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help :-/

Posted , 5 users are following.

gemma76373
gemma76373

Three months ago I had tonsillitis (which I usually get regularly). This time it caused cold sores and an if Ecton in my mouth. This lasted weeks and I felt sooo ill and dizzy I couldn't get out of bed. I ached all over, it was painful just getting up and down the stairs. This has esculated and I'm constantly feeling weak and drained. I work with children but I've found it impossible to work because I get too exhausted and ache n feel sore afterwards. I've had every blood test possible... They've recommended a tilt table because I keep feeling dizzy and faint. Also high pulse rate and heart pulpitations so I've got to have a heart scan next week and a 24 hour ecg monitor. Does anyone think this sounds like CFS?  

0 likes, 23 replies

23 Replies

  • jackie00198
    jackie00198 gemma76373

    Posted

    Yep. Especially if you've had all that bloodwork. ME/CFS is a diagnosis of exclusion. Get to a specialist if you can, because GP's typically don't know how to deal with this illness. Also, rest! Now is the time where a lot of rest can really help you recover. Don't push yourself. I wish someone had said that to me years ago.
    • gemma76373
      gemma76373 jackie00198

      Posted

      Thankyou Jackie. I know I'm sounding tight but do you have to pay to see a specialist or is it free? Money is a real issue at the moment with not being able to do many hours a week. I've heard that it can cost hundreds of pounds :-( 
    • jackie00198
      jackie00198 gemma76373

      Posted

      Gemma, I live in the U.S. where we pay for everything. Someone on this forum from the U.K. can help you with this question. My understanding of the U.K. health system is that they only pay for two protocols for CFS: cognitive behavioral therapy and graded exercise. There's been a lot of questions raised about the efficacy of these protocols. But you should investigate treatment in the system for yourself. I think there are some great specialists in the U.K. who are, unfortunately, outside the NHS. system.
    • gemma76373
      gemma76373 jackie00198

      Posted

      Okay then Jackie that's very useful to know. I will do some research thankyou :-)
  • olivia3636
    olivia3636 gemma76373

    Posted

    Yes. It does. Sadly CFS/ME is believed to be triggered by something. Usually a virus or a sudden onset of stress such as an infection, or mental stress. I would recommend seeing a specialist. What you can do about money and finding a specialist is look up the people who specialize in CFS/ME and see what kind of insurances they take. It could be very inexpensive if you find the right one. I would look into your adrenal-pituatary-thyroid axis. Get that tested in depth. Tilt table tests have been shown to do nothing. They're not a helpful test. I would get your MTHFR gene tested to see if there are mutations. Rest. Lots of rest. The only type of activity you should be doing is a walk. I wouldn't recommend working out at the gym if you're used to that. Try to meditate before you go to sleep. Sleep on dark, cold, quiet places. I sleep with ear plugs in. The sleep you do get needs to be good sleep. So you don't end up sleeping a lot. Also, it's been said that changing your diet is very helpful. I cut out gluten, processed foods, and sugar. Anything that's hard for your body to digest, stay away from it. Also, when you feel well, you can't just be normal again. You HAVE to take it easy. If you push yourself when you feel good or bad, you're going to make yourself worse. Get help from a doctor as soon as you can. The SOONER you get help, the sooner you're going to be able to get better. Goodluck and I hope you get better. Just remember to rest, stick to a sleeping schedule, and strict diet. No dairy, wheat, sugar, gluten. 
    • gemma76373
      gemma76373 olivia3636

      Posted

      Thankyou Olivia that is really helpful. I have got my heart scan next week then I will go to the doctors and ask for these tests you have mentioned. It's a horrible thing to have isn't it. I had never even heard of it before :-(
    • olivia3636
      olivia3636 gemma76373

      Posted

      Well its more of an umbrella term. Meaning, it's just a name for a very unsolved disease. There seems to be multiple reasons for it "activating." It should be caused by a sudden onset of stress, like the flu, or infection, even just stress, if you went through a very stressful event. There's no cure, not even really treatment. Just how conform your life to your I'll was. If I described my life style to someone, they would say I was the definition of health. Sleep schedule, essentially paleo diet by this point, always light but active exercise(I walk and do yoga/Pilates/core strengthening), I don't drink or smoke, etc.... Except, doing all of those help, but still barely make me regular. I'm also only 19, I've been sick for 6 years and I think when you're younger it's a much more wishy washy disease, it's very unreliable. I have come to accept that my body isn't reliable, very hard thing to accept. You just have to come to accept your limitations and then work VERY hard to change your life style and conform to your disease. Something none of us want to do. This disease has been present for hundreds of years, but was unamed for a long time. Woman who were "bedridden" most like had some form of CFS. So in the mean time, we have to treat and help ourselves with very little guidance and help to overcome it. So good luck, and don't ever stop trying. 
    • gemma76373
      gemma76373 olivia3636

      Posted

      Yes I started with a bad infection. I bet it is definitely worse at your age when you want to socialise alot more and do things with friends. It's good that you've learnt how to adapt your lifestyle in order to things better. Well done and thanks for the advice
  • Fidd
    Fidd gemma76373

    Posted

    At this point, you are still likely to recover from your infection. If you don't improve in the next 3-6 months, then it starts to look less good. We don't know why some people get better and some do not. If I were you I would focus on having as nice a time as possible, and hoping it doesn't become a more long-lasting illness.
    • gemma76373
      gemma76373 Fidd

      Posted

      Thankyou fidd! So you think I should just have my heart scan next week and not do anything else yet but see how I go in the next few months? Work is an issue, some days I can manage a few hours and some days I can't.  Thanks for the advice
    • jackie00198
      jackie00198 gemma76373

      Posted

      I think that the first year is especially critical in this illness. If there's any way you can take time off work, do it. Remember, if you get worse, the disease will force you to take time off work anyway. I had to go out on disability and was never able to work again. Get plenty of rest and don't push it, even on good days.
    • gemma76373
      gemma76373 jackie00198

      Posted

      How long have you had it for Jackie? I hope things are alot better for you now! Well I've had alot of time off work and I'm now doin a few hours a day but I think my manager is getting impatient because everything has come back fine she thinks I should be okay
    • jackie00198
      jackie00198 gemma76373

      Posted

      Gemma: I've had it for 15 years. I pushed when I should have rested. Was always a very energetic, goal-oriented person. A recipe for disaster with ME/CFS. That's why I keep sounding like a broken record on this forum: rest, rest, and more rest. Especially in early stages, when you have every chance of getting better. By the way, personally, I wouldn't do the tilt table test. I think symptoms can pretty clearly reveal whether or not you have POTS (postural orthostatic tachycardia syndrome), which is very common with ME/CFS.
    • gemma76373
      gemma76373 jackie00198

      Posted

      Wow you've had it a very long time :-( i think your right about the tilt table, it does seem pretty pointless. Strange question but do you ever get pins and needles in your hands? I've been getting this alot lately but never used too.
    • jackie00198
      jackie00198 gemma76373

      Posted

      Funny you should mention pins and needles. I'd never had that symptom until I had a relapse. Now I have that symptom in my feet, calves, and sometimes my hands. Along with a "heavy" feeling in my legs when I walk. I met with a really excellent specialist, who knew right away that these symptoms were CFS related. The relapse occurred during a trip my husband and I took and had taken many times before with no adverse effects. This is a nasty nasty disease.
    • gemma76373
      gemma76373 jackie00198

      Posted

      I'm glad I'm not the only one, I occasionally get it in my calves too. It's my arms they feel heavy alot, like I've got weights attached to them. It's worrying because I'm only at the beginning and feel like it's only goin to get worse. I don't know how you managed with it for such a long time.
    • Fidd
      Fidd gemma76373

      Posted

      It's really difficult to give much advice when there's so little good evidence in this area. Unless there's a good reason to investigate something in particular, there's a good chance that your symptoms are a result of this infection, although we do not really have an understanding as to why these symptoms can be long lasting for some. Also, I know that things can be really difficult with employers too, and much will depend on how flexible they are willing to be. I think it's worth trying to remember that when people are sick, trying to find time for nice and relaxing things is pretty much always of some value, and trying to fight to get things done and find out what's wrong could be counter-productive. Even if you do develop long-lasting CFS, there's not much that can be done about it, so again, it's about trying to manage things to maximise quality of life.
    • gemma76373
      gemma76373 Fidd

      Posted

      I understand there's not much evidence in this area and that there's no cure etc. I'm only wanting advice about symptoms of cfs and to find out more about what others have been through to find out if I can relate. I am at the beginning of this and have had so many tests and stuff done that it's getting frustrating. Just trying to find out what it is really.
    • Fidd
      Fidd gemma76373

      Posted

      Even that is a bit unknown I'm afraid and different people use different criteria. The autonomic problems you're being investigated for are common in CFS patients, but also some people see them as an exclusionary diagnosis. So far, your symptoms do no sound unusual for CFS, but it's likely that lots of people with lots of different problems end up being lumped together under the CFS diagnosis.
    • gemma76373
      gemma76373 Fidd

      Posted

      There is such a huge range of symptoms for cfs and so many people suffer from different ones. It varys from person to person which is what makes it so difficult. It's ashame there are no proper tests that can be done and no proper cure. How long have you had if fidd? What sort of symptoms do you have?
    • jackie00198
      jackie00198 gemma76373

      Posted

      Gemma: Yes, there's a variety of symptoms in this illness from person to person, but over the years what I've seen is a theme and variations. In other words, I keep reading about the same constellation of symptoms over and over-- symptoms like cognitive problems, extreme exhaustion, stomach problems, sleep problems, postexertional fatigue.
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