Chronic Severe Pain Defines Lives of Sarcoidosis Patients, Survey Finds

Chronic Severe Pain Defines Lives of Sarcoidosis Patients, Survey Finds

A large proportion of sarcoidosis patients live with severe chronic pain despite the heavy use of painkillers, including opioids, a recent survey found.

In addition, pain considerably impacts their walking ability, sleep, and enjoyment of life. Based on the survey results, researchers argue that the nerve damage that causes pain in sarcoidosis may be more common than previously acknowledged.

The survey, which included more than 2,700 patients, was conducted by the Foundation for Sarcoidosis Research (FSR), working with the Cleveland Clinic and Araim Pharmaceuticals.

“We felt it was important to understand how sarcoidosis affects the lives of patients, and these new data add to the available evidence regarding the magnitude of the health-related problems that sarcoidosis patients face on a daily basis,” Ginger Spitzer, executive director at FSR, said in a press release.

Among the main survey results was the finding that a majority of patients report having chronic pain of moderate to severe intensity, despite heavy use of opioids and other pain therapies.

Researchers are continuing to analyze the survey data, which also explored issues such as the impact of pain on activities of daily living and quality of life.

“Once our data analyses have been completed, we will present the results to the broader healthcare community, such that both patients and providers share in the important new information this sarcoidosis outreach effort has uncovered,” Spitzer said.

The survey showed that a large proportion of patients stated that pain affected their walking ability, sleep, and enjoyment of life either “quite a lot” or “very much.”

“Given these findings, we hope that patients suffering from rare and orphan diseases like sarcoidosis will be prioritized as part of the national conversation on how to address chronic pain, and the underlying disease that causes it, without relying on medicines with the potential for addiction and harm to patients,” added Spitzer, referring to the country’s heavy use of opioids.

While many patients reported pain, only about one-third said they had been diagnosed with neuropathy, or nerve damage. In sarcoidosis, it is the damage to the nerves that causes pain.

“Given the pathophysiology of the condition, and the large number of patients in chronic pain despite treatment, a sizable number of patients with sarcoidosis may have undiagnosed neuropathy,” said Dan Culver, a sarcoidosis specialist at The Cleveland Clinic.

Culver said that, in addition to pain, the survey showed that a large number of patients showed other signs of nerve damage. Vision and gastrointestinal problems, muscle weakness, sexual dysfunction, and temperature swings may all be caused by damaged nerves.

“I’m very eager to conduct additional analysis on this dataset, as these findings are important in helping to understand the scope and severity of the problem,” Culver said.

“There are no currently approved treatments for sarcoidosis, with physicians prescribing a variety of symptom-directed treatments off-label in an attempt to improve patient quality of life, often with significant side effects,” he said. “These new data underscore the high degree of pain and disability present in sarcoidosis patients, and hopefully will help expedite solutions for this extreme unmet medical need.”


  1. Janice Nicholls says:

    I hope that these findings get shared with the Medical Community in Canada.
    I have been stumbling in the dark for so many years, had to stop work at age 50. I am now a 68 year old female!
    I got diagnosed with Sarcoidosis in the Lungs a few years ago when I started having a hard time breathing. Also, night sweats and a rash on my neck plus swollen glands/nodes in my neck.
    I went off work due to chronic pain and the inability to sit any longer and hold or do anything. In 2007, my left knee was destroyed in 5-6 Months and my knee was set at a 30 degree angle. This happened to my Mom as well. We have Psoriasis in our Family, but as the youngest of ten, I have been the most disabled.
    I am only on opioids and prednesone, which I dislike. I would love to try a Biologic and I am banging my head on a brick wall here in Southern Ontario, Canada, trying to get someone to understand. My constant depression, which I got at an early age and plagues me still, together with anxiety, have held me back being at all assertive or able to describe my agony. What can I do?

  2. Rhonda Gable says:

    I wish my MD would read this article along with all the other specialist I have been to who tells me that Sarcoidosis does not cause pain. I was diagnosed six years ago with a biopsy since my doctors have done no further testing on me for the say my sarcoidosis is historical and not active but yet they can not tell me why now I have gasterparesis 5 years after being diagnosed sarcoidosis. They do not believe a word I say. Refuse to do PET scan to see where all the inflame areas are for I been having palpitations even a heart catherization and several other test with know one even listen when I as for pet scan. I basically have given up on every getting any treatment.I had to keep insisting they give me something for my pain finally after 4 years of arguing they gave me tramadol to take only at night .

  3. Trena says:

    I was diagnosed late last year, I’m seeing a rheumatologist who has put me on a prednisone taper. The side effects are devastating. I am in so much pain I can’t stand to walk, to do simple household chores but with the crackdown on opiates in our area and the ignorance of certain doctors, I get Tylenol for pain and Subutex 8mg twice daily. I have been on this medicine for years and it does not touch my pain. my Sarcoidosis has affected my lungs, lymph nodes, skin, heart, and other organs. The pain is in my joints and I have fibromyalgia. What do you do when you can’t find anyone to help with the horrible pain we suffer with? Is it ethical for doctors to outright refuse pain management? I’m 50 yrs old and this disease is killing me, why can’t I have some relief so that I can have some quality of life before I die?

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