▲ 5 r/Autoinflammatory+1 crossposts

Myriad of symptoms

Hello I have a chronic disease for which I get the fibromyalgia diagnose in my country
I have extensive blood work and nothing remarkable shows up the only one astronomical height was
CALPROTECTIN in serum (lab normal value , below 3000 ) and mine was 24000
Th/to, nxp2, pm scl 100- INCONCLUSIVE from the autoimmune panels
WHOLE genome sequencing -negative
EMG-negative
The usual blood work -negative

Some of my symptoms:

Body wide twitching
Innapropiate laughting
Exaggerated gag reflex
Severe scalp hair falling and fragile (also thinning eyebrows )
My body is becoming thinner; both muscle mass and fatty tissue appear to be wasting away (atrophying), which is especially noticeable in my face.
I feel facial tightness, and the contour of my face has changed.
I experience a sensation of pressure/tightness around my eyes and pain when moving my eyes.
I have almost continuous pain in the tissues of my face.
My face appears unhealthy or sickly, and my facial expression seems more fixed and less expressive than before.
My facial features have become more drawn and my face looks noticeably different I have adipose atrophy on my entire face and I think the muscle too although the emg on my face it s normal .
Muscle pain throughout my body, as if I had run a marathon.
My fingernails are brittle, break easily, and no longer grow long.
I feel inflammation throughout my body, with a general feeling of being unwell that fluctuates in intensity.
I have a sensation of acid in my body, as if I had been poisoned.
My ears pop and become blocked everyday it s happening.
The sensation of inflammation can occur anywhere in my body.
I also feel inflammation in my head, with difficulty concentrating, poor memory, and almost continuous headaches,difficulty finding my words
I have eczema on my scalp, around my ears, and on my trunk (torso).
I am still able to do all my usual activities, but with difficulty. I feel as though my entire body has become weaker and is wasting away.
I get tired very quickly and start sweating almost immediately with exertion.
Small granules or bumps appear all over my scalp, similar to the material that comes out of blackheads.
My teeth have become sensitive to cold foods and cold water.
Sometimes I experience abdominal pain, and at the same time I feel warmth/heat and a throbbing or pulsating sensation in my face.
I have difficulty swallowing, with the sensation that food has trouble passing all the way down the esophagus to the stomach, as if the esophagus has narrowed. Also I experience frecquent regurgitation
All my joints and cartilage make sounds, cracking,poping , even my throat and eyes make some trance sounds at movement
I frequently experience abdominal cramps and pain.
I have intermittent constipation.
I really don’t know what it s going on and what and where to go anymore

The only thing that was extremely out of place was calprotectin and I read that it means that the neutrophil or macrophages are activated in some way and it means inflammation in the body , anyone have any idea ?

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u/No_Cheesecake5861 — 8 days ago
▲ 357 r/DiagnoseMe+1 crossposts

26F | 4 years of progressive systemic tissue atrophy following pain | 10 normal EMGs | Extensive workup negative | Undiagnosed

I'm a 26-year-old woman who has been suffering from a progressive, multisystemic illness for 4 years with no diagnosis despite extensive testing. I'm desperately looking for anyone who recognizes this pattern.

THE KEY PATTERN — most important:
Pain appears in an area → intense inflammation and burning → tissue visibly atrophies and weakens in that exact area → process moves elsewhere and repeats. This is happening simultaneously everywhere in my body. The same process is destroying tissue systemically — muscles, fat, connective tissue, orbital tissue, skin, nerves.

HOW IT STARTED (2021):
Started with strange spinal pain, a sensation like a "ball of energy" moving up my spine. Settled between shoulder blades on the right side with intense burning. Then burning spread to hands, then exploded through my entire body — legs, feet, neck. Pain is migratory — moves through the body constantly. Always worse at night and during rest/immobility.

PROGRESSION (2022-2023):
Muscle cramps appeared
Diffuse fasciculations all over body
Progressive muscle thinning and weakness
Severe pain in right eye — felt like being punched
Noticed right eyelid looked droopier
Mild numbness spread across entire left side of face
Tissue changes on left side of face began
Then same process extended to right side of face

CURRENT SYMPTOMS (2025):
Pain/Sensations:
Constant burning in face — feels like acid under the skin, never goes away
Pulsating pain in eyes
Pain on eye movement
Pain when pressing on eyeballs
Severe generalized soft tissue pain everywhere
Burning and heat in all fingers bilaterally — fingers feel warmer
Headache at base of skull with nausea and dizziness
Head feels full, heavy, congested
Neck pain radiating to head
Tissue/Atrophy:
Progressive visible facial volume loss — documented photographically from 2023 to 2025
Eyelids feel "empty underneath"
Bilateral orbital volume loss
Skin looks duller, more elastic on body
Muscle thinning and weakness progressive
Tissues "melt" following the pain — wherever it hurts, tissue disappears
Ocular — very specific:
CRUNCHING/CRACKLING SOUNDS when moving eyes with eyelids closed
Tension in retroorbital musculature when moving eyes
Pain on eye movement and on direct pressure to globes
Bilateral orbital changes visible in photos
Neurological:
Diffuse fasciculations
Muscle cramps
Hyperreflexia in limbs
Body swaying in certain positions
Mild facial numbness left side
Word-finding difficulties
Memory problems
Laughing inappropriately (possible pseudobulbar affect)
Autonomic:
Bilateral ear popping and blockage, recurring
Dysphagia — difficulty swallowing
Sensation of throat narrowing when muscles tense
Generalized joint/cartilage cracking — joints, nose, throat
Systemic:
Constant overwhelming sensation of inflammation throughout body
Constant feeling of illness
Massive hair loss
Eczema — scalp, near ears, chest under breasts, spine — started simultaneously with other symptoms
Same 2 toenails falling off twice in 2 years
Pain on abdominal palpation in specific zones
Facial expression feels "frozen"
Facial muscle tension especially when raising eyebrows

INVESTIGATIONS DONE — ALL NEGATIVE/NORMAL:
Neurological:
10x EMG including needle EMG in masseter, eyebrow, lip, body — ALL NORMAL
Brain MRI + full spine MRI with contrast — NORMAL
Lumbar puncture: oligoclonal bands NEGATIVE, Borrelia NEGATIVE, glucose 50.6, protein 25.2, nucleated elements 1/mm³ — all normal, BBB intact
Autoimmune:
ANA extended panel — NEGATIVE
Systemic sclerosis profile — NEGATIVE
CIC, cryoglobulins — NEGATIVE
ACE — NORMAL
p-ANCA, c-ANCA — NEGATIVE
Nodal/paranodal antibodies — NEGATIVE
VGKC, LGI1, CASPR1/2 — NEGATIVE
Anti-calcium channels P/N type — NEGATIVE
Gangliosides — NEGATIVE
Genetic/Metabolic:
Whole genome sequencing (WGS) — NORMAL
Pompe disease — EXCLUDED
Biopsy:
Muscle biopsy (left vastus lateralis, Sept 2025): mild type II fiber atrophy, rare small angular fibers — "minimal nonspecific changes, no inflammatory, dystrophic, congenital or metabolic myopathy" — pathologist noted: "clinical-pathological and electrophysiological correlations necessary"
Ophthalmology:
Routine eye exam: visual acuity, fundoscopy, intraocular pressure — ALL NORMAL
No dedicated orbital MRI done
No orbital ultrasound done

u/No_Cheesecake5861 — 1 month ago