Discover How Arachnoiditis Affects Weight Loss: Essential Insights You Can't Miss!

Arachnoiditis is a rare pain disorder caused by inflammation of the arachnoid, one of the membranes that surrounds and protects the nerves of your spinal cord. While arachnoiditis itself doesn't directly cause weight loss, the condition's symptoms and treatments can lead to unintentional weight changes. This article explores the connection between arachnoiditis and weight loss, delving into the causes, diagnosis, management, and coping strategies.

Understanding Arachnoiditis

Technically, arachnoiditis is a chronic inflammation of the arachnoid layer of the meninges, which are the layers of tissue covering the spinal cord and the brain. Spinal adhesive arachnoidopathy (SAA) is a chronic pathology associated with persistent inflammatory responses in the arachnoid. Adhesive arachnoiditis (AA) is one of the major forms of SAA, with accompanying secondary complications. The arachnoid mater is part of the meninges, which are three layers of membranes that cover and protect your brain and spinal cord (your central nervous system). The arachnoid mater is the middle layer. The other two layers are the dura mater and pia mater. There are three spaces within the meninges:

The epidural space is between your skull and dura mater and the dura mater of your spinal cord and the bones of your vertebral column.
The subdural space is a potential space between your dura mater and your arachnoid mater. It can open when the arachnoid mater separates from the dura mater as a result of trauma, a pathologic process or a lack of cerebrospinal fluid. This can happen with arachnoiditis.
The subarachnoid space is between your arachnoid mater and pia mater. It’s filled with cerebrospinal fluid. Cerebrospinal fluid cushions and protects your brain and spinal cord. Arachnoiditis affects the arachnoid layer somewhere along your spinal cord, not your brain.

Causes and Risk Factors

Several factors can contribute to the development of arachnoiditis, although the exact causes are not always clear. Major etiologies included trauma (22.7%), infection (17.73%), surgery (15.37%), and hemorrhage (13.48%). Surgeries were mainly various types of spinal surgery (67.69%), and infections were most common with meningitis (66.67%), which could be classified as bacterial (80.00%), viral (4.00%), and parasitic meningitis (16.00%). Bacterial meningitis was mostly associated with tuberculosis meningitis, accounting for approximately 62% of cases. The subarachnoid hemorrhage (SAH) (91.23%) was the most frequent type of hemorrhage. Anesthesia sites were divided into epidural (56.52%), spinal (30.43%), and paravertebral (13.04%), while spinal injection procedures included intrathecal (76.92%) and epidural (23.08%). There were also some rare autoimmune‐related causes (1.18%) that might have contributed to the development of SAA. These include:

Prior Spinal Surgery: Spinal surgery, while often necessary, can sometimes trigger an inflammatory response leading to arachnoiditis. When scar tissue is deposited over these layers, as often occurs after back surgery, it clumps together and compresses nerve roots, cutting off blood flow.
Spinal Trauma: Injuries to the spine, even seemingly minor ones, can potentially initiate inflammation. An acute trauma (a common trigger event) may lead to a ‘shock syndrome’ that causes outpouring of the entire autonomic nervous system, and via its connections with greater limbic system (via blood or CSF-note that the greater limbic system is actually surrounded by the CSF ventricular and arachnoidal spaces, which consists of thalamus, hypothalamus, amygdala, hippocampus, basal forebrain nuclei, and classical reticular system), central sensitization process can take place and lead to various neurocognitive symptoms.
Spinal Infections: Infections near or within the spinal canal can inflame the arachnoid membranes. Meningitis can affect all central neural tissues, which may result in serious central nervous system lesions.
Other factors: Other causes of SAA were trauma (22.70%), infection (17.73%), surgery (15.37%), hemorrhage (13.48%), Chiari malformation type I (5.67%), spinal anesthesia (5.44%), myelography (4.49%), herniated disks and spinal stenosis (3.55%), spinal injections (3.07%), idiopathic AA (2.84%), familial AA (2.36%), and other types of causes (4.49%).

It's important to note that not everyone undergoing spinal surgery or experiencing trauma develops arachnoiditis. Research is ongoing to understand the precise reasons for this variability.

Symptoms of Arachnoiditis

Arachnoiditis can create extensive scarring of the meninges, which can lead to a debilitating, constant burning pain usually mixed with sharp, stabbing pains. It occurs mainly in the limbs and lower back but can spread up the spine and through the arms. Adhesive arachnoiditis (AA) is a spinal canal inflammatory disease that can flare or progress at any time. Adhesive arachnoiditis causes severe stinging, “burning” pain and neurological problems. It most commonly affects the nerves of your lumbar (low back) and thoracic spine (middle back). It rarely affects your entire spine. Patients with AA often presented with pain symptoms in different locations (37.50%), abnormal nerve sensations in related dermatomes (39.58%), and abnormal motor function (78.75%). The primary sites of pain were the lower back (43.33%), leg (12.22%), and sciatica (17.22%). Abnormal nerve sensations in related dermatomes mainly manifested as initial abnormalities such as paresthesia (e.g., numbness and tingling sensations) were experienced by 47.89% of patients but as the disease progressed, more severe conditions such as dysesthesia (e.g., burning and electrical sensations) (20.53%), hyperalgesia (26.32%), or even loss of sensation (5.26%) were observed in these patients. Abnormalities in motor function were manifested by weakness of the limbs (23.81%), gait disturbances (24.87%), and paralysis (36.77%). In lower limbs, bilateral weakness was the most predominant (45.56%), followed by unilateral weakness (22.22%). Unilateral partial paralysis was most common in paralytic patients (61.15%), followed by partial paralysis of the extremities (18.71%). Inflammatory adhesions in the lumbosacral region might involve the cauda equina nerve root, resulting in bladder incontinence (24.34%) and fecal incontinence (15.34%) in SAA patients. A very small number of patients (0.53%) were presented with sexual dysfunctions. Patients with inflammatory adhesions of the arachnoid also reported other clinical manifestations such as headache (25.81%), loss of temperature sensation (16.13%), and muscle atrophy under chronic conditions (11.29%). Neurological problems often accompany arachnoiditis, leading to muscle jerks, spasms and muscle weakness, which in turn leads to bladder, bowel and sexual dysfunction, a swelling of the limbs, and cold extremities from poor circulation, as well as fatigue, malaise, depression, stress, loss of memory, muddled thinking, osteoporosis, weight gain and poor sleeping habits. Numbness in different parts of the body may also be experienced, and the body may be very sensitive to touch. Beyond these, other symptoms include:

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Severe Back Pain: Often the most prominent symptom, this pain is persistent and can be incapacitating.
Neurological Deficits: Numbness, tingling, weakness, or even paralysis, affecting various body parts, depending on the affected nerves.
Bowel/Bladder Dysfunction: Problems with bowel or bladder control are serious and distressing symptoms.
Chronic Fatigue: Extreme tiredness and lack of energy severely impact daily life.
Emotional Distress: Depression and anxiety are common emotional responses to living with chronic pain.

The symptom presentation varies widely between individuals, ranging from mild discomfort to severe disability. The course of this condition remains highly variable since arachnoiditis can be either a static (stays the same) or progressive (gets worse over time) disease.

Diagnosing Arachnoiditis

Diagnosing arachnoiditis is challenging due to the absence of a single, definitive test. The common pathological diagnoses of SAA were AA (80.82%), AA combined with arachnoid cyst (12.79%), arachnoid calcification/scars (3.43%), and arachnoid web/fibrosis (2.97%). More than 30% of SAA patients developed secondary syringomyelia. Patients with SAA usually waited for 12 (3-36) months until the diagnosis was confirmed. Almost 75% of patients suffered from SAA for the first time, while others had recurrent SAA. During the screening stage of SAA, magnetic resonance imaging (MRI) was the most common (79.87%) imaging method due to its noninvasive and relative‐fast scanning time features. To confirm the diagnosis of SAA, some patients even opted for standard invasive methods, such as myelograms (25.00%), diagnostic surgery (4.20%), post‐surgery histopathological examination (1.77%), and fiberscope (1.33%). However, MRI was the mainstream method in 67.48% of cases to confirm the SAA diagnosis. Diagnosis involves a process of elimination, combining:

Thorough Medical History: A comprehensive review of your symptoms, past medical experiences, and potential risk factors.
Physical Examination: Assessment of range of motion, reflexes, muscle strength, sensation, and signs of neurological impairment.
Imaging Studies: MRI scans are crucial in identifying abnormalities, alongside other imaging modalities like CT myelography in some cases. Moreover, high‐resolution and specific MRI sequences particularly designed for detecting cerebrospinal fluid (CSF) obstruction were also introduced to diagnose SAA. A case series of five patients used time‐spatial labeling inversion pulse MRI (T‐SLIP MRI) and another case series of seven patients utilized the three‐dimensional constructive interference in steady‐state MRI (3D‐CISS MRI) for SAA diagnosis.
Differential Diagnosis: Ruling out other conditions that share similar symptoms is essential.

This diagnostic process can be time-consuming and may require consultations with multiple specialists.

The Connection Between Arachnoiditis and Weight Loss

The weight loss associated with arachnoiditis is rarely intentional. It's typically an unintended consequence of the condition's widespread effects:

Intense Pain: Severe, persistent back pain can make eating uncomfortable and daunting. The mere thought of meal preparation can be overwhelming when in constant discomfort.
Debilitating Fatigue: Chronic fatigue, a common arachnoiditis symptom, leaves you depleted of energy, making even simple tasks like eating seem impossible.
Severely Limited Mobility: Pain and stiffness can severely restrict movement, making grocery shopping and cooking incredibly difficult.
Medication Side Effects: Many pain medications prescribed for arachnoiditis can cause weight loss as a side effect.
Depression and Anxiety: Living with chronic pain often leads to depression and anxiety, which can significantly affect appetite and lead to further weight loss.

This interplay creates a vicious cycle: pain hinders eating, leading to weight loss, which then amplifies fatigue and pain, further complicating nutrition.

Managing Arachnoiditis and Addressing Weight Loss

While there's no cure for arachnoiditis, managing the condition focuses on alleviating symptoms and improving quality of life. It is our hope that you will find the tools for success here.

Multifaceted Treatment Approaches

Managing adhesive arachnoiditis syndrome requires multidisciplinary approach. While we continue our path to ensuring that Arachnoiditis is studied and recognized by the medical community, we must do what we can to educate ourselves and our healthcare providers on the most current methods to treating Arachnoiditis. Treatment encompasses pharmacological, behavioral, cognitive and physical therapies, hormonal, nutritional, acupuncture, and rarely surgery such as adhesiolysis, shunting or nerve, cord, or brain stimulation surgery. Most patients preferred surgery in treating SAA (359/392; 91.6%), while a few cases reported conservative treatments (33/392; 8.4%). The overall post‐surgery recovery rate (84.1%) was significantly higher than that of the post‐conservative treatment recovery rate (51.5%) (p < 0.001). Subgroup analysis of different pathological locations showed that SAA patients with lesions in the cervical region had the highest post‐surgery recovery rate compared with that of either thoracic, lumbar, or sacrococcygeal regions (p = 0.016). The pharmacological treatment can be low-dose naltrexone (2-6 mg nightly), which is thought to prevent microglia activation. Pregabalin (Lyrica) is another option but it tends to cause weight gain and water retention side effects. Other medications are duloxetine (Cymbalta), milnacipran (Savella), and amitriptyline, which can potentiate the analgesic effect of opioids.

Pain Management: Utilizing medications (opioids, non-opioids, and others), physical therapies, and nerve blocks tailored to individual needs.
Physical Therapy: Improving mobility, flexibility, and strength to mitigate pain and improve function. Physiotherapy may not be good to the patient because of the muscles tenderness and pain involving some joints.
Surgery (in select cases): Surgery is rarely considered, only as a last resort for severe cases unresponsive to other treatments.If accompanied by disk herniation, SAA can also be treated by lateral corpectomy.
Alternative Therapies: Some individuals find relief through acupuncture, massage, or chiropractic care.

A personalized treatment plan, developed in close collaboration with your doctor, is essential.

Nutritional Support

The best diet for Arachnoiditis is a low carb, high protein diet. Maintain a balanced diet, possibly adjusting to smaller, more frequent meals to manage discomfort. For lunch I’ll usually eat fresh salmon cooked in olive oil. Sometimes it’s in the form of tacos with cilantro and cheese. Sometimes I’ll add some other meat, usually a little grass fed beef if I have some leftovers from other meals. I’ll also usually have a piece of keto toast for lunch with butter. For dinner it’s usually some form of grass-fed beef: ground beef chili, ribeye with eggs, NY strip with eggs. Sometimes a side salad. Occasionally I’ll have chicken instead of beef. But never any kind if carb loaded side and definitely no sugar anywhere. Throughout the day I might snack on some keto toast or cheese or sweet keto snacks - quest and choc zero make some great products that are sweetened with monk fruit instead of sugar. Consult a nutritionist for personalized dietary advice.

Supplements and Herbal Remedies

If you're uncertain about where to begin, Dr. Forest Tennant's Bulletin (#15) on Three-Component Treatment to Tackle AA is an excellent starting point for managing Arachnoiditis at any stage. This treatment combines prescription medications and supplements to address inflammation, tissue regeneration, and pain control.

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Palmitoylethanolamide (PEA): Palmitoylethanolamide (PEA) belong to endocannabinoid family, a group of fatty acid amides. PEA has been proven to have analgesic and anti-inflammatory activity and has been used in several controlled studies focused on the management of chronic pain among adult patients with different underlying clinical conditions. Many Arachnoiditis patients have found this supplement beneficial to control neuro-inflammation. It's recommended to take along with luteolin and can be found on Amazon.
CBD: Since there's so much information on the internet, I won't go into a lot of detail, but many people find relief from the inflammation and pain associated with Arachnoiditis using CBD. It comes in a variety of forms, both topically and edible.
Kratom: Some patients who have had their pain medications discontinued or who are looking for an alternative have turned to Kratom.

Addressing Weight Loss

Nutritional Counseling: Work with a registered dietitian or nutritionist to develop a personalized meal plan that addresses nutritional deficiencies and promotes healthy weight gain.
Appetite Stimulants: In some cases, medications to stimulate appetite may be considered under medical supervision.
Smaller, Frequent Meals: Eating smaller meals more frequently throughout the day can be easier to manage than large meals, especially when dealing with pain or fatigue.
Nutrient-Dense Foods: Focus on consuming nutrient-dense foods that provide essential vitamins, minerals, and calories.

Other strategies for coping and well-being

Gentle Physical Activity: Engage in regular, gentle movement like walking, swimming, or yoga, based on your ability. Listen to your body and avoid activities that worsen pain.
Emotional Support: Address depression and anxiety through professional mental health support and peer support groups.
Medication Management: Collaborate with your doctor to effectively manage medication side effects, including weight loss.
Stress Reduction: Practice stress reduction techniques such as meditation, deep breathing, or spending time in nature.

Important Considerations

Blood Hormone Levels: Before starting any hormone supplements, it is recommended to consult with your physician and have your blood hormone levels tested. This is crucial as chronic pain can deplete the endocrine system, and the tests will check how effectively it is working. The recommended hormone test includes cortisol, DHEA, pregnenolone, and testosterone. In addition, the Inflammatory Markers blood test should include ESR, CRP, and cytokines. It's important to note that a hormone deficiency may cause increased impairments and pain, while an elevated inflammatory marker calls for more aggressive control of spinal canal inflammation. As always, consult your physician before taking any new vitamins or supplements.
Implanted Medical Devices: Please read bulletin 68 and this article, Pain Pump Do's and Don'ts and Things They Won't Tell You before considering risky invasive treatment options as they should only be considered as a last resort.
ESI'S and Epidurals: Epidural and epidural Corticosteroid Injections (ESI) are a no-no for Arachnoiditis patients. The FDA issued a black box warning, the strongest warning they issue, warning about the side effects, including Arachnoiditis. It's left up to the physician who is giving the injections to explain the warning to you, and they rarely do.

Research and Future Directions

Ongoing research into arachnoiditis offers much hope:

Improved Diagnostic Tools: Research is focused on developing accurate and early diagnostic tests to improve timely interventions.
Novel Treatments: Scientists actively explore new treatments targeting the underlying inflammation and symptomatic relief.
Increased Awareness: Raising awareness among healthcare professionals is vital for earlier diagnosis and appropriate management.

Continued research, advocacy, and collaboration are essential for improving the lives of individuals living with arachnoiditis.

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