Siddhesh Wagle has been living with a frequently overlooked condition called Anterior Cutaneous Nerve Entrapment Syndrome (ACNES) for over 36 years. It took him 30 years to get this diagnosis after a series of misdiagnosis.
To write a story about one’s struggle with chronic illness is a daunting task. How to start the story becomes the main question, and one procrastinates enough to not write it. But one needs to start somewhere because there is a story to tell, and there are others who are fighting chronic illnesses who might benefit from it, especially when the struggle to find an accurate diagnosis is sometimes worse than the illness. The story can save someone else’s time and effort in getting the right diagnosis—so here I am writing the story of suffering from Anterior Cutaneous Nerve Entrapment Syndrome (ACNES)—which is also my story. This story, I hope, will also help patients suffering from different chronic pain illnesses—to understand the approach to dealing with it.
The problem with ACNES is that it is not known—even among many doctors. Since ACNES is less known, if one suffers from it, they will be misdiagnosed and have to go through multiple tests and treatments that are of no use.
What is ACNES?
ACNES is a nerve entrapment condition where the nerves in the abdomen get entrapped in the abdominal muscles. This causes localized nerve pain which is felt in the front of the abdomen.
In my case, this pain is continuous which I have been experiencing since childhood. There is a threshold below which the pain never goes, but it fluctuates between the threshold and a maximum value. When it is at its maximum value, the pain gets unbearable because of this I am not able to function. Having continuous pain in the abdomen 24/7, I have had been always occupied with constant doctor visits and lab tests. Initially, when a chronic patient starts their journey, it is all about finding answers to questions that are hard to formulate. But a question is there—that of continuous pain. The patient knows there is pain, and all the doctor has to do is believe. But most of the doctors, out of frustration of not being able to come up with an accurate diagnosis—conclude that the patient is lying, and they will use the famous umbrella term— “psychosomatic: pain caused by mental problems rather than physical”. In such a scenario the journey becomes the illness.
I must have seen more than 50 doctors till now and went through various tests such as—CT scan, endoscopy, multiple x-rays, MRI of the brain—and multiple surgeries— appendix and lower back, both of which turned unnecessary. Although the tests are necessary to rule out any other diseases, they become exhausting when there is no end to them—and there is a series of inaccurate diagnoses by various doctors. I have been misdiagnosed by multiple doctors with Irritable Bowel Syndrome (IBS), appendicitis, a bulging disk in my lower back, psychosomatic disorder, and peptic ulcers—the list is long.
Diagnosis and Treatment
When doctors think a person might have ACNES because of their history, they can check by doing a careful physical exam. They'll look for a spot on the body that worsens, especially when the person tightens their abdominal muscles by lifting their head and straightening their legs. This is called Carnett's sign.
Once ACNES is confirmed after the diagnosis, the doctor might recommend the patient to go to a pain specialist. However, in my case, the diagnosis was confirmed by pain specialists, because every other doctor was unaware of ACNES. So at least in India, one should go to a pain specialist who in India is mostly an anesthesiologist.
The pain specialist will try to treat ACNES with anesthetic injections in combination with corticosteroids in the abdominal region. Research says that this procedure is a success in 50% of the cases. Unfortunately, in my case, I belong to the unsuccessful category even after undergoing this procedure two times.
The final option is to undergo surgery where the surgeon cuts the nerve branches that cause the pain, which again research says is successful in approximately 70% of the cases. I have yet not undergone this surgery for two reasons—affordability and uncertainty. Unless I am very sure that the surgery will work, I am not willing to perform it.
The Impact of ACNES
Imagine having a continuous headache since childhood—how will you feel? Even with a few minutes of headache, we feel agitated, frustrated, and tired—we can’t function optimally—we are desperate for the pain to go away. In the case of ACNES, this continuous pain is in the abdomen.
As a child, I used to pull and push my abdominal muscles because I used to have continuous pain. My father observed me doing this and asked the reason for so. So I showed him the location of the pain. From then on, started a series of doctor visits, tests, and unnecessary treatments.
In my experience as a chronic pain patient, I have rarely seen a doctor taking the systemic approach to understand my illness. Most of the diagnoses were done in isolation. The repercussions of such an approach turned out to be severe - loss of many years of getting an accurate diagnosis, and unnecessary tests—leading to avoidable operations and treatments. The psychological stress because of this on top of the chronic pain is immense.
Continuous abdominal pain for years did a lot of harm to me in terms of both physical and psychological trauma. I suffered from depression for years, and am still suffering. Few of the reported cases of ACNES have documented that as soon as the pain due to ACNES disappears, the depression goes too. I have been waiting all my life for the pain to disappear to no avail.
The brain and body for years coping with the pain has now led to fibromyalgia. Now my entire body is in pain—even a small injury leads to unbearable pain. Luckily the rest of the body is not in continuous pain, so it is still manageable. But fatigue, which is one of the symptoms of fibromyalgia leads to loss of work—I am not able to function. Many hours of mine go into sleeping because that is the only time I am not able to feel the pain.
Navigating the Healthcare System
What is one supposed to do when the entire healthcare system is unable to find the right diagnosis? In my case, it was researching on my own. The only research I was conducting was to understand what kind of doctor I should approach. Fortunately, in my case, I was guided by a family friend to a pain specialist. He did the Carnett’s test, and later performed the anesthetic procedure in the abdomen. Getting no relief from the pain, I went to another pain specialist for a second opinion. She also confirmed ACNES and did a similar procedure but this time with an ultrasound-guided anesthetic injection, where they could see the location of the nerve in the abdomen so that the entry of the drug could be precise. Unfortunately, in this case, also I had no relief from the pain. What I found during this experience is that the doctors are there with us only till the procedure. Later they start ignoring you, which is very difficult for a patient. I started losing trust in the system.
Avoiding Alternative Health Therapies
When looking for ways to get relief from chronic pain illnesses such as ACNES, it’s important to completely steer clear of alternative health treatments such as ayurveda, homeopathy, acupuncture, reiki, etc. While you might feel tempted to try such options, these treatments have not been proven to work and could even be harmful. It's best to rely on treatments that medical experts have studied and know to be safe and effective. Always consult with a trusted modern medicine doctor before trying any new treatment.
My father used to take me to all such alternative health practitioners in my childhood. In every case, the practitioners misguided us and failed to come up with an accurate diagnosis. On top of that, they will come up with haphazard theories that are far away from the reality that is ACNES. This led to wasting enormous money. It is better to manage the pain by understanding ACNES and accepting that it is a physiological pain where the nerves are trapped in the abdomen, rather than wasting time on unnecessary treatments.
Coping Strategies
The way I deal with ACNES is by using a four-step process:
- Unconditional acceptance: This is the most difficult step. Accepting continuous pain is not easy. But since it is not going to go anyway, accepting it gives one strength to cope. I guess it comes with time, as we realize that the pain will not go away. Unconditionally accepting ACNES gave me respite from visiting new doctors. It also gave me power over the pain—that I am OK to deal with it.
- Observation: I started observing the pain by detaching it from any emotions such as anger, frustration, and sadness. Although this takes time to master, it helps with pain-related depression. Resting when in too much pain along with observation also helps.
- Hope: I have started living with the hope that I will someday get relief from the pain. At least for me, hope has increased my resilience towards the pain.
- Vision: Having a vision and articulating it with the world helps in finding meaning, which helps in living a meaningful life despite the pain.
Mental Health
Continuous pain takes a toll on mental health. I am depressed most of the time because of the pain. However, the four-step process has helped me deal with depression and made me more productive.
It is necessary to visit a psychiatrist who understands the nuances of chronic pain if you are depressed. They might suggest medication and therapy to cope with the pain. It might take you time to find an ideal psychiatrist who understands your struggle, but some doctors will understand and believe in you. I had to try four psychiatrists before I got comfortable with my current psychiatrist.
Support System
ACNES being an invisible illness, finding support is not easy. Fortunately, for me, my family never doubted my pain, and they were always there for support. Having friends who understand you is also necessary in the coping process. It is difficult to find support in the healthcare system, although if one can afford it, there is therapy—both physical and mental that is available. Although it is rare to find people struggling with ACNES, I have found immense strength in reading about their struggles.
Although I have not found support groups on ACNES or chronic pain, I feel they might help in coping with pain immensely. Sharing and listening to each other’s struggles help in coping.
Why am I Writing this Now?
It’s not easy to talk about an invisible illness openly. I have struggled to come out as a chronic pain survivor and talk about it. But I am doing it now because I hope that others will benefit from my struggle—that this article reaches many who are suffering from ACNES but have no clue what is happening to them. I hope they find good pain specialists and that the anesthetic injections give them permanent relief. I hope someday this illness can be treated through medication. I hope that there is enough research to identify the cause of ACNES.
Let us all hope Anterior Cutaneous Nerve Entrapment Syndrome is eradicated forever.
