Hi all, I have been a regular here for a while trying to help others and asking questions myself. I am here because I need support but I don't know if I belong here but I don't belong anywhere else either. I seem to have a unique illness that no-one else in the world has got! I have come to the end of my tether. I have suffered SO MUCH. So far (and I have been sick and progressively getting sicker over time for 18 years) I have had lots of tests and seen lots of top specialists. Positive test results: Weak positive anti smooth muscle antibody Weak positive ANA Weak positive Rheumatoid Factor Liver granuloma (not active now) discovered on liver ultrasound Lesion in part of my spine discovered on MRI (told it was "non-specific") Brisk reflexes High sed rate several times, a bit lower now. Doctors and specialists have all lost interest and told me to just live with my condition. They have no answers as I do not meet criteria for any known illness. This is long but if you can please read the following which is my symptom history and let me know your thoughts. I would be very interested in the views of anyone who is in the health profession and their opinion. Rapidly losing hope, dignity and all the rest. Here is my history - please help if you can, Love Bunchy x SYMPTOM HISTORY FIRST PHASE – MAIN SYMPTOMS 1988-1995 New onset of extreme fatigue in head (as if I hadn’t slept for weeks) Generalised achiness and sometimes tingling all over Felt terrible all day if tried to get up early – ill, achy and exhausted Swollen, painful glands in neck (88-90), armpits (91-93) and groin (93-95) Cold hands and feet Sensitivity to temperature extremes Areas of skin exquisitely painful to touch occasionally Occasional excessive thirst Swollen fingers upon waking Alcohol intolerance Vertigo – type symptoms (December 90) Sensation of low grade fever and slight temperature at times NOTE: I had Glandular Fever 3 months before this started and a minor operation. This first phase improved after a flu virus in 1991 but I remained quite ill SECOND PHASE – MAIN SYMPTOMS 1995 – 2001 New onset of chronic severe nausea (like severe travel sickness), unusual stomach cramps, loss of appetite and diarrhoea (unrelated to food) associated with severe aching ill feeling, rubbery feeling legs and painful calves and sometimes a “squashed” feeling in my head Extremely hot, throbbing, stinging and painful hands and feet esp. in bed and after food or when exposed to heat. Night sweats and chills Extreme drugged feeling and feeling very unwell upon waking up Pressure headaches and chest pains (98-99) Sensation of not being able to draw breath (year 2000) Hot, achy, sick and dizzy spells in middle of night – felt as if delirious and about to throw up and have diarrhoea Standing and walking causes pain, pressure and stiffness in back and legs followed by severe “ill feeling” all over Gradual onset of pain, throbbing, burning and unbearable pressure feelings in back and torso when sitting upright and on hard chairs, anything that isn’t foam ie doesn’t “bounce back” and isn’t reclined. Often feel “battered”, bruised and sore all over In severe spells, feel as if poison or acid running through my body Need to eat and drink at certain times immediately to avoid feeling worse Low body temperature Unpleasant smelling menstruation (better with use of broad spectrum probiotic) Permanently chapped and peeling lips Occasionally feel extreme internal pressure and as if body and head will explode – go very red and get bloodshot eyes when this happens but blood pressure is normal NOTE: This phase started after a period of time when I tried to work full time and got extremely tired and also severely overheated during that particular Summer. THIRD PHASE – MAIN SYMPTOMS 2001 – New onset of extreme “CNS sensitivity”: Unusual pain and electric shock sensations all over followed by severe “ill feeling” upon lying on anything other than a soft mattress Severe internal buzzing, burning and pressure in torso and up spinal cord upon sitting – also feel “strangled” inside! Trembling, buzzing stomach muscles in certain sitting positions Episodes of body rigidity followed by buzzing and trembling all over Crawling feeling in leg muscles and also hip and torso pain when sitting in some positions. Sitting upright feels as if I am being strangled inside. Even more severe general “ill feeling” all over Severe heat intolerance – feel as if about to explode, severe pain, ill-feeling and disorientation and head feels “detached” Stomach symptoms worse than before Standing/sitting problems worse than in second phase Too much talking and/or noise around me causes fatigue and confusion. NOTE: I’m not sure what caused this phase although it happened after severely overheating again and simultaneously trying to come off Sulpiride. I did improve over time after about 6 months of severe symptoms. Most symptoms are still present from all of the above phases to a greater or lesser degree. Symptoms fluctuate but I always feel extremely ill but not really tired. During the last 3 years: Have had several severe and unusual reactions to viruses (one with severe hives and head swelling, one with the severest form of pomphlyx the doctor had ever seen , one causing hives in my eyes) which have led to fatigue, weakness, greatly increased muscle stiffness, pain and soreness, a poisoned feeling all over and most recently, a marked sensitivity to fragrances and chemical odours.