hello gentle hugs

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hello gentle hugs

Postby ..:: lisa ::.. » Sun Jul 06, 2014 7:20 pm

Hello all
I am in desperate need of some support, understanding, ANYTHING that makes me feel less alone. I haven't been diagnosed yet, though I have seen a number of different specialists, had a few tests but as my Dr says "you seem to have the medical profession baffled"

I am in constant pain, my joints and muscles are so tired. The fatigue is like nothing I have ever experienced, I have brain fog to the point that I've wondered if I had early onset Alzheimer's. I suffer with dysphagia, speech problems, vision problems, migraine, cluster headache, I have been living on food supplements as my smell and taste is completely screwed.

In fact I feel as though my body is attacking itself and has been wired up all wrong so nothing does what it's meant to. I feel so frustrated that I used to be a fully functioning adult and now I'm not.

I have an appointment with psychiatry shortly as no one else knows what to do with me. I would like a referral to a pain clinic or specialist fibro or cfs clinic but all my Dr says is you can't have cfs you don't have a sore throat!

I feel so lost, things are piling on top of me, it's like I'm constantly catching up on everything but I never quite make it.

Any advice is greatly appreciated and once again.... a big hello to you all.
Lisa
Last edited by FluppyPuffy on Sun Jul 06, 2014 11:01 pm, edited 1 time in total.
Reason: Made paragraphs clearer for easier reading.
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
..:: lisa ::..
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Re: hello gentle hugs

Postby FluppyPuffy » Sun Jul 06, 2014 11:37 pm

:welcome: to our little sanctuary Lisa :cow-wave: :cow-wave: :cow-wave:

Sorry to hear what you're juggling with at the moment :grouphug: :grouphug: :grouphug: There is lots of support on here. It doesn't matter where someone may be on their quest to find out what is the reason for how they feel, pretty much all of us have been in a similar position at some time, so understand how it can can turn everything upside down.

All I could do when I read what your GP said about why it can't be CFS that is affecting you is :facepalm: :facepalm: :facepalm: :facepalm: :facepalm: :facepalm: :facepalm: :facepalm: If only it was that simple. Whilst cold/flu~type symptoms do tend to be associated with CFS, it doesn't mean everyone will experience. Plus there are some with FM who experience sore throats etc. I have dxs of both FM and CFS/ME, and for me, when I get the flu~type feeling, I know I'm going to be in for something pretty major flaring up. At other time, there is no sign of the flueyness, and I still get whacked with both/either one flaring.

If you feel FM may be the cause of how you feel, you will initially need to broach this with your GP. If you print up some info from reliable sources, such as NHS Choices or the main UKFM site. Go thru the info and highlight similarities in what is mentioned and the symptoms you experience. Then, when you go and see your GP, take it with you, explain that you have been looking into what might be the reason behind your symptoms etc and this is what came up, then take it from there :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed: :fingerscrossed:

In the meantime, have a look around the site. It's packed with all sorts of info and advice, so there's a chance there may be some ideas you could try that could help make things a little more manageable for you. Anything else that you want to know, just ask as it usually doesn't take too long for someone to :penguin: :penguin: :penguin: :penguin: :penguin: along with a reply :cow-wave: :cow-wave: :cow-wave:
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: hello gentle hugs

Postby ..:: lisa ::.. » Mon Jul 07, 2014 9:50 am

Thanks for the reply :twodrinking1:
I personally think my gp suspects something is going on, but in his own words "I don't know what to do, I just do what people tell me" I'm hoping after the psychiatrist appointment the doors will reopen and I might just get a referral to a specialist fm/cfs or pain clinic, but it's just another waiting game.
I've had a clear mri, negative lupus in fact all my bloods are good. This annoys me a little as my dad has rheumatoid and osteo arthritis that wasn't picked up on the usual bloods, wasn't until he saw a rheumatologist that he was finally dx.
My mum works in a gp surgery and has printed off the referral criteria for fm & cfs and I can tick the majority of them off.
They keep telling me that there is no "medical" reason I'm feeling like this yet completely dismiss me when I bring up fm/cfs.
All I want is some help, pointers on how to cope, I think I'm at the stage where I don't really care what is wrong, I just don't want this anymore.
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
..:: lisa ::..
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Re: hello gentle hugs

Postby FluppyPuffy » Mon Jul 07, 2014 10:41 am

Have a look on the Help/Tips On Coping board. It's full of different things that others have found helps make things a little more manageable for them.

With the GPs at your surgery being dismissive of the possibilities of FM and/or CFS, is there a different surgery that you could transfer to. Before making a transfer, you could try contacting them to see if they have any patients with FM, CFS or other similar conditions registered. If they do, you could then ask if there is a particular GP who tend to deal with/has an interest in such conditions, and see what they have to say.

I wish I could say that I could get rid of whatever it is for you with a wave of fairy_dust fairy_dust fairy_dust and a sprinkling of fairy dust, but unfortunately I'm having problems working out the the amounts of the ingredients I need to make it work. I've been trying it out on myself for far too long now and haven't got very far at all :( :( :( :( :(
As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.

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Re: hello gentle hugs

Postby ..:: lisa ::.. » Mon Jul 07, 2014 12:14 pm

Thank you
With the GPs at your surgery being dismissive of the possibilities of FM and/or CFS, is there a different surgery that you could transfer to. Before making a transfer, you could try contacting them to see if they have any patients with FM, CFS or other similar conditions registered. If they do, you could then ask if there is a particular GP who tend to deal with/has an interest in such conditions, and see what they have to say.


I didn't think of doing that, my thoughts were I don't want to have to explain it all over again :oops:
—(••÷[ I may ramble at times as my train of thought has crashed. Please be patient and bare with me ]÷••)—
..:: lisa ::..
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Re: hello gentle hugs

Postby denys » Tue Jul 08, 2014 11:41 pm

Hi and :welcome: to the forum
Denys

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