Conflicting information and work related issues.

[Cheesus]

Hi Folks

I'm new to these forums and fairly new to chronic fatigue.

As a way of a bit of background, I saw a CFS/ME specialist (an occupational therapist(?!)) for the first time yesterday. She confirmed to me that I am chronically fatigued (thanks, doc) but that I don't have Chronic Fatigue Syndrome. I suppose this has some benefits as whatever I have had for the last 9 months may magically disappear, but on the other hand I'm now outside even a peripheral diagnosis.

To get to my point, this lady told me that in the near future I may be able to test out going back to work (maybe an hour a day) to see how I get on. However, I just spoke to my employer's occupational health therapist (recommendation number 2) who said that she had just been to talk with a lady who told her that to overcome chronic fatigue you have to push through it. Already here I have two conflicting notions of what I should be doing. Then, from another direction, you have information from DRs such as Sarah Myhill who suggest that plenty of rest is absolutely central to getting well.

To make matters that little bit more complicated, I don't have a diagnosis as I don't fit the diagnostic criteria. I'd like to be unique but not medically! What I do have, however, and which I am sure you're all familiar with, is medically inexplicable and debilitating fatigue.

I'm getting so much conflicting information. Moreover, work are soon likely to refer me to see their own occupational health doctor as I'm pretty sure they are sick of paying me (been off for 2 months now).

Can anyone comment on this situation? I don't even know what the questions are I should be asking.

Thanks, amigos.
Cheesus

 

[SickOfSickness]

Welcome.

You're smart to question that. I think most of us on this forum tried to push through. Some of us for many years. The people who don't push for long are the ones who have a better chance of recovery.

How do you know that occupational therapist understands ME/CFS? It sounds strange, but I start doubting even if someone told me a doctor is a specialist in something, if that makes sense. If the doctor themselves calls themselves a specialist that is better, I suppose.

Did the occupational therapist talk about mental health? This is another thing I found, that even a specialist, at first will try to pin other diagnoses on you, like that you are just needing therapy or antidepressants. CFS patients usually see many doctors for years before they get the diagnosis. Because of all these silly doctors who don't take women seriously or don't understand how severe fatigue can be. There are so many parts they might not understand.

If you look at the lists of symptoms for CFS do you have a bunch besides fatigue? Did this occupational therapist ask about other symptoms or did you volunteer which ones you have? I don't mean the official criteria (which you said you don't meet) but check out the longer lists on the sites that understand this condition.

If you don't have other symptoms, or no matter what, you could consider other diagnoses and treatments. In case you really do have something else. Something else is probably a good thing, many of them have treatments. But if you do have CFS there are some things that help some people too.

 

[Cheesus]

Thank you very much for your response, SickOfSickness.

I have been fatigued for years and years as a result of pushing myself too hard, failing to look after myself and my anxiety disorder, but over the last 9 months it has worsened and fluctuated drastically as a result of a yet unidentified virus which appears to be akin to Epstein-Barr. It has been more acute since I went on an anti-candida diet 3 months ago and the initial die-off really hammered me into a hole.

I think the first person I saw (the OT with the NHS, we'll call her OT1 for clarity's sake), was fairly understanding of what was going on. She is part of an NHS team that treats chronic fatigue. We spent a good (but exhausting) hour and a half talking about my condition. She agreed that it probably needs looking into with more diagnostic tests given that I don't fit the criteria, however did note that it is probably tied up with stress and mental health. I certainly wouldn't want to reject that assertion, I just think that emphasis should be on the fact that it is 'tied up' with mental health rather than caused by.

My employer's occupational therapist (OT2) is equally sympathetic but strongly of the 'it's all in your head' camp, which as I understand it is fairly flawed. Moreover, by her own admittance, she is no expert on chronic fatigue. Earlier whilst on the phone to her she qualified her evidence by announcing enthusiastically: 'and this person had a PHD!'. My first thought was 'I should bloody well hope so', and my second thought was 'so does everyone else who passes public comment on medical conditions'. My worry is that it is her that controls my employer's opinion of my condition.

As for other symptoms, brain fog has been an issue for me, however only since the beginning of the candida diet. Recently I have had the remarkably unpleasant 'wired but tired' feeling. I also have had substantial dizziness, but that has decreased recently. My tonsils and lymph nodes are swollen (not at all tender or painful), and this will worsen when I've done too much (or when they worsen, I will be able to do less). Moreover, I often feel extremely sensitised to certain sounds. Finally, I also have incredibly foamy urine which is certainly not a CFS symptom but my doctor can't explain using the usual tests (the alternative med world would say this is toxins released from the candida diet).

I am open minded when it comes to the psychological factors. In my situation I think it would be foolish for me to believe that the mind isn't playing a significant role given that I suffer from an anxiety disorder and I am clearly worse when stressed. However, in comparison to the past my anxiety disorder is very much under control and manageable at the moment which is a surprise given my reduced mental capacity and idleness.

Again, thanks for your response
Cheesus

 

[Esther12]

I'd be sceptical about anyone's advice...

but I'd advise: that you try to just do what you feel like. This could be difficult with your work though. Some people do just have a period of suffering from chronic fatigue from which they go on to naturally recover, but some people don't recover, and there's not much good research to show why this is.

Unless you find that a particular diet makes you feel better, I wouldn't bother with diets (or if you find something really makes you worth, it could be worth cutting that out).

If you've been fatigued for years and years from pushing yourself too hard, it could just be that you are in a period of being really exhausted, and need some time to restore yourself, and have your body put itself back together. Personally, I'd just try to relax and play about for a while to see what happens. Medical advice could well do more harm than good, as could trying to follow irritating diets. Is there work that you could do in your own time at home, as just a way of testing out how you fit it in? That might help get your companies OT to feel like they're doing something, so they can leave you alone in other ways? I've really got no idea about your work situation, or anything like that though.