Could Tarlov Cysts Be an Overlooked Root Cause of Fibromyalgia, ME/CFS, and Immune Dysfunction?

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Since being diagnosed with Tarlov cysts in 2007—primarily in the sacral region—I’ve been exploring the possibility that these fluid-filled sacs may play a more significant role in chronic pain syndromes and immune dysfunction than currently acknowledged. My ongoing focus has been the connection between Tarlov cysts and the dorsal root ganglia, particularly when a cyst is located directly on or near a nerve root.

Tarlov cysts, also known as perineural cysts, form around the spinal nerve roots and are filled with cerebrospinal fluid (CSF). They are most commonly found in the sacral region near the base of the spine but can also occur higher up, including the cervical spine, where they may contribute to neck pain. 

While often dismissed as incidental findings, some patients—myself included—experience debilitating symptoms that clearly correspond with the T 11 and 12 location and behavior of these cysts.

This raises an important and largely unanswered question: Could Tarlov cysts be a contributing factor in conditions such as fibromyalgia (FM), myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), or other disorders involving pain hypersensitivity and immune compromise?

What Happens If a Tarlov Cyst Ruptures?

One scenario I’ve often considered is the rupture of a Tarlov cyst. When these cysts burst, CSF leaks into surrounding tissues, potentially causing a variety of symptoms:

  • Severe positional headaches due to intracranial hypotension (drop in CSF pressure)

  • Lower back pain at the site of the rupture

  • Radicular pain (radiating nerve pain) in the buttocks, legs, or feet

  • Tingling, numbness, or weakness in the lower extremities

  • Changes in bowel or bladder function, depending on nerve involvement

  • Possible meningeal symptoms, like neck stiffness or light sensitivity

Although rupture is not commonly documented, anecdotal and clinical evidence suggests it does happen. Unfortunately, there's little research investigating the longer-term impact of such events on the nervous system or immune response.

How Long Does Recovery Take After a Rupture?

Pain levels after a rupture vary greatly:

  • Immediate phase: Pain is often intense due to acute fluid leakage.

  • First few days to weeks: Symptoms may remain severe but gradually improve as the fluid is absorbed and inflammation subsides.

  • Long-term recovery: While some recover within weeks, others may experience ongoing symptoms—especially if nerve damage or complications occur.

Treatment is typically conservative: rest, pain management, and monitoring. More invasive interventions are considered only when symptoms are persistent and significantly impair function.

Would a Spinal Tap Help After a Tarlov Cyst Rupture?

Some wonder whether a spinal tap (lumbar puncture) could relieve pressure following a Tarlov cyst rupture. While spinal taps are used in conditions like idiopathic intracranial hypertension to reduce CSF pressure, they’re not a standard or widely recommended treatment for Tarlov cysts.

Considerations include:

  • Limited benefit: A spinal tap might temporarily reduce pressure but won’t resolve the underlying cyst pathology.

  • Risks involved: Spinal taps carry potential complications, including infection, bleeding, or worsened headaches.

  • Tailored treatment is essential: Each case varies. Management typically focuses on symptom relief, physical therapy, and sometimes surgical intervention if symptoms are severe and persistent.

Unanswered Questions: The Link to Fibromyalgia and ME/CFS

My longstanding question—especially to Dr. Feigenbaum, a specialist in Tarlov cysts—is whether the fluid within Tarlov cysts might contain infectious agents like viruses or bacteria that could trigger chronic neuroinflammation. This could explain overlapping symptoms in ME/CFS, fibromyalgia, and other disorders where inflammation and nervous system dysfunction are suspected contributors.

Could these cysts, especially when pressing on or involving the dorsal root ganglia, lead to persistent changes in the nervous system, including pain amplification or immune dysregulation? Are some forms of fibromyalgia or ME/CFS not “centralized pain disorders” but actually peripheral, spinal pathologies?

These are the questions that remain largely unexplored by mainstream research.

Conclusion

I’ve also come to realize how fortunate I was that a radiologist at UNMH performed a complete MRI—with and without contrast—which provided a much more detailed and accurate view of my spinal pathology. 

Unfortunately, many patients never receive this level of diagnostic imaging. As a result, Tarlov cysts and similar abnormalities often go undetected. 

Symptoms such as pain triggered by climbing stairs, walking up even a slight hill, or heavy lifting—and in some cases, post-exertional malaise (PEM)—are frequently misdiagnosed, dismissed, or attributed to other conditions. 

In many cases, patients are prescribed only ineffective pain medications, without ever addressing the underlying cause.

I truly wish spinal cysts were more thoroughly investigated.

References:

  Image: https://www.cureus.com/articles/58489-tarlov-cyst-rupture-and-intradural-hemorrhage-mimicking-intraspinal-carcinomatosis#!/

Tarlov Cyst: https://my.clevelandclinic.org/health/diseases/tarlov-cyst

Spinal Meningeal Cysts & Tarlov Cysts: https://www.youtube.com/watch?v=jaWLZqP__n8

Symptomatic Tarlov cysts: A case series and effectiveness of multimodal rehabilitation plus pharmacological treatment 
https://www.elsevier.es/en-revista-neurology-perspectives-17-articulo-symptomatic-tarlov-cysts-a-case-S2667049624000012

© 2000-2025 Sieglinde W. Alexander. All writings by Sieglinde W. Alexander have a fife year copy right. Library of Congress Card Number: LCN 00-192742 ISBN: 0-9703195-0-9  

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