Agony: A Symphony of Aches
Pain throws down the gauntlet the moment I wake up in the morning. As I’m lying in bed, taking stock of my symphony of aches, pain sends its troops with a message: “Pull the covers back up and maybe we’ll show you mercy. But we make no promises if you get out of this bed.”
One by one, the many fingers of my pain announce themselves like students responding to a teacher taking attendance. Stinging, burning hands: “Here.” Stiff, achy, throbbing knees, wrists, and shoulders: “We’re all present.” Right hip? “Sorry, I missed a few weeks, but I’m back.” And so it goes until I’ve assessed my aches and made a battle plan. Then I rise again to face another day.
A never-ending battle
Severe chronic pain is common in people with sarcoidosis and impacts the quality of life of patients and their partners.
In the early years of my sarcoidosis, I would wake up some days and notice that something was different: I wasn’t in pain. That hasn’t happened in over a decade, which is why I’ve given up on living pain-free. Instead, I focus on making my pain manageable.
I lose the battle most days, but I’m not alone. An estimated 50 million adults in the U.S. had chronic pain in 2016, and nearly 20 million reported high-impact chronic pain.
Erasing the stigma
Chronic pain takes a physical and psychological toll and is largely misunderstood by the general population. I hope that conversations about chronic pain will continue beyond the month of September — otherwise known as Pain Awareness Month — so that one day, there will be no stigma.
My pain doesn’t make me weak. It doesn’t mean that my threshold or tolerance for pain is lower than yours. It doesn’t mean that I abuse opioids. It means that I struggle to do things that people without chronic pain take for granted — all day, every day.
Managing chronic pain requires a strength that, hopefully, others will never have to know about.
Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to sarcoidosis.
Yes, The Chronic Pain is Unbearable!!! Because, it’s Horrific for Me. it does Severely Impact The way You love Your Life. That is if You even have a Life. Sarcoidosis is a Horrible Disease.
I live in Northern New York, not far from the Canadian border. There is a drug epidemic here and it has completely messed things up for people like us with Sarcoidosis and other chronic diseases that cause high pain. I can't even get help from pain management and the health care system here his a joke! Most times if I go to a doctor I have to explain what Sarcoid is!!! It's hard not to just give up, no one understands how it feels to have your own body turn on you, to have to take steroids so you can breath and those steroids completely ruin your body, your looks! Scars from biopsies and months of terror from mis- diagnosis from cancer to heart dz!! I can't stand the pain, I'm unable to do anything I used to enjoy and there is just no help, no understanding from my doctors at all. What do we Do? How are we supposed to carry on everyday in agony, physically and mentally?? Thanks for sharing, at least I know I'm not alone.
I was diagnosed with pulmonary sarcoidosis a bit over a year ago. About 6 months ago I had a sudden and sever onset of pain in my arms and legs. My forearms, hands, and ankles is where the worst pain is. It’s the worst after I exercise or a long day of work. (I’m a hairstylist and salon owner) My General Dr as well as my Pulmonologist had no clue where the pain was coming from. I had all the blood test. I saw a rheumatologist and she suspects it Sarcoidosis but I honestly don’t think she knows much about it.
She prescribed gabapentin for the nerve pain but I can’t function on it during the day. My general Dr prescribed diclofenac which does seem to take the edge off the pain and stiffness. I’d like to know for sure if this is due to sarcoidosis and if this means my disease is progressing.
Any advice is welcome.
Thanks so much.
I've had Sarcoidosis 20 years with chronic pain. Doctors told me it was all in my mind. Fortunately I met a retired doctor who taught a class on it in the 80's. He showed me in several medical books where it talks about severe chronic pain with Sarcoidosis. He explained that doctors have to read past page 2 to see information on associated chronic pain on page 4. It is described as rheumatoid arthritis and that medicine weakens our immune system even more. Choose your doctor from the amount of time he/she spends on researching Sarcoidosis. They should be able to tell you what's going on not the other way around.