Symptoms

Observed by patient

This page lists the Eosinophilic Fasciitis symptoms observed by patients and revealed by tests. Symptoms change as the disease progresses. Eosinophilic Fasciitis patients posting online list these BODY parts affected. The list below is more descriptive. Tiredness, loss of mobility, hardened skin, stiffness in joints, edema, carpal tunnel, are about the most frequent complaints by EF patients posting online. Around 30% complain of weight loss. The groove sign and peau d’orange on arms and legs are very suggestive of EF. The trunk may also be affected. The face and neck are mentioned by fewer patients.

  • Tiredness
  • Loss of strength
  • Hardness of skin on arms and legs (induration)
  • Prayer sign (cannot press hands flat together)
  • Cannot close hands tightly to make a fist
  • Numbness and tingling in hands (carpal tunnel syndrome)
  • Swollen hands, feet, ankles (edema)
  • Pain and tenderness in affected areas
  • Shiny skin over affected areas
  • Darkened patches on skin
  • Groove signs on arms or legs
  • Peau d’orange on arms or legs
  • Cannot fully straighten arms (reduced extension)
  • Cannot fully straighten legs (reduced extension)
  • Cannot bend elbows and knees as much as before (reduced flexion)
  • Cannot move wrists and ankles as much as before (reduced flexion)
  • Difficulty swallowing
  • Restricted jaw movement
  • Tightness around chest
  • Raspy breathing while asleep
  • Muscle cramps
  • Difficulty getting dressed
  • Difficulty with washing
  • Difficulty getting in and out of bath
  • Difficulty cleaning after bowel motion
  • Difficulty ascending and descending stairs
  • Uncomfortable sitting on hard surface (when loss of weight)
  • Cannot stoop to pick up from the floor
  • Cannot go down on the floor without “flopping down”
  • Cannot reach up high
Revealed by medical checks (symptoms change as the disease progresses)
  • Blood tests may show these distinctive results (see the Studies page)
    • Peripheral blood eosinophilia (depends on stage of disease)
    • Hypergammaglobulinemia
    • Elevated erythrocyte sedimentation rate (ESR)
    • Elevated aldolase levels [1]
  • Raynaud’s phenomenon generally absent (noted in virtually all the literature)
  • MRI scan shows changes in the muscle fascia [2] [3] [4]
  • Biopsy shows thickened, sclerotic, inflamed fascia and other symptoms (noted in virtually all the literature)
  • Other less specific symptoms are mentioned in the medical literature
References

[1]  2014 – Eosinophilic fasciitis: use of elevated aldolase in diagnosing and managing, Nashel, Boston, Massachusetts, USA [pdf]
[2]  2015 – Eosinophilic fasciitis: diagnosis of fasciae abnormalities using MR imaging, Belgium & France [pdf]
[3]  2012 – Eosinophilic fasciitis: Lebeaux & Sène, Paris Diderot University, France [pdf]
[4] 2008 – Eosinophilic fasciitis: report of 12 cases and review of the literature, Thomas Jefferson University, Philadelphia, Pennsylvania, USA [pdf]

[updated: 2023-02-05]