My Symptoms: For Doctors: (somewhat in order of severity)
- “Post-exertional Malaise” (mental and physical exertion)
- internal tremor
- weak voice/hoarse
- slurring
- increased tinnitus
- increased blurry vision
- buzzy/numb feeling in my head
- weak and heavy muscles
- utter physical exhaustion (not tired)
- pain
- tight chest/SOB
- flu-like symptoms
- night sweats (in the past)
- Brain fog:
- cannot multitask
- cannot concentrate and tackle problems as easily
- easily overwhelmed
- some difficulty retrieving words
- forgetfulness (primarily short-term)
- Sleep disturbance:
- sleep apnea
- drenching night sweats (initial symptom, now resolved)
- swollen sinuses
- frequent and early awakenings
- non-restorative sleep
- muscle, neck and joint pain/ uncomfortable when sleeping (tossing and turning)
- very light sleeper
- nightmares
- morning headache
- Chronic daily headaches, intermittent migraines
- Noise sensitivity and light sensitivity
- Muscles:
- pain
- heaviness (difficulty moving)
- weakness
- fatigue
- achiness
- stiffness
- easily injured (pulled muscles)
- twitching
- Light headedness/near-syncope from low BP
- Heart arrhythmia/palpitations and chest tightening
- Vertigo (room spinning, even when lying down with eyes closed)
- Pain:
- Headaches (chronic daily headaches punctuated by migraines)
- neck (degenerative disc disease)
- shoulders
- spine
- lower back and coccyx
- hands
- eyes
- Flu-like symptoms:
- aches
- chills/sweats
- low-grade fever
- sore throat
- stuffy/runny nose
- headaches
- exhaustion
- Eyes:
- blurry vision, like Vaseline over eyes
- gritty
- floaters
- discolored
- itchy eyelashes
- recurrent styes
- have been told I have dry eye and eye allergies
- “Inflamed” feeling in spine and head
- Temperature control problems (alternating chilled to the bone and overheated / low-grade fever) – this was very debilitating in the beginning of my illness.
- Tinnitus
- High heart rate when moving arms or walking
- Extreme drug sensitivity (allergy?) (8mg codeine, <2mg hydrocodone)
- Hair loss
- Food reactions
- Dry, bumpy, skin, prone to acne
————————————————————————————————————————-
Previous Health Problems
- Asthma
- Recurrent pneumonia and bronchitis as child
- Idiopathic Anaphylaxis (possibly alcohol?)
- Severe Dysmenorrhea
- Vasovagal Syncope/ low blood pressure
- Hyperthyroidism: Toxic Multinodular Goiters (treated with radioiodine)
- Autoimmune Angioedema and Urticaria (tongue swelling)
- Neurocardiogenic syncope
- Allergies (dust mites, dogs, cats, mold, trees, grasses, tomatoes, eggs, cod)
- Sleep apnea (the kind that causes me to “wake” 49 times an hour)
- Raynaud’s
- Hypoglycemia
- Headaches
- IBS-C issues
Rag and Bone Shop of the Heart 
That’s heck of a list, it’s kind of scary when you spell it all out in black and white isn’t it? Thanks for sharing the ear itch one though, I’d been told it was outer ear infection (otherwise known as I have no idea!) so I can now blame (yet again) ME. 🙂
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[…] Deep itching in the ears (I just learnt that could be a symptom today!) […]
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Itchy ears here too! A doctor told me I have no ear wax at all. This happened after onset of ME. I have assumed it’s related to low blood volume (not enough fluid getting to my head). I think the dry eyes and tinnitus (which I also have) could also be chalked up to this.
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That’s so weird! The only reason I mentioned itchy ears is because I have never had ANYTHING wrong with my ears except tinnitus. The itch was completely new. I guess it must have been allergies because it is gone now since I’ve been using Pantanase antihistamine nasal spray.
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Really good post here 😉
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[…] updated my symptom list for my appointment today, printed out all my tests from this year, put together a list of my […]
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Very interesting to list all of your symptoms. Most people don’t realize the scope of autoimmune illnesses.
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[…] I also included a list of my symptoms, which can be found here. […]
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[…] weeks before my appointment, I sent him a letter, a chronology of my health history and a list of my symptoms. He said that was extremely helpful and asked me very little in person about my illness, instead, […]
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Hi Elizabeth I have many of your symptoms inc pots fatigue body pain , dry eyes, eds, mcas , stents for intercranial hypertension . I had to force the doctors to do a lip biopsy and it’s come back with Sjorgens syndrome which I understand can cause pots , raynauds , fatigue etc. I am to undergo a muscle biopsy of my legs to see if I have nerve damage due to sjorgens and then start iviG . My blood tests didn’t show sjorgens hence the hesitation in allowing me to have a lip biopsy.
I wondered if you had looked into sjorgens as a possible cause of your symptoms ?
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