jonp

hey everyone,

I've been ill for around 15 months now, ive posted on these boards before (not this one but the inner eat one). My illness started with a virus at a time when i was stressed out with work, relationships etc. I also smoked some Cannabis (which i had a very very bad experience from) with my friend around the time too (he also strangely got ill 2 weeks before me - and is still ill, but not quite as bad as me - he can work, go out, smokes, drinks etc - just like a normal person). Anyway I never had time to rest at the time, and then WHAM, in November 2003 i was KO'd for around 10 days. It started with dizziness driving to work on the friday, i played football on the sun and that night i felt like i was going to die - and that is no lie. The next day i tried to go to work, but had to come home early, when i got home i couldnt move from my bed. I was totally exhasuted, dizzy, spaced out, confused, had tingling in my neck and head, was sensivite to light, vomiting, racing heart beat. The worst of it went after around 10 days, but i was left with this very bad fatigue, dizziness, mental confusion, lack of ability to concentrate, sensitivity to light, extreme spaced out feeling - like i didnt know what i was doing and even where i was at times.

My doctor said that i had had a dose of viral labyrnthitis, and that i should be ok after a while. Anyway the feeling never went, so i went to see an ENT (eyes, nose and throat specialist). He said that it looked like i had some kind of virus, and it was nothing to do with my ears as my balance was pretty good - after doing a few of the 'stand on the spot' exercises. I was referred to a neurologist - who said i had had a virus, i had many blood tests and a MRI brain scan. They all came back fine. Anyway it as now Jan 2004, i had not been able to work for and the specialist told me to try and get on with things to get back to normal. So i tried, building up from just walking 5 mins or so each day. I tried going into shops and places, but i got terrible dizziness and anxiety, and i just couldnt do it. At this point i was forcing myself to do these kinds of things, as i wanted to get back to normal. After about 2 months, i was getting no-where and went back to the neurologsit - who said that i didnt have ME/CFS and that the virus could take quite a long time to go. He sent me back to the ENT just for some more checks. The ENT sent me for balance tests, which all came back normal too.
In the end i was referrred to a rheumatogist(spelt right) who diagnosed me with CFS. At this time i was still very ill, but i felt like i was improving very very slowly. I was sent to a physiotherapist in June 2004, who set me off on a graded exercise/activity regime. Getting up, going to bed at the same time, setting rest periods throughout the day (NO sleeping, just resting), 1 hour on the pc - increasing the time every 2 weeks, i also started off by doing 2 ten mintue walks each day for 2 weeks, then increasing the exercise by 2.5 mins. Anyway after around 3 months i got up to doing 2X25 minutes of walking every day and was at 2 hours on the PC. Then in October i fell ill again, with what seemed like the same kind of virus that started it all off in the first place. I was gutted. The worst of it lasted around a week again. The physio started me off again at the beginning on my exercise regime and i worked my way back up to 2X25 minutes around christmas, but i felt like i was over-doing it again and am now just doing 2x10-15 mintues. Since November 2004 i just feel like that i am not getting anywhere. I cant tell if i am any better or not. I know that i am getting more depressed as time goes on, as i have really good days, where i do not over-do things, but the fatigue/spaced out feeling/brain fog/headaches/depression/anxiety/bad memory/frustration/inability to concentrate still comes back. I cant figure out a pattern to it. Im trying to keep to a pattern of rest/activity everyday and it does make me feel slightyl better - but even on good days the symptoms are still there in the background waiting to pounce on me.

I recently went to see a Cognitive behavour therapist as the bad experiences i had of going to shops etc in March 2004 had given me a slight phobia of going out to places - it helped slightly - but whatever is causing my symptoms of dizziness/anxiety/fatigue is still there, so until these go away then the problem wont be totally solved.

I also get this pain in my stomach - which the doc said is due to too much acid. I get bad wind too. I have taken 4 months worth of anti-acid tablets but it keeps coming back.

I also sent my hair to a woman in Wales - who apparently can tell whats going on in your body by testing your hair. She said that i had a virus and that it was still lingering in my body. She has put me on lots of herbal remedies - which make me feel a little brighter - but nothing considerable has happened. I have now been taking the supplements for around 3 months.

Anyway its now Feb 2005, and im getting really depressed. All i do is sit at home all day, exercise and rest, try and see my friends. But im always too ill to do anything. Im not even sure if this is an inner ear disorder, a virus, thyroid gland problems, bad depression/anxiety, CFS/ME - i just dont know. I have never really researched into any other illness, so i am posting here to see if my story is similar to yours, to try and get some answers. Can anyone relate to my story? Please help.

regards jonathan