel and that anyone else in the world feels on anyone I want. Not because I want to fight crime or anything like that, but because I want to inflict that pain on every single idiot that has attacked my life with their ignorance, causing me to lose the primary mechanism that made me able to spend time with my nephews, to sleep, to walk, to take care of my house… I want to make every person that has no clue what we who live in constant chronic pain go through every day and night.

Susan L.

I have long been concerned about people who cannot (or will not) adequately describe their pain to their doctor. What if a person has been taught/conditioned not to “complain” or to “suck it up”? What if they are “neuro-atypical” and don’t communicate verbally very well? Why should good communication skills or assertiveness be a prerequisite for pain relief? (Not that it helps anymore, but it used to.)

I think our whole medical system is designed to infantilize patients: patients must petition an authority figure, who then decides if the patient’s complaint is valid. Why should a third party decide how much relief is enough? Disgusting.

DEb

My pain is due to fibromyalgia and arthritis. I am never without pain. I take two pain pills a day and that doesn’t even come close to making my pain stop. I would put my average day from 8 to 10. Bad days much higher. My legs and back are so painful that I walk very slowly with a walker or two canes. I had to retire early because I could no longer tolerate the pain. I am 64 years old and it only has gotten worse over time. It’s difficult when inside my head I want to do the things I used to love doing but my body won’t allow it. I am so sick of the “opioid crisis “. Go after the illegal users. Not the responsible people who need pain medication to make it through the day. I am thankful for a Doctor who understands the need and knows I don’t abuse because I use.

Sarah

I am a 61 year old female. I woke up about 18 years ago with what felt like a hot ice pick stabbing me in the thoracic area of the right side of my back. The pain is debilitating and is always the same unless it is properly treated with medications. I tried physical therapy, chiropractic, acupuncture, supplements, massage therapy, a TENS unit, epidural, facet injections and radio frequency ablations with no success…I am not sure that these are all of the medical procedures and alternative procedures I have tried, often repeatedly. And expensively. Currently I am spending $480/month on my third chiropractor, and the pain doctors really push the injections, so I have had a lot of those.

When my first pain doctor properly medicated me, with two long acting opioids and one short acting, my life changed quickly and dramatically for the better. I was a 100% functional wife and mother, running a bank consulting business.

After 15 years of being very stable on those meds, the CDC guidelines came out. I am now reduced down to 75% of the short acting med, and no long term meds. I have sold the business because I couldn’t run it any longer, filed for disability, and now spend most of my time in bed, in pain. The ice pick is back, that aching, throbbing pain that now rules my life, especially if I sit up in a chair or walk. My life is now extremely depressing and I have considered suicide.

I will help your organization in any way possible. Thank you for what you do.

Lynnette S

Like sitting in a small closet with the entire Boston Pops orchestra while they play the 1812 Overture. Complete with cannon bursts.

Wendy G

I have lived with CRPS for several years. My original injury was a simple ankle sprain which eventually required a minor surgery. After surgery I was sent home with a “cast of some sort” which felt like it was crushing my entire foot. I described the pain back then as worse than giving birth! After many unsuccessful attempts to convince doctors that this particular pain was different I gave in and accepted that I was just losing my mind.. years later I’m still not able to bear weight and shuffle between crutches and walker and a cane throughout the day. My pain is constant and described to others by comparing what an old cleaning rag must feel like to be wrung through an old fashioned wringer washer. I feel this pain 24 hours a day 7 days a week so when I’m asked by medical teams to place my pain between one and ten I’m not taken seriously when my response is between 50-100. My symptoms come from within and are often disregarded due the fact that an untrained eye can’t see the discoloration and abnormalities a trained CRPS specialist can see.
Thank you for your willingness to let us people suffering with pain be heard!

Sharon Lynn

I agree it’s difficult to put into words what my pain feels like. Rather, I use it to describe things I can no longer, or barely do. Due to all over osteoarthritis, degenerative disc disease where I have pinched nerves at the L4 -L5 level due to bulging and herniated discs L2-L5, and 2 cervical spine surgeries with titanium plates at the C-3 thru C-7 levels, my right knee that is in need of a total replacement, and my right hip that has been ruined from multiple steroid shots. I have had 2 surgerys on that hip and still have pain every day that feels like my hip is being stabbed from the inside. Also I had 2 ankle surgeries on the right side where I went thru round after round antibiotics as the incision site refused to heal and stayed infected for months. I had an MRI of that ankle just a few days and there are screw marks going thru some of the bone. My entire right leg has pain 24/7. I also have severe neuropathy in both legs from the pinched nerves in my lumbar spine. I don’t understand how something can feel numb, but hurt at the same time. I actually sprained my left ankle once getting off the toilet as I couldn’t feel my foot at all and didn’t realize I stood up on the side of my foot until I nearly fell and I could feel the pain of the sprain. Trying to do chores is frustrating as I can only do things10-15 mins at a time without having to stop and rest. My lower back feels like something is sprained or broken and I have to sit to take the pressure of. I have been grocery shopping, leaning over the front of the cart for support as I felt like my lower back was going to give out and put me on the floor. The pain is a 10+. Hot, burning and feels broken.
My neck and shoulders are mostly aching much of the time with headaches starting at the base of my skull. I don’t feel like I have a neck. Like my head is sitting on my shoulders. Additionally, I have a 2 cm spurred stone imbedded in my left kidney. From time to time it “spins”, trying to move and I have scar tissue from it as it causes bleeding in the kidney. l also havissue with continued steroid shots. I’ve had 6 in the right hip and it will never be right again. 6 others in various parts of the body. After what has happened to my hip, I will NEVER allow one in my spine. One in my right knee that needs the replacement and received NO benefit from it.

I am not able to use NSAIDS as I have a history of leukopenia. I have been to PT many times too. The pain in my back the next day is horrible.

Linda perry

I have lived with chronic pain since my late 20s, I am now 61 years old. I have osteoarthritis, ankylosis spondylolisthesis, Tarlov cyst, facet nerve involvement L4-5 S1. I describe my pain is relentless, in my feet it feels like I am walking on broken bones, my hands especially my right 3 middle fingers are so painful that if I even lightly bump them, try turning the key to the car it’s nauseousing and it’s like I rebroke a bone. My lower back and hips, I have also relentless pain, from numb areas to spasms, increased pain when doing any tasks that require bending or lifting, it’s a deep throbbing pain that stops me in my tracks, I have to stop what I am doing as the pain goes from my back/ hips and down my legs. My knees dislocate without a reason , I have to walk up 2 flights of stairs to my house with my foot rotated inward as far as I can get it to walk until it goes back in place. And I feel all of this even with taking opioid medication 2 x aday with a as needed pain medication that I always need 2 x aday. I wake up in pain and go to sleep in pain. This is my life. Thank you for listening.

Lynda Hillebrenner

I just completed my comment. I’m hoping many others will take advantage of this offer to be heard. If we don’t speak for ourselves, no one will. I was a health care practitioner & educator for over 30 years before my chronic pain, forced me to retire. I have also run a support group for patients with chronic pain. So many are scared & disheartened because no one is looking at our problems. Many have doctors who will no longer prescribe opioids, and now what little of life they could participate in, is gone. Please take a few minutes to be heard!

Jess S.

Excruciating, unrelenting, aching, stabbing, piercing and dehibilating.

Granny

Ed indicated that yyou are seeking words I use tto describe my RSD pain; here goes:

relentless .. always in pain tho the sensations of pain differ for no apparent reaso

it feels like someone is shoving a railroad spike straight down through the tops of my feet, in the middle, just past where the toes attach.

feels luke an electrical storm seen iin the sky is happening i side my feet, legs, up to the hips universally just about 1/4″ below the skin .. the pain spikes up, arcs out and shoots through both feet/legs randomly. It is intense, severe, blazing hot, suck your breath away random pain, often causing a rush to the restroom because of how severe the pain is..it forces vomiting or a bowel movement.

It feels like a campfire is burning bright orange and deep blue about 1/4″ below the skin on both feet, legs, and right hand/arm. Nothing I do makes it stop. Someone else very gently (effleurage) rubbing the affected area can distract me a little, but mostly I have to just wait it out.

My feet often feel like they are caught in a bear trap, with distinctive teeth squashing down sseverelly, about to crush the feet in two, just past where the toes attach to the foot on the ttop of tthe fooot.

I understand the old jokes about “cemwnt shoes” because I feel like I have them, crushing my feet/ankles and making them soooo heavy i can barely lift them.

My feet, ankles, right hand and wrist and arm swell and feel like the skin is 2 sizea too small. They throb relentlessly with each heartbeat .. I hhave often told my doctor that it is like i have a migraine in my feet/hand.

At wake up, my hands do not bend to close .. they only close a little. i is very painful to put my feet on the floor and step on them. It is like my extremeties were all turned black and blue during the night even though they dont look that way.

Pain for me is constant, relentless and life altering. I am only a pale shadow of the woman I used to be. Pain is my constant companion, rarely <8/10.

Sue

I didnt describe my pain because many times ive had a difficult time doing so in detail. So, this I wrote to Ms. Krause:

The use of the scale of 1 to 10 does defy description of what I believe to be relevant. IMO the use of it is much too general. I get very frustrated when I try to describe where my pain is, the type of pain (ex. dull or sharp) and how its interferes with the quality of my life; while many times they continue to insist on a scale of 1 to 10. In my case, Im attempting to ease my mind and determine if it could be related to cancer or not. Many times, I feel like symptoms that might not be related are ignored and not further looked into; because of a cancer. Ive had Doctors say; “well you do have cancer” I consider that dismissive.

Ive gotten to the point, when they ask me to describe my pain on a scale of 1 to 10, I just say; “with or without percocet”?? Then they insist on the level of pain right at the moment. I give a number with the percocet and without and ask them to put that in their notes. When I go to the Doctor I make sure I have had percocet within the hour of the appt; because I dont want to be uncomfortable at the appointment. Its difficult enough to understand and remember everything said when your feeling well.

Dianne L

I live with chronic pain. Most of the time, I simply take my NSAID medication and go about my day and deal with the pain not dulled by the NSAID. Why? Pain, especially in a joint, is a constant reminder to not do something more to injure the part that hurts. I have issues with my lower back, as well, but I apply the same “rule” to that situation. Pain is the signal to stop before more harm is done. Those steps keep my pain in check, most of the time, allowing me to do what I need to do each day. And then there are those days when just getting out of bed is more than I can handle… I do have medications that can be taken, but I am at the point of being afraid to use them because I will not be able to get them renewed. That is a sad commentary on the medical care available in the USA since Obama began the restrictions using Obama Care as the pattern for the medical practitioners and the various insurance plans, up to an including Medicare and all other government funded plans. There has been a slow erosion of what services will be covered and new restrictions on the Part D portion of Medicare. Thankfully, I do not need Part D from Medicare or any of its private insurers. What we need is more common sense in the form of discretion. Doctors have been trained to use medications of all types to alleviate pain. Allow our doctors to do what they were trained to do. Most will not over-prescribe opioids because they know the risks. Those who do over-prescribe can (should?) be monitored via the Part D carriers.

Jason Dauenhauer

A 10 is a 4-6 mm kidney stone moving through the ureter. Close to it is serious cramping in legs, back, hamstrings, etc – likely an 8. Some nerve pain I’ve had can start as a 4 or 5 and rise to a 10. The only doctor I’ve had that had a kidney stone is my Pain Management Doctor. I am fortunate in that he agrees that is a 10 so we have some common ground for measuring pain. Overall, I hate the scale, I don’t know if it’s a 4,5,6,7 only if 8 or 10, everything else is either a 5 or a 2 in my book – headaches, other aches included. I also hate the descriptions, burning, stabbing, dull, throbbing – how about a 10 is all of the above and is all consuming pain that turns your stomach and drives you to find relief.

Jeannette

Where do I sent my comments?

marilyn wright

It is hard to describe my pain at times. I have chronic nerve damage to my left leg from the nerves being pinched too long. It starts with pain in low back then leg starts having sharp stabbing, sometimes electric pain then to numb with weakness. My neck pain feels like Im in a vice grip with someone twisting & tearing from shoulder up to head. I have constant throbbing terrible headaches with my head pounding. I’ve had 3 hip surgeries 2 being THE. Now 10 years into that the pain in my hips keeps me awake a lot during sleep hours because pain has gotten so bad again i can’t lay on my sides very long. Can’t sleep on my back due to pain numbness during night. Once my PM doc started me on my present “opioid” medicine 3 times daily I could work a part time sedentary job. Now he’s scared & has started reducing medicine. I may not be able to continue working! Something that will financially ruin me. I barely make ends meet now. Someone who can help PLEASE LISTEN to chronic pain patients. I have gone through this since 1997. Thank you

Gabby

Burning,stinging,throbbing,fire,ttender to the touch

Kat Koe

There wasn’t any link in the article to click on to leave my comment so this is the only place to post it:

It’s important to know I have have trigeminal neuralgia type 2 (TN2) aka the “suicide disease” and the excruciating and horrific pain I have effects the entire left side of my face including my frontal head, forehead, left eye, nose, cheek, lip, mouth, teeth, gums, tongue and chin. I’m unable to eat using the left side of my mouth as it’s too painful. TN2 also caused blindness in my left eye, due to the numbness. The excruciating, horrific pain I have from TN2 isn’t comparable to a toothache, kidney stone, migraine, or giving birth without medication. The damaged trigeminal nerve in my brain is responsible for the sensations to the face. It feels like my face is on fire, hot iron, being stabbed over and over by an ice pick, being ripped, pulled and gnawed, digging with an ice pick, electric, live shocks, feelings of a frozen ice stuck on my face and won’t come off, by day’s end, opening and closing my left eye feels like a sword is cutting and digging into it. All of this excruciating and horrific pain is at the same time, it never stops, it’s with me all the time, every second of every day 24/7/365 for the past 14 years.

Drew P.

Most days I am a 7 and that goes up to a 8 or 9 when I need to take my pain medication. I have broke my wrist and didnt know it because I am so use to being in pain all of the time. My blood pressure is always up and I have to take amlodipine daily to control it due to pain. My pain is usually a burning, pins and needles type of pain, but when I am late taking medication my arm and leg contract and become difficult to use. My pain is from a brain tumor in my Thalamus that was removed in 2008. Scar tissue from the surgery turned on my Thalamus’ pain signals according to my Drs at Duke. I expect to be on pain medication for the rest of my life and I wouldn’t wish this torture on anyone.

Susan Hutcheson

it is very hard to write the pain 1 to 10 is a variable number from person to person I can’t write my pain on that scale I raped my pain daily today I feel very tense in my shoulder tight. Mayfield retracted talking about the tendon the worst time in my day is the first thing in the morning after sleeping it’s hard to sleep on my right shoulder today it’s overcast I’m trying to eliminate or include if the rain has any effect on the arthritis in my shoulder in my belief it does pain I have to rate from day-to-day the one to ten scale does not work for me if it does it goes beyond to 10 that’s when I have to take my medication several times a day so it can relax and I can try to be pain free I wish there was another alternative then just masking the pain with. With the surgery I had they told me it would take up to two years to actually recover and feel back to normal if I’ve only been 6 months out and it’s a surgery that you got to give your life up for that. Of time to recover and therapy. Thank you

Susan Hutcheson

Pain how to describe there’s too many words to describe how one’s pain is as a common word there’s too many definitions of my vocabulary. it feels like there’s a pair of vice grips on my shoulder that I had a arthroscopy total shoulder replacement the muscle seems to lock up at times. I cannot describe pain on a one-to-ten basis because it’s a variable number. is my pain so strong because of my two major elements in my body because of my arm needing more attention and I’m guarding it I have to have massages and hot showers just leave it in the first thing in the morning. My spondylosis feels like it’s twisting my body which is excruciating intolerable and vicious. I have to lay down on a heating pad to get it to calm down. Pain is undescribable a word thank you. it is also hard to explain to one that has never been through such pain as I needing pain medication on a daily basis and a heating pad and ice pack and a TENS unit I have tried multiple things on the market as to prevent using opioids. depending on the amount of pain I have new to route my pain and different aspects of multiple things to do medication heating pad get off my feet lay down. I hope that helps your answer pain is undescribable word when you’re in chronic pain from day today today today today. Thank you

Kelli Davidson

“On fire from the inside out”
It often feels like rubber bands are around my toes.

Donna Corley

Very true.. I hate the 1-10 pain scale. That needs to be changed bc many like myself have a very high pain tolerance can function at a 10 level but anything over the “hurts alot” is really bad… I can even speak when it’s over a “10” so doctors tend to assume your not in that much pain.

Nikki McCuin

I agree that describing pain to your doctor is very subjective. Having suffered for more than 15 years, I have learned to be very specific. I have maybe 1 or 2 days a month where my pain is as low as 5 or 6 on the usual 2 to 10 scale. Most days I am at 7 or 8, meaning the intensity is preventing me from doing most things, but I can leave the house. On days that have me near tears and staying at home either in bed or in my heat and massage recliner. The pain I feel can be the neuropathy from lumbar related disk degeneration, or radiculopathy from the herniated disks in my neck causing the burning and numbness in both hands and feet. As all pain warriors can attest, when pain interrupts your life, scales don’t quite paint the whole picture. Walking, bending, reaching, twisting and grasping are to be avoided!

Steven

Dr, how would you describe your pain treatment presently? Patient, we do not need the Pain Scale any longer. Your reduction in pain medication is killing me! Any questions? Well then, I have one. What is the purpose for this depopulation by genocide? Dr, I lose my license if I do not comply. I’m sorry you have to die. This exchange between doctor and patient is not meant as a satire or melodramatic. This is real life and death for some of us! We as patients are not the problem with the Pain Scale. The problem is someone wants us dead. This is exactly what insurance companies do. They delay the case until the plaintiff is no longer a threat. I personally do not see why the PNR or anyone else can do anything to stop this madness that is already killed so many people. We are human beings not rats that must be eliminated. How are we a threat to anyone Ed? It’s a fair question from someone on the receiving end. We have to do better.

Cynthia

Throbbing, burning, crushing, stabbing use to be at4 on pain meds. They were stopped last ju e now 7-10. Get no compassion or help from my dr or ER.

John Quintner Physician in Pain Medicine

To assist in this long overdue exercise of improving communications between people experiencing persistent pain and their health care professionals, it may be worthwhile first revisiting the definition of pain adopted in 1979 by the IASP (International Association for the Study of Pain): “An unpleasant sensory and emotional experience associated with actual or potential tissue damage, of described in terms of such damage.”

In our opinion, although this definition was a ground-breaking one, it “has ultimately not been conducive to a fuller understanding of the human experience.”

We have recently published an important paper offering a reconsidered definition “that is compatible with the IASP definition but more philosophically sound, biologically relevant, clinically applicable, and meaningful for people experiencing pain and for health care professionals who engage with them.”

Pain is redefined as a “mutually recognisable somatic experience that reflects a person’s apprehension of threat to their bodily or existential integrity.”

Our complete paper is freely available: https://journals.lww.com/painrpts/Fulltext/2018/04000/Reconsidering_the_International_Association_for.3.aspx

Virginia

Great idea! My pain feels like I landed on my hands from 100ft up on top of rocks, then rolled and hit every bone, joint, ligament and tendon on various other objects of nature along the way of a very steep mountain, and ended up on my head forced between a crevice a bit smaller than the size of my skull.
Oh, and by the way, my pain level is I think about a level higher than just A10. TRY AT LEAST A FIFTEEN!!! Thank you.