Fibromyalgia Action UK
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“At one time, Chronic Fatigue and Fibromyalgia were the same way,” Brown said "They’d tell people it was in their head"

“At one time, Chronic Fatigue and Fibromyalgia were the same way,” Brown said "They’d tell people it was in their head"

LITTLE BITE, BIG THREAT - For some Lyme sufferers, symptoms linger via @HeraldandRevie

w, USA (Google search the title as cannot provide link due to advertising)

Quote from the article;

“At one time, Chronic Fatigue and Fibromyalgia were the same way,” Brown said. "They’d tell people it was in their head. Now those are legitimate. Eventually, it will happen with Lyme. I just hope it’s sooner than later.”

Interesting article as Lyme Disease topic often comes up in this community!

I look forward to reading your comments both here and in the USA about how both Fibromyalgia and ME/CFS have been accepted by the medical profession as a ligitimate illness....... it doesn't happen very much here in the UK unless you are seeing a specialist in FMS ....

Is it widely accepted in the USA both my the medics and the general public?

Emma :)

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hi Mdaisy thanks for sharing

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We are always way behind in this country, having said that look no further than a certain Dr Wallit and his theories about it all being in our heads. Thats shocking reading material in fact its the most depressing article ive ever read.

Sometimes i think they do know what really causes fibro etc but dont want to tell us because. they would lose too much money.

Our symptoms are similar to gulf war syndrome and they were given loads of vaccines. One guy who got the vaccines but ended up not being needed to fight in the Gulf, still came down with Gulf war syndrome.

When i think back in my life i did not fair well with vaccines, i wish i never had them. Even the polio vaccine i think has caused me more harm than good.

The symptoms of polio are also similar to fibro, cfs etc.

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Hi Sadiestar,

Thanks for your reply

I worry about some vaccines too, just because if you have any of these long term conditions often an added stressor on the immune system can spiral them out of control.

This is why, rightly or wrongly I intend to refuse the HPV jab for my child at 13yrs and let them decide at 18yrs after reading all information and make their own informed choice whether they want it or not. I realise the infection could have been transmitted by then, however I don't want to say yes only for the child to go on to get FMS or ME with the family history (meaning that I have Fibro).

I consider this to be the right thing to do and plus research may have been conducted by then in relation to HPV and whether it has any relation to ME/CFS.

I hope as any parent does that safe sex is high on the agenda of teens as education focus on this .... and that my child will be as safe as possible.

What are your thoughts on HPV jab as it has had many stories of young girls being unwell with ME/CFS symptoms post the vaccine?

Emma :)

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Hi Emma, I would rather not have any vaccines whatsoever and I would gladly take my chances on whatever disease happens to be around. Im an A negative blood group which means my blood does not have the protein that the postive blood groups have.

I think some problems can arise in vaccines especially for people like me, its really more a case of what solution they use for the vaccine, some of that stuff remains in your body for life. So if it works on a similar basis to an A negative mother carrying a baby with a postive blood group, the mothers body sees it as a foreign object and attacks it. Maybe the same happens with a vaccine and we end up in a permanent state of our body trying to fight it off, only it cant because the body cant rid itself of the manmade trash they put in those vaccines.

Its difficult with so much cancer around these days and the food we eat is so contaminated that the younger generation wont have the best immune systems to fight off some of these diseases.

I think the best solution is building up a very healthy immune system so the body can cope and fight off disease by itself.

Its a tough decision to make but I wish my family had given me the choice. Purely because of my family history over 3 generations and knowing the blood group status and health conditions many have suffered i think we would have been better off with no vaccines. xx

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Yes Emma really interesting, thanx for sharing xx

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You can have other tests for Lyme disease in a Germany lab.

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They seem to be spot on in Germany so I have heard :)

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Apparently so.

Quite costly though. Plus you still need the antibiotics...

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Yes ..... I believe so and even if you have a diagnosis there, bring it back to UK apparently many leading Healthcare Professionals dismiss it. = No Win situation ..........arhhhh frustrating :X isn't it??? :)

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Suppose you would have to find a private doctor.

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Exactly that.....and how many can afford this ?? The NHS is supposed to be work on these 3 core principles

*that it meet the needs of everyone

*that it be free at the point of delivery

*that it be based on clinical need, not ability to pay

Silly isn't it ...that many people could potentially have Lyme, be costing the NHS billions maybe as being treated for the wrong condition long term .... crazy !! :)

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It ought to be on those core principles. Unfortunately, the NHS is dying. I kept getting cancellations. Had to go private.

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The lack of funding is slowly strangling it .... :X

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I agree. Sad isn't it?

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Very .... :,)

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Hello Mdaisy,

I have not worked since Feb 97 and was diagnosed in c1998 with M. E. and secondary fibromyalgia by a specialist in immunology, Dr Ian Hyams.

I live in SW Cornwall, UK and most GPs I have encounteted recognise the conditions. However, I do find the majority of the medical profession either treat the physical symptoms or the mental health side and appear to find it very difficult to treat the person as a whole.

We used to have excellent support close by backed up with occupational therapists but it has all been lost now for some reason, maybe NHS funding.

Hope this helps.

PS: I often read the posts on this site and love how positive you all are and how well you support one another. I would often like to join in but M. E. is really my main condition.

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Hi Lottiesweb

I wonder if I have the opposite Fibromyalgia with secondary ME .....or even Lyme Disease as never been tested.....

Unfortunately most of us have had the it's psychosomatic tag and have had both Healthcare Professionals and members of the general public with little understanding make this assumption. I don't think here in the UK the statement in the title really fits - I wonder how long it will take to get to this stage???

I too, used to have excellent support from community nurses who could monitor me, take bloods etc but funding reduced so not allowed them anymore. They definitely helped in my coping with the condition especially keeping an eye on Vitamin D, B12 etc ..meaning my symptoms were more stable.

The NHS and most Healthcare Professionals don't seem to understand and we need to keep fighting to ensure they do ....even it's to help the next generation :)

Emma :)

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The first rheumatologist didn't test me for Lyme. Second one did the test because it was private. He was quite dismissive though.

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LOL - Just replied to you above about the test results being either disregarded, not treated or dismissed. If they made the UK test more reliable maybe the results would be more reliable! - Go Figure ...even the patients like us and general public can work that one out ... :)

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Hello Mdaisy

I agree, it can be frustrating when the medical profession and general public do not understand the condition(s). I must admit that the medical profession in my area are understanding on the whole. Whether that is because there was an M.E. clinic 12 miles away headed by a Consultant and team with a team of OT's. The Clinic had days in different hospitals. All GP's were aware of this clinic. At my doctor's surgery we also had the benefit of an excellent Clinical Psychologist who had a special interest in M.E. This area of SW Cornwall has been very fortunate.

As regards members of the public I choose not to explain my condition. Mainly, because the energy it takes to explain I prefer to 'bank' for my own use. Fatigue is my most prominent symptom.

Only a Dr or Consultant could give you a diagnosis. I do not think I have been tested for Lyme disease. I guess because I have lived with M.E./Fibro for so long I manage the conditions myself.

Take care

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My old rheumatologist was a lime desease specialist,I have lupus / sjorgrens , and I think ME / sepsis / ME he would not except the lupus diagnosis only fibro even though I don't react to the pressure points but I do have neuropathy, and my bloods showed lupus antibodies.

I have had a second opinion and fibro and lupus again been diagnosed now I wait for new consultant been waiting 20'weeks only another 22weeks to go 😊 Not long now .

My eldest daughter has a friend that was diagnosed with lime desease 12 years ago at his first year of uni he completed his degree from his room and his friends brought him his lecture notes he got a first and runs a business from his bedroom now and successfully, but has had know life he is now 31! he does regret that hike through a field in shorts through that field in the Lake District !

Hugs all

Chris xx

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Thanks Emma, I personally think that Lymes should be investigated further with all patients that present at a doctors with potential Fibro symptoms. My gut feeling is that many patients diagnosed with Fibro may potentially have Lymes?

Thanks for an interesting post my friend.

All my hopes and dreams for you

Ken x :)

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I agree - due to the testing not being as comprehensive as other countries there are potentially a large number of people who may misdiagnosed both in FMS & ME Community unfortunately. How many of us can afford to go to Europe on a hunch to get tested? I wager, not that many!1

They need better testing for it in the UK now, as it is going to be more prevalent due to warmer climes and has the potential to be part of a health crisis here in the UK in the future...... :( As this article is points out , there are more cases .... people need to protect themselves as much as they can while out in the countryside.

Emma :)

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Yes, there was a feature on the BBC news channel recently. I have pasted the link below:

bbc.co.uk/news/magazine-345...

All my hopes and dreams for you

Ken x :)

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