1. Community
  2. Brain and nerves
  3. Chronic Fatigue Syndrome

Atypical Chronic Fatigue

Posted , 7 users are following.

penguinteacup
penguinteacup

Hi there,

Has anyone else been given the label of 'atypical chronic fatigue'? I went to an ME clinic a few weeks back and the man there told me that I didn't have ME/CFS because I did not meet enough of the criteria, eg I don't suffer with loss of concentration or memory problems. My symptoms that i've had for at least 3 years are excessive daytime sleepiness, frequent headaches, night-time urination, feeling shaky/light headed if I exert myself too much sometimes eg hoovering/going for a walk after I've slept for a long period.

My GP basically said they don't know why I'm suffering like this and that it would be 'psychologically harmful' for me to continue my quest for a diagnosis. I just feel like if my body is telling me there's something wrong I should do everything in my power to find out what it is, it seems a bit of a cop out to say 'meh we don't know'!

Anyone else been given this atypical label or have any wisdom to offer? smile

2 likes, 23 replies

23 Replies

Next
  • david59662
    david59662 penguinteacup

    Posted

    Hi, i have CFS 17 months, have you been tested for lyme disease, this can often be misdiagnosed as CFS. I have not heard of this atypical label in CFS.
  • david59662
    david59662 penguinteacup

    Posted

    what i have found VERY helpful is chronic fatigue syndrome Uk facebook page.
    • penguinteacup
      penguinteacup david59662

      Posted

      Hi, I have not been tested for lyme disease. I've never had a tick bite that i'm aware of so I imagine GP would just say (rightly or wrongly) 'oh you won't have it'.

      Thanks for reccommendation of the CFS Facebook page, I have now requested to join 

  • GeorgiaS
    GeorgiaS penguinteacup

    Posted

    Continue your quest for a diagnosis; most of us have had a hard battle to get it, me included. Don't give up because of their ignorance please!

    Trust your body; there are professionals out there who diagnose ME, you just have to find one. biggrin

  • jackie00198
    jackie00198 penguinteacup

    Posted

    Never, in the 15 years I've had this illness, have I heard of "atypical chronic fatigue." Therefore, I don't believe it exists. Either you have ME/CFS or you have something else, but you need a competent diagnosis. You don't mention if you have one of the hallmarks of this illness:  fatigue, especially after doing any task. This is different from sleepiness. So I sugges you find another doctor familiar with ME/CFS and see what he/she thinks. An infectious disease doctor is one specialist who should know about this illness.
    • penguinteacup
      penguinteacup jackie00198

      Posted

      I don't believe it exists either, it's just a way of saying 'we don't know go away'! I have already been assessed for ME/CFS by the doctor specialising in it and have been judged not to have it, and I agree. I don't really think I have the fatigue which categorises ME, I have sleepiness, to the point where I was falling asleep at work and where I feel like I will pass out if I don't lay down. It is significantly worse in the mornings. I have tried explaining this to several GPs but every GP I have seen (and I've seen many) do not seem to make any distinction between fatigue and sleepiness, do not have any clue what is causing it and have no interest in doing anything else about it. I agree I need a diagnosis but last doctor was very dismissive of the benefits of being diagnosed and wanted me to just 'concentrate on living within my means'. Very frustrating
    • david59662
      david59662 penguinteacup

      Posted

      my CFS has always been worse in the mornings, some people have said this is due to poor adrenal function so yuo could try some supplements for this. It didn't help me much.
  • katharine81627
    katharine81627 penguinteacup

    Posted

    I've never heard of this... Like you I am currently under investigation and I'm waiting to see a specialist. It's worrying that when you have problems like this which affect us day to day they simply brush it off. I would keep trying to get answers and don't give up
  • alison46410
    alison46410 penguinteacup

    Posted

    I think many things can be labelled as atypical but that label could equate to individual differences. The symptoms you describe sound all too familiar to me and I have a CFS diagnosis. Concentration is affected by extreme sleepiness and light headedness but otherwise mine is ok. I think the most important thing is the ruling out of other causes of our symptoms, then you just have to manage CFS as best you can. I hope others agree.
  • david59662
    david59662 penguinteacup

    Posted

    one of my biggest symptoms besides the fatigue is the feeling that my heart is not right, REALLY EMPTY, like the feeling you'd get if a close friend left or died.
  • bronwyn97278
    bronwyn97278 penguinteacup

    Posted

    Hi penguinteacup...love the name;  however, I'm going to suggest something that another laddy on this forum site told me about, and am having it looked into (thankfully my GP/rhuematlogist arn't sooooo off putting), and agreed that having a blood test to check "our T3T4 Uptake.....apparently a lot of research/researchers agree and have found that most sufferers of CFS have a decrease in this area (the Thyroid), and if not tested for these Particularly, it goes unrecognized, but if found to be lacking in these two hormones, people suffer from  a slight form of Hashimoto's Disease......and not the Typical CFS.....just some more thoughts for you to think about????   Bron
  • dentalcfs
    dentalcfs penguinteacup

    Posted

    I don't think you can have CFS without some impairment of brain functioning.

    Have you been tested for diabetes?

    • penguinteacup
      penguinteacup dentalcfs

      Posted

      Yeah that was their reasoning for not diagnosing me with cfs. Been tested for diabetes which came back normal but the episodes of shaky light headedness I get seem like they must be blood sugar related. I don't know if it's worth buying a home test kit for glucose lecels
    • dentalcfs
      dentalcfs penguinteacup

      Posted

      Is it non-diabetic hypoglycemia then? Are you on certain meds or recently changing your diet? Maybe try eating some carbs when the episode come to see if it helps? The shaky part seems pretty intriguing.
    • penguinteacup
      penguinteacup dentalcfs

      Posted

      I don't know if it's non diabetic hypoglycemia, that's what I want to find out. I'm on venlafaxine (antidepressant) but I've been on that for over a decade and shakiness has only happened in last couple of years. No recent changes to diet. I'll have to try the carbs suggestion
    • dentalcfs
      dentalcfs penguinteacup

      Posted

      What was the cause of depression? Is it genetics? Do you drink? Are you overweight? Is your gut healthy, e.g. do you have gluten or lactose intolerance?

      I just saw studies that prolonged use of venlafaxine and antidepressants may be linked diabetes. I am worried that your symptoms may be caused by pre-diabetic conditions.

      I am no health professional, I'm a software engineer, a very good one, if that makes sense cheesygrin. But I do had to "debug" my own genetics in the past. It was resulting in hypersensitive immune system. This is where I started to learn about various kind of chronic illness, including some illness that most practitioners regarded as fake illness.

      If I were you, I wouldn't want to be on prolonged western medicine meds. There are just so little research on how it effects your system in long term. Sure, 2 weeks of antibiotics is great for infection, but years of antidepressant is a completely different story. The western medicines effects are very specific as well, and I believe at the end it would cause systemic imbalances.

      Are you willing to replace Venlafaxine with regular exercise? It doesn't have to be stenous, I would say 30 minutes of light aerobic each other day. And if you don't have CFS, obviously regular exercise will gradually build your health. It will boost your immune system, too! 

      Velafaxine seems to be addictive though, so you may have to taper gradually.

    • penguinteacup
      penguinteacup dentalcfs

      Posted

      I don't have depression, im on venlafaxine for OCD. I don't drink not am I overweight. I don't know if the venlafaxine is causing or exacerbating symptoms but I am trying to come off it anyway. I have been reducing it for the past 18 mths or so and have scheduled it will take another 8 mths to come off completely. It has to be done extremely slowly due to unpleasant withdrawal symptoms (I have had heart palpitations that have put me in A&E when I reduced too fast)

      Unfortunately doing exercise is out of the question as I am far too exhausted to manage it. Every time I try going for a walk/doing strenuous housework I feel like passing out.

    • dentalcfs
      dentalcfs penguinteacup

      Posted

      Sorry about that. I do think I had a bit of OCD too, but I've just realized that I can be much more severe than I imagined.

      And wow, 26 months on weaning off the venlafaxine. That's definitely much harder than quitting smoking. I hope you can stay strong with it.

      When you say you feel like passing out, do you feel the weakness/no energy  on your muscles? Like no energy for even pulling some plastic container lid? If so, that really sounds like CFS fatigue.

    • bronwyn97278
      bronwyn97278 penguinteacup

      Posted

      Afternoon Penguinteacup;   I'm back after reading some of the above comments....feeling I need to reassure you....I believe that you maybe   ??? beginning the long journey of CFS/Fibro,... as I can remember many years ago, when I had all of the symtoms that you are talking about now....feeling like you are having an Hypo-glycaemic episode....I would feel Very weak, shake etc....and was always able to get back to my normal self then by having a weak black tea, with plenty of Sugar  (yep, I know research and diets say no sugar...but that's why I really thought it was lack of sugar-related, for it was the sugar that made me feel better....then I got to thinking it maybe Menopausal???...sooo many questions/thoughts went through my head, and tried sorting it all out myself.....I still get the "loss of balance"..hot/cold flashes....yep the housework can/is a big drag on me too......but as I always say to others,...don't doubt yourself, as you are the only person who Really knows yourself, so believe in yourself....trust your Gut....make any sense??....Bron
    • penguinteacup
      penguinteacup bronwyn97278

      Posted

      CFS/Fibromyalgia has already been ruled out as I do not fit the symptoms, I don't have any loss of concentration or memory issues and I definitely don't have fibromyalgia as this is a condition of chronic pain and I don't have any pain symptoms. I don't suffer from any dizziness or loss of balance either.
    • dentalcfs
      dentalcfs penguinteacup

      Posted

      How long has the headache been there? Is it there since 3 years ago where it all started or does it just recently came in?

      Is there any sort of gastrointestinal or digestion problem?

Back to top
Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.