CFS?

Hi Rosierosie, CFS is a condition I've been living with for 37 years now.  I first became ill when I was 20 and initially the symptoms were staying really unwell after a terrible virus which affected my gut and respiratory system; followed by pain in my joints, stabbing pains in my chest and fatigue and generally feeling so unwell I thought I must be dying.  I was a student when this happened and my throat and chest symptoms were so bad that I was in and out of hospital for a while as doctors checked for things really serious illness.  After a couple of years they seemed to run out of things to test me for, and patience with me.  From then on doctors seemed to dismiss me simply as a hypochondriac, a shirker, etc., etc. That did not help I can tell you, especially as it made it difficult even for family and friends to take me seriously.  There was a point where I simply did not think I could carry on.  However, I got through it.  There always seemed to be at least one person who really believed in me and in the genuiness of my illness and psychologically that kept me going even though at times my body just wouldn't co-operate any more.  I did manage to hold down jobs with difficulty but I've not been able to have a real career as such.  Just getting to work and staying there for a day was all and sometimes more than I could manage.  I've since managed to have four children and done various small part-time jobs along the way.  I can honestly say it's been a bit of a nightmare generally BUT the good news is that at this point I feel better than I have done since I was in my 20s.  It's actually just a few years ago that my GP and various consultants agreed that I am suffering from CFS.  Some of my symptoms are so weird that I thought no one else suffered from them but since coming onto the forum I've discovered I'm not alone: things like nasal sores, terrible headaches, the list goes on. 

I sincerely hope you are not going to take anything like the time I have to have a diagnosis.  My advice is just don't give up.  You have to believe in yourself.  That's so important and I understand so difficult when you're sitting in front of a professional person who just does not get it.  Your problem is real.  You're not mad, or bad though I bet you're incredibly sad at times when it all gets on top of you.  Don't give up.  It will get better.  For me graded excercise has helped but even so the point is to never ever measure yourself against other peope.  If a five minute gentle walk is all you can manage at times in your life then you have to celebrate that achievement.  If you're managing to hold down a job that's huge.  The best advice I ever got was to start celebrating what I could do instead of focussing on what I can't. I found other peoples' lack of unerstanding and sympathy hugely difficult to bear and if this happens to you get a mentor of some kind to convince you you're absolutely fine they way you are.  Not that I mean it's ok that you feel so awful but beating yourself up about failing just makes matters worse.  Things got dramatically better for me when I was put on a low fodmap diet - you can look that up - which largely sorted out what had been described for decades as IBS.  The graded excercise to - for me it was 5 minutes a day to beging with.  Most of the time I feel pretty good now having learned to accept my limitations.  So I can't hold down anything more than an undemanding job for 6 hours a week, I can go running like the rest of my family, there are loads of things I just can't do.  The thing is that since you've not been ill that long you have a chance of a full recovery unlike me.  So again my advice to you is make a perfect nuisance of yourself with your GP and believe in yourself.  There are sympathetic doctors out there and you will find them if you keep looking and never give up.  I wish you all the best of luck and hope you will be feeling much better very soon.

Hi Rosie, my name is Jess and i'm 14 and was diagnosed with cfs/me just this year. in the february of 2016 i started having regular collapses/siezures, bouts of dizziness, sickness and general extreme tiredness. my attendance wasnt great and didnt enjoy school as i was always tired. In the longrun, it wasnt great and im currently off school and have been for months. If i dot improve within the next 2 weeks, i will be taken in as an inpatient. hope to hear from you soon.

Hi Rosie, I feel your pain!! I got CFS after a bout of flu. It was a common or garden virus, but I just never really bounced back, and things deteriorated from there. A couple of weeks after the flu, I went on a walking holiday. The other people on the trip started referring to me as 'the teenager' because I slept so much, and I kept being outpaced by the 82 year old with us (to be fair, she was a very impressive 82 year old!). I thought at the time that I must just still be recovering. Thinking back though, one of the other ladies there took me aside at one point and told me about how several years earlier she had suffered from CFS, and her experience with it. I remember thinking - wow, that's terrible, poor woman! I really didn't get the hint... let's blame the brain fog for that

So, symptoms, let's see: tingling in the extremities, random nerve pain, tiredness (obviously), constant runny nose (although I don't know anyone else who shares that one!!), brain fog - difficulty concentrating, thinking of words, remembering things, vivid dreams, some sickness and dizziness from time to time.

I would second the others in saying that you need to stick to your guns with the doctor. I know this is easier said then done - at the start of all this, I was so out of it I don't know how I managed to get through the doctors appointments. Writing down what I wanted to say in advance was a big help. One thing I wish I'd done was take someone in with me - I'm very independent, and this totally goes against the grain, but in retrospect I wish I'd had someone in there with me to help me remember what was said and to back me up when I was being brushed off. Brain fog and feeling awful are not helpful when fighting your corner!

I also used to work events, and I'm lucky that I've been able to really minimise that aspect of my job over the last couple of years. I loved it, but I've realised that if I do that, I will have nothing left for anything else in life. I've also gone part time, which has been a big help. Like you, I was living a work/collapse/work/collapse lifestyle when I first came down with CFS. Slowly I realised that I didn't love my job enough to justify it taking 100% of my energy, so I had to make changes. I went part time and gave up the promotion I'd spent the last 6 years working towards (bye bye money and working all over the world!). There are good things though - I'm concentrating on life's simple pleasures (ok because I can't afford life's complicated pleasures anymore!!! lol) and spending time with family and friends who understand my napping and brain fog. 

When it comes to ruling CFS in or out, my understanding is that it is the bucket you get put in when no other diagnoses can be made. Personally, I don't believe it is one thing, it's just the label for a group of similar symptoms that can't be otherwise explained. I reckon that's why you get people with CFS with such different experiences; there may be a variety of unknown or unidentified illnesses that cause similar symptoms - but we're all given the same badge.

Whether you end up being diagnosed with CFS or not my advice is don't doubt yourself. OK, just because you have a good day one day or manage to push through a situation, that doesn't mean that you are making it up or being lazy when you're not doing so well. (I have to tell myself this quite a lot!) Look after yourself x