Posted , 7 users are following.
Been ill on and off for 21 years. Had a virus when I was 10 - suspected glandular fever as tests all clear (recurring sore throats, went pale, passed out a couple of times, frequent nausea, no appetite, became more withdrawn and anxious), weight loss.
I have never been the same since.
Ever since I have gone through highs and lows, each low being somewhat worse than the last, usually with at least two years between - basically once I get back towards having a normal life with normal levels of activity/stresses.
Symptoms have included generalised fatigue (nowhere near as bad as now), sore throats, awful IBS (abdominal pain, nausea, diarrhoea, indigestion, excessive burping), foggy mind, inability to concentrate (though think I've always found this hard!), skin issues (dryness all over and scaly and sore on scalp), big increase in amount of hair that comes out when I wash or brush my hair (I block the plug hole every time, never used to).
This time the 'crash' has been the worst ever - I was working long hours/commuting, but I was eating more than ever and healthily - though I was stressed (bully at work), but my work was outdoors and very active, however instead of fittening up I got more and more tired, my IBS restarted and got seriously out of control and one day when I went to get up, my body just said no (shame as my issues had been resolved at work and things were about to change greatly for the better!) - thought I had the flu but never went back. That was two years ago. I was ill with not only my disabling ibs symptoms, but also dizziness, low ferritin (5), breathlessness, especially - but not only after exertion (i.e. just going upstairs), terrible fatigue and an ever decreasing variety of diet as my ibs/ eating seemed to be triggered by eating, so was put on mebeverine three times a day which did help, yet still could not put on weight, and have struggled with this since I had the virus aged 10. It seems whenever I start vaguely approaching the weight I'd like to be my body has some sort of spectacular malfunction and I lose it all again.
Anyway....I finally showed some slight improvements and in may I started a low stress part time job - 15 hrs a week - split into three 5 hour shifts spead over the whole week.
At first it seemed ok, but before I knew it I'd called in sick three times already, my fatigue was awful, I would literally have to go straight home to bed for several hours to sleep and rest till my next shift.
Until recently, I'd started having issues with dizziness again, despite eating well and once again approaching putting enough weight on to reach my goal - yet once again, something struck and I had no appetite, felt sick a lot, had abdominal pain, and then developed intermittent low grade fevers (which is when I got signed off about 3 weeks ago), while feeling pretty horrid, as well as abdominal pain, frequent urination at times, and my periods being totally messed up - I started bleeding at the halfway point between periods - just for 3 days, then it stopped suddenly for 24 hours and started again for a day, now, my period due date has been and gone - 10 days ago, and I've had back pain on both sides, and breast tenderness, way worse on one side - when normally my periods last a good 7 days and both breasts are tender, so this seems totally out of character for my body and out of step.
All the doc could find was a low white count (she tested it twice several days apart), particularly neutriphils, no infection in urine, blood work otherwise fine. Definitely not pregant - I have still got a libido, but no energy to act on it and my muscles aren't up to it - on a bad day I can't climb the stairs without feeling breathless and lightheaded and a bit sparkly let alone anything else.
I've been told I have IBS obviously, but that's all - I'm also under investigation for an ulcer - as I've had some stomach pain - they tried an endoscope but I panicked and am booked for ultrasound (had them before and they showed nothing), and barium swallow in December.
The doc has referred me to a general medicine doc, and now as I had my endocrinologist (whom I saw once but he said I didn't quite fit CFS to his mind though wasn't keen on the idea of me working) fax the results of the blood tests he did back in may - which showed a positive ana 1:100 - so she's referred me to a rheumatologist.
Am just going a bit mad - tonight is one of my nights where my back aches and I'm just wondering what the hell is wrong with me!!! Any answers please!
1 like, 9 replies