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I have been diagnosed with CFS, but constantly feel very dizzy and spaced out. Is this common?

Posted , 10 users are following.

joe08329
joe08329

I was diagnosed with ME (CFS) about 2 months ago now and have been trying to recover.

I am 20 years old and used to get extremely active. The Fatigue I can deal with because I can sleep but the constant headaches and dizziness is a problem. Is this normal with CFS?

1 like, 13 replies

13 Replies

  • joanne71205
    joanne71205 joe08329

    Posted

    Hi Joe, I was diagnosed 18 months ago and the dizzy spaced out feeling was/is my main symptom. I am very lucky and have recovered to a very large extent and now work full time again and manage to exercise, running up to 7 miles at a time. However, as soon as my body starts to get tired (if I push it too far) my warning is the return of the dizziness. The same happens is I get any kind of virus. I find the supplement D- Ribose (powder form) helps a lot. Available on Amazon but not cheap. Good luck x 
    • Jyst
      Jyst joanne71205

      Posted

      Could you please give us some advice on how you are in recovery ? and where you got the help/ advice from please ? Desperate parent x
    • dawn94288
      dawn94288 Jyst

      Posted

      Hi Jyst, I have heard that the D-Ribose that Joanne mentioned has been almost a miracle cure for quite a lot of people.  Then again for others it doesn't create much change.  It may very well be worth a try if you can afford it.

      I'm sure that Joanne will get back to you, but if you don't mind, I will private message to you a book that I trust that has helped me to know what to do to improve my health a lot.

    • joanne71205
      joanne71205 Jyst

      Posted

      Hi Jyst, so sorry to hear you have a child with this, my biggest fear is the hereditary link and my son getting this.  My recovery was very much aided by rest and proper pacing. I was taught to do this by an amazing Cognitive Behavioural Therapist. I was put on a six month programme of therapy with him, all on the NHS. He genuinely understood the condition, as much as anyone can, and also taught me an element of graded exercise too. I know CBT, pacing and graded exercise are a bit controversial in the M.E world but for me, these along with learning to listening to my body and D-Ribose 3 times per day helped me move forwards. My steps were very slow and small, my exercise began as low as five minutes walking a day but I steadily built it up. I have had blips and am in one currently due to a virus, so I have scaled everything back (listening too my body). However, I hope to build back up again in the coming weeks and months. I hope this is helpful, feel free to ask me any questions you like. Best wishes x
    • Jyst
      Jyst joanne71205

      Posted

      Thankyou so much for getting back to me . My daughter suffers from the head aches and dizziness too as well as sensitive to light and noise when so is getting tired. Unfortunately she never had an illness it was just an over night thing! She went from being a very active happy 14 year old to bed bound for several weeks . We are now just over a year in and have finally started to receive help of sorts. We are on our third paediatrician and hopefully things will improve. My daughter hasn't been to school since February last year , we did have a home tutor from September till December but unfortunately this has proved to much and has knocked her back ! If we leave the house for appointments she has to use a wheelchair as mobility is very tiring and she has lost a lot of muscle strength too. I will look into D -Ribose and see if it's available in our island. Again many thanks for the advice as all very welcome x

  • phillis55984
    phillis55984 joe08329

    Posted

    Sorry you have been plagued with t his stuff.  I haven't had constant headaches, but have had spells of dizziness.  Feel off balance a lot of the time...like I'm trying to walk on  an aiar mattress floating on a wavy lake.  But that isn't constant.  I don't think any of the things you mentioned are abnormal with ME/CFS.  I'm sure more people will reply to fill you in on this.  Good luck to you in  handling the adjustments this demands.

  • jackie00198
    jackie00198 joe08329

    Posted

    Yes, unfortunately. It's entirely normal with this illness. To maximize your chance for a full recovery, get plenty of rest and pace yourself. Above all, don't try to push through the fatigue. I know it's hard when you've been so active. Because you are young, you have a good chance of making a recovery.

  • dawn94288
    dawn94288 joe08329

    Posted

    Yes, dizzyness and headaches have both been big problems for me.  I agree with Jackie, you have got to listen to your body when it says it needs to rest.  This can help you immensely.  And there is so much hope for you to get better since you are young!
  • joe08329
    joe08329

    Posted

    Thank you for all the feedback guys. I am trying to sleep as much as possible and I am taking supplements to help my recovery.

    Really appreciate the quick response.

  • Warren1111
    Warren1111 joe08329

    Posted

    Hi Joe my name is Warren an I was diagnosed in 1998 headaches were very prolific an intense, cold flannels helped me a little , but as the time drags on the stress is harder to deal with I was bed bound for almost 4yrs , dont be discouraged an except help from councillors it has helped me extensively most pain killers stop working an you need a very aggressive doctor who will help as mine has I am currently suffering with very painful jaws an my advice is try to stay happy an atleast mobile it hasn't gone but over the yrs I am able to cope , don't give up it will become tolerable if only for a while , I hope this helps an good luck

  • LyLy
    LyLy joe08329

    Posted

    Hi Joe,

    I was just diagnosed with cfs/fybromyalgia. I too get dizzy, headpressure and headaches. I was wondering what supplements do you take to help with fatigue?

    Has your symotoms improved by chance?

  • jeremy04366
    jeremy04366 joe08329

    Posted

    I have constant spaced out feeling with blurry vision and headaches, with ringing ears,mine never stops at all. MRI is clear, all test are normal. It's very frustrating. I don't go out much in public.

    • edie46247
      edie46247 jeremy04366

      Posted

      Did you ever find an answer? Every test has come back normal. All of the MRIs, CT Scans, blood work. I suffer from dizziness, vertigo, confusion, memory loss, muffled hearing, muscle weakness, fatigue, light and sound sensitivity. I have been going through this daily for almost 2 years. I am unable to work and unable to drive most days (I’m not allowed to drive at night because of it). I need answers.
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