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Think I might have CFS - is it worth trying to get a diagnosis?(4 Posts)
I suspect I have CFS, probably since spring 2009 when I noticed a step-change in my quality of life. Won't go into symptoms at the moment, but DH has CFS and I have a friend with CFS/FM, so know quite a bit about it and I have a lot of the classic symptoms, although I am very high functioning. My previous GP just said "some people are more tired than others", when I've complained about it (and then ordered a rather small set of blood tests from which I never heard anything more). However, I have just moved, so I would have a new GP and new chance to explore this. But I'm not sure it's worth it.
I already work on pacing as best I can, and I'm not sure there's much else that can be done. I hate complaining to doctors and I hate embarking on "medical sagas". I have had previous bad experience with health professionals telling me it is all in my head, etc., when I spent a year getting my dysautonomia diagnosed -- and that had a measurable cardiac symptom that couldn't be ignored. Just being "tired" seems like an even worse minefield. I have a history of depression as well, which I imagine could be brought up, although I'm pretty sure I'm not depressed now.
Also, I'm not sure what use it is. DH has had CFS for nearly 20 years now. I have a full time job and support us both. DH is currently retraining, getting a postgrad degree, but realistically he will never be able to hold more than a part-time position (and I think he is slowly coming to terms with this). So I have to keep working full steam, and somehow I've managed to rise quite high in a demanding career. And now that we have just bought a new house and have a new baby, my income is more important than ever.
Although I wonder if my being diagnosed could help with perception with DH, as he sometimes gets quite cross at my fatigue. And I'm also just really struggling at the moment, with all the fatigue issues, plus remainders of pregnancy complications that are still hanging around, caring for a 9mo, back to work as normal next week (had been back full time, but able to work from home, now will have to go in most days), dealing with new house, etc. Of course, all that also means I really don't want to waste time at Dr's offices, as it just seems one more thing to do.
Thanks smudging. Yeah, it's the full investigation thing I hate. I've already had one "diagnosis of exclusion" with IBS, some 15 years ago, and that plus the dysautonomia saga means I've visited all sorts of medical devices (some quite painful -- I really did not like nerve conduction tests -- and I always have the worst side effect of all those visualisation drugs). Plus, it takes a lot of time and energy, which is what I don't have.
How do you find out about specialist units?
Hey, since I have to pick a GP from several practices (apparently there are three practices I can choose from), is there some kind of reviews or something about them? I really also don't like the idea of explaining my symptoms and being dismissed. I've had GPs and an endocrinologist basically tell me I'm lying (and given that I'm now medicated for the thing they told me I invented, and the medication works, they were clearly wrong), and with all the stress I'm under right now I really don't think I could face that.
It's really hard with DH, as it feels very hypocritical when he fusses at me for being tired! But despite being ill for so long, he has NEVER learned to pace, and gets upset with me saying I can't do something because it will make me too tired. He only seems to be understanding if I crash, and I can't afford to do that, as I need to make it through the work week.
But does going through all the medical stuff help? I suppose if I don't have CFS, maybe they'll find something that they can actually treat? Whatever blood tests my GP ordered showed nothing wrong, and I'm pretty sure they've done thyroid multiple times. My one oddity is that while I have post-exertional malaise, I actually handle physical activity fairly well (on dysautonomia meds -- impossible without them). I'll respond worse to an evening sitting around talking with friends than the same amount of time walking, for example.
It sounds like you are managing everything really well and you obviously do know a lot about it. It does sound as if you are juggling a lot atm with your DH, being the main income earner, new house, new baby etc which puts a lot of pressure on you. It may be that it will just take one tiny thing to tip you over the edge - a virus or something - and then you would find you can't manage your symptoms anymore. I think long term sufferers can understandably be a little bit self centred - my DD has been severely affected for 5 years so I know what I'm talking about! (this is not meant unkindly, they have a lot to put up with) and your DH is only able to focus on himself, but he relies on you so it is crucial that you look after yourself. You may well benefit from a formal diagnosis. As has already been said, there is very little treatment, but it sounds as if recognition would help you. I think the CFS/ME clinics do vary and some are more supportive than others and you would only find this out by being referred. There are various local ME support groups throughout the country and if there is one near you, they may know of ME friendly GPs. There is a list of support groups on the ME Association website or you could also ask on Foggy Friends. Remember to look after yourself
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