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 zappa20 » Fri Nov 14, 2014 6:46 pm

dazzleship wrote:



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 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

if I sound angry, it's cos I am. and I make no apologies for it.


Dazzle with regards to the time waiting for your appointment, I waited 12 weeks to have an angiogram done when having irregular heart beat and angina. Followed by an 18 week wait once it had been found I had a major coronary artery blockage and by this time had unstable angina which is life threatening. My GP had actually sat my husband and I down in his surgery and explained all the different ways a heart attack could present that I needed to be aware of , so I would call 999 immediately.

Point is , I was no more of a priority than hundreds of others waiting in line on a rather long list , for this heart procedure. And neither unfortunately are you. While pain is distressing etc etc, unless it is immediately life threatening or indicates something very sinister or serious then you're not a top priority. That is how the NHS appointments work in reality. And anyone who wants any more will have to pay to be seen quicker privately. . And I don't want to concern you unnecessarily , but many people who see their rheumatologist hoping he will have all the answers and be sympathetic to their symptoms, leave their appointment more than disappointed. So be prepared just in case.

With regard to blank stares etc, why would you expect other people to have a good understanding of every condition on the planet. People lead their own lives, blissfully unaware of many things which go on in the world. Even type 1 diabetes, which is one of the most well known conditions on the planet, I've found most people haven't got the first clue about it. Other than a very vague understanding , which they've usually got totally wrong. Same for most other well known conditions.

As for Fibro being ignored, as far as I'm aware, it is now recognised, and many people with it have received help from social services if required, or from occupational therapists etc who have provided adaption to their homes. Same with things like welfare, as far as I'm aware Out of work benfits and disability payments are paid to people with Fibro and tend to be awarded based on a persons individual limitations or needs , not simply their diagnosis. And Fibro as far as I am aware is also legally catered for in the workplace, where changes and adaptations have to be made if required. They can also access certain medically approved complementary therapies via their GPs or Pain Clinics.

So as far as I can see it is all covered and legislated for in the same way as any other condition. What you can't legislate for people, in their levels of empathy or understanding , nor how they will respond. Unless their reaction openly contravenes this regulation. So things like blank stares or a lack of full understanding is out with that remit, and no amount of parliamentary petitioning is likely to make a difference to that.
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby marie marrison » Fri Nov 14, 2014 9:24 pm

I so agree I had all the test imaginable and I took them nearly three years for the diagnostic, I think we should make a petition regarding pip and any other benefit we should get, I went to the pip visit and they refused to pay me anything because I can make a sandwich but what they don1t take in consideration that I can walk very far, and most day I am in a lot of pain :cry:
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby becbob » Fri Nov 14, 2014 10:24 pm

What I would like the most is some form of "after care" after I had been diagnosed. It was a case of seeing the Rheumatologist, she then sent a letter telling me I had fibro and that my GP would see me from now on. I do see her lots but there was no emotional help. I see her for meds only. It was basicaly down to me to find my own way. I had no help in understanding what this illness is about, no help with regards to organisations or websites with help and information for me. If you are given a diagnosis of M.S or cancer etc then you are given some guidance and you come up with a care plan.. My sister in law was allocated a specialised M.S nurse who she can see and contact whenever she needs to. She says her nurse has been a god send. We have nothing of the sort. I have never been given any guidance with regards to FM or what to expect in the future. No help was available for me. I felt very isolated and lost. I have said before that I had never even heard of fibro until I was diagnosed with it, nobody really gave me any information. Nothing was explained to me. It is help, guidance and some form of after care that most people need and that should be bought up and petitioned for. Maybe not everyone will need after care but that should be decided on a case for case basis. But it should be offered and it's then up to the patient to accept or decline.
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby *Lisa* » Sat Nov 15, 2014 12:33 am

dazzleship wrote:
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:



My friend recently asked me how i was as after living with a fibro diagnoses for over 10 years with 15 of symptoms and then being told by the consultant Rheumatologist that actually he thinks i have ankylosing spondylitis! I said im delighted!! :yikes: :yikes: :yikes: Yea! im thrilled! :yikes: :yikes: Why??? because exactly what you said above!

Most people would have come out of the consultants office crying just being told they have ankylosing spondylitis but i was happy! (also shocked!) because i know i will get the support i need, the right medication, a support group and much much more! yet as you said above nothing has changed! i still have the same symptoms just a different label!

I spent years and years fighting this alone and feeling isolated. People thinking it was all in my head! had never heard of fibro and no one knew or understood. Falling out with friends and family as i felt i was not listened to and supported. Sarcastic comments like *just loose some weight* *get a job it will take your mind off it* and so on....

Even close family when finding out of the ankylosing spondylitis turned to me and said *so you have been so unwell* :-? and many people know about AS and I now have sympathy! :yikes: not that i want it but soon as i mention to friends or even when i was chatting randomly to an older lady at the vets waiting about AS (was chatting about bad backs and walking dogs) i get *oh poor you* :shock:

Its like i am now taken seriously when i am *ill* even my doctors have changed attitudes! :shock:


ankylosing spondylitis is a deteriorating condition so is MS which is why its well supported :?: :?: :?: :?:

becbob wrote:What I would like the most is some form of "after care" after I had been diagnosed. It was a case of seeing the Rheumatologist, she then sent a letter telling me I had fibro and that my GP would see me from now on. I do see her lots but there was no emotional help. I see her for meds only. It was basicaly down to me to find my own way. I had no help in understanding what this illness is about, no help with regards to organisations or websites with help and information for me. If you are given a diagnosis of M.S or cancer etc then you are given some guidance and you come up with a care plan.. My sister in law was allocated a specialised M.S nurse who she can see and contact whenever she needs to. She says her nurse has been a god send. We have nothing of the sort. I have never been given any guidance with regards to FM or what to expect in the future. No help was available for me. I felt very isolated and lost. I have said before that I had never even heard of fibro until I was diagnosed with it, nobody really gave me any information. Nothing was explained to me. It is help, guidance and some form of after care that most people need and that should be bought up and petitioned for. Maybe not everyone will need after care but that should be decided on a case for case basis. But it should be offered and it's then up to the patient to accept or decline.


I understand i was in the same situation, went off with a leaflet and that was all! had to research and find websites and forums for info. Have had to pay for my own treatments for over 10 years ! i rely on physio yet the NHS cannot fund this so i have no choice but to pay myself as for me its better then medication but i didnt get any help to find this. I had to search and find therapists and test them all out to see what one helps me the most.

I also had to fund my own mental health to cope with a chronic illnesses as back then unless you were at harm to yourself of others you had no chance of getting on the list! i got loans out at the time against the house to fund for it all. Needless to say its left me in debt. I also paid for some private consultants as i became desperate for help, like a pain management plan yet i was told to stop wasting my money, stop searching for answers and curs and just take paracetamol and go swimming! (funnily enough this consultant 10 years down the line is the most kindest sympathetic man now hes feels i have AS!) :-?
As a Public Moderator & Admin 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...Lisa
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby morette5 » Sat Nov 15, 2014 1:26 am

PRINT THESE PAGES AND TAKE THEM TO YOUR GP.

I have just seen this and it may change All our lives. It basically says Fibromyalgia, CFS and similar little understood diseases are caused by Mycoplasma and can be CURED by an antibitoic called DOXYCYCLINE. It also explains why blood test come up with nothing. Take a print out to your doctors ASAP. Spread the word, we could all get our lives back in 3 months.

http://bariumblues.com/mycoplasma.htm
http://bariumblues.com/mycoplasma_nexus.htm
http://youtu.be/LGmFmml8KU0

The Japanese prove frontal lobe damage, (this is is the Mycoplasm scaring.)
http://www.cortjohnson.org/blog/2014/09 ... -syndrome/

My GP has arranged an all GP surgery meeting as a result.
They said none of the GP's had ever heard anything about it. They wanted to know.

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

Postby *Lisa* » Sat Nov 15, 2014 1:52 am

:woot: :woot: :woot: :woot: 3 months !! :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing: :bear-dancing:

Would you believe a simple antibiotic is the cure ! :chicken-dance: :chicken-dance: :chicken-dance:

Was nice knowing you all :wave: :wave: :wave: :wave: :wave: :wave: :wave:
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby dazzleship » Sat Nov 15, 2014 9:49 am

zappa20 wrote:Dazzle with regards to the time waiting for your appointment, I waited 12 weeks to have an angiogram done when having irregular heart beat and angina. Followed by an 18 week wait once it had been found I had a major coronary artery blockage and by this time had unstable angina which is life threatening.
zappa, that's terrible you had to wait so long for something so serious.

oh believe me I know I'm not special or a priority. and I am prepared for the rhumatologist being a waste of time.

zappa20 wrote:With regard to blank stares etc, why would you expect other people to have a good understanding of every condition on the planet.
nowhere have I said that people should have a good understanding of the condition. what I'm saying is that if you mention 'arthritis' or 'MS' - they know there is an illness called that. but with fibromyalgia, people just haven't heard of the word before, they have no idea - that's what I think needs to change.. people need to know that there is an illness called fibromyalgia.

you've surely seen - just as I have - people posting on here saying their GP / consultant doesn't believe fibro exists. this also has to change! if people in the medical profession don't believe it exists, what hope do we have for the rest of the population? and even the ones that do believe that we have something called 'fibro' they still don't always seem to understand why we are as ill with it as we are (why are you using crutches, etc). a doctor should not be asking that! they should know what it does to us!


*Lisa* wrote:Most people would have come out of the consultants office crying just being told they have ankylosing spondylitis but i was happy! (also shocked!) because i know i will get the support i need, the right medication, a support group and much much more! yet as you said above nothing has changed! i still have the same symptoms just a different label!
Lisa on the one hand I'm sorry you've been diagnosed with that but thank you for understanding where I'm coming from with what I said earlier. that's what I just don't get - surely we should get help/support based on the symptoms we're suffering, not because of what name it has.


morette5 wrote:I have just seen this and it may change All our lives. It basically says Fibromyalgia, CFS and similar little understood diseases are caused by Mycoplasma and can be CURED by an antibitoic called DOXYCYCLINE. It also explains why blood test come up with nothing. Take a print out to your doctors ASAP. Spread the word, we could all get our lives back in 3 months.
I recently finished a course of this very same antibiotic for my sinuses. :-|


anyway I hate how inflammatory this thread has become. so :hugs: to all
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby migrembe » Sat Nov 15, 2014 10:49 am

Carolad - You quoted my private message to you on a public board you could have asked if you could do that and you should have quoted it in it's entirety and not just the part you thought would get you the most pats on the back.

The other part was talking about how we should get the Fibromyalgia syndrome changed to a disease. People understand the word disease better and syndrome is an unknown.

Getting stuck in a NICE pathway would not necessarily work without some flexibility within it - i was a staff nurse i know.

What is offered should be the same across the country. I believe there are areas where acupuncture, etc is offered on the NHS free but it is not where i live. I live in a very big area and although i was referred to pain clinics and told where the nearest support groups were they were too far away to get too. I had to give up work due to FMS CFS and depression and live on benefits i do not have enough money coming in to even pay my mortgage so there is nothing spare for alternative treatments which puts me at the mercy of the NHS
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby denys » Sat Nov 15, 2014 2:32 pm

Carolad used the quote from a post made in the thread Migrembe???? I have looked for any other quote they had used and cant find one, but if you can point it out to me or one of the other mods we will take it down as obviously a PM is just that private and we wouldnt condone anyone quoting something sent privately without the permission of the person who sent the message

This thread is quite fiery, so if the OP wants us to do anything about it they just have to ask
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby rubes » Sat Nov 15, 2014 2:45 pm

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

Postby SchroedingersCat » Sat Nov 15, 2014 5:54 pm

dazzleship wrote:
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.



Actually, it wasn't aimed at anyone specific on here. Trying to mind-read computer code isn't usually a good idea, that's how most Internet arguments start.

For the record, none of my family apart from my OH, and none of my colleagues had heard of FM before I told them about it. And yes, I am one of those annoying people who manages to hold down a full time job (as an office manager), run a home, walk the dog, have hobbies and a social life, and do all of it without more than OTC meds. I know this has upset people before but I'm damned if I'm going to tell it any other way than it is. Yes, FM has had a major impact on my life, but it's not killing me and I'm not sitting around crying about how much pain I'm in for the simple reason I find I don't notice the pain so much if I keep moving and keep busy. If that offends people I'm afraid I don't think that's my problem. Ad now I'm going back to finish cleaning the kitchen it's cold in here and I'm stiffening up sitting at this desk.
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby carolad » Sat Nov 15, 2014 6:04 pm

I am very upset to have false accusations thrown at me. I have never received a personal message from Migrembe. The only quote I used was the one further up in this thread.

I know people are upset, we all have difficulties...but trying to blacken someone's name is not going to help anyone.
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Re: Isn't about time that the NHS and GP surgerys woke up!!

Postby FluppyPuffy » Sat Nov 15, 2014 6:36 pm

I've locked this before we run out of :fireman: :fireman: :fireman: to try and contain it.

Denys has already looked at the quotation in question, it isn't a quote from a pm, it's a quote from a post made on this topic, and as such, is fine to be quoted on here, either partially or in its entirety, as has been done with other comments/posts.

We each have our own FibroQuest to find our way thru, as well as battling our with our own Fibro~Minion. There isn't one route, or a yellow brick road that must be followed to do this, we each have to find our own path, the one that suits us best. It doesn't matter if no~one else is on it, or if it is one being taken by others, it is what is right at that moment in time.
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