How many people have been diagnosed with fibro and CFS?
There’s seem to be lots of awareness campaigns for CFS lately (unrest film in parliament etc) and also lots of research that is getting closer to finding a cause. Most medical people I have seen say fibro and CFS are basically the same thing (different ends of a spectrum).
I am hopeful that finding the cause of CFS (ME) will help.
What do other people think?
Hi yes I have. But my main condition is Functional Tremor, which comes with Fibromyalgia and Chronic Fatigue. In my opinion in having all three they’re not the same. Fibro is more pain where ME is more fatigue. Although tiredness of course comes with Fibro. It’s difficult for me to say really as with having all three of these illness sometimes I don’t know which is which when it happens. Sorry if this doesn’t make any sense. I’m in a lot of pain atm 🙁 xx
Hi Em, sorry you're having such a rough time ❤️️ and are in such pain. 😟
I'd agree with your opinion that having all three of the illnesses which affect you, are not the same. Wishing you as speedy a recovery as is possible, under the circumstances. Please rest and be as kind to yourself as possible ❤️️ Love, Barbara xx
Iv had fibro for 10 yes,and was told I has cf as well last week,my doc saide there sort of 2in the same thing
A Lors ... you've been having a rough enough time without getting that news ❤️️. Here's to better days (and much better news!). Blessed Be, with Love, Barbara xx
M.E. and Fibro are generally taken as being the "Terrible Twins" for those unfortunate enough to have both.
There's been a little 'noise' in the Media ~ there has been a lot over the years, celebs, sportspersons, included. Sadly, very sadly, it all dies down and goes away.
I have never, in my personal experience, ever heard any Clinician state anything even vaguely relating to M.E. as being more 'fatigue' and Fibro as being more 'pain'.
Perhaps one of the biggest 'sins' / insults the Medical Profession assaulted those with M.E. with, some 17/18 years ago was to rename it "Chronic Fatigue" ~ they apparently felt more comfortable with that name. Pity they didn't ask their 'patients' how 'comfortable' they were! The use of M.E. has re-entered medical terminology once again.
The symptoms of M.E. alone (giving only the 'common symptoms') are: significant physical or mental fatigue
* post-exertional malaise (a reduction in functioning and a severe worsening of symptoms after even minimal exertion) * debilitating pain * sleep dysfunction * cognitive dysfunction * neurological impairment * sensory sensitivity * severe immune dysfunction.
M.E. is described as being: "a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems".
And that's before the Fibro symptoms are, unfortunately, tagged on too. Fibromyalgia being every bit as misunderstood as M.E. is by many in the medical profession.
M.E. is generally, but as yet NOT widely, accepted as being not 'one' illness but consisting of a number of illnesses (the whole being more than the sum of its parts) ~ which is 'why' there's no 'single' test available for it, and as it's still very poorly funded with regards to Research, there's no 'single' (read: any) cure for it.
The same goes for Fibromyalgia, unfortunately regarding pain, research funding and no cure.
Numbers? In the UK approx 250,000 ~ USA approximately 1 Million (many of which I, personally, am assuming will also have Fibromyalgia)
As to numbers suffering from M.E (and assuming Fibro?) ~15 to 30 Million world-wide (estimation as many are undiagnosed/misdiagnosed!).
It wasn't pleasant writing that ~ and I'm sure, for some, it's not made for pleasant reading either.
And, yes, I've been diagnosed as having M.E./Fibro for 29 years.
Hi, I was diagnosed with M.E. over 30 years ago,and fibro about 10 years ago, and my GP at the time told me that both illnesses often go hand in hand! Bad luck for us eh? To have one such debilitating illness is bad enough,but to have two is totally devastating in many ways isn't it????
Morning Eggcustard
I was diagnosed with Fibro back in 2008 after a second opinion and living with symptoms for 2 years+. I have recently been told by GP she believes I have ME too which I have been saying for years!
There has been a lot of awareness recently for ME and Fibromyalgia following both Unrest and Lady Gaga's film. Unrest is really emotional and tells the story of living with ME daily extremely well. I was glad so many MP's watched it and hopefully understood the plight of those with ME including the lack of financial resources for research. I hope this will bring about change in this area.
Fibromyalgia & ME may have similar symptoms but have entirely different clinical findings, so I would personally disagree with whoever said that they are part of a spectrum.
My reply on the post below which was from a few years ago talks about the differences between Fibromyalgia & ME
healthunlocked.com/fibromya...
Also recently research has shown according to the film that certain biomarkers are found in ME relating to the immune system but obviously it would be fantastic to get funding to increase upon the research in this area.
I notice in the film she was given antiviral so which seemed to give a marked improvement in symptoms of ME but unfortunately without further research this is not currently offered to the wider population with ME. However it is exciting times as I hope this will bring about change!
Interesting post and I look forward to reading comments. Plus maybe this could be a good idea for a poll for November to see how many people with Fibro do have ME too?
Hope you are having a Fibro 'good' day!
Emma
I knew that the Unrest film was being shown in Parliament, but haven't seen anything about numbers of MPs who attended or any reaction from them. I would like to know if any action is being taken, as there has been a cross party group for years led by the Countess if Mar, and almost no MPs attend, and little has come of it.
I am in the 25% ME and Fibromyalgia group severely affected, mostly bed bound. I have no medical support as my GP surgery and the other two I used in the past don't recognise either condition as serious and mainly treat with continuation of long term pain meds that don't help much. In the past I was given various antidepressants, nine of which helped, and sent for CBT
A few months ago I requested a home visit from a private ME specialist who works with ME Trust. He offered this service to people like me who are not being served by NHS doctors in their area as they are too I'll to visit the surgery or their doctors don't offer them treatment. His availability is very limited, especially outside of his local region. I learned about him from ME Assoc. magazine. He made a long journey to visit me and assess me at home. He continues to advise me in periodic phone calls and emails and send recommendations to NHS GP, who then prescribes.
Thanks to him, I have an ME diagnosis after years of knowing that I fit the symptoms. This hasn't helped me get any better attitude from my surgery, who will not make home visits or even let me lie down while waiting for an appointment despite a diagnosis of POTS from a Cardiologist after lots of testing. I can't sit upright for more than a few minutes, and it seems you have to go out at least 4 times a week to even qualify for a tilt in space electric wheelchair which you gave to pay for anyway from Motability scheme. I don't qualify on that basis so can't manage to do much in a normal chair which I have to have a carer push.
My private ME specialist was able to get a partial bursary payment for me to help cover costs of his time and travel here for a visit and occasional phone calls.
I have had some really nasty experiences over the last year from Adult Social Care manager and from two supervisors at the care company contracted by Social Services. There is persistent disbelief and disgust that I appear to not need the care they provide and am 'too demanding', for example, because I am sensitive to perfumes they sometimes wear or that I need food and drinks made for me, meat cut up and meals served in a way that I can manage to eat in a low reclining position in bed. They see me as a malingerer, despite having my specialist's detailed letter and list of symptoms and requirements.
The agony of these illnesses, plus Ehler's Danlos, IBS, and POTS as well as Fibromyalgia and ME is horrible, but it is more horrible to be bullied, lied about, and harassed in my home by ignorant people whose job is supposed to be to support, organise and provide compassionate care.
My usual carers have been wonderful in every way, but these so-called professionals and people in authority have caused me a great deal of anxiety and distress. It gets worse when I am in more pain, as they perceive it as me just pretending. Vomiting and diarrhoea sounds coming from a toilet, groaning and panting as I slowly move with my trolley back to the bed, only made their behaviour worse. I have been considering requesting an investigation from CQC, and can't go to management above them in the care company, as they are all mates. The better carers tell stories of problem managers, neglect and poor care of other clients.
I don't want to start over with unknown new carers, as the ones I have had for the past two years are so good and I trust them. Fortunately, I only have these two supervisors filling in occasionally, but their gossip and what they say and write behind my back can affect decisions that are made. I am already being pressured by the problem ones and GP doctors in the past to do more than I can safely do without much worse flares afterwards.
These people need education and to have appropriate training in how to deal with severe chronic fluctuating conditions. They don't get it at all. Please sign petitions, vote for candidates who have sincere concern and voting records that support care of people like us, and do all you can to spread awareness of the injustices we struggle with regarding lack of support, respect and proper medical awareness from those in authority as well as the general public.
Thanks for being a supportive community online.
Hi budgiefriend
Thanks for your reply, I will reply at length in a while as ironically feeling a bit fatigued and going for a lay down. On a positive note the bathroom is cleaner! 
I see the film mentions anaerobic and aerobic energy and how that we can function to a point until we need the body to make energy (ATP) and the cycle does not work like healthy people. Guess I have used most of my spoons today already......oh dear 
The link to read about the Unrest showing in parliament is below for your interest, 52 MP's attended I think I read
meassociation.org.uk/2017/1...
Hope today is a 'good' day for you
All the best
Emma
Thanks for posting the link. Rest well. Gentle hugs
CFS/ME and Fibro
CFS in addition to Fibro 
Any ideas on whether you can get DLA for fibro and CFS?
I'm not sure if this is a result of a night time seizure or ME/CFS/fibro related
first time at me cfs fibro group today
