CFS?

Brain and nerves
1

Just wondering what kind of symptoms people had before being diagnosed with CFS?

I've felt awful for a few years now and have been to see the doctor for continued gastro upsets (had colonoscopy and found diverticulosis), constantly aching bones (had rheumatoid test - clear), fatigue (had sleep apnoea test - mild). I've also started seeing a psych a couple of years ago because I felt I had "brain fog" and just couldn't get things together/prioritise things. I find that it's taking a lot more energy to remember things now as well. In fact, I gave up a promotions position because I just didn't feel I was cognitively 100%. I've had a bad back for about 6 years and had a discectomy, but it is really stiff and painful now. I also consistently get headaches. I also have gall stones, fatty liver, fibroids and high blood pressure. Throughout my childhood I continually had colds/tonsilitis etc and had alopecia as a kid.

I did an Ancestry DNA test and fed my raw data through a Promethean health engine and it came back that my genetic markers had a high correlation with MS (but I take this with a grain of salt because I imagine it's not very scientific, and I mentioned it once to the doctor who looked at me strangely). I notice the MS symptoms seem to be a bit like CFS? Do you get checked out for both?

I feel like I use all my energy to get through my work day then just crash when I don't have to be anywhere. I increasingly put off social events because I'm just too tired and the thought of hauling my body somewhere and putting on the "functioning human" suit is too much to deal with. I'm overweight (not heaps) but the tiredness and pain doesn't feel like regular "fat person" tiredness and pain.

I have chronic pain and fatigue but push through it because I need to earn a living and I enjoy my job (mostly - but it's becoming less enjoyable because I feel I have less energy to do it to the standard I expect of myself). I used to be a high achiever who organised lots of things but now I find that it takes a huge toll on me. For example, I organised a large event this week and I was tired yesterday, but today I just had to take a sick day because I was in pain and I just slept for 6 hours.

I keep going to the doctor and try to tell them that something's not right, but I go to a clinic where you get a different doctor each time. I've tried different surgeries in the area, but this seems to be the best of a bad bunch. Every now and then it gets to the point where I can't handle it anymore and I go to the doctor again and try to connect the dots for them and remind them of the constellation of things I've got going on and see if they can find any connection between them, because how I've been feeling for at least 3-4 years can't be normal. But I just get the feeling that they think I'm making it up or I'm whinging about stuff because I rabbit on at a thousand miles and hour because I feel anxious about it all. 

The thing is that I have periods where I feel like I have energy. And if I set my mind to it, I can summon energy and push through a situation - but pay the price for it later. This is such a programmed response for me that I can understand why a doctor seeing me in a 15 minute consultation would think everything is ok.

I'm just really getting to the end of my tether with the pain and fatigue. I don't know where to go to resolve this. I'm only 40, and the idea of being like this for another 20 years fills me with dread.

I don't know if it's CFS - as we know, when we read symptoms online we always think we have certain conditions. But I need to find something to explain what's going on, so I'm hoping to hear from others about what they did to rule in, or rule out, CFS, or what made them twig that they had it. 

2

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.

3

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.

4

Thanks so much for your detailed reply. It actually made me a little bit teary to have someone listen and understand!

I'm definitely going to look into the low FODMAP diet. I've had tummy issues since forever, so it might be a starting point.

37 years - that is unimaginable. I'm glad to hear that things are improving for you and thanks again for your words of encouragement. As you say, it's difficult to challenge a doctor and all their wisdom. Your persistence has provided me with hope that it's possible to get things sorted.  

Thank you!

5

Thanks for your reply Jess. 14 is such a young age to be dealing with this. 

The collapses/seizures symptom is an interesting one. Do you know if it's common? I've had increasing bouts of dizziness in recent years, but both my mother and grandmother had bouts of vertigo so I just assumed I was stuck with their genes.

I hope that things start to pick up for you. It's great that you have a medical team looking out for you. All the best.

6

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

7

Brilliant - I'm so glad it helped.  Hang on in there and don't forget you're not alone with this.  All the best.