Hi,
I have been ill for 16 years with the most weird illness - I have never heard of anyone with the symptoms I have. Here is a list of my symptoms. As it is such a long, complicated illness, I have copied and pasted it and it hasn't come out very well but please if anyone can help me identify what this is, PLEASE HELP ME:
FIRST PHASE – MAIN SYMPTOMS 1988-1995
Ш New onset of extreme fatigue in head (as if I hadn’t slept for weeks)
Ш Generalised achiness and sometimes tingling
Ш Felt terrible all day if tried to get up early
Ш Swollen glands in neck (88-90), armpits (91-93) and groin (93-95)
Ш Cold hands and feet
Ш Sensitivity to temperature extremes
Ш Areas of skin painful to touch
Ш Occasional excessive thirst
Ш Swollen fingers upon waking
Ш Alcohol intolerance
Ш Vertigo – type symptoms (December 90)
Ш Sensation of low grade fever at times
SECOND PHASE – MAIN SYMPTOMS 1995 – 2001
Ш New onset of severe nausea, stomach cramps, loss of appetite and diarrhoea associated with severe aching, malaise, rubbery legs and painful calves
Ш Extremely hot throbbing hands and feet esp. in bed and after food
Ш Night sweats and chills
Ш Drugged feeling and severe malaise upon waking up
Ш Pressure headaches and chest pains (98-99)
Ш Sensation of not being able to draw breath (year 2000)
Ш Hot, achy, sick and dizzy spells in middle of night
Ш Standing and walking causes pain and stiffness in back and legs followed by severe “ill feeling” all over
Ш Gradual onset of pain, throbbing, burning and unbearable pressure feelings in back and torso when sitting upright and on hard chairs
Ш Often feel “battered” and sore all over
Ш In severe spells, feel as if poison or acid running through my body
Ш Need to eat and drink at certain times immediately to avoid feeling worse
THIRD PHASE – MAIN SYMPTOMS 2001 –
Ш New onset of extreme sensitivity (pain and electric shock sensations followed by severe “ill feeling”) upon lying on anything other than a soft mattress
Ш New onset of severe internal buzzing, burning and pressure upon sitting
Ш Trembling, buzzing stomach muscles in certain sitting positions
Ш Episodes of body rigidity followed by buzzing and trembling all over
Ш Crawling, twitching leg muscles and hip pain when sitting in some positions
Ш Even more severe general “ill feeling” all over
Ш Severe heat intolerance – feel as if about to explode and disorientation
Ш Stomach symptoms worse than before
Ш Standing/sitting problems worse than in second phase
Ш Heightened sensitivity to certain smells
NB:
It is a fine balancing act trying to maintain “comfort” – I need to avoid heat, sleep as much as necessary, sit only in certain positions, move around but only within specific limits and eat and drink when I need to without delay.
No apparent trigger for second and third phases although had Glandular Fever two months before onset of first phase but appeared to recover normally.
I use the word “malaise” to describe severe ill achy feeling all over.
Since onset of second phase feel much more ill generally and over time am becoming less able to live and function anywhere near normally.
If anyone can help me identify this illness please do as I have been to several specialists and had a lot of tests done and they just don't know what is wrong with me,
Thanks, Bunchy xxx
