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?
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.
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
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.
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
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
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.
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.
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.
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
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
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.
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
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.
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.
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.
