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Am I just making a fuss over nothing?

Posted , 12 users are following.

Cae
Cae

Hi,

I recently found out about CFS after Googling my symptoms. I saw my GP about my persistent feelings of fatigue a few months ago, and they had me have a blood test, which didn't show anything abnormal. I still felt there was something wrong, but my parents insisted it was just all in my head and I just needed to do more exercise. Recently though, it's been getting harder to ignore how I feel - constant headaches, earaches; some days during the holidays when I didn't have to be anywhere I would spend most of the day in bed and feel really down.

So I decided to go back to the GP today, who basically told me to do some more exercise and if I didn't feel any better after three or four weeks then they would do another blood test. My mother told me today that she knows someone with CFS, and someone who used to have it, and they couldn't walk for 5 minutes without a rest and had to plan their whole day when they woke up because otherwise they would forget what to do, so she insists I can't possibly have CFS.

So now I feel like perhaps I really just am unfit, and wondering if if I went back to the GP after doing the three weeks of more exercise, if I would just be told again that it was "nothing"? Should I pursue this further? I don't want to self-diagonse, but I can't help feel that there's more to this than just me being really lazy and unfit.

I remember when we had to do two laps around a field in school; I know I shouldn't compare myself to others, but my friend walked the majority of it, and she still beat me. I got the worst time in my whole year group. Another time, we were in groups of 5 and had to take it in turns to run first one, then two, then three, then four, then five laps around the hall. By the fourth and fifth lap, I came VERY close to telling the teacher I just couldn't do any more, because my legs felt like lead and I was dizzy and I just wanted to lie down.

Sorry that this was so long; I just had to get this off my chest. Apologies if I rambled. I just feel so awful.

1 like, 30 replies

30 Replies

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  • Fidd
    Fidd Cae

    Posted

    Lots of people seem to go through a period of mild CFS-type symptoms and then recover naturally, especially when they are young. We don't know why, and we don't know why some people can be so seriously affected and not recover.

    As we have such a poor understanding of these things and how doctors may be able to help, doctors can be dismissive of symptoms in a way which is unfair. Hopefully things will just improve for you.

    • Cae
      Cae Fidd

      Posted

      Hi Fidd,

      Thanks for your reply. I really hope things get better for me, but I've actually been feeling this way since the beginning of secondary school, so around 4 years now. I have exams coming up in a couple of weeks, and this is making things difficult for me because I have trouble focusing so I'm struggling with revision.

  • jackie00198
    jackie00198 Cae

    Posted

    Gosh, Cae. Sounds like you're going through the same thing almost every person with CFS/ME goes through. Being told it's all in our head, we're lazy, there's really nothing wrong, etc. Of course, right now you don't know for sure that you have the illness, but from the symptoms you describe, you may very well have it. And if you do, the very last thing in the world you should do is try to exercise your way out of it. Doing this can greatly exacerbate the illness, as it did with me. Please try to see an ME/CFS specialist (preferably an infectious disease doctor) before you do yourself harm by getting the wrong advice. There is no blood test for this illness. Bloodwork will come back ok. Rather, common symptoms are fatigue, postexertional fatigue (getting especially fatigues after any exercise or doing tasks), orthostatic intolerance, sleep problems. Dizziness and headaches are also common. There is a wide range of disability. Just because your mother cited an extreme case as proof that you couldn't have it, doesn't mean you don't have it. But, believe me, you don't want to be that extreme case. I don't want to scare you, but this can happen if you do have ME/CFS and ignore your symptoms.  You have to stand up for yourself, because the people around you, including your GP, don't have the knowledge to help you.
    • Cae
      Cae jackie00198

      Posted

      Thanks jackie, that means a lot. Yeah, I know it won't show up on blood tests; that's why I find it odd how the GP suggested just doing another blood test if nothing improves. I wasn't aware exercise could make it worse, so thanks for the heads up - I'll try and see a specialist, although by the looks of things I'll have to arrange everything myself.

      Thanks again. <3>

    • bronwyn97278
      bronwyn97278 Cae

      Posted

      Hi Cae;  I agree with the above comments, and yes, many times we have had to "stand our ground"....I have also found that GPs can't diagnose ME/CFS...the symptoms just ALL ADD UP, and it takes quite a long time for others (even family) to believe us when we say there is something wrong, even to saying  "your just depressed"...I was told much the same as you, even to the extent of "getting more physical exercise', when I could hardly walk, and the weakness in the legs was one of those symptoms too.  What I want to add/ask is the "vision" probs you are having....how long/or have you had an eye examination?  Our eye-sight is very important, and that in itself, is something that I would be addressing first...I can't see if you have mentioned your age....are you financially dependant on your parents?  If so, I can see that this is going to be a real issue for you, and as I live in Australia, I don't know a lot re your ability to organize appointments/pay for such?  I am really interested in how you go from here, as it could be a long journey...please keep in touch.....Bron
    • Cae
      Cae bronwyn97278

      Posted

      Hi Brownyn,

      What do you mean by vision problems? I wear glasses, but I don't have any trouble with my eyesight otherwise, except perhaps being a little sensitive to bright sunshine. I'm 16, so I don't have regular eye examinations any more, although of course I could book one if I had to.

      And yes, having the GP be so dismissive can be frustrating. Thanks for the support. =)

    • andrew22534
      andrew22534 Cae

      Posted

      Hi Cae, I am sensitive to bright light and oddly (but quite typically apparently) dont have good depth perception / peripheral vision in dusk or pre dawn light, i dont drive at those times because of it.But otherwise just short sighted and wear glasses, will be interesting to also see what Bronwyn says. 
    • bronwyn97278
      bronwyn97278 Cae

      Posted

      Well Cae....you just confirmed re "cognitive" probs...I have just gone back into your original blog, and read "re-vision"....not  vision...sorry for confusion (and prob extra stressor)....so try your best with the revision, and good luck..Bron
  • agentdove
    agentdove Cae

    Posted

    Hi hunny

    i have had undiagnosed CFS for 2 years now. My partner has diagnosed CFS and we both have very similar symptoms.

    No you are not making a fuss this is real and the symptoms can be very dibilatating. I also suffer from Polythcemia Vera and my doctors always put my symptoms down to my blood disorder. It has taken me 2 years to be referred to the CFS clinic....which has a massive waiting list. Dont give up... you will have good and bad days. The reality is the doctors will most likely do nothing significant to support you.... however there is lots of research taking place and a search on Google and YouTube will bring these up for you. Have a look and try different things until you find one that works for you.

    sorry it is not good news but I wish you the very best... and please do not surrender to your symptoms but work with them In the hope they will get better in time.

    I wish you all the best xx

    • Cae
      Cae agentdove

      Posted

      Hi agentdove,

      Thanks for your kind words. I'll look into the research that's out there.

      I hope you get the answers you're looking for at the CFS clinic you've been referred to. xx

  • Sellins
    Sellins Cae

    Posted

    Hi Cae, I think you should concentrate your exams and forget about exercise for now. Stress is a major trigger in my CFS and whilst exercise can make you feel less fatigued on the day, it is also likely to lead to worse fatigue in the next couple of days.

    Don't despair of your doctor_although you feel you have had these symptoms for a while now, "chronic" in a medical sense means long term, so after 6 months your doctor will probably step up the action plan. Although there is no blood test to show CFS, it is good that he is trying to rule out other illnesses as the infectious diseases specialist will insist on these. Keep plugging away at your gp and make a note of every single symptom you notice over the next month or so, the more details you give them the harder you become to ignore. Good luck.

    • Cae
      Cae Sellins

      Posted

      Hey Sellins,

      I've had most of the symptoms for a lot longer than 6 months - 4 years, actually. And the blood test was done 9 months ago, so I'm not sure I trust the GP will be doing anything soon. It has been getting worse these past few months, which, as you said, could be due to stress from exams. I don't feel stressed though, since I did well in the mock exams and am confident I will also do well in the real thing. I think if jackie00198 is correct and the symptoms can get worse with exercise this could be another possible reason, because I've noticed some of my symptoms like indigestion started after I began doing weight training (I really pushed myself with it too; often woke up feeling sore the next day).

      In any case, I've realised the health center I'm going to tomorrow (for some things to do with my mental health) actually specialises in CFS/ME, so I'll bring it up then as well and see if they can do anything.

      Thanks for your reply. smile

    • andrew22534
      andrew22534 Cae

      Posted

      Hi Cae, with the weight training i would expect muscle soreness the next day if you have been pushing yourself - if any of my athletes were not sore i would query whether they were lifting enough weight! I get indigestion when i have done too much, which can be suprisingly little at the moment, but also this is common after training hard, the body reacts to the metabolites produced from exercise. However the rest of how you feel does read right... good luck with the medics this week and i hope you get some helpful support very quickly!!!! and of course good luck with the exams...
    • Cae
      Cae andrew22534

      Posted

      Hi Andrew,

      Thanks for all the helpful info. I asked the psychologist I saw if CFS was something that could be looked into, because she knows about my low energy levels, but she said that isn't really her area, which is fair enough. I think maybe my best bet is to go back to the GP after three weeks and say exercise is just making me feel worse, and specifically mention CFS and that I'd like that to be looked into.

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