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Is this chronic fatigue syndrome?

Posted , 13 users are following.

reena56292
reena56292

I am really struggling with coming to terms on what is going on with me, with no help of doctors. I have had severe fatigue for 6 months, which has progressively gotten worse over time. This fatigue is there every single day. I have found that when I feel ok, alcohol and exercise are triggers that set me back at least a week in bed. Besides this, i have difficulty falling asleep, staying asleep, and wake up extremely unrefreshed. I dont have any flu like symptoms or sore muscles. I am feeling pretty lost and down here. Would like to know others experiences and their thoughts. I am a 22 year old female

2 likes, 27 replies

27 Replies

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  • boni333
    boni333 reena56292

    Posted

    Boy Jackie is right and like she said, I wish someone told me this when I got sick. And be very careful what docs tell you. Their good and we all need them but the medical community is still trying to figure out if this is real or in our heads. Although today their are alot more docs that are starting to understand. I do, or did my research on this illness in places I trust like national instutie of health and centers for disease control and CFS groups. I also bought books about it and tried to read them. But again it was written by someone involved with helping us. There are alot of snake oil salesmen out there telling us what we need. And all they want to do is sell you something. Coming here and other groups is where you can get some answers.

    Can you get better? I think you can dx'd right you can. There are alot of docs that see epstien stein virus is positive and say you have it. However there are other viruses with this illness. You can recover from the Epstein virus. But the CFS community says if you are better in five yrs you can go back to a normal life with caution. In my first yrs I pushed so hard that I collapsed and was bedridden for 3 yrs. If you pace yourself, listen to your body and not over due and rest when you need, you can get better, sometimes.

    I take a nap everyday and sleep til my body tells me to get up, not my mind. If I feel better I'll do some things if I don't, I'm on the couch the rest of the day.

    Good luck and keep asking questions

    Bonnie

  • reena56292
    reena56292

    Posted

    Well I dont even know what to think anymore. These past few months since my last post have been worse. I went to a rhemutologist who seemed to think it was RLS, so he prescribed medication for this and the side effects made me even worse to what I already am - dizziness, more fatigue etc. Anyway i had a good 4 weeks of a massive decline where I was seriously functioning at 10%. I thought it may have been a reaction from the new meds so i stopped them. Well ever since that I feel a little better, but the massive decline there made me terrified and now I am not so sure what is going on.

    I am so confused and scared. I had more bloodwork done and one of the doctors said my iron was borderline deficient and on the low side,plus low vitamin D so was told to supplement. Thinking this may have been the cause of things the second doctor I saw thinks this isnt the case and it is chronic fatigue. So confused. So now I am on a waiting list to see a third doctor who specialises in chronic fatigue to get another opinion.  

    I am so sick of this and wish I knew the exact cause as I am getting so many conflicting opinions. 

    • toni62403
      toni62403 reena56292

      Posted

      Hi Reena, 

      I'm so sorry to hear you're having such a difficult time of it! I think going to see a CFS specialist is definitely a good idea.

      I can understand the frustration of conflicting opinions - I was told initially told  that my symptoms were due to Gastritis and low iron but taking iron supplements did make me feel any better so I went to see a different GP (who was CFS-literate) and he did more thorough blood tests and told me that my symptoms were post-viral fatigue (I tested positive for the E-B virus - though I did not have glandular fever or feel fluey), but after 6 months I was not feeling any better and by this time I had had to move away from University back home and was told by a GP there that my symptoms were due to anxiety and depression - I had to then go and "prove" that I wasn't depressed or anxious but on the plus side I was offered CBT which helped me to find my baseline hand has meant I am far more stable than I was and so feel much better.

      At this point, my current GP is thinking that I have CFS but after being recently referred to the neurologist I'm still having tests done to rule other things out. So it has been 1 year and 8 months since I first felt unwell - so it has been a long journey and I've been super stressed and really down with it at times.

      I would highly recommend CBT to help you find a baseline and some stability, they will also be able to help combat some of the psychological strain of being unwell and not having a diagnosis. It helped me a lot anyway, and I'm also going to counselling and it's been nice to talk through all of the problems - though if you're still in a place where you're crashing a lot then this might be difficult to attend  or see if they offer counselling over the phone 

      best of luck and let us know how you get on with the CFS specialist

      Toni 

    • reena56292
      reena56292 toni62403

      Posted

      Hi Toni,

      Thanks for your great reply. I am definitely going to go see the specialist for a second opinion which is in about three weeks so we will see how that goes. This whole thing has caused me severe anxiety so I have already been to see a psychologist for CBT which has helped, although I have reached the end of sessions but am thinking more are in order as its just way too hard to be living with such uncertainty. I know anxiety didn't cause this fatigue, but rather that the fatigue caused the anxiety. I've just experienced such a massive decline lately and it's scaring me so much. I really hope that in the next few weeks I'll have some sort of more indication from two opinions of what the go is.

      Thank you for you and everyone else's input. I'll keep updated with how things go

    • KMRC
      KMRC reena56292

      Posted

      RLS has been related to a vitamin B5 deficiency.  I can't remember what the name of it but am sue if you google it, you will find it.  I had RLS so badly and started on B5 and within days the pain stopped.  Now I take it when it recurs (as do both my sisters) and it works like a charm.
    • toni62403
      toni62403 reena56292

      Posted

      I'm glad CBT has helped - I can totally identify with those feelings of anxiety due to being unwell though. When this all kicked off I was massively anxious, I don't deal well with uncertainty and the unknown at the best of times and this just had my head in a whirl and then over Christmas I became really low - I think the psychological impact is hugely underestimated. Look after yourself, and if you ever need a chat/vent etc. feel free to PM me if you want smile

      Toni

  • KMRC
    KMRC reena56292

    Posted

    I hail have seen quite a few chronic fatigue patients (and talked with them about their symptoms and then quizzed my doc) and the consensus seems to be that nobody really knows what causes it or why certain people get it but it seems fairly clear with auto immune syndromes like this, the weather certainly plays a role.  Barometric pressure is to blame.  It took me 12 years to be properly diagnosed.  GP's are notoriously incompetent at diagnosing all but the most obvious sickness.  You are better off having an internist as your GP and possibly a neurologist.  Remember, they will give you lots of different drugs, which in the end your body cannot tolerate long term.  Acceptance with the hand you are dealt (even tho that is really tough to do) and take as few drugs as possible.  I still take antidepressants (because being chronically sick is hard...) and have stuff for pain and sleep that I use sparingly.  It took me a long time to get to this point and it doesn't happen overnight.  Having a dx is so important to getting you on a path you can live on.
  • Retriever
    Retriever reena56292

    Posted

    Well done reena you have said it as it is. I went to my Doc for something for night pain the 10mg Amitriptyline seems to help but that is it. I have had M.E. before so I know I have it again. I don't want to be sent to so called experts to be even more confussed. They don't have the answer they have opinions. This forum has more to offer than they do. I have just had a couple of reasonable days but it's back to normal today. I  do know exercise is a no no. I don't know about drinking as I don't. There is very little which makes sense, it seems every day is different regardless of the obvious reasons exercise etc. Thinking about it my Doc doesn.t even know I have got it again.
  • jennifer76162
    jennifer76162 reena56292

    Posted

    Try taking a daily multi-vitamin with iron and drink alot of water. That might help. 
  • BS8
    BS8 reena56292

    Posted

    I've just put a post up, would you have a look at it for me please. We are desperate. 

    Thank you

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