It took me decades of studying, training, hard work, and sleepless nights to become a doctor. In approximately 5 years, I became a successful writer, editor, columnist and a whole array of other titles assigned to that type of work. In under 3 seconds, I became a chronic pain patient for the rest of my life.
Around this time last year, I was taking my 2 dogs outdoors when they spotted a squirrel and took off after it. I was pulled off the porch at the end of a leash with my body fully extended in a superman pose and landed on the hard ground in a way that caused a displaced, comminuted proximal humerus (shoulder) fracture. I admit this was the worst pain I ever experienced in my life. My previous notion of 10 out of 10 pain on a pain scale was disrupted and caused me to doubt our whole system for evaluating it. I learned much about acute pain in the next few days and about the shoulder joint. You can’t shift your position or take a deep breath without your shoulder moving, and bringing with it excruciating pain any time I inadvertently did any of these things.
Initially, I was discharged from the ER on heavy duty pain medications, oxycodone I believe, but these caused intractable vomiting, which of course flared the pain. I ended hospitalized for 3 days for dehydration, intractable pain and vomiting while waiting for my shoulder surgery, a new high tech titanium plate which I was assured would help my shoulder heal quicker and more completely. Without the surgery, I was told I may never be able to raise my dominant arm above 90 degrees again.
Anyway, most people experience acute pain at some points in their lives and, while the pain was unbearable and brought me to tears many times a day, it was not unexpected from this type of injury. What I didn’t anticipate was what followed and my gradual evolution into a chronic pain patient. Chronic pain is so much more than just a physical discomfort. It is an emotional ordeal as well and unless you’ve been there, you don’t get it.
I remember getting my sling off after four weeks of wearing that torture device: it is not so cute as it appears on TV or in the movies. It is sweaty and your arm gets stiff. Once I no longer needed it, people immediately started asking me if I was OK and my shoulder was normal then. Well, that was just the beginning of my journey. After almost 8 months of brutal physical therapy, I estimate that I’m 98% back to normal, in motion anyway. However, my shoulder will never be normal again: it has a titanium plate screwed into the joint with ten screws, the biceps was cut and reattached to the bone in a non-normal anatomical location, and I will always have some degree of pain. Some days, I barely notice it and keep going. Other days, I dream that I am crying because my shoulder hurts so bad until I wake up and find myself in tears because my shoulder indeed hurts that bad. What do I say when anyone asks if I’m OK now? I suspect I do what most other chronic pain patients do: I say yes. It is just too hard to explain and the ones who ask really want you to just say yes. They are not prepared to hear anything else.
What did I learn about chronic pain?
- People don’t have patience for your pain. Sometimes they don’t even believe you are in pain. After all, my injury was almost a year ago so why should I still in pain? They don’t get the fact that pain can linger. My orthopedist told me my pain is probably from the metal plate rubbing against the soft tissues when I move it. It most likely is going to be there the rest of my life.
- Even though your joints or body doesn’t work the way it used to, people still expect you to do the things you always do. I remember returning to work after I got my sling off at my 4 week follow-up. One patient berated me for taking a month vacation and how it inconvenienced her, even though there was a covering doctor in the practice and despite the fact that my arm was still pretty dysfunctional.
- You don’t know what you can’t do it until you actually can’t do it. I still can’t swim. My shoulder is just getting back to making that full rotation. If you measure it, the range of motion is close to normal. However, I still feel the weakness in it and it is not where it was before. There were times I would sit in my car crying because I couldn’t do something I needed to do. Did you ever try to push a shopping cart with only your non-dominant arm? Even though I was broken, I still needed to buy food. Lifting grocery bags out of a shopping cart and placing them in the trunk was a regular ordeal. It sometimes still is. I used to love driving but now driving sometimes hurts. Sure, I can do but it often simply hurts.
- You can’t control it. There may be a special event where you absolutely need to be. Yet, that day may be the day your pain attacks you with a vengeance. People again don’t understand that you may not be at your best or even annoyed that you are not at your best. Yes, I can smile and say I’m OK but it doesn’t mean that I actually am.
- Pain is exhausting. The days that hurt more, I get much more tired. It is difficult to force yourself through the pain. It is harder to do simple things that shouldn’t require any effort.
- Chronic pain is emotional. It is very easy to become depressed. When I find something I can’t do, I often just cry. I don’t like to ask anyone for help. And I don’t take pain medications because of the awful side effects they give me. So, I just endure. When Thanksgiving rolled around, I tried to pick up a turkey in the grocery store. I was simply unable to carry that much weight. I abandoned my cart in the store and sat in my car weeping. Every year, I’m the one who cooks the turkey. I felt rather humiliated to tell everyone that I was unable. They were all very gracious when we all went out to a grand buffet, but I felt that it was not the same holiday as we all celebrated.
Over the past year, I’ve improved remarkably. I’m now lifting weights again, very minimal presently, and I feel my strength returning. However, the pain is always there. Most of the time I’m able to cast it out of my mind, but when it rears up its ugly head, I cannot control it. It often happens at inopportune times. And I must submit to it because I’m given no other option.
The CDC tells us that there are over 50 million people in the US living with chronic pain and I am now one of them. In all the accomplishments of my life, overcoming pain has been the hardest and I expect the one goal I will never reach. There are all sorts of inspirational quotes for overcoming pain yet none of them really speaks to or for me. No one can truly understand my experience of pain as I can not appreciate what others really feel. Perhaps, the best we can do for people in chronic pain is meaning it when we ask someone about how they are and not just doing it out of etiquette. And we should care about others’ pain even if they say they are OK because one day we may not be OK. I know, it happened to me in seconds.
(See also my poem about chronic pain: My Dance with Pain.)
Copyright secured by Digiprove © 2019 Linda Girgis, MD, FAAFP
I am just two months into exactly the same injury as you (no operation though), I feel very much like you (constant pain) and I am shocked to read I still have a long way to go. I was hoping for some magic soon, I guess.
Take care of yourself – I do hope you get better and better and better 🙂
Agree
I am a Rheumatologist dealing with pain in my patients for close to 50 years, but then I blew my back out a few weeks ago. whch of course changes one perspective. I avoid narcotics but was surprised to find that Lyrica helped the pain.
Now having had my epidural and doing rehab doing better – but have lost true muscle strength from the nerve injury. Long term rehab ahead.
I tell my patients I understand their issues more now.
Thank you for telling your story. I am so sorry for the horrible experience you went through. I wonder if the orthopedic surgeon told you that the surgery could result in ongoing pain for the rest of your life? I am sorry that you reacted badly to the pain medication you were prescribed, and sorrier still that the doctor you saw didn’t try alternative medications that you might have tolerated while you went through physical therapy.
I had a similar injury. I feel hard while running, fractured my shoulder, had two tendon tears that caused my shoulder to dislocate with the slightest wrong movement, and had a bursitis to complicate the issue. The physical therapy was excruciating, but I got through it with the help of pain medication (no side effects from it). My shoulder is now 100% back to functionality and I have no residual pain at all. I wish I could say the same for my spinal and cervical disk issues.
I am in pain every day of my life. Without medication, I would be unable to care for myself. The medication dulls the pain enough to allow me to function with normal daily tasks that everyone else takes for granted. Access to that medication is being threatened more and more from the CDC, DEA, and government regulations out of a misguided notion that restricting access to pain medication for legitimate pain patients will somehow end the addiction crisis in the US. The facts tell us that these two things are unrelated, except that some pain patients denied access to any medications have opted for dangerous, illegal street drugs to treat their very real pain, so are fueling the business of street drugs in addition to the numbers recreational users.
Chronic pain patients desperately need doctors to stand with us in the fight to make access to opioid medications for appropriate use available. The same politicians and dubious drug rehabilitation stakeholders who keep trying to pass laws to do away with all opioid medications have blood on their hands … the blood of chronic pain patients who have resorted to suicide to end their pain. Please stand with us! As a group, we are unable to march on Washington and few of us can even show up at local “Don’t Punish Pain” rallies in our states because we are largely housebound due to our physical limitations. Every person in this country is one accident or disease away from being one of us. By then, it may well be too late.
https://dontpunishpainrally.com/
Dear Dr Linda, thank you for sharing your story – It helps! I need to ask, are you being denied pain relieving opioids or any other type of controlled substances for your chronic pain?
I know that you wouldn’t prescribe for yourself as this would be considered unethical. I pray that you are not also experiencing this form of discrimination in addition to your pain.
If you are, what can I do to help you, which in turn helps all CPP’s – We are millions in numbers and of course never asked to be part of this group. But we’ve become a family and have bonded because of the common enemy called chronic pain. Sadly, for me at least, I am undermedicated in this current climate of opioid hysteria. I am curious if you now understand that CPP’s can’t exist with any semblance of QUALITY OF LIFE without OPM and other necessary medications that are being denied?
From your story, I see that you had a BAD initial reaction to strong opioids, but in my mind, that doesn’t mean that you possibly have found a less strong medication that takes the edge off on particularly bad DAYS. I imagine that you are still learning your new normal and what that entails for your lifetime – it evolves. Regardless, I wish only the best for you and appreciate the time you took to help the rest of the world in understanding that you never really know something until you experience it yourself.
Sincerely,
Carole Proffitt
Chronic anything is debilitating, not just pain. I was a pain specialist by training, and as an anesthesiologist, I found it depressing and annoying that despite my best attempts, there were still about 25% of patients I couldn’t help. I was trained in a multidisciplinary clinic and was not just a block doc.
Chronic pain (lasting greater than 3 months despite no active pathology) is completely different than acute pain. I’m not talking to you directly, but there are usually modifyers of the pain- early psychological trauma (often latent sexual abuse), drug addiction and drug seeking behaviors, lawyers and lawsuits, etc. While everyone wants some easy fix to their chronic pain (a nerve block, a medicine, a surgical treatment), often these are ineffective.Chronic pain patients tend to become passive with time, and depression and other psychological personality issues complicate matters further.
I developed a chronic cough that’s persisted for 5 years and has been a similar ilk- No diagnosis, many meds tried, many false diagnoses, many turfs to other doctors as the treating physician became frustrated with my story and the lack of success from their well intended treatment modalities.I would cough every 5 minutes, especially in the OR with bovie smoke, cold air, and wearing a mask.Surgeons would joke (how’s your TB doing? How’s the lung cancer today?, Would you like some water, maybe you should try this, get this test, etc- it’s GERD, its sinus, it’s bronchial )believe me, I was thoroughly worked up and nothing came back definitely despite multiple tests, biopsies, interventions, etc) without realizing that to me, the cough was no joke. I developed hemorrhoids, my belly button went from an innie to an outie,and I separated ribs on two occasions. And I endured some degree of depression in being a “medical enigma”. I ended up quitting my career because I could no longer concentrate on the case I was doing, even though I had no adverse patient outcomes. Since leaving the OR environment, my cough has improved, But coughing 6 times per hour is not the result I was hoping for..
It’s very much like the chronic pain paradyme. I’m tired of repeating my story to yet another doctor, who looks at me like I’m making it up, or thinks obviously, one more set of PFTs or another bronch or scan will reveal the truth.
In the end, I’ve just accepted the fact that this is what my life will be and try not to limit myself and my activities to the best of my abilities.
Ditto! Ditto! Ditto! I can commiserate with everything you speak to in your article. The intense acute pain of 7 displaced fractured ribs in 9 places. Unspeakable pain. I didn’t know that I was capable of actually wailing in pain. This followed by failed attempts to do the most mundane daily chores that I could do prior accident without a thought. Then the yearlong healing of bones in odd places, after falling for a confident trauma surgeon’s plan to “plate” my ribs back to their normal anatomical position. 5 surgeries later, with one of them to remove those pesky plates, I have finally come to accept the fact that I too have joined the ranks of the grossly misunderstood chronic pain patient. The judgmental look of the pharmacist when she dispenses the buprenorphine. She thinks it is for a prior heroin addiction or worse. She does not know that it allows me to move around this world a without the oxycodone haze, or the debilitating pain that had me bedridden when I tried to heroically go without pain meds. The whole thing sucks, but I have to admit it has made me a more empathic physician. I am now much less inclined to label someone a “croc”, and be more attuned to the biopsychosocial construct of the chronic pain patient.
Hello Dr Linda,
You may already know this…
There’s an MD on Twitter by the moniker: @toriesepahmd
She started a Facebook group for physicians that you may find helpful. I sincerely hope your situation isn’t as dire as her friend “Jason’s” was…
I feel for you! Less than a year after I got my DD (Doctor of Divinity,) I was diagnosed with colon cancer. Now, STILL sitting in a w/c 23yrs later, I have MORE than 2 dozen diagnoses to my name… this triggered that, which triggered the next thing, which triggered the other thing, etc… etc…
My Drs are frustrated with me because I stopped my 21 prescription meds a year and 5 months ago. STILL here… shit!
Anyway, I know what it’s like to just have so much pain/discomfort that all you can do is cry…… You’re absolutely right, our current pain scale system is inadequate. Sometimes, only the 10 emoticons help. Broken bone pain is different from ruptured appendix pain, or severely mottled/edematous discomfort, or burns, or depression with suicidal ideology, etc….. Just completely different scales.
I wish you all the best!!!
❤❤❤
Thanks for sharing your story! I wish you all the best as well.
Dr. Linda
Dr.Linda,I sympathize with your chronic pain. I am a retired urologist. I had a lt.nephroureterectomy (ironical) in 1987.Now I have a painful oncocytoma in the solitary rt.kidney that has multiple cysts.I can’t be given contrast because of chronic kidney disease with creatinine of 2.28. I am prescribed tramadol by my internist. When asked how I am doing,I answer “OK”. …….
Mike Michaels (anglicised from Mikhail when I emigrate from Egypt in 1969).Best wishes.
Thanks for sharing! I wish you all the best.