A list of MANY fibro symptoms; I found this very, very helpful :) And, I'm 30+ yrs diagnosed

[Auriel]

I don’t know about you @Rainbow but I feel like hospital visit’s through fibro isn’t really taken seriously (just a feeling I get) you know what I mean?

 

[Rainbow]

I don’t know about you @Rainbow but I feel like hospital visit’s through fibro isn’t really taken seriously (just a feeling I get) you know what I mean?

Indeed I do & am sad to say, that includes visits to the doctor too.

There is some progress being made but it's painfully slow (pun intended).

As I've said before, even though so many lives are so negatively effected by Fibro & in many cases, people are debilitated,
or even destroyed by it, it doesn't attract the research funding that the more 'glamorous' afflictions such as Heart Disease
& Cancer do, nor is it given similar levels of attention on anywhere near any similar level.

Things ARE changing & WILL change for the better given time & people will look back & think how sad it was for us that for generations
our suffering was misdiagnosed, misunderstood & 'swept under the carpet'
but hey look, now we have Fibro Physicians & Experts
& since the internet arrived, we can communicate on forums such as this & are able to uphold & support each other,
which is something previous sufferers didn't have, meaning they must have felt so alone.

We'll get there & meanwhile, each one of us has been, are & will be,
all part of that 'getting there'.

Onwards & upwards! x
(Tomorrow, am a tad too tired right now lol).

 

[sunkacola]

GOSH, Rainbow, what you describe is even worse than it is in the USA! And here I thought we had the worst system. I am so sorry it's so difficult for you.
Good for you to have such a positive attitude toward it all!

 

[notsogrimreaper]

i have about 96 so far of the 215 symptoms

 

[Lemon]

I have so many of these, and thought it must be ms or lupus, which I still suspect is very possible from my symptoms during flares,which are very often. I was recently dx fibro, which was a surprise to me and I appreciate all the great info here

 

[JayCS]

In the "fibromyalgia references" I've compiled in the course of this year, I used this list as a starting point, but to make it more helpful I changed the order to alphabetical PLUS ordered by body parts, leaving out repetitions, things I’ve not heard of much or which are much too specific (e.g. everything “cognitive”!) and ordering things more sensibly (most important ones first…), adding specifications. For starters I say about lists such as these:

• To pinpoint/describe sensations & (eventually) look up likely treatments, not to diagnose FMS.
• Every symptom may be due to something else, so get checked if you want to be sure it isn’t.
• Ordered by relatedness/relevance to FMS (e.g. pain or sleep), which can suggest the order of treatment trials.
• All FMS-symptoms can be “treated” alone, whether locally or generally.

For all of my reference lists you can search online for >fibromyalgia references symptoms triggers treatments jaycs<.
Work not quite finished yet, but pretty complete.

it's the most comprehensive list of FMS I've ever seen.
Very interesting & also a comfort to know that symptoms I couldn't pin down to a cause are all part of FMS,
such as Sinus issues & headaches at night, as well as my heartbeat/pulse loudly throbbing in my ears, which can scare me if I let it.

The list of 251 seems the longest, but not the most useful & it is not scientific like the criteria in the Revised Fibromyalgia Impact Questionnaire (FIQR), 2009, Bennett et al or New Clinical Fibromyalgia Diagnostic Criteria 2010 (ACR?).
It does "cheat" in that the website people just compiled a lot of things they read that fibromites have, which does not mean they are all FM as we have many co-morbidities. And it has loads of repetitions etc.

Definitely a good idea to show it to people who might be doubters.
I do want to inject a word of caution, though. If a new symptom does start up, get it checked by a medical professional. It is so easy for us to attribute everything to FMS but even if the new thing is on the list, it could be caused by something else going on and it is always important to know for sure.

Most definitely!
But as always I'd like to add that my stance to treat every symptom alone has made me able to reduce almost all the peripheral symptoms, leaving mainly the core symptom The Ache (& partly fatigue), which greatly reduces flares and improves my quality of life.
Latest example has been getting my stuffy nose at night down, which I hadn't found a complete solution for for a year (and had made my ENTs suggest a laser operation). CoQ10 is said by some to improve it, but the main thing was to learn to get the room air dryer (based on a study btw) by airing and heating better, instead of more humid, like many think, so I did too.

it doesn't attract the research funding that the more 'glamorous' afflictions such as Heart Disease & Cancer do, nor is it given similar levels of attention...

Just wanna keep reminding that 800+ studies have been done on fibromyalgia every year the last few years, before that 600 for a decade. And there are heck of a lot of other afflictions just as "unattractive" as ours. We aren't the stepchild many think, just cos it's a tough nut to crack.

what you describe is even worse than it is in the USA! And here I thought we had the worst system.

I think both ;-D.

i have about 96 so far of the 215 symptoms

I used to have a similar amount, but careful - it doesn't prove anything... (251, not 215...)

I have so many of these, and thought it must be ms or lupus, which I still suspect is very possible from my symptoms during flares, which are very often.

I agree that alternatives are still possible & should be checked.

 

[JayCS]

Guess I'm pretty finished with re-arranging and adding to the symptom list... - unless you 'd like to suggest an improvement?

Symptom groups:
0. ‘Invisibility’, Chronicity, Flares. 1. Pain 2. Fatigue, 3. Sleep, 4. Psychological, 5. Neurological, 6. Fibro Fog, 7. Body temperature sensation, 8. Sensitivities, 9. GI/IBS, 10. Vision, 11. Urogenital, 12. Skin, 13. Dryness, 14. Lungs, 15. Heart, Blood vessels (16. Hair, 17. Nails, 18. Mouth, 19. Weight)

Spoiler: Click on this for the complete list, grouped and ordered by relatedness/relevance to FMS

0. ‘Invisibility’, Chronicity, Flares
Docs can’t find anything (scans, bloods) - core symptoms 1-4 below plus diagnosis of exclusion.
Docs often don’t know about, acknowledge or understand it.
People incl. friends & partners can’t see anything, don’t understand, see us smiling: “But you look OK.”
Chronic: Longer than 3 months is the definition for FM.
Flares: Phases where the symptoms get worse than usual, due to triggers (see my cause/trigger list).

1. PAIN & stiffness - all over / parts of the body - toe to top
Rheumatology & pain medicine cannot address causes, only suppress symptoms; acupuncture; nutritional supplements, esp. amino acids.
Remember: “Pain caused by Fibromyalgia isn’t a threat” ("Jemima's" ‘radical acceptance’).
Possible treatments: Everything, specifically: Epsom salt-baths (magnesium sulfate)

1.0.1 All over at the same time

(Treatment: Overstraining something: Twist-stretch: twist limbs, back or neck & hold 10-20’’.)
Allodynia = touching pain, cf. hyperalgesia
Ache (esp. limbs)
Feeling run over by a truck=lorry/car/train/rhino/plane/whatever
Feeling like walking in a lead suit… / like the tin can man
Flu-like feeling: heaviness, Ache, fatigue, more pains, rest need, sleep need, sleep long. With or without fever-feeling, sinuses/runny nose (allergy?), headaches (migraines).
Heavy feeling (like treading mud with stones in pockets)
Hyperalgesia = amplified pain, cf. allodynia
Stiffness, morning
Stiffness, all day, after not moving for a while, after overexertion. Cf. stiff person’s/man syndrome (not nec. combined with to pain)
Muscle weakness
Pain moderate to severe
Tender points (≠ trigger points)
Trigger points (≠ tender points)

1.0.2 Certain areas all over, maybe alternating
Specialized physiotherapy, esp. osteopathy, chiropractic, acupressure

“Joint” pain (probably tendons, i.e. tendinomyopathy)
Muscle cramps (bigger area)
Muscle spasms (smaller area)
Muscle pain
Muscle twitching
Pains alternate, seem to move
Sighing, breathing in, etc. frequently (also fatigue, also psychological)
Tensed muscles, unconsciously
Voodoo doll-poking sensation, random places
Weakness (severe) or paralysis of an arm or leg

1.1. Legs

Feet - Plantar arch or heel pain
Thighs
Restless Leg Syndrome = RLS
Hip
Sciatica-like pain (from back down the legs)

1.2. Torso/Trunk

Back pain:
Disk/Discs Degeneration, DDD = Degenerative Disc/Disk Disease
Lower back pain = SI-joint = sacroiliac joint = sacrum and coccyx (tailbone)
Abdomen/belly
Scoliosis (sideways curve)
Hunchback (kyphosis)
Chest
Chest, mimicking heart attack
Ribs - Inflamed Rib Cartilage = Costochondritis
Breasts, lumpy & tender
Collarbone = clavicula
Neck pain

1.3. Arms

Elbow
Weak achy muscles

1.4. Head

Jaw, TMJ syndrome (= temporomandibular joints)
Teeth / tooth / gums
Head - Headache
Scalp Pain (like hair being pulled out)

2. FATIGUE, slowdown of activity
Supplements
Activity level significantly decreased
Fatigue from physical exertion, pain, stress etc.: See my 11 types of fatigue: esp. tiredness, ache, lack of energy, mental; Spoon theory.
Sighing, breathing in, etc. frequently (also pain, also psychological)

3. SLEEP
Sleep lab psychiatrist, sleep lab neurologist, sleep lab pneumologist, multidisciplinary, supplements.

Alertness/energy best late at night
Sleep/wake schedule altered
Awakening frequently
Falling asleep difficult
Staying asleep difficult
Excessive sleeping = Hypersomnia
Hypersomnia = Excessive sleeping
Narcolepsy / Falling asleep at random and sometimes dangerous moments
Sleep pattern light or broken
Muscle spasms/twitches at night
Sleep disturbances
Teeth grinding
Tossing and turning
Un-refreshing or non-restorative sleep
Vivid or disturbing dreams/nightmares

4. PSYCHOLOGICAL / MIND / EMOTIONAL
Psychologist, psychotherapist, empathetic psychiatrist, nutritional supplements.
Doubting it / “Imposter syndrome”
Not accepting it
Overdoing it (dilemma of feeling better & normal during & perhaps for a time directly after it)
Sighing, breathing in, etc. frequently (also fatigue, also pain)

EMOTIONAL, esp. depression (part or consequence), anxiety, incl. PTDS

Depression:
Appetite decreased
Crying frequently / easily
Helpless feeling
Hopeless feeling
Enjoyment, inability to previously enjoyed activities
Mood depressed
Suicidal thoughts / Suicide attempts

Anxiety:
Anxiety or fear when there is no obvious cause
Fear of someone knocking on the door / telephone ringing
Fears, irrational
Panic attacks
Phobias
Self-confidence, lacking; feeling worthless
Social anxiety

Mood:
Awareness of symptoms heightened
Irritability
Mood swings, like anger outbursts, uncontrollable rage, abrupt and/or unpredictable
Overreaction
Personality changes

5. NEUROLOGICAL
Neurologist, supplements
Nerves/Paraesthesia:,
Burning nerves
Crawling, like bugs (formication)
Numbness sensations
Pins and needles
Stinging
Tingling sensations
Voodoo-doll poking (see also pain)

Tinnitus (ringing in one or both ears)
Trembling, tremor
Wrist: Tendons swell & press on nerves: carpal tunnel syndrome, CTS

Not that close to fibro:
Seizures and Seizure-like episodes aren’t FMS (I have them myself)

6. “FIBRO FOG”: 1. Sensations, 2. Cognitive, 3. Speech, 4. Balance, 5. Perception, 6. Coordination
Not easy to separate these areas from one another.
Neurologist, opthalmologist (see 10. Vision & 13. Dryness of the eyes), neuro-ophthalmologist, supplements

Fibro-Fog / Brain fog: Delayed reaction to physical activity or stressful events. Appears like but ≠ adult ADHD.

General sensations:
Confusion
Dizziness, e.g. vertigo
Light-headedness
Spaced out feeling

Cognitive / Thinking unclear, difficulties:
Attention/concentration difficult, easily distraction
Decision-making difficult
Distance-judging difficult (when driving, etc.)
Judging difficult
Orientation (Disorientation) (directional or spatial, really or feeling)
Recognizing (routines, left/right, number/word orders)
Remembering (difficulty remembering, short-term or long-term, losing things, forgetting)

Speech:
Expression difficult (words, numbers)
Speech slowed, stuttering, stammering
Understanding difficult (words, numbers)
Word-finding difficulty/using wrong words.

Perception (Seeing, hearing, smelling):
Not seeing what you’re looking at
Smell hallucinations
Sensitivities → there.

Balance:
Balancing difficult
Walking wobbly

Coordination poor:
Bumping into things
Dropping things frequently
Staggering gait
Stumbling, tripping frequently
Walking clumsily

7. BODY TEMPERATURE SENSATION
Endocrinology, Acupuncture, Acupressure, TCM.
Cold or hot feeling, or alternating
Flu-feeling, cf. Ache, Allodynia (touch pain), Feverishness, Hyperalgesia (amplified pain)
Hands/feet, poor circulation there: Raynaud Syndrome .
Hot flashes = hot flushes
Sweats → Skin

8. SENSITIVITIES / INTOLERANCES
Acupuncture, acupressure, TCM, avoid/alleviate (, allergology).
Alcohol
Allodynia (hypersensitive to touch)
Chemicals in cleaning products, perfumes, etc.
Cold
Foods
Heat
Light sensitivity = photophobia
Noise intolerance
Odors = smells
Sensory overload
Pressure & humidity changes
Sun
Temperature changes
Weather changes
Wind

9. GASTROINTESTINAL (gut: IBS = Irritable Bowel Syndrome; stomach: hyperacidity or hypoacidity?)
Gastroenterology, allergology, supplements, avoid/alleviate.
Abdominal cramps
Appetite decreased
Appetite increased
Bloating
Food cravings (e.g. for carbs) (try an “amino acid questionnaire”)
Constipation frequent (e.g. IBS-C)
Diarrhea frequent (e.g. IBS-D)
GERD = Gastroesophageal reflux disease = Reflux
Heartburn
Intestinal gas
Irritable bowel syndrome = IBS
Nausea
Rectum burning irritation (foods?)
Reflux see GERD
Regurgitation
Stomachache
Stomach burning
Vomiting
Weight gain
Weight loss

10. EYES / VISION poor
eye specialist, oculist, ophthalmologist
Eye pain
Vision blurry, difficulty switching focus
Vision ability changes, frequent changes in ability to see well
Vision poor at night, e.g. driving

11. UROGENITAL pain
Urology, gynecology, supplements.
Bladder pain
Endometriosis
Urination frequent
Impotence / Libido (sex drive) decreased
Irritable bladder, Overactive Bladder (OAB)
Menstrual problems
Pelvic pain
Premenstrual syndrome (PMS) worse
Prostate pain
Urination painful, altho no UTI (= Urinary tract infection)
Vulvodynia

12. SKIN
dermatologist

Bruising easily
Eczema/Dermatitis
Itchy/irritable skin
Psoriasis
Rashes
Scalp pain cf. pain: head.
Scarring easily
Skin hot/dry
Sores

Swellings:
Bumps
Edema
Lipoma
Lumps
Lymph nodes swollen, esp. neck & underarms
Swollen feeling


Sensitivity to the sun
Sweating

13. DRYNESS (Sicca syndrome?)
Rheumatologist, endocrinologist, ophthalmologist, dermatologist.
e.g. for eyes: Various therapies, 4 drop types, other things like intense-pulsed light therapy followed by massage of the eyelids, gua sha, omega-3 fatty acids (flaxseed oil, castor oil eyedrops and acupuncture.

Eyes dry (Sjögren’s?) (itchiness, hurting, stinging, burning, scratchy, stringy mucus, light sensitivity, eye redness, foreign-body sensation, contact lense difficulty, nighttime driving difficulty, watery eyes (as response), blurred vision, eye fatigue…
Mouth dry (Sjögren’s?)
Teeth & gum problems
Throat dry (sore, hoarse, speaking, singing, thirst increased),
Stomach dry (hyperacidic)
Gut dry (constipation),
Skin dry

14. “LUNGS”
Physiotherapy, acupuncture, acupressure, TCM.

Air hungriness/hunger
Breath short with little or no exertion (esp. using arms above the head)
Breathlessness
Gasping for breath

15. “CARDIOVASCULAR” (Heart, blood vessels):
cardiologist, psychologist, relaxation exercises
Blood pressure increased (due to pain?)
Hemorrhoids (piles)
Heart attack-like pain that mimics (costochondritis?)
Heartbeat fluttery
Heartbeat irregular
Heart palpitations
Heartbeat rapid
Pulse loud in ear

16. HAIR
dermatologist, gynecologist, endocrinologist, supplements
Hair dull, listless
Hair: heavy and splitting cuticles
Hair: temporary loss

17. NAILS (praps Psoriatic Arthritis = PsA)
dermatologist, supplements
Nail beds irritated
Nail ridges pronounced
Nails that curve under

18. MOUTH cf. 13. Sicca
dentist
Dental problems
Periodontal (gum) disease
Canker sores, mouth ulcers, e.g. aphthous stomatitis

19. WEIGHT (see 9. Gastrointestinal)
Weight gain, unexplained,
Weight loss, unexplained

 

[JayCS]

Or jump to a symptom group of my same list and click on the "spoiler":

Spoiler: 0. ‘Invisibility’, Chronicity, Flares

Docs can’t find anything (scans, bloods) - core symptoms 1-4 below plus diagnosis of exclusion.
Docs often don’t know about, acknowledge or understand it.
People incl. friends & partners can’t see anything, don’t understand, see us smiling: “But you look OK.”
Chronic: Longer than 3 months is the definition for FM.
Flares: Phases where the symptoms get worse than usual, due to triggers (see my cause/trigger list).

Spoiler: 1. PAIN & stiffness - all over / parts of the body - toe to top

Rheumatology & pain medicine cannot address causes, only suppress symptoms; acupuncture; nutritional supplements, esp. amino acids.
Remember: “Pain caused by Fibromyalgia isn’t a threat” ("Jemima's" ‘radical acceptance’).
Possible treatments: Everything, specifically: Epsom salt-baths (magnesium sulfate)

1.0.1 All over at the same time

(Treatment: Overstraining something: Twist-stretch: twist limbs, back or neck & hold 10-20’’.)
Allodynia = touching pain, cf. hyperalgesia
Ache (esp. limbs)
Feeling run over by a truck=lorry/car/train/rhino/plane/whatever
Feeling like walking in a lead suit… / like the tin can man
Flu-like feeling: heaviness, Ache, fatigue, more pains, rest need, sleep need, sleep long. With or without fever-feeling, sinuses/runny nose (allergy?), headaches (migraines).
Heavy feeling (like treading mud with stones in pockets)
Hyperalgesia = amplified pain, cf. allodynia
Stiffness, morning
Stiffness, all day, after not moving for a while, after overexertion. Cf. stiff person’s/man syndrome (not nec. combined with to pain)
Muscle weakness
Pain moderate to severe
Tender points (≠ trigger points)
Trigger points (≠ tender points)

1.0.2 Certain areas all over, maybe alternating
Specialized physiotherapy, esp. osteopathy, chiropractic, acupressure

“Joint” pain (probably tendons, i.e. tendinomyopathy)
Muscle cramps (bigger area)
Muscle spasms (smaller area)
Muscle pain
Muscle twitching
Pains alternate, seem to move
Sighing, breathing in, etc. frequently (also fatigue, also psychological)
Tensed muscles, unconsciously
Voodoo doll-poking sensation, random places
Weakness (severe) or paralysis of an arm or leg

1.1. Legs

Feet - Plantar arch or heel pain
Thighs
Restless Leg Syndrome = RLS
Hip
Sciatica-like pain (from back down the legs)

1.2. Torso/Trunk

Back pain:
Disk/Discs Degeneration, DDD = Degenerative Disc/Disk Disease
Lower back pain = SI-joint = sacroiliac joint = sacrum and coccyx (tailbone)
Abdomen/belly
Scoliosis (sideways curve)
Hunchback (kyphosis)
Chest
Chest, mimicking heart attack
Ribs - Inflamed Rib Cartilage = Costochondritis
Breasts, lumpy & tender
Collarbone = clavicula
Neck pain

1.3. Arms

Elbow
Weak achy muscles

1.4. Head

Jaw, TMJ syndrome (= temporomandibular joints)
Teeth / tooth / gums
Head - Headache
Scalp Pain (like hair being pulled out)

Spoiler: 2. FATIGUE, slowdown of activity

Supplements
Activity level significantly decreased
Fatigue from physical exertion, pain, stress etc.: See my 11 types of fatigue: esp. tiredness, ache, lack of energy, mental; Spoon theory.
Sighing, breathing in, etc. frequently (also pain, also psychological)

Spoiler: 3. SLEEP

Sleep lab psychiatrist, sleep lab neurologist, sleep lab pneumologist, multidisciplinary, supplements.
Alertness/energy best late at night
Sleep/wake schedule altered
Awakening frequently
Falling asleep difficult
Staying asleep difficult
Excessive sleeping = Hypersomnia
Hypersomnia = Excessive sleeping
Narcolepsy / Falling asleep at random and sometimes dangerous moments
Sleep pattern light or broken
Muscle spasms/twitches at night
Sleep disturbances
Teeth grinding
Tossing and turning
Un-refreshing or non-restorative sleep
Vivid or disturbing dreams/nightmares

Spoiler: 4. PSYCHOLOGICAL / MIND / EMOTIONAL

Psychologist, psychotherapist, empathetic psychiatrist, nutritional supplements.
Doubting it / “Imposter syndrome”
Not accepting it
Overdoing it (dilemma of feeling better & normal during & perhaps for a time directly after it)
Sighing, breathing in, etc. frequently (also fatigue, also pain)

EMOTIONAL, esp. depression (part or consequence), anxiety, incl. PTDS

Depression:
Appetite decreased
Crying frequently / easily
Helpless feeling
Hopeless feeling
Enjoyment, inability to previously enjoyed activities
Mood depressed
Suicidal thoughts / Suicide attempts

Anxiety:
Anxiety or fear when there is no obvious cause
Fear of someone knocking on the door / telephone ringing
Fears, irrational
Panic attacks
Phobias
Self-confidence, lacking; feeling worthless
Social anxiety

Mood:
Awareness of symptoms heightened
Irritability
Mood swings, like anger outbursts, uncontrollable rage, abrupt and/or unpredictable
Overreaction
Personality changes

Spoiler: 5. NEUROLOGICAL

Neurologist, supplements
Nerves/Paraesthesia:,
Burning nerves
Crawling, like bugs (formication)
Numbness sensations
Pins and needles
Stinging
Tingling sensations
Voodoo-doll poking (see also pain)

Tinnitus (ringing in one or both ears)
Trembling, tremor
Wrist: Tendons swell & press on nerves: carpal tunnel syndrome, CTS

Not that close to fibro:
Seizures and Seizure-like episodes aren’t FMS (I have them myself)

Spoiler: 6. “FIBRO FOG”: 1. Sensations, 2. Cognitive, 3. Speech, 4. Balance, 5. Perception, 6. Coordination

Not easy to separate these areas from one another.
Neurologist, opthalmologist (see 10. Vision & 13. Dryness of the eyes), neuro-ophthalmologist, supplements

Fibro-Fog / Brain fog: Delayed reaction to physical activity or stressful events. Appears like but ≠ adult ADHD.

General sensations:
Confusion
Dizziness, e.g. vertigo
Light-headedness
Spaced out feeling

Cognitive / Thinking unclear, difficulties:
Attention/concentration difficult, easily distraction
Decision-making difficult
Distance-judging difficult (when driving, etc.)
Judging difficult
Orientation (Disorientation) (directional or spatial, really or feeling)
Recognizing (routines, left/right, number/word orders)
Remembering (difficulty remembering, short-term or long-term, losing things, forgetting)

Speech:
Expression difficult (words, numbers)
Speech slowed, stuttering, stammering
Understanding difficult (words, numbers)
Word-finding difficulty/using wrong words.

Perception (Seeing, hearing, smelling):
Not seeing what you’re looking at
Smell hallucinations
Sensitivities → there.

Balance:
Balancing difficult
Walking wobbly

Coordination poor:
Bumping into things
Dropping things frequently
Staggering gait
Stumbling, tripping frequently
Walking clumsily

Spoiler: 7. BODY TEMPERATURE SENSATION

Endocrinology, Acupuncture, Acupressure, TCM.
Cold or hot feeling, or alternating
Flu-feeling, cf. Ache, Allodynia (touch pain), Feverishness, Hyperalgesia (amplified pain)
Hands/feet, poor circulation there: Raynaud Syndrome .
Hot flashes = hot flushes
Sweats → Skin

Spoiler: 8. SENSITIVITIES / INTOLERANCES

Acupuncture, acupressure, TCM, avoid/alleviate (, allergology).
Alcohol
Allodynia (hypersensitive to touch)
Chemicals in cleaning products, perfumes, etc.
Cold
Foods
Heat
Light sensitivity = photophobia
Noise intolerance
Odors = smells
Sensory overload
Pressure & humidity changes
Sun
Temperature changes
Weather changes
Wind

Spoiler: 9. GASTROINTESTINAL (gut: IBS = Irritable Bowel Syndrome; stomach: hyperacidity or hypoacidity?)

Gastroenterology, allergology, supplements, avoid/alleviate.
Abdominal cramps
Appetite decreased
Appetite increased
Bloating
Food cravings (e.g. for carbs) (try an “amino acid questionnaire”)
Constipation frequent (e.g. IBS-C)
Diarrhea frequent (e.g. IBS-D)
GERD = Gastroesophageal reflux disease = Reflux
Heartburn
Intestinal gas
Irritable bowel syndrome = IBS
Nausea
Rectum burning irritation (foods?)
Reflux see GERD
Regurgitation
Stomachache
Stomach burning
Vomiting
Weight gain
Weight loss

Spoiler: 10. EYES / VISION poor

eye specialist, oculist, ophthalmologist
Eye pain
Vision blurry, difficulty switching focus
Vision ability changes, frequent changes in ability to see well
Vision poor at night, e.g. driving

Spoiler: 11. UROGENITAL pain

Urology, gynecology, supplements.
Bladder pain
Endometriosis
Urination frequent
Impotence / Libido (sex drive) decreased
Irritable bladder, Overactive Bladder (OAB)
Menstrual problems
Pelvic pain
Premenstrual syndrome (PMS) worse
Prostate pain
Urination painful, altho no UTI (= Urinary tract infection)
Vulvodynia

Spoiler: 12. SKIN

dermatologist

Bruising easily
Eczema/Dermatitis
Itchy/irritable skin
Psoriasis
Rashes
Scalp pain cf. pain: head.
Scarring easily
Skin hot/dry
Sores

Swellings:
Bumps
Edema
Lipoma
Lumps
Lymph nodes swollen, esp. neck & underarms
Swollen feeling


Sensitivity to the sun
Sweating

Spoiler: 13. DRYNESS (Sicca syndrome?)

Rheumatologist, endocrinologist, ophthalmologist, dermatologist.
e.g. for eyes: Various therapies, 4 drop types, other things like intense-pulsed light therapy followed by massage of the eyelids, gua sha, omega-3 fatty acids (flaxseed oil, castor oil eyedrops and acupuncture.

Eyes dry (Sjögren’s?) (itchiness, hurting, stinging, burning, scratchy, stringy mucus, light sensitivity, eye redness, foreign-body sensation, contact lense difficulty, nighttime driving difficulty, watery eyes (as response), blurred vision, eye fatigue…
Mouth dry (Sjögren’s?)
Teeth & gum problems
Throat dry (sore, hoarse, speaking, singing, thirst increased),
Stomach dry (hyperacidic)
Gut dry (constipation),
Skin dry

Spoiler: 14. “LUNGS”

Physiotherapy, acupuncture, acupressure, TCM.

Air hungriness/hunger
Breath short with little or no exertion (esp. using arms above the head)
Breathlessness
Gasping for breath

Spoiler: 15. “CARDIOVASCULAR” (Heart, blood vessels):

cardiologist, psychologist, relaxation exercises
Blood pressure increased (due to pain?)
Hemorrhoids (piles)
Heart attack-like pain that mimics (costochondritis?)
Heartbeat fluttery
Heartbeat irregular
Heart palpitations
Heartbeat rapid
Pulse loud in ear

Spoiler: 16. HAIR

dermatologist, gynecologist, endocrinologist, supplements
Hair dull, listless
Hair: heavy and splitting cuticles
Hair: temporary loss

Spoiler: 17. NAILS (praps Psoriatic Arthritis = PsA)

dermatologist, supplements
Nail beds irritated
Nail ridges pronounced
Nails that curve under

Spoiler: 18. MOUTH cf. 13. Sicca

dentist
Dental problems
Periodontal (gum) disease
Canker sores, mouth ulcers, e.g. aphthous stomatitis

Spoiler: 19. WEIGHT (see 9. Gastrointestinal)

Weight gain, unexplained,
Weight loss, unexplained

 

[Lemon]

Guess I'm pretty finished with re-arranging and adding to the symptom list... - unless you 'd like to suggest an improvement?

Symptom groups:
0. ‘Invisibility’, Chronicity, Flares. 1. Pain 2. Fatigue, 3. Sleep, 4. Psychological, 5. Neurological, 6. Fibro Fog, 7. Body temperature sensation, 8. Sensitivities, 9. GI/IBS, 10. Vision, 11. Urogenital, 12. Skin, 13. Dryness, 14. Lungs, 15. Heart, Blood vessels (16. Hair, 17. Nails, 18. Mouth, 19. Weight)

Spoiler: Click on this for the complete list, grouped and ordered by relatedness/relevance to FMS

0. ‘Invisibility’, Chronicity, Flares
Docs can’t find anything (scans, bloods) - core symptoms 1-4 below plus diagnosis of exclusion.
Docs often don’t know about, acknowledge or understand it.
People incl. friends & partners can’t see anything, don’t understand, see us smiling: “But you look OK.”
Chronic: Longer than 3 months is the definition for FM.
Flares: Phases where the symptoms get worse than usual, due to triggers (see my cause/trigger list).

1. PAIN & stiffness - all over / parts of the body - toe to top
Rheumatology & pain medicine cannot address causes, only suppress symptoms; acupuncture; nutritional supplements, esp. amino acids.
Remember: “Pain caused by Fibromyalgia isn’t a threat” ("Jemima's" ‘radical acceptance’).
Possible treatments: Everything, specifically: Epsom salt-baths (magnesium sulfate)

1.0.1 All over at the same time

(Treatment: Overstraining something: Twist-stretch: twist limbs, back or neck & hold 10-20’’.)
Allodynia = touching pain, cf. hyperalgesia
Ache (esp. limbs)
Feeling run over by a truck=lorry/car/train/rhino/plane/whatever
Feeling like walking in a lead suit… / like the tin can man
Flu-like feeling: heaviness, Ache, fatigue, more pains, rest need, sleep need, sleep long. With or without fever-feeling, sinuses/runny nose (allergy?), headaches (migraines).
Heavy feeling (like treading mud with stones in pockets)
Hyperalgesia = amplified pain, cf. allodynia
Stiffness, morning
Stiffness, all day, after not moving for a while, after overexertion. Cf. stiff person’s/man syndrome (not nec. combined with to pain)
Muscle weakness
Pain moderate to severe
Tender points (≠ trigger points)
Trigger points (≠ tender points)

1.0.2 Certain areas all over, maybe alternating
Specialized physiotherapy, esp. osteopathy, chiropractic, acupressure

“Joint” pain (probably tendons, i.e. tendinomyopathy)
Muscle cramps (bigger area)
Muscle spasms (smaller area)
Muscle pain
Muscle twitching
Pains alternate, seem to move
Sighing, breathing in, etc. frequently (also fatigue, also psychological)
Tensed muscles, unconsciously
Voodoo doll-poking sensation, random places
Weakness (severe) or paralysis of an arm or leg

1.1. Legs

Feet - Plantar arch or heel pain
Thighs
Restless Leg Syndrome = RLS
Hip
Sciatica-like pain (from back down the legs)

1.2. Torso/Trunk

Back pain:
Disk/Discs Degeneration, DDD = Degenerative Disc/Disk Disease
Lower back pain = SI-joint = sacroiliac joint = sacrum and coccyx (tailbone)
Abdomen/belly
Scoliosis (sideways curve)
Hunchback (kyphosis)
Chest
Chest, mimicking heart attack
Ribs - Inflamed Rib Cartilage = Costochondritis
Breasts, lumpy & tender
Collarbone = clavicula
Neck pain

1.3. Arms

Elbow
Weak achy muscles

1.4. Head

Jaw, TMJ syndrome (= temporomandibular joints)
Teeth / tooth / gums
Head - Headache
Scalp Pain (like hair being pulled out)

2. FATIGUE, slowdown of activity
Supplements
Activity level significantly decreased
Fatigue from physical exertion, pain, stress etc.: See my 11 types of fatigue: esp. tiredness, ache, lack of energy, mental; Spoon theory.
Sighing, breathing in, etc. frequently (also pain, also psychological)

3. SLEEP
Sleep lab psychiatrist, sleep lab neurologist, sleep lab pneumologist, multidisciplinary, supplements.

Alertness/energy best late at night
Sleep/wake schedule altered
Awakening frequently
Falling asleep difficult
Staying asleep difficult
Excessive sleeping = Hypersomnia
Hypersomnia = Excessive sleeping
Narcolepsy / Falling asleep at random and sometimes dangerous moments
Sleep pattern light or broken
Muscle spasms/twitches at night
Sleep disturbances
Teeth grinding
Tossing and turning
Un-refreshing or non-restorative sleep
Vivid or disturbing dreams/nightmares

4. PSYCHOLOGICAL / MIND / EMOTIONAL
Psychologist, psychotherapist, empathetic psychiatrist, nutritional supplements.
Doubting it / “Imposter syndrome”
Not accepting it
Overdoing it (dilemma of feeling better & normal during & perhaps for a time directly after it)
Sighing, breathing in, etc. frequently (also fatigue, also pain)

EMOTIONAL, esp. depression (part or consequence), anxiety, incl. PTDS

Depression:
Appetite decreased
Crying frequently / easily
Helpless feeling
Hopeless feeling
Enjoyment, inability to previously enjoyed activities
Mood depressed
Suicidal thoughts / Suicide attempts

Anxiety:
Anxiety or fear when there is no obvious cause
Fear of someone knocking on the door / telephone ringing
Fears, irrational
Panic attacks
Phobias
Self-confidence, lacking; feeling worthless
Social anxiety

Mood:
Awareness of symptoms heightened
Irritability
Mood swings, like anger outbursts, uncontrollable rage, abrupt and/or unpredictable
Overreaction
Personality changes

5. NEUROLOGICAL
Neurologist, supplements
Nerves/Paraesthesia:,
Burning nerves
Crawling, like bugs (formication)
Numbness sensations
Pins and needles
Stinging
Tingling sensations
Voodoo-doll poking (see also pain)

Tinnitus (ringing in one or both ears)
Trembling, tremor
Wrist: Tendons swell & press on nerves: carpal tunnel syndrome, CTS

Not that close to fibro:
Seizures and Seizure-like episodes aren’t FMS (I have them myself)

6. “FIBRO FOG”: 1. Sensations, 2. Cognitive, 3. Speech, 4. Balance, 5. Perception, 6. Coordination
Not easy to separate these areas from one another.
Neurologist, opthalmologist (see 10. Vision & 13. Dryness of the eyes), neuro-ophthalmologist, supplements

Fibro-Fog / Brain fog: Delayed reaction to physical activity or stressful events. Appears like but ≠ adult ADHD.

General sensations:
Confusion
Dizziness, e.g. vertigo
Light-headedness
Spaced out feeling

Cognitive / Thinking unclear, difficulties:
Attention/concentration difficult, easily distraction
Decision-making difficult
Distance-judging difficult (when driving, etc.)
Judging difficult
Orientation (Disorientation) (directional or spatial, really or feeling)
Recognizing (routines, left/right, number/word orders)
Remembering (difficulty remembering, short-term or long-term, losing things, forgetting)

Speech:
Expression difficult (words, numbers)
Speech slowed, stuttering, stammering
Understanding difficult (words, numbers)
Word-finding difficulty/using wrong words.

Perception (Seeing, hearing, smelling):
Not seeing what you’re looking at
Smell hallucinations
Sensitivities → there.

Balance:
Balancing difficult
Walking wobbly

Coordination poor:
Bumping into things
Dropping things frequently
Staggering gait
Stumbling, tripping frequently
Walking clumsily

7. BODY TEMPERATURE SENSATION
Endocrinology, Acupuncture, Acupressure, TCM.
Cold or hot feeling, or alternating
Flu-feeling, cf. Ache, Allodynia (touch pain), Feverishness, Hyperalgesia (amplified pain)
Hands/feet, poor circulation there: Raynaud Syndrome .
Hot flashes = hot flushes
Sweats → Skin

8. SENSITIVITIES / INTOLERANCES
Acupuncture, acupressure, TCM, avoid/alleviate (, allergology).
Alcohol
Allodynia (hypersensitive to touch)
Chemicals in cleaning products, perfumes, etc.
Cold
Foods
Heat
Light sensitivity = photophobia
Noise intolerance
Odors = smells
Sensory overload
Pressure & humidity changes
Sun
Temperature changes
Weather changes
Wind

9. GASTROINTESTINAL (gut: IBS = Irritable Bowel Syndrome; stomach: hyperacidity or hypoacidity?)
Gastroenterology, allergology, supplements, avoid/alleviate.
Abdominal cramps
Appetite decreased
Appetite increased
Bloating
Food cravings (e.g. for carbs) (try an “amino acid questionnaire”)
Constipation frequent (e.g. IBS-C)
Diarrhea frequent (e.g. IBS-D)
GERD = Gastroesophageal reflux disease = Reflux
Heartburn
Intestinal gas
Irritable bowel syndrome = IBS
Nausea
Rectum burning irritation (foods?)
Reflux see GERD
Regurgitation
Stomachache
Stomach burning
Vomiting
Weight gain
Weight loss

10. EYES / VISION poor
eye specialist, oculist, ophthalmologist
Eye pain
Vision blurry, difficulty switching focus
Vision ability changes, frequent changes in ability to see well
Vision poor at night, e.g. driving

11. UROGENITAL pain
Urology, gynecology, supplements.
Bladder pain
Endometriosis
Urination frequent
Impotence / Libido (sex drive) decreased
Irritable bladder, Overactive Bladder (OAB)
Menstrual problems
Pelvic pain
Premenstrual syndrome (PMS) worse
Prostate pain
Urination painful, altho no UTI (= Urinary tract infection)
Vulvodynia

12. SKIN
dermatologist

Bruising easily
Eczema/Dermatitis
Itchy/irritable skin
Psoriasis
Rashes
Scalp pain cf. pain: head.
Scarring easily
Skin hot/dry
Sores

Swellings:
Bumps
Edema
Lipoma
Lumps
Lymph nodes swollen, esp. neck & underarms
Swollen feeling


Sensitivity to the sun
Sweating

13. DRYNESS (Sicca syndrome?)
Rheumatologist, endocrinologist, ophthalmologist, dermatologist.
e.g. for eyes: Various therapies, 4 drop types, other things like intense-pulsed light therapy followed by massage of the eyelids, gua sha, omega-3 fatty acids (flaxseed oil, castor oil eyedrops and acupuncture.

Eyes dry (Sjögren’s?) (itchiness, hurting, stinging, burning, scratchy, stringy mucus, light sensitivity, eye redness, foreign-body sensation, contact lense difficulty, nighttime driving difficulty, watery eyes (as response), blurred vision, eye fatigue…
Mouth dry (Sjögren’s?)
Teeth & gum problems
Throat dry (sore, hoarse, speaking, singing, thirst increased),
Stomach dry (hyperacidic)
Gut dry (constipation),
Skin dry

14. “LUNGS”
Physiotherapy, acupuncture, acupressure, TCM.

Air hungriness/hunger
Breath short with little or no exertion (esp. using arms above the head)
Breathlessness
Gasping for breath

15. “CARDIOVASCULAR” (Heart, blood vessels):
cardiologist, psychologist, relaxation exercises
Blood pressure increased (due to pain?)
Hemorrhoids (piles)
Heart attack-like pain that mimics (costochondritis?)
Heartbeat fluttery
Heartbeat irregular
Heart palpitations
Heartbeat rapid
Pulse loud in ear

16. HAIR
dermatologist, gynecologist, endocrinologist, supplements
Hair dull, listless
Hair: heavy and splitting cuticles
Hair: temporary loss

17. NAILS (praps Psoriatic Arthritis = PsA)
dermatologist, supplements
Nail beds irritated
Nail ridges pronounced
Nails that curve under

18. MOUTH cf. 13. Sicca
dentist
Dental problems
Periodontal (gum) disease
Canker sores, mouth ulcers, e.g. aphthous stomatitis

19. WEIGHT (see 9. Gastrointestinal)
Weight gain, unexplained,
Weight loss, unexplained

Yeah sounds so familiar, like looking in a mirror for most of it wow, it would be nice if we had a “cure”

 

[notsogrimreaper]

One thing I didn't notice is I do have severe dental issues IDK if its from the fibro or just from jaw clenching from the pain i get but i have horrible gums and broken teeth, feel like they break really easily.

 

[Auriel]

Do you have tmj @notsogrimreaper? I do (left side) I also teeth grind in my sleep (I wear a retainer at night and there’s digs in it by morning) maybe get a vitamin and mineral check (see if your under with certain things)

 

[JayCS]

One thing I didn't notice is I do have severe dental issues IDK if its from the fibro or just from jaw clenching from the pain i get but i have horrible gums and broken teeth, feel like they break really easily.

Mine've suddenly got worse, I think maybe due to dry mouth.
Jaw ache for 4 years seemed to be psychosomatic, then trigeminal, then food interstitial, then root inflammation... (I identified about 8 reasons/possibilites, can't think of em all atm) now the main tooth concerned might have to be taken out next week... if my supps haven't stopped the inflammation.

 

[notsogrimreaper]

I have always had bad gums, recently dry mouth. but I do have/had tmj issues, I don't grind but do clench especially when in pain or stressed.

 

[Rhyl]

I will mention a few numbers that stuck out to me. I picked things that don't seem to have another obvious possible cause. Id love to hear from others.
14. Hoarseness (its bad when my fatigue is at its worst) people can hear the change in my voice
25. Shortness of breath
43. Arch/heel pain (first steeps out of bed heels burn bad)
56. Paralysis or severe weakness arms/legs
57. Restless legs
58. Rib pain
59 scalp pain
71. Noise intolerance (I thought this was from add/vyvance for me)
73. Light sensitivity (never been able to be outside without sun glasses. The fall sun make me irritable when driving or working. I think its the flickering and since the sun is lower its seems its always in corner of eye, florescent lights make me irritable, especially if they flicker)
108. Nightmares

Actually, most of these have very possible/probable causes that are not in any way related to FMS. Shortness of breath can be a symptom of very dangerous and emergent issues with the heart or lungs. Rib pain is typical for costochondritis, which sometimes is in conjunction with fibro and sometimes not.

Anyone here get ocular migraines?

Yes. I've only had one in recent months (and it ended up being a massive many-symptom migraine. But before that one, I used to get them a lot.

 

[Rainbow]

Many of my teeth are loose & are gradually falling out.
The penultimate time I had a 'Hygiene' appointment, which cost me £70 (am pretty sure I've contributed to the huge house he & his wife have in a very desirable location), the Dental Nurse caught my gum with her scalpel, the cut became infected & I had to go back to be put on industrial strength antibiotics.
I was relieved I was not charged for those at least but they gave me Cystitis as usual.
The last time I went (years ago) he said my teeth falling out was due my fibro accelerating 'jaw bone shrinkage', showed me a very scary Xray of my teeth hanging on by their skin & charged me a fortune to pull out a front tooth, which took 3 painful attempts,
making me suspect I could've kept that one a lot longer.
Not been back since but have kept most of my teeth by being careful eg I wouldn't risk biting into a whole Apple etc.
Of course, this does not apply to chocolate & I've had some very near misses.