• Homer - How My CFS Started

    I thought you might find it interesting to hear how my CFS started, way back in 2001.

    One morning I had a drink of milk and almost immediately got toothache in about 6 teeth together in the lower left side of my mouth, which lasted for several hours. That night, I started to develop a nasty sore throat. Within a day or two it was extremely severe and I lost my voice. Then the virus seemed to move down my throat and onto my chest, it felt like an elephant was sat on it. When I went to bed I became aware that every time I started to go to sleep I stopped breathing completely. I thought I was going to die and I tried everything I could to stay awake as I was terrified. I obviously went to the doctors numerous times, and was just given different antibiotics to try as you did in those days. I was also given an inhaler and medicine, none of which worked. I was really panicking and got my dad to come and sit with me for some company while I tried to sleep.

    A few days on I was still no better, and I happened to ring the doctors one evening after hours. I got put through to an emergency doctor. I told him how terrified I was. This next bit will make you laugh...........he told me to relax and have a large glass of beer lol. (not funny at all!) Time went on and I was in a terrible state, with this feeling the virus was still on my chest and never left me. I ended up having to ring the doctors with chest pains and he rang 999 for an ambulance for me. They took me to A&E. After an ECG, bloods etc, they couldn't find anything wrong with me so back home I went. That was the start of it all for me. In the early days I went to see a virologist, who took bloods several times and a chest x-ray. They lost the first one, so I had to have another. He told me the CMV virus was most likely responsible as that was showing the most. Every time I had bloods taken I felt noticeably worse afterwards, more ill than before.

    A few months later, I went to see an M.E. specialist who told me I had Post Viral Fatigue Syndrome. I wasn't really given any advice what to do as back in 2001 things weren't as advanced as they are now. I was put on Dosulepin 25mg twice on an evening which seemed to ease my symptoms along with painkillers. I eventually struggled back to work as a TV salesman in my local Dept store. I needed the money and my bully of a boss forced me back to work. Shortly after this I was on my way home from work and I needed the toilet so urgently like never before. I ran home off the bus and sat on the loo with the worst most extreme diarrhoea I'd had in my life. Then almost overnight my stomach trebled in size and I looked pregnant. It wasn't a case of feeling bloated, it was a case of being heavily bloated constantly 24/7, and to this day my stomach is a massive size.

    It's very upsetting as none of my clothes fit me, and whenever you see someone you haven't seen in a long time, the first thing they always say is how much weight I've put on. I just agree as I can't be bothered to explain the complexities of my illness every time. My doctor tried me on all the usual IBS treatments but nothing worked, my stomach just remained the same size. I was eventually referred to a stomach specialist who examined me and sent me for a barium enema. That result came back fine and he just said it's IBS and gave me a leaflet. I've since seen two other specialists who said it's IBS and told me the things to try. I told them I've tried this, done that, taken this and they just didn't know what to say, and eventually my doctor said it's just gas. My stomach is like a beach ball, and not at all flabby, just very firm with no give in it. I can no longer bend down to cut my toenails and have to see a Chiropodist (more expense).

    Over the years I've suffered with all the usual symptoms of CFS, the extreme fatigue and tiredness, sleep problems etc. The list is just too long (see end of my story for my complete list of symptoms). I've had hundreds of blood tests, seen lots of different specialists from neurologists to ENT consultants to sleep specialists to heart specialists. About 4 years ago, my doctor decided to do a test for parathyroid levels, as my normal thyroid tests came back fine. When my tests came back, it showed my parathyroid hormone levels were very high and I was sent to see an ENT consultant. He said he would arrange for some tests as it was most likely that my PTH glands were enlarged and I would have to have an operation to remove my parathyroid glands and I would feel much better.

    So I went for an ultrasound of my neck and a Sestamibi Scan of my neck also, that's the one where they inject you with a radioactive agent, and you have to lie still for about half an hour whilst a machine takes all sorts of scans of your neck. When I went for the results the doctor I saw said my glands were fine, but thought I might be suffering from a Vitamin D deficiency, so he arranged for yet more bloods to be taken. I went back to see him 2 weeks later and he confirmed that I had a severe Vitamin D deficiency and I would need treatment to correct it, as it was this that was pushing my PTH levels up. I was given Calcitriol to take and he said he was sure I would feel 99% better afterwards. I took the tablets but felt just the same with no change in all my CFS symptoms.

    He then arranged for a Vit D injection, and again said I would feel much better afterwards. So I had the injection and went back to see him, but no change in my symptoms. He later discharged me as my Vit D levels had been corrected, and my PTH levels had come right down.
    This year I had my Vit D and PTH levels checked as I do once a year, and my Vit D levels were the worst they've ever been, so I was put on a massive dose of 20,000 iu of Vit D once a week for 6 weeks. I've just been for the results and they show my Vit D has been corrected and is now at 79, a normal healthy person is at 50. Again there is no change in my symptoms at all, I'm just extremely affected by all my CFS symptoms.
    Oh I nearly forgot, I told the doctor I was tired all the time, and he referred me to my local chest clinic.

    They arranged an overnight study and it emerged that I suffer with severe sleep apnoea, and I was given a CPAP mask and machine to take home and use. After several months of trying it made no difference to my sleep. I never feel refreshed and in fact the equipment just made matters worse and my sleep became more fragmented. I ended up giving the machine back as it made absolutely no difference to me. I saw the sleep apnoea doctor at my local hospital who is an expert in the field, told him the problems I was having, and he just said to me "what do you expect me to do about it?" in a nasty unsympathetic tone. He just shrugged his shoulders and said it's my CFS that’s causing the problems.
    I was very upset and unhappy at the outcome, so I investigated sleep labs on the internet, and eventually got myself referred to Papworth Hospital in Cambridge who have a dedicated sleep lab.

    It was arranged for me to have an overnight sleep study, being wired up with all the pads and probes etc. and off to sleep I went. The next day, the results showed again that I was suffering with severe sleep apnoea, stopping breathing 40 times and hour. I was kept in overnight and again put on CPAP equipment, and they monitored me and adjusted the pressure so it was controlling my apnoea. Again I was given the machine to take home and I used it for 6 months. It made no difference to the quality of my sleep ever, and just made matters even worse for me. The machine was indeed controlling my sleep apnoea, but on waking several times a night, each time I felt like a zombie, I was stuck in between being asleep and being awake, like I was almost drunk, I couldn't keep my balance and almost fell backwards on numerous occasions. So I ended up giving the machine back. Their diagnosis again was the CFS is causing my problems.

    I thought it might be useful to list all my symptoms so you can see the terrible state I'm in:

    Severe tiredness
    Overwhelming and persistent fatigue and tiredness, especially after doing things and may show up later, or I suffer for 2-3 days afterwards
    Severe aching in arms and legs
    Sore Throat
    Agonising sharp pains, mainly in feet, toes, legs, arms, hands and fingers
    Sensitivity to bright light and loud noise
    Permanent bloating
    Sudden urge to defecate
    Brain fog
    Difficulty concentrating
    Sleep disturbances, never feel refreshed, always feel worse after sleep
    Only sleep for short periods at a time
    Frequent and difficult urination
    Flu-like symptoms
    Racing heartbeat
    Constantly have to lay down and rest and sleep throughout the day
    Sometimes feel sick
    Sweating and poor temperature control
    Muscle spasms and twitching (mostly when relaxing and eyes closed trying to get to sleep and during sleep)
    Mood swings
    Racing mind
    Pins and needles in arms and hands
    Swollen ankles, lower legs and feet
    Rash of spots on forehead
    Feet too warm
    Hands puffy and blotchy

    (My symptoms change and fluctuate on a daily basis) And these are the medicines I take at present, I've been prescribed hundreds over the years, but this is all I take now:

    Pregabalin – 25 mg morning, 50 mg evening
    Dosulepin – 25 mg evening
    Citalopram – 20 mg morning
    Cocodamol – up to 4 tablets a day
    Esomeprazole – 20 mg very rarely once on a night
    Colecalciferol – 20,000 units once every 2 months

    Thanks for reading my story, it's still ongoing with more tests and consultants in the pipeline, I'm too ill to work, and I got finished from my last job due to ill health 3 years ago.