EDS (Ehlers Danlos Syndrome) and Tailbone Pain

Ehlers Danlos Syndrome (EDS)
  • EDS is a medical condition associated with “loose joints” (joint hyper-mobility) and other problems (loose skin, etc.).
EDS and Tailbone Pain (Coccyx Pain)
  • EDS patients have joint hypermobility, as noted above. This is important, since joint hypermobility is one of the most common causes of coccydynia (even in people without EDS).
  • So, especially in coccydynia (coccyx pain) patients who have EDS it makes sense to assess for hypermobility (looseness, laxity) between the bones of the coccyx.
Xrays to Diagnose Joint Hypermobility at the Coccyx
  • For people with tailbone pain, making an accurate diagnosis is the first step towards treatment.
  • Since tailbone pain typically happens when a person is sitting, it makes sense to do the x-rays while the person is sitting.
  • The tailbone x-rays done while sitting are compared with tailbone x-rays done while standing. Then, the position of the bone can be compared.
  • The overall idea of the sitting-versus-standing x-rays would be to identify whether there are one or more joints that are unstable.
  • Unfortunately, very few radiology centers are familiar or experienced with performing sitting-versus-standing xrays of the coccyx.
Treatment of Tailbone pain in EDS patients
  • Many of the treatments for tailbone pain are the same or similar for people, regardless of whether they have EDS.
  • Cushions may help.
  • Medications by mouth may help.
  • Steroid injections can be done in people with EDS to help relieve acute pain/inflammation at a specific site, but caution is recommended before doing multiple repeated steroid injections in someone with EDS since people with EDS may have worsening joint laxity over time.
  • Meanwhile, other injections such as local anesthetic nerve blocks and nerve ablation can be done in people with EDS, essentially the same way that they are done in people without EDS.
  • Surgical removal of the coccyx (coccygectomy) is typically done only if the other treatments have been tried and have failed to give adequate relief.
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