Isn't about time that the NHS and GP surgerys woke up!!

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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby Jacky55 » Fri Nov 14, 2014 2:28 am

Sorry, me again. I've just put a link up, didn't think it would work, and it did!!! Suddenly had a scary moment, :yikes: am I allowed to put the link on here. Really sorry, please accept my apology. Jacky. X :oops:
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby zappa20 » Fri Nov 14, 2014 3:58 am

Tel1 wrote:Hi All

Naturally of course.... NONE of us want to have MS but Fibro is also on the so then why do we all get a down graded condition that
isn't as bad as MS ? I know several people who have had MS since they were in their 20s... and yet 30
years on they are still up and running and not going down hill as rapidly as it was first thought they would,


Considering the amount of times I've read threads and posts on this forum , upset at comments from workmates or family that someone else they know , with Fibro doesn't seem to be as affected by Fibro as they are , and question it making the person feel they're exaggerating their symptoms . I'm quite astonished to read such an insensitive comment. Particularly in regard to a degenerative and terminal illness like MS. I'm delighted if some people with MS haven't went downhill as rapidly as first thought, because a young man I worked with a long time ago, died from it within a few short years.

I agree with what Caro has posted. And after reading the petition which has been linked , I'm not convinced it has been either well thought out or written .
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby dazzleship » Fri Nov 14, 2014 8:41 am

I think (although please correct me if I'm wrong) that the people calling for a petition / writing to health minister just want this illness to be taken seriously. I just read a post on another thread where someone who works for the NHS was told by their manager that it's not a real illness. this is the sort of crap (excuse my french) that we have to put up with all the time because no one takes this illness seriously. it's seen by a lot of people as "made up" or we're just being lazy, malingering, etc.

in fact my own workplace told me - when I told them I had this illness - that it was lucky that they knew someone who had a relative with it otherwise they wouldn't know what to do. which I took to mean they wouldn't have believed me otherwise. which is frankly shocking and upsetting.

with regards to MS - I don't think that comment was insensitive, after all there are different "types" of MS I believe, some of which get worse than others. it is true that Fibro symptoms often mimic MS symptoms.

and what really grates on my nerves about this is - at the moment I am suffering (just like the rest of us here) symptoms that have been given a label of "Fibro" and as a result I get pretty much no help and support from the medical community, no understanding from family and colleagues, etc.

but if I was to suddenly have a test and it was discovered that my symptoms were suddenly called "MS" instead, then I would automatically get help and support from my doctor, much more understanding from my colleagues, etc etc. and I'd automatically get a blue badge!

yet my symptoms wouldn't have changed; just the label given to them. how the heck is that fair? :evil:

(and yes, I know, MS can get worse, but the suffering 'here and now' is the same for both illnesses. therefore we should both get the same help and understanding).

as for the petition linked to on this thread - I had a quick glance and thought it seemed to be advertising some sort of treatment (actipatch?) which put me off cos I don't want to sign a petition created by some medical company. plus it looked to be an american petition, which probably wouldn't do much good here anyway? (admittedly I only glanced at it so I may have misunderstood though)
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby migrembe » Fri Nov 14, 2014 10:49 am

That petition is an advertisement for Actipatch or whatever it is called and i am not interested in that, although across the country NICE guidelines would be good but not if it means that we get stuck in the system moving from one NICE guideline to the next.

It would also be good to see something on alternative treatments such as acupuncture and meditation classes, etc free on the NHS and more local support groups, my local group is over 10 miles away and far to far for me to go. and better access to counselling and support generally.
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby hazely » Fri Nov 14, 2014 11:32 am

i'm in
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby carolad » Fri Nov 14, 2014 11:56 am

migrembe wrote:
It would also be good to see something on alternative treatments such as acupuncture and meditation classes, etc free on the NHS and more local support groups, my local group is over 10 miles away and far to far for me to go. and better access to counselling and support generally.


The thing is that 'the NHS' isn't actually one organisation, but a number of separate authorities, trusts, GP surgeries etc. So you will never get the same treatment offered across the board - this applies to all conditions, not just Fibromyalgia. We have all heard of the 'postcode lottery' when it comes to medical treatment, even for life threatening conditions like cancer. Even from looking at people's posts on here, you can see that some are lucky to get referred to Pain Clinics etc, some aren't. Some are routinely sent for tests, other people have to ask for everything themselves. And sending a petition to a Health Minister isn't going to change that.

Even if the Government was to debate Fibromyalgia...this is going to have no impact on what the general public think. And does it really matter if people believe you or not? Everyone has their own difficulties in life, everyone is going through some sort of physical or mental pain - no-one really understands what it is like to be in someone else's shoes. And some people in your life will be empathetic, some won't, that is just the way it is. So there is no point trying to fight against that, it will just cause you more stress and frustration...and that isn't going to do your health any good :( I do what I can to look after myself, I don't tell many people about my symptoms...and I don't care if they 'understand' or not :)

I also don't think there is any point trying to tackle things on a general basis. It is better to think about what you personally would like to happen, what would improve your life. If you would like your GP to refer you to a Pain Clinic, then ask your GP; if he refuses, complain to the practice manager, change to another GP, explore other alternative therapies for yourself...do something that will actually make a difference to YOUR life, rather than waste your energy campaigning for something general that will have no practical impact on your personal situation.

Anyway, that is my view....if you disagree that is fine :) But I just don't want to see people pinning their hopes on something that is going to have no positive effect on their lives. There is no magic wand...you just have to explore different options to see what works best for you :)
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby paularose » Fri Nov 14, 2014 1:42 pm

Oh yes yes yes and yes!!!!! More awareness and then maybe our immediate families and friends might take it seriously too..........we can hope :-D
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby FluppyPuffy » Fri Nov 14, 2014 1:57 pm

Jacky55 wrote:Sorry, me again. I've just put a link up, didn't think it would work, and it did!!! Suddenly had a scary moment, :yikes: am I allowed to put the link on here. Really sorry, please accept my apology. Jacky. X :oops:

Linkys that are relevant to the topic are fine Jacky :cow-wave: :cow-wave:
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby Tel1 » Fri Nov 14, 2014 2:12 pm

I think I will let you guys get on with all this:)) I shouldn't have mention it.:))))
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby SchroedingersCat » Fri Nov 14, 2014 2:12 pm

Carolad speaks much sense :)

I'd prefer to have FM than MS, thank you, a friend of mine in her 20s died from MS within 3 years of diagnosis, she never saw her little girl go to school :(

If you* want people to be more aware, talk about your condition in a factual, non-whiny way. If you want more help from the NHS, ask for it. I didn't struggle for anything when I went to my GP to find out if what I had was FM. I had every test going and 3 referrals straight off. I've never had a single person tell me FM is a made up illness, or that I'm lazy, faking it, or any of the other awful things that people here have had happen to them. Maybe I've been very lucky, or maybe I approach things differently, who knows, but I can tell you there are a lot more people in the Yorkshire area and further afield who now know what FM is and what it means to have it, since I talk about it openly and honestly to colleagues, neighbours, friends, family, and online contacts on a regular basis. I've had loads of people say they'd never heard of it, and others say they thought it was the same thing as ME or CFS, and all of those people will now know how to deal with it when they meet someone else with FM. That's how you raise awareness, not by lobbying politicians - believe me, I worked for one and they really don't give a monkey's about anything but hanging on to their jobs.
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby cocobella » Fri Nov 14, 2014 2:25 pm

I'm in too! x
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby carolad » Fri Nov 14, 2014 2:26 pm

SchroedingersCat wrote:Carolad speaks much sense :)



Thank you, I think I have upset some people though! :shock:

I really don't think this Forum is for me...I seem to have a different outlook to the majority of people on here. That's ok though, everyone has to find their own way through life. It's like friendships...sometimes they last forever, sometimes they last for a short while but then it is time to move on...

x
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby dazzleship » Fri Nov 14, 2014 2:35 pm

Tel1 - sorry you feel shunted out of your own thread. I thought you'd raised some good points. :hugs:


SchroedingersCat - "factual, non-whiny way"? seriously? :evil: okay that's lit a bit of a fuse. just because you and Carolad find it easy to get on with your lives and get help and support from your family and colleagues does NOT mean that everyone else with fibro is as privileged as you.

so you had every test going and three referrals? well lucky you! that's just fine and dandy. it makes me feel so much better while I am sitting in my 14th week of a 12 week wait to see a rhumatologist. :roll: (oh I'm sorry, did I whine there? pardon me)

at my work there are the grand total of two people who have heard of fibro (and that's simply because they know someone who has it). everyone else gives me the trademark blank stare when they ask what is wrong with me and I tell them (and no, I don't "whine" about it). clearly you've never had to put up with the blank stares from people who don't understand it. and yes, I have tried to explain it to them but they just don't get it.

and clearly you and Carolad don't either, as you think because you have it easy then so does everyone else, or we should just suck it up and get on with things. that's the sort of narrow-minded attitude I expect from people who don't have fibro. what the hell happened to sticking together on this forum?

and as for rather having Fibro than MS? not everyone dies from MS you know. and as I said in my earlier post, why the hell - when I have symptoms the same as that - should I get no help and understanding just because my symptoms have a different label? huh? answer me that. I'm still suffering the same. so is everyone else (apart from you and Carolod, of course).

if I sound angry, it's cos I am. and I make no apologies for it.
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby SchroedingersCat » Fri Nov 14, 2014 2:40 pm

Well that wasn't entirely unexpected. No, I don't find it easy to get on with my life. But I do get on with it. Judgemental? Did I at any point call you whiny? No, but if you want to feel insulted by it, go ahead, its a free country
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby dazzleship » Fri Nov 14, 2014 4:56 pm

SchroedingersCat wrote:Did I at any point call you whiny?
I didn't say you called me whiny, but you chose to use that word so it was clearly aimed at person or persons on this thread and I thought it was uncalled for. I don't like arguing with people on here but I was offended on behalf of whoever you were referring to by that comment. that's all.

Tel1 - apologies if I have contributed to your thread going off-topic. that wasn't my intention.


back on topic - I would support a decent online petition if there was one.
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