When you were newly diagnosed with Fi... - Fibromyalgia Acti...
When you were newly diagnosed with Fibromyalgia, did the healthcare professional provide any of the following?
Mdaisy357 VotersPlease select all that apply:
Do mention in the comments:-
What year you were diagnosed? As this might be interesting to see whether things are improving or not.............
I was diagnosed in 2016
sorry! Dec 2015
Hi I was diagnosed with fibromyalgia in 2008 an hope it gets declared as a disability
It is classed as a disability. Fibromyalgia is specifically mentioned in The Equality Act. Anything that is life long with no cure is classed as a disability. Unfortunately to be able to claim benefits or get a Blue Badge you've got to be at deaths door or can walk less than 3 steps!!! But we battle on eh?!!😟x
I vot a blue badge very easily and attendence allowance. Cant get pip because you cant get it over 65
I have read on Facebook that in America it is being noticed as a disability, when UK recognise it am not sure? 😊
Yes, we working on it, some judges are giving a hard time, but Lupus and Fibro together its supposed to be a disability. I live in Pennsylvania (USA) and some people are getting a hard time getting benefits. We call it Social Security Desability (SSDI) or (SSI) for low income individual.
The UK does recognise it as a disability. I was on High rate of DLA for Motobility and care when i only had fibro.
My daughter also has fibromyalgia and she gets pip what was disabled living allowance
I was diagnosed a few years ago, maybe 3 years ago, but I had been experiencing symptoms since 2000. I had tactile allodynia for all those years, on and off. My doctor simply diagnosed me based on my symptoms and offered nothing in the way of advice. I think he figured in his own mind that since I already suffered from long term depression and anxiety that fibro was par for the course. Not great and not helpful.
More or less the same, what he failed to take into account is that the depression, anxiety and in my case agoraphobia are all out workings of the bally Fibro!!! x
2010 when I was 20, basically black listed by the health profession ever since
Dec 2016
I was diagnosed in late 2016 after having symptoms for many,many years,but off course with no acknowledgement that the NHS might have being letting patients with clear as water symptoms of fibromyalgia!! I do believe that the NHS in the UK,and of course all other countries health services have badly let us all down with their ignorance and possible arrogance! This view is my own view, and I'm not out to disrespect the worlds health services, it is what it is at the end of the day and it is just myself having a rant,during a bit of a bad period! Thanks HealthUnlocked for letting me spout my grievances!! John. PS. My best wishes to all you fibro warriors!
Diagnosed in 2016
2016
Diagnosed in 1998 by a professor of rheumatology. Referred to Pain management clinic & hydrotherapy.
I wS first diagnod wrongly on 2016 with polymyalgia then it took until 2018 to vet back to see rheumatologist who diagnosed fibro
Diagnosed in June 2017
I was diagnosed in 2016 and my answer would be none of the above as he said he didn’t even want to give me the diagnosis as there was little they could do.
My experience in 2011!
I was diagnosed May 2016
no help or advise wot so ever
Absolutely nothing!!!
All I got was a leaflet nothing else no reassrance no advice just a leaflet and sent on my way. Quite appalling really.
Pretty much the same for me. I was diagnosed in the US where I had good insurance at the time, and the doctor had just gone on a course on Fibromyalgia at the time. This was 2002, after she ordered several significant, expensive tests to eliminate something 'serious'. She said I needed to exercise more and lose weight, but that it probably would not be very disabling.
I then came to the UK a few months later, where no doctor here would even acknowledge the condition or offer any treatment for the pain and other symptoms. Trying to exercise more and lose weight while dealing with a bad marriage and eventual horrible divorce, I had quickly grown much more disabled and ill, and various antidepressants were prescribed and tried with no help.
When I persisted asking for more treatment options, I was sent to a rheumatologist to rule out arthritis and test my US doctor's fibromyalgia diagnosis, while having it suggested again and again that I just had emotional problems. The Rheumatologist did a 5 minute exam of moving my joints and pushing on tender points, most of which were painful. She just said, 'No, you don't have arthritis; you have Fibromyalgia' and ended her consultation. I was given no info and found a leaflet on the wall of the waiting area, which made this illness seem like a minor inconvenience that could be managed with mild analgesics over the counter and exercise. My GP continued to treat me like my symptoms were mostly caused by emotional problems. A few years later, I succeeded in getting my GP to refer me to the pain clinic where I was put on Pregabalin. That caused massive weight gain, and I stayed on it for years with little relief, getting worse all the time. I was referred for acupuncture which also did not help me.
Not until I had been mostly bed bound as I am now, and educated myself online and gone through several more rude and dismissive GPs did I succeed in getting an appointment with a cardiologist who specialises in orthostatic intolerance, a common symptom of ME/CFS, and get proper testing for that and a number of other things. That would never have happened if I had not done all the research online and managed to find this cardiologist listed, the only one near me who is doing research into POTS, which I had pretty much suspected I had for over a year. It took two doctors dismissing that and telling me I need to get exercise and "push through" my symptoms, before I managed to get to a GP who would make the referral to this cardiologist. She diagnosed POTS and Ehler's Danlos Syndrome Hypermobility type. I had suspected for several years that I had ME or both ME and Fibromyalgia'.
Still no GP would use those words, even after the Rheumatologist diagnosis. They keep telling me to get up and exercise because they also don't have the time or interest to learn about POTS and orthostatic intolerance.
Not until a year ago, did I learn of a private consultant with many years of experience working with ME patients whom I was able to get a home visit from. He diagnosed severe ME, and continues to consult with me regularly by phone. GPs will prescribe the medications he recommends after he writes to them, but they will not discuss my illness with me, and decline to give me a home visit, also decline to let me lie down in their surgery while waiting for an appointment. This means I can't go to the surgery even for unrelated things after hiring a carer to get me dressed and accompany me and bring me back home, etc.
Without this ME consultant's wonderful care and partial bursary payment from the ME trust he works for, I would be without care of any kind other than high doses of mostly useless pain meds I had been on for several years after treatment under the pain clinic.
I now have an advocacy worker from the 25% ME Group charity, who is trying to get me better care, more adaptations and a wheelchair I need, as the ones I have been given are not suitable for my level of disability and it needs to be electric tilt-in-space type with extra support for head and torso and cushions. I have some hope that the advocate can get some of what I need.
If some of you are experiencing similar problems, I urge you to try to find a good charity such as the CAB or a specialist charity that can advise you. It is tough, but they can at least provide advice on what rights you have, and how to proceed and hopefully help you feel more supported. I only hope others will not just get more and more disabled like I have through following bad advice and due to neglect and lack of treatment that is suited to the individual and based on sound, up to date research and treament information.
Do you mind telling me the name of the private consultant who specialise’s in ME and where he is based please?
I worked as a qualified Nurse / sister for 28 years but then due to this horrible illness had to leave Nursing altogether!
Thank you x
Hi I presume we do not tick the boxes if the doctor did not inform us of that information, I could only tick one, it's disgraceful when you think of all they could have told us but we had to find out for ourselves. Thank you Mar
I was diagnosed in 2011
I was diagnosed last year (2017) and barely got any info. Just carry on with the amitryptiline and that was about it. No pain management help. This was the best I'd managed for several years - at least this doctor believed that fibromyalgia exists!
When i was diagnosed with fibro by my rheumatoligist i was given a leaflet that was it. It was a long road finding out about it and understanding it.
As far as I recall , I was told that my symptoms were as a result of fibro and it would last about 5 years and that was it and that was over 10 years ago.
Nothing at all until months later when i was never away from the doctors because of the pain. Medication and physiotherapist
2000 by my rheumatologist. She was very kind, understanding and knowledgeable. She reassured me that I could get through this even though it would be difficult at times.
My own doctor agreed that I had fibromyalgia, when I asked him! There was no further advice.
Only just been diagnosed and no information whatsoever.
I got so support at all.
It has been so long ago I just remember him saying it was a chronic illness and that he couldn’t sign a note for work saying that I was better. Work wanted me to take a 6wks medical leave without pay of course and come back with a note from a doctor saying I was a better. The doctor just laughed at their ignorance in requesting a note like that. I was diagnosed in 94.
I was not given any information about my illness, but was handed a leaflet and told to read it and to look up more information on the internet.
I was 'diagnosed' by an osteopath in about 2010 when everything she touched was tender. She told me to tell the Rheumatologist at my next appointment & I 'Googled' it before I went. It definitely made a lot of sense and at least it stopped me thinking I was imagining it all. Once you have that diagnosis it's such a relief to know what you're dealing with, even though you feel like 💩. Sorry, Mdaisy, perhaps I should have said all this in another post. Nic xx
Didn’t tell me anything😟
Misdiagnosed by rheumatology in 2017 and told to look it up on the internet.
I was diagnosed in 2001 at hospital, years after going to the drs
My healthcare provider only mentioned one of these things
diagnosed 22years ago took five years to get diagnosis as they had no test for the condition. it was a case of ruling out all other illnesses. thought I was going out of my mind as no one seemed to believe how much I was suffering. thank goodness they seem to know more about the condition.
at one point I was being treated with anti-cancer drugs even though they were not licensed for this condition.
My rheumatologist acted like it was a waste of her time to deal with me.
none of the above, and very little explanations on any of the other conditions that also can go with it , ie: ibs, reynards etc
20018 and have had just physio , no medication given
Diagnosed in 2017
None of the above were mentioned, no explanations, reassurances, information or medication. I was left with so many questions unanswered and had to search the internet for information - not ideal - until I found this site, which has ben a godsend.
I was diagnosed in 1993 at Hammersmith Hospital and was told it was a classic case of Fibromyalgia and they took it seriously. I was given a sheet of excercises used for stroke patients with most of them crossed out and told not to do them. I was discharged back to my consultant in the North West who then also discharged me.
Diagnosed in 2004. Received none of the info you listed above, I was left to my own devices.
It took 10 years to determine that most of the pain issues and chronic fatigue were not due solely to the rheumatoid arthritis once it was stabilised. Once the 2nd diagnosis was received, along with that lightbulb moment when it all made sense, I was immediately referred to the pain managment team who were excellent. They tailored my approach and pill schedule, given I was still holding down a fulltime job in stressful circumstances and had little to no support from my first husband - in fact, kicking him to the curb helped me enormously lol. Stress is a killer. It was "kill or be killed" within that toxic relationship!
I was diagnosed about 8 years ago, but began experiencing symptoms in the 1970’s, becoming severe enough to lead to hospitalisation around 1992, DLA a few years later, stairlift, electric wheelchair, assorted other aids by mid 1990’s. At that point was seeing a neurologist who was adamant that there was something going on, that may (or may not) be linked to the family history of progressive neurological conditions. Moved house 9 years ago to a new area, sought assistance from GP as was experiencing increasing fatigue and limitation on activity. Somehow ended up seeing a pain Consultant m although wasn’t complaining about pain, he decided that all that was wrong with me was fibromyalgia and I should “use it or lose it”. Referred me into a pain management course, which I found particularly insulting given that in my past I had helped set up and run a pain management group. I learnt nothing new, in fact I kept telling them which exercises they were going to suggest people did next to relax or self manage. I’d been living that way for over 20 years! Quite how a 10 minute consultation and very little history can lead to an instant diagnosis like that beats me.
Told me I could end up in a wheelchair!
DIAGNOSED IN 2012
Just got told "I'm diagnosing you with Fibrmyalgia because you don't have Rheumatoid Arthritis and there was no inflammation in the blood test results". Was offered nothing else apart from a booklet. The Rheumatologist was not helpful or understanding and I got the impression that she didn't even have much understanding or respect for Fibro sufferers.
May 2014 none of the above
Suffered from 2011 and diagnosed in 2016. I had to do all the research and ask the Dr was it possible that I could be suffering with Fibromyalgia
I Was Diagnosed in 2009
When I was diagnosed (20 years ago) I wasn't offered any of the advice/help on your list. I was just prescribed a small dose amitriptyline to be taken before bed at night (which didn't help me at all) and that was that as far as the consultant rheumatologist I saw on the NHS was concerned. (I later attended my local NHS pain clinic, but I had to ask my GP for a referral for this.)
Diagnosed with reactive RA in 1997 but it was stable after 5 years. After tweaking meds continually for next 5 years, my rheumy confirmed that fibro had been to blame for the continuing struggle, as I ticked all the boxes for it and only needed the basic RA meds. He said the fibro almost certainly came in on the back of the RA a decade before due to its viral onset. He said this a common trigger for fibro, as well as RA. In 2007, we went to Defcon 3 with new meds which increased steadily over next 8 years. I had to give up work in 2010. Was able to reduce the meds for 2 years after losing weight in 2015/16, but have since had to escalate them again due to continued flare up since Feb 2017. Disappointing but necessary. One day at a time, often one hour at a time...
I was offered no advice or support 20 years ago!
Hi
Remy doctors said 2017 jan I had 17/18 of the symptoms Saw a different remy doctor 2017 April and he said I had it as well has my arthritis. Nurse give me a booklet and told me to read it 2018 March
Rheumy nurse give me pills 2018 may.
Being having problems and pains for about 15 yrs.
22 years ago and they gave me a leaflet. It didn't say anything useful. My GP rolled his eyes in despair. Fibro was a sink diagnosis code for can't be bothered to look further n kinder than saying all in your head dear! Now sod off!!!
I got given a white sticky label with a web address and told to go home and research what fibro was.
Finally formally diagnosed in 2015.
I found a book in a health shop I showed my doc and the rumatolagest she prescribed amyatriptlyn and an anti-inflammatory I was already on pain meds .I told her I had had shingles then she asked if I had had a emotional trauma such as a death of a parent? my mum had passed away about 8 months before that was in 1998 in Kent
I was diagnosed by a Rheumatologist in 2005, having already been ill for 4 years, and fobbed off with pain killers, referred to Pain Clinic, who were pretty useless, and basically after CBT, messing with med's, told me 'nothing more we can do for you...off you go'. Oh, I was assured that I would never get worse than I was at that time. How wrong they were!
Mine told me I have fibro and gave me a box of paracetamol a month and warned me about the addictive qualities of painkillers. I was diagnosed in 2013 every time I look at my gp notes there is an entry in big bold capitals saying fibromyalgia. I’ve gone to the doc so many times with pain.... and usually they do sod all. I’ve asked to be referee to a specialist.....nope!
15 years ago approx 2002. I was lucky I had a lovely gp who was same age as myself at the time (late 20s early 30s) and understood, listened and was happy to work with me and try various medications until we found a combination that worked. I used to bring in research and questions and she was always happy to discuss and even said you probably know more that I do about it as I did lots of research. She also found and treated hypothyroidism too. As both conditions progressed I was referred to Rhumatologist and Endocrinologist as developed arthritis, and other thyroid and pituitary issues.
I know I was very lucky to have a good gp as I developed all these conditions fairly young and really needed help to learn to deal with everything as was very busy time in my life and I struggled maintaining career etc. Was gutted when my gp emigrated to Australia but luckily was under consultant care at that stage.
All was said no cure end of. Got new Doctor now
Diagnosed 2009. I don’t agree that this is not a progressive illness. I now have to have Carers to help me . I fall constantly as I can’t feel my hands and feet . I am double incontinent and wish I was dead. If I was a dog (my dog) I would let him have his dignity and put him to sleep.
2015 by rhumatologist i got nothing but diagnoses of FM as well my ME
I was told just to carry on the pain wasn’t physical and to ignore fatigue and not rest!
I was diagnosed by my GP, she explained what I could expect. ...pain,fatigue, etc.and gave me the name of a book for Fibromyalgia and CFS and suggested I get them ( this was before computers and such).I did buy them both and was amazed as my life made a bit of sense after such a long time. Peck 🐤
He said you probably have Fibromyalgia as well as RA and that was it'
May 2017, don't remember consultant saying anything re fibromyalgia management etc, I had already said I knew it was a diagnosis of elimination . Possibly pain clinic was mentioned then, two drugs named as possible help, but written letter to GP explaining this etc did not arrive with Gp for over two months, and I phoned Gp while waiting asking for amitriptyline!
2017 I was just handed a leaflet and that was it
Me too! Just a leaflet and to look it up on the internet. Reading all your letters have helped me far more.pp
I was diagnosed in 1999, Sorry !!
I was diagnosed by a consultant rheumatologist 7 years ago. The method was by scoring me 14 out of 17 on a scale I wasn’t aware that he was using at the time. I still have his notes. He mentioned possible rheumatoid arthritis but I was just left to get on with it.
When I was diagnosed ten years ago I was told that I would find all I need to know on the internet. When I started crying, this private GP handed me some tissues and later charged me for ‘psychiatric counselling’ because of the tears......
I was diagnosed in 2011
Firstly for this vote to be balanced you need to have a ‘none of these’ button and in addition I would have had yes and no with each section of the question. The reason I have suggested this is because I am sure I am not the only person not to have been offered any of the above help, or even any help at all!! The GP who ordered the blood tests to rule out the other possible diagnoses said I would be referred to Reumatology. I wasn’t! There was a trainee GP with him and he didn’t even try to make a good impression! It was “yes you have Fibromyalgia, goodbye” I came away very perplexed and thankful that I had my own research to fall back on!!!
"Diagnosed in 2010, if you can call it a diagnosis. I have Hashimoto's thyroiditis and other autoimmune illnesses. My GP said it looked like I had Fibro. but nothing to be done. At the time he was prescribing painkillers and thought that sufficient. So now, apart from thyroid meds. He will not prescribe anything for me, tells me I can buy things over the counter.
I was diagnosed with Fibro Oct 2012 and I was diagnosed with ME in 2008 however I have had been suffering both of these for many years previously. I have dated my Fibro to 1977/8 and ME to 1989!
No advise given ‘Other than its fibromyalgia ‘
I was diagnosed with Fibromyalgia 2016 but had the symptoms for years x
I was diagnosed in 2016 but have had the symptoms for years x
I was diagnosed in 2016 but Ive had the symptoms for years x
Jan 2018
My hospital just told me I had fibromyalgia, but didn't tell me anything else.
Diagnosed in 2017 when I moved area and registered with a new GP. He called me in on receipt of my notes and diagnosed me shortly afterwards
This is how consultation with rheumatologist went: ‘You have fibromyalgia. Here’s a leaflet for you to read. ‘
That was it!
2014
This was in about 2000, but I have had ME since 1989
I was just told by my GP that she thought it was fibromyalgia and to look it up. Also I was told to go back to my country where I had the best medical care in the world.
I was diagnosed in February 2018.
I was diagnosed this month and told as I had been in so much pain for so long I would have to accept I am unlikely to be pain free again but with good pain relief and some mental health support I may be able to find a way to adapt and accept this is what it is 😩
All my answers were following appointment I had at pain clinic where they were not officially allowed to diagnose the condition but were convinced that I had it. Rheumatologist diagnosed possible fibromyalgia . This was back in about 2012.
Was diagnosed 12 years ago, received nothing apart from a pamphlet!
I was diagnosed in 2014 I had an amazing GP who had attended a course about fibromyalgia. I had two bouts of shingles which shocked my system and so began the symptoms of fibromyalgia. I was in a high paid job that I loved but had to give up work , my employers were less accomodating and it was only last month that I finally won the fight to get my pension early, thanks to my GP. I wish people would understand that no one in their right mind would make up this condition as I have been made to feel like a shirker ever though I worked for 40 yrs never taking anything from the system. I also owe thanks to the pain clinic who explained fibromyalgia to me and helping me live with what I've got.
Diagnosed early 2010, and apart from being told I had tested positive for 17 out of 19 trigger points and I had low vitamin d, also that my body doesn’t seem to produce/accept(can’t remember his exact words) vitamin d as it should I heard nothing more about it, and because I had already had 3 major back ops and been under pain management for years I didn’t really take on board what having fibro meant, I’m only just now realising how many of my issues are probably caused by fibro
They gave me a leaflet.
Diagnosed in 2016
I got the sense of "It's just something you'll have to live with". I got 1 hour physio which was a "teaching" session, showing me some exercises to help with the worst pains, and I can get a new theraband without difficulty, otherwise most of my knowledge has come from here. In fibro and in my other health problems the NHS is just too busy to do other than the basics.
Diagnosed in 1999 They just gave me a leaflet.
I was given a leaflet! Diagnosed 2008
Hi I've been with the chronic pain team for 7 years no help what so ever.i suffer chronic fatigue and pain most days. I feel like there is not enough help..like massage therapy you have to pay for and I cannot afford it. We should have a clinic for fibromyalgia. Thanks Debbie
None of the above...!?🤷🏻♀️
2011 for me it's a constant battle...hugs to all
I was diagnosed 2018
Hello Daisy, I literally got diagnosed last week, after years of suffering I hasten add, so hope my 'vote' useful. Y
I was told would soon be well enough to go back to work lol i can hardley move .that doc was a proper joke
No advice at all! This was approximately 10 years ago and the Rheumatologist just mentioned in passing that I had fibro!!
Was diagnosed about 4 years ago, by a Mental Health professional interestingly, have received little help from my GP and even less from the Rheumatologist I was referred to - she basically told me that if I had gastric band surgery and lost weight I would be cured from Fibro. Recently attended a six week pain management course which was not geared to Fibro at all but rather to those with degenerative disc stuff etc. Basically my GP told me 'don't get into a downward spiral because of the pain, patients with fibro tend to do that and end up bed bound' - so I keep pushing myself just as I have for the last 20-odd years I have had the disease.
Diagnosed 2001 by Pain Clinic Consultant for other issues ! Symptoms for a few years! Was 7 months pregnant and had been admitted to hospital again
No real life help was just left to deal with it! Are we any better off in 2018 ?
Not so sure about that !
I wasn’t told when I was diagnosed, don’t know which healthcare professional made a diagnosis or when. I only found out when, as part of being referred to Pain Management, I was seen by a Psychologist who, upon opening my file made a bewildering statement: Hello, so you have Fybromyalgia. This was in 2008. The next time I saw my GP I asked him who and when I was diagnosed and he told me not to worry about that.
All my information on Fybromyalgia was gained from my online research.
I was diagnosed with PMR in January 2017, when I went to see the rheumy she said my PMR was not severe enough to treat and diagnosed me with fibromyalgia in June 2017, but to be fair I was referred to a two hour session packed with information, but sadly because of funding cuts the that had been cut down from a six week course... didn’t take much of it in sadly was in denial and very angry, felt really let down. Slowly learning to enjoy life again.
Love and hugs 🤗 xx
I was diagnosed about 16 years ago from a rheumy and I have had no help from from the medical profession for many years it is only in the last 3 years that it has deteriorated enough for me to keep going back until they refer me back to the rheumy it's more a case of have some more pain relief constantly 🙄
I was diagnosed in 2002 by an American orthopaedic surgeon.
He was a locum at the hospital where I'd been attending following a road accident in 1986.
I'd had all sorts of surgical procedures and outpatient appointments for injections for pain, physiotherapy , hydrotherapy etc., etc.
This locum consultant looked at my notes, and asked if he could examine me.
He was checking for, what I realised later, were tender points.
He just said 18 out of 18, you definitely have Fibromyalgia.
I hadn't heard of Fibromyalgia before, and asked him what it was.
He gave me a leaflet and sent me on my way.
I remember being happy that I finally had a diagnosis.
I went to see my GP the week after, thinking he would have some miracle cure .
Instead I was told there wasn't a condition called Fibromyalgia. He told me all my aches and pains it were all in my head.
I struggled on for several years, until my second diagnosis in 2011
At least now Fibromyalgia is recognised as a genuine condition.
diagnosed 2014 and have been told nothing had no help but what i found out myself on the net
None of the above. I was merely told by my rheumatologist that I didn't have rheumatoid arthritis after all, based on my GP saying she thought I had fibromyalgia in addition to original diagnosis, and was told they were therefore discharging me. This was in 2014/15.
I was told I had Fibromyalgia and that was it
I was diagnosed by a rheumatologist in 2014 but was given no information about the condition. I had to find out about the condition myself by researching online, whilst very ill.
I had to wait for over a year before being put on a coping strategies course and at that I was finally given some information and met others with the same diagnosis.
After a GP referral it took me four years for blood tests to be done and a fifth year before being diagnosed. I then went under hydro therapy.
I am now in my third year since diagnosis, there has been no psychological support and no input via pain services. I really feel the NHS has no recognisible or thought out care plan for fibro patients and I feel very let down by the lack of support and information and intervention I've physically received.
Everything's a drip by drip process, nothing is back to back as it logically should be and as a result mood problems have developed as a result of years lost that needn't of been. As soon as people have a diagnosis there should be intervention from pain services, especially when drugs trialled are not working and there should be support from psychology services. Especially when like in my case you've lost your job as a result of your symptoms and been left suffering needlessly for years.
I really hope others get more support than I've had and more advice how to manage their condition.
Even when I found out online about my condition and what drugs the GP could try, they weren't interested in reading the information I'd found.
Dr like to think they know all conditions but when they don't know anything about a condition or how to recognise it's symptoms, they are not interested in listening to patients, learning more or offering avenues of support for their patients.
The DWP still don't seem to see fibro as recognise able condition or disability and in severe cases it should be classed as that.
When I was eventually diagnosed the consultant basically gave me the fibro website and told me to look at it for mys of. Really helpful not.
I was told Iin a 10 minute visit I had severe CFS with Fibro from the look of the symptoms I had, she gave me a leaflet about pacing and a list of websites I should look at and to come back in six months to see how I was doing.
I was diagnosed jan 2017.
I was not told anything about the condition what I know is what I have read on here,and from reading articles online.
I was told norhing
I was diagnosed in 2001, not alot of people new or understood the pain I am in! Few of my friends and family have been diagnosed now, an they do understand now.
2004
Suggested joining an online forum and actually recommended HealthUnlocked - this was in 2012.
Diagnosed following numerous tests and scans 2015 by rhumy. Felt dismissed..
At the end of 2015, maybe Sept... not sure
I was diagnosed in 2010 and was given a leaflet that my gp printed off and told to read it.
In 1998 with none of the above and not much difference now GP hopeless.
diagnosed in 2000. Wasn't given any info/ advice except for that fibro has so many tender pain points
I was diagnosed in 2012 in North staffs, I had been complaining joint pain since 1990 and moved from Manchester to Stoke in 1997 it took me years to get to the bottom of the problem. I feel the consultants have their hands tied because the treatments that genuinely help fibro such as complementary therapies and long term physio, occupational therapy, counselling, have been decommissoned by some nhs trusts. Therapy services appear to be limited to short time frames and as we all know with fibro you can take 1 step forward and 2 back. It's difficult for therapists to evidence that the treatment is working in the limited time given to them to work with the patient, hence therapeutic services are axed in favour of fast acting prescription pain medications that can be managed by G.P.s
Absolutely none of the above; all I got was the diagnosis and prescriptions. I have noticed I never get given a diagnosis of anything nowadays. Had been seeing my doctor with pain and exhaustion for years, but only after a bout of shingles did he think to check my blood for rheumatoid markers, then was diagnosed by Rheumy in (I think) 2007/8. Since then I have slowly but steadily been getting worse.
Hello Mdaisy,
I was 'diagnosed' with Fibromyalgia in December 2012. I was sent to see a rheumatology specialist, but he was busy, so i saw his registrar who performed the 18 point test, she then left the room for about 10 minutes, came back and said the consultant said I had Fibromyalgia, and that was that. No explanation, no advise just thank you and good day.
It's only since then with my wife and my own research we managed to cobble together more facts about FM. This diagnosis fits my body like a glove. I just wished people, medical personnel especially GP's (the 1's I've seen!) Upped their knowledge about it and were more sympathetic because it is a life destroying decease and there is NO cure for it or even any understanding of what we Fibro warriors go through every hour of every day.
Thank you and please take care to you all.
Rob. X
Diagnosed in 2000
Diagnosed in 2000
1995
diagnosed 2007 no help just go to your dc no one seemed to know how it would affect me just have to try all sorts of meds
I was not explained anything, just given pain medication. I also have osteoarthritis in my spine, diagnosed at same time - 3 years ago. No doctor told me my condition could/would get worse both fibro and osteo and i am left with unmanageable pain and needing to use a wheelchair. Have given up visiting gp/specialist as told there is nothing they can do for me. Just spend everyday alone at home unable to take care of myself and home.
Diagnosed 2015
January 2018 - the specialist didn’t really give me any info just told me I had fibro and handed me a booklet about it and told me to read it 😔
I was just given a leaflet and told to get my doctor to book an appointment with the pain clinic
Diagnosed 2018
The GP gave me steroids years after I was ill. Hospital where sure it was for methotrexic.
Steroids worked great.
for sure it was 2016 or there abouts
I was told it's was fibro in 2005 There was no explanation how i got it or how to manage systoms. I was given tramadol and gabapentin and sent on my merry way
I was diagnosed in 2012.
Hi, I was diagnosed in 2016, consultant just said to move to Spain during winter, and plenty of rest don't exert yourself.
Then gave me a information sheet.
Hi Mdaisy I was diagnosed with fibromyalgia in 1998. I had suffered from a very bad reaction when I put artex on my ceiling and this made me very ill. I was sent to a rheumatologist after severe pain all over my body 6 months later and he told me that when I had the reaction to the artex that my immune system got so low that that was when fibromyalgia set in. He gave me a leaflet and it had a support group address in it which I joined and that is where I got most of my information from. I now have a lot more ailments and there are days that I find it really hard to go on. Thankfully with this group I know I am not alone. Love and best wishes to all xx
I was told I had fibromyalgia and that was it, no explanation no help no advice. Everything I know about fibromyalgia I have found for myself online
Diagnosed 2012 had it for 6 years before I went to GP who sent me to rheumatologist who diagnosed me within weeks, told me good news is I'm not going to die from this condition bad news no recovery or much in the way of treatment. That was it no help at all. Eventually GP referred me to pain clinic because I was struggling to continue to work and also had a heart condition. Jumped through all the hoops @ pain clinic and because I have 3 ruptured disc's in my spine with sciatica I get steroid injections twice a year. Happy days not but continue to try and deal with each day as it comes. Xx
Diagnosed 2017
My GP said that good sleep was a major factor in managing the condition, as this is when the body repairs itself. He prescribed me amitriptyline at night. I was not referred to a specialist by this GP or subsequent ones.
No none of these I was told by one it was my age & id just have to live with it i was 45 🤬🤬
Oops 2014
None of the above. Just pain Meds. Didn’t even know what I had til a couple of years ago and that was because I asked what is wrong with me? I didn't 6-7 years of hospital visitstaff to different depts. Diagnosed with different things each time ME, multiple sclerosis, immune system failure and varying muscular diseases.
Diagnosed in 2001 by a neurologist with both FM and CFS, after suffering for years. Initially it was thought I had MS, but all tests were clear.
Was given absolutely no information on either FM or CFS, either by neurologist or by GP.
I had to find everything out for myself, fight for the diagnosis and access to pain clinic. I was diagnosed in 2011 but had been increasingly ill since around 1994.
Diagnosed in 2012 at Royal Hospital for Rheumatic Diseases in Bath. Offered low dose antidepressants (e.g. Duloxetine), pain killers and/or Pregabalin/Gabapentin etc but refused all medication on the basis that I didn't want any toxic substances that cause even more debilitating side effects. I was then offered the Fibromyalgia Coping Skills course which was very good and helped me come to terms with the diagnosis, understand the condition and gave me strategies for managing it.
Diagnosed in 2016, constant hospital tests since 1992!!!
Diagnosed January 2012
2003
Diagnosed 2015. First visited GP in 1987. Referred to rheumatologist - never saw the same one twice. Diagnosed by locum who was running late and wrote fibro on a piece of paper and said go look it up I haven't time to talk to you about it. Then added "you're the 5th one I have given the diagnosis to today". Umm. I had never heard of it - had no idea whether it was serious. She then went on to say - we dont treat fibro so go back to your GP. That was it. I sat in the car park and cried. I then pulled myself together and said to myself - well you are exactly the same person with the same symptoms as you were half an hour ago except you have a label attached to you now!
I got diagnosed yesterday. Given a booklet on fibromyalgia and referred back to my GP lol
Consultant had little info and did not explain anything. Told me to go away and research on Arthritis UK website. Was so pleased to be given a diagnosis with a name forgot to rank questions.
Diagnosed 2003.
Hi I have fibro have had since 1995 was diagnosed in 1998. I have tried everything so I just learn how to live with it. It's very hard you think I would be used to it. I don.t think you ever do. Love susie jo
I was diagnosed 20 years ago, all I was told was I was lucky it wasn’t MS as my symptoms were similar and I was tested for MS in one of the many clinics. Symptoms would not get any worse (ha who was he kidding) I am now virtually housebound. Pain has now taken over my body, I now use a stick to walk. I’m still not giving up on this condition ............ yet!
Hugs
No advice what so ever!! I did all my ownvresearch
diagnosed 2006
2016 only took 30yrs to get a real answer not fobbed off or given excuses
The rheumatologist explained briefly what it is and gave me a booklet. As my daughter also has it I knew about pain management clinics so asked to be reffered then I got more information but all the time it's me doing the research then asking gp for reffereals. If i didnt do the research i wouldnt get any help
Diagnosed in 2015
August 2018
2018
2018
They told me very little. I have found more out myself.
Diagnosed 2003. Nothing has worked to lessen the symptoms so far
