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Author Topic: I don't know where else to turn. Any advice?  (Read 403 times)
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TheMac
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« on: June 11, 2018, 12:33:35 PM »

Hello people.

First and foremost, I think it's only fair that I should mention that I do not have an official diagnosis of CFS and whilst it's possible that I might have it, it's also possible that I might not. Please note that I'm not seeking any validation to any diagnosis. Just some genuine advice that could maybe help point me in the right direction.

And so for 20 years now, I have plagued by bouts of crippling tiredness and fatigue to the point where I just have to sleep or just lie in bed because it's impossible to fight it or do anything else. As well as that I have headaches rather occasionally. I feel drunk and disoriented. Profound brainfog that disables my ability to function properly. IBS. As well as other aches and pains now and then too. There was a time where I would frequently visit various doctors again and again to get to the bottom of this. The best answer they could come up with was that it was probably stress, depression and/or anxiety because I used to have a history of that. Despite me telling them that that's not the case, they kind of fobbed me off anyway to psychological services that have been no help to me at all. Since then I feel none of this has been taken seriously and for a long time I have given up in any proffesionals ability to help me and I don't know what to do any more.

I came here because I don't know where else to turn, but seeing as I can imagine that a lot of you guys will have had to have gone through the same kind of bullshit as me before you actually found the answers you sought, I'm hoping a lot of people here can relate to this and can even offer some useful guidence and advice.

Many thanks in advance.
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roger
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After 12 years of trying, I'm now A OK


« Reply #1 on: June 12, 2018, 05:25:30 AM »

Hi TheMac, and welcome.

You're right. I'd guess that a very high percentage of members and visitors to this forum have experienced 'doctor frustration'. To be fair though symptoms of stress/anxiety are extremely similar to those of what the system calls CFS.

Regarding advice, maybe look around the various boards then ask any questions you have from doing that? We're here to help whenever we can, so such questions are very welcome.

Best wishes.

Roger
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'Nothing is, but thinking makes it so'
satmanbasil
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« Reply #2 on: June 22, 2018, 08:41:28 PM »

Hi

either google or ask your doctor to refer you to a local cfs/me clinic in your area most teaching hospital should have a clinic. Your doctor will first need to run some blood test to see if there is any underlying
illness but if they come back normal and your still feeling much the same then he can refer you to be seen by a consultant.

best wishes
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chill
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« Reply #3 on: June 24, 2018, 11:06:58 AM »

Hi and welcome themac

The way i see it, and its just my opinion, if you have had tests for everything else, ie full blood panel, anaemia (iron, b12 and folate) etc, whether you have officially been given "the label" or not is irrelevant, it means nothing because there is nothing medicine can prescribe to help, in fact the only reason a diagnosis is useful is if you need it for benefits and other offical reasons, for you (us) its pointless.  I do have the official label, lucky me, and it has helped me squat, so as long as everything else has been ruled out you know yourself, and i am sure you have researched the syptoms, (though not everything you read can be relied on.  I use medscape and the mayo clinic pages mostly) better than anyone you can start to look at ways to treat your symptoms, natural remedys, supplemets etc.

I agree that asking for a referral to a specialist would be a good idea, because as much as i think the diagnosis is pretty pointless, i also think its unacceptable to just be fobbed off by people who are supposed to be there to help, so keep pestering your gp or find one who will help.

I hope you get somewhere and find some support here, i know how you feel and am sure most people here do too.

take care

chill

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roger
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« Reply #4 on: June 24, 2018, 11:59:19 AM »

Well said, chill  clap
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clarkeemilia
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« Reply #5 on: July 06, 2018, 03:59:29 AM »

maybe look around the various boards then ask any questions you ha
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