Okay, please forgive the extensive length of this post, I've tried to chronicle my symptoms from first onset for the purposes of giving a broad picture.
UK, Male - 27
Child/Teen
- Headaches
- Bouts of flu like fatigue + vertigo 2-4 weeks
- 'Blurry' vision
- leaden limbs + vertigo + blurry vision (i now think this is derealisation)
(Each period lasted 2-6 weeks mostly around periods of stress or illness)
- Mumps Year10 (Post onset of the first bout of above)
Tests 2000 - 2005
- Neurologist - Benign Fasciculation Syndrome
- Cardiologist - Good left ventricle ejection, pronounced sinus arrhythmia, bradycardia (insignificant), ectopic beats (Insignificant)
- CT Scan - Inconclusive
- MRI (2002) - Clear
- EMG - Clear/fasics
- Adrenal test - Normal
- All blood test Normal
- CK - Extremely High
- MD - hypothesised cfs, never received the diagnosis as i began to recover i was however sent to CFS specialist.
- CFS Specialist
University
Suffered periods of intense fatigue, blurry vision (derealisation?), fasiculations, sweating, anxiety, ectopic beats, visual auras, weakness, leaden limbs (feeling like i can’t move/ feel like more of an effort to connect with limbs in order to move)
The majority of the time i just felt generally unwell, slightly fever some & sweaty on little exertion. During all the periods listed above i was in an out of the gym, lifting weights, high intensity swimming, rugby apart from the period where i fell ill and then it would take a month or 2 to recover to a state where i could build my exercise up again
Tests
Ophthalmologist - Diagnosed with silent migraines
ENT - Mildly inflamed sinus
Professional Career
I finished university in 2013 after 5 years (didn’t have to take any major time off) and started work at a firm in London. 1st Year was ok i had period of illness mainly flu fever sensations that would persist for a couple of weeks, maybe had one or two days off but then in March 2015 after a few months of late nights and weekends of overtime at work i fell ill. Symptoms:
Tests
Vit D (mildly low), full blood count (normal), calcium (low), HIV (Clear), diabetes (Clear), hepatitis (Clear), liver function (high bilirubin), BP (Borderline High).
MD Diagnosed - Gilbert Syndrome
Cardiologist - Good ejection fraction, Bicuspid Valve, ectopic beats, Severely dilated left + right atrium (Later corrected by consultant Cardiologist to normal…apparently there was an recording error)
CFS Specialist St Barts, London - I met Dr Murphy the consultant and specialist at Barts who suggested that he didn’t particularly think it was CFS however he was willing to commit me to the program there at Barts to try and make some recovery. I believe he felt i didn’t fit the criteria mainly due to my explanation of PEM. Up until the point in time where i began work i was able to exercise fairly confidently however 6 months prior this full collapse i developed periods of sweating and tiredness the following day which i put down to over training. However these symptoms became more severe reducing the amount of exercise i could complete. This continued to progress gradually until i had my crash.
MD prescribed Citalopram, Pregabolin, Amitrip, Venlafaxine, Prosac all of which had little to no effect on symptoms. Depression was suggestly unlikely however they felt anxiety could be a contributer/ cause.
6 Weeks after this period i somewhat recovered maybe to 70% and felt that i had to return to work. For the next 9 months i progressed along fairly well, i didnt return to the gym as i felt to unwell to: tired, feverish and slightly dizzy, couldn’t read screen particularly well but i was swimming, socialising. Work then ramped up again, i took on a part time university course which was adding pressure as well needless to say i crashed. I can chronologically list the symptoms in which they occurred:
- 2 Nights working until 2am
- Arm + Leg feel heavy
- fasciculation’s increase
- start waking at 3am
- 3 days later my vision becomes blurry (derealisation)
- i struggle read words on screen
- mild headaches
- i start to feel more and more tired in the morning
- In turn i increase my evening rest, coming home from work to sleep in my lunch break
- i start sweating and feeling feverish
- I’m irritable, emotional, feel like i can’t cope
- Feel like i can’t move
- Brain fog sets in
- Adrenaline sensation
- feel like I’m going to collapse legs don’t have the energy
Fast forward 4.5 months and I’m here, still off work. I can struggle through a half hour swim, i can do 20 pushups, i can walk 2km. The fatigue is present on commencing and doesn't increase excessively after completion, i could repeat the following day at a push.
Symptoms
Im due to see Neuropsychiatrist this week, MD thinks anxiety has a large part to play, I’m willing to accept that except for the past 4 months I’ve been having CBT, meditating, doing yoga and nothing has changed.
So, I’m here. Im fed up of the rigmarole of seeing physicians only to be palmed off to another whilst they decide what to do with me. I understand this community is a support network and not somewhere for which an individual like myself can achieve a diagnosis, that being said i would like to hear opinions on my case. I feel M.E is still a potential diagnosis despite what Dr Murphy has said, i also believe that an engrained anxiety or stress could also be a diagnosis, i just find that harder to believe considering I’ve spent the past 4 months doing stress/anxiety relieving practices with little or no results.
I apologise for the lengthy post & i understand everyones minds are stressed to the limit with this illness but when/if you have a moment i would appreciate your ‘2 cents’.
jbone
UK, Male - 27
Child/Teen
- Headaches
- Bouts of flu like fatigue + vertigo 2-4 weeks
- 'Blurry' vision
- leaden limbs + vertigo + blurry vision (i now think this is derealisation)
(Each period lasted 2-6 weeks mostly around periods of stress or illness)
- Mumps Year10 (Post onset of the first bout of above)
Tests 2000 - 2005
- Neurologist - Benign Fasciculation Syndrome
- Cardiologist - Good left ventricle ejection, pronounced sinus arrhythmia, bradycardia (insignificant), ectopic beats (Insignificant)
- CT Scan - Inconclusive
- MRI (2002) - Clear
- EMG - Clear/fasics
- Adrenal test - Normal
- All blood test Normal
- CK - Extremely High
- MD - hypothesised cfs, never received the diagnosis as i began to recover i was however sent to CFS specialist.
- CFS Specialist
University
Suffered periods of intense fatigue, blurry vision (derealisation?), fasiculations, sweating, anxiety, ectopic beats, visual auras, weakness, leaden limbs (feeling like i can’t move/ feel like more of an effort to connect with limbs in order to move)
The majority of the time i just felt generally unwell, slightly fever some & sweaty on little exertion. During all the periods listed above i was in an out of the gym, lifting weights, high intensity swimming, rugby apart from the period where i fell ill and then it would take a month or 2 to recover to a state where i could build my exercise up again
Tests
Ophthalmologist - Diagnosed with silent migraines
ENT - Mildly inflamed sinus
Professional Career
I finished university in 2013 after 5 years (didn’t have to take any major time off) and started work at a firm in London. 1st Year was ok i had period of illness mainly flu fever sensations that would persist for a couple of weeks, maybe had one or two days off but then in March 2015 after a few months of late nights and weekends of overtime at work i fell ill. Symptoms:
- Heavy fatigue
- Blurred vision
- Mild headaches
- Brain fog
- Sweating / Poor heat control
- jerks & fasciculation’s all over but majority in calfs
- heavy right arm & right leg, perceived foot drop
- at odd periods throughout the day i would feel choked
- Waking at 4am without fail but falling back to sleep
- hyperactive nerves i.e. if something brushed me i would jump
- Adrenaline sensation/feeling on edge
- feeling faint
- exercise intolerance i.e. muscles easily fatigued
- dry cough on left chest
- emotional
Tests
Vit D (mildly low), full blood count (normal), calcium (low), HIV (Clear), diabetes (Clear), hepatitis (Clear), liver function (high bilirubin), BP (Borderline High).
MD Diagnosed - Gilbert Syndrome
Cardiologist - Good ejection fraction, Bicuspid Valve, ectopic beats, Severely dilated left + right atrium (Later corrected by consultant Cardiologist to normal…apparently there was an recording error)
CFS Specialist St Barts, London - I met Dr Murphy the consultant and specialist at Barts who suggested that he didn’t particularly think it was CFS however he was willing to commit me to the program there at Barts to try and make some recovery. I believe he felt i didn’t fit the criteria mainly due to my explanation of PEM. Up until the point in time where i began work i was able to exercise fairly confidently however 6 months prior this full collapse i developed periods of sweating and tiredness the following day which i put down to over training. However these symptoms became more severe reducing the amount of exercise i could complete. This continued to progress gradually until i had my crash.
MD prescribed Citalopram, Pregabolin, Amitrip, Venlafaxine, Prosac all of which had little to no effect on symptoms. Depression was suggestly unlikely however they felt anxiety could be a contributer/ cause.
6 Weeks after this period i somewhat recovered maybe to 70% and felt that i had to return to work. For the next 9 months i progressed along fairly well, i didnt return to the gym as i felt to unwell to: tired, feverish and slightly dizzy, couldn’t read screen particularly well but i was swimming, socialising. Work then ramped up again, i took on a part time university course which was adding pressure as well needless to say i crashed. I can chronologically list the symptoms in which they occurred:
- 2 Nights working until 2am
- Arm + Leg feel heavy
- fasciculation’s increase
- start waking at 3am
- 3 days later my vision becomes blurry (derealisation)
- i struggle read words on screen
- mild headaches
- i start to feel more and more tired in the morning
- In turn i increase my evening rest, coming home from work to sleep in my lunch break
- i start sweating and feeling feverish
- I’m irritable, emotional, feel like i can’t cope
- Feel like i can’t move
- Brain fog sets in
- Adrenaline sensation
- feel like I’m going to collapse legs don’t have the energy
Fast forward 4.5 months and I’m here, still off work. I can struggle through a half hour swim, i can do 20 pushups, i can walk 2km. The fatigue is present on commencing and doesn't increase excessively after completion, i could repeat the following day at a push.
Symptoms
- blurry vision with derealisation
- waking at 3am + waking at the slightest sound, i am able to fall back asleep
- mild headaches
- exercise intolerance
- PEM (not to the point where i feel i have full blown flu, i just can’t stay awake)
- trouble brushing teeth i.e. arm feels fatigued
- trouble reading screen…light sensitivity?
- fasciculation’s/spasms
- sweating/fever
- slight agoraphobia
- energy depletes very quickly at that point i feel drained, legs go weak, dizziness sets in
- constant fatigue (level doesn’t really change drastically)
- tight hamstrings (when fatigue is higher)
- No muscle pain, no sore throats, slightly swollen lymph node in right side of neck (no soreness),
Im due to see Neuropsychiatrist this week, MD thinks anxiety has a large part to play, I’m willing to accept that except for the past 4 months I’ve been having CBT, meditating, doing yoga and nothing has changed.
So, I’m here. Im fed up of the rigmarole of seeing physicians only to be palmed off to another whilst they decide what to do with me. I understand this community is a support network and not somewhere for which an individual like myself can achieve a diagnosis, that being said i would like to hear opinions on my case. I feel M.E is still a potential diagnosis despite what Dr Murphy has said, i also believe that an engrained anxiety or stress could also be a diagnosis, i just find that harder to believe considering I’ve spent the past 4 months doing stress/anxiety relieving practices with little or no results.
I apologise for the lengthy post & i understand everyones minds are stressed to the limit with this illness but when/if you have a moment i would appreciate your ‘2 cents’.
jbone