Do I have CFS and Should I mention it at my next appointment?

About 1 year ago, I have been suffering from constant fatigue. I thought it was depression as my mood was constantly low and I was suicidal for a period of time. I did go to see a doctor about it and they referred me to CAMHS which only, about a week ago, got back to me asking if I could call them and update them on my situation. Which I did. For about 5 months I have been dealing with insomnia. Which is inconvenient as my GCSEs are coming up and I want to study and get good marks, but i'm not motivated at all. PE is becoming difficult and I just thought I was unfit but the other day, I was too exhausted to do any running or exercise so I was allowed to miss out and do homework instead because of my "Insomnia". (I had a note to my teacher) My friend mentioned CFS and it struck me so I researched it.

I have these symptoms:

- sleeping problems, such as insomnia and feeling that sleep isn't refreshing.

- sensitivity or intolerance to light and loud noise. (Whenever I leave a building to go outside, I get a sudden headache and loud noises stress me out)

- dizziness and difficulty controlling body temperature.

- stomach pain, nausea and diarrhoea. (I had diarrhoea from Friday till Tuesday last week and it seems to have settled, but stomach pains haven't)

- Headaches.

- I find it hard to concentrate in school and constantly have a 'brain fog' when talking to other people. I forget what i'm saying etc.

- Sometimes, I get joint and muscle pains.

My appointment is on Tuesday (today is Sunday) and It would be nice if you could help me out within the next few days.

Thanks!

11 Replies

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  • I have CFS and your symptoms sound like the same. Ask your GP about it but dont expect an instant diagnosis because they have to do tests to eliminate anything else. Good luck

  • I agree.

  • Yes you should definitely ask your doctor if you could possibly have CFS. At your age it is possible to fully recover if you get a speedy diagnosis and the right support. Take the list of symptoms with you just as you have listed them here. How do you react to exercise? With ME/CFS there is a delayed "post exertional malaise" in that the effects of exercise may not hit you until 24/48 hours later when you feel completely wiped out and it takes a long time to recover. If this is happening then it could well be ME/CFS.

    Good luck x

  • Absolutely true! I can work like a trogan all day, but the next three days I pay for it, sometimes just the act of getting dressed can exhaust me. 😊 get it sorted now an don't think u can best it overnight,

  • Basically, at the moment, cfs is a diagnosis of exclusion. So write a list of your symptoms plus any examples you can think of. Also start to keep a diary of your symptoms for future reference. Think back to how and when it all started.....infection, stress, etc. Think about how you feel after mental or physical exertion and whether this is straight away or after a period of time.Take your list with you when you go to the Dr and ask if there is a possibility that it might be cfs (perhaps take someone with you for backup). Show them your list. Sometimes GPs need a nudge to consider cfs. Hopefully youll have an understanding GP and they should order some blood tests to try and rule out anything else as there are quite a few other conditions with very similar symptoms.

    In the mean time, try and get some regular rest breaks throughout the day. Perhaps school can find you somewhere quiet to put your head down during lunch or break times. Perhaps your gp could write to them backing you up on this and also excusing you from PE for the foreseeable future. When you're revising, split it into short chunks, with a lie down in between. Revise lying down, maybe, as this uses less energy than sitting. Don't try and do too much at the weekend and keep up the regular rests. Even if you are having difficulty sleeping, try and rest. I find audio books help. Listening to someone read to you is incredibly soothing and you actually lie still whilst listening. Also try and avoid stress as stress is a waste of energy (if you find out how to do this, let me know).

    Good luck on getting some answers and good luck with your GCSEs. It sounds like you have a good work ethic, so you'll do fine.

  • Thank you! I had a blood test in December and it came back normal which confused me. I also had a urine test for diabetes and it came back normal too. They haven't really suggested anything else but I still feel fatigued. I think writing the symptoms down will help as last time, it was hard to remember them all at once due to my brain fog. I think the cause could be stress and last year was quite a stressful year for me and I noticed I started needing afternoon naps suddenly around February which is when my sleeping problems started to get worse. I really think this could be it so I will try to nudge them to CFS.

  • Trying to keep an ongoing diary is really much easier than trying to remember things. I doesn't have to be a daily one, just as and when. It helps you notice any patterns. Try and remember to write down what else is going on as well as symptoms.

    Try and stay positive.

  • I'll try my best thanks for the help. ^-^

  • I will update you all on how it does! fingers crossed

  • Your symptoms strongly point to CFS. One can never get a 100% diagnosis on it, but IF your doctor can rule out other factors, then that's as certain as you can be. As for the insomnia, try Dates.... as in Arabian Dates. The redder the better. Take one Date at night just before going to bed followed by two Blue berries. Depending on the severity of your symptoms .... you can increase the number of blue berries. This should give you a sound sleep at least for 5 hours. It has worked for me. It might work for you. However a word of caution. If you are hypothyroid, then you may need to take one 50 micro gm pill about 15 min after the blue berries. Hope this helps. Good luck!

  • You symptoms also strongly suggest you have perniciousness anaemia or vitamin b12 deficiency.

    It's really important not to take anything supplemental containing b12 though until ALL tests are done and a diagnosis is confirmed as a single tablet can skew the blood test results and it'll be missed.

    That means all tests including repeat tests until they agree to treat you or totally exclude it.

    Even a 'normal' low result can result in all of your symptoms.

    I read you need levels close to or above 1000pg not to have the symptoms you describe then begin to heal them.

    Jump onto the health unlocked pernicious anaemia society forum.

    Stick your symptoms in a post and prepare to have your eyes opened.

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