How Long Did It Take You To Get A Fib... - Fibromyalgia Acti...
How Long Did It Take You To Get A Fibromyalgia / Polymyalgia / ME / CFS Or Associated Conditions Diagnosis?
Hi guys,
I sincerely hope that everyone is feeling as well as they possibly can be today?
I got diagnosed very quickly (within a month) after going to see a private consultant. At that time I had never considered Fibromyalgia as I have so many other medical conditions.
I want to sincerely wish everyone all the best of luck, and please take care of yourselves my friends.
All my hopes and dreams for everyone
Ken x 
I had symptoms for 4 years before I even saw a dr about it. The symptoms got very severe during pregnancy so I saw a dr privately. I was diagnosed in under a year after that.
It took so many years, and believe that the depression diagnosis i got was more just something to label as they didn't know, so had to tell me something. I was depressed, but being in constant pain will do that to you 
Think overall, probably took about 6/7 years in all
It took me exactly a year,although the depression and panic diagnosis cane 6 years prior to the diagnosis of FM/CFS and I do feel that one sets off the other. Peck 🐤
I had a lot of pain all tests came back clear I also have now been diagnosed with cfs/me interstitual cystitis I'm a mess the depression is terrible i was diagnosed in 1993 i worked rigjt up to 4yrs ago my daughter is 32 she was diagnosed at 15 I watch her get worse every day but she's a fighter a lot stronger than me she doesn't suffer with depression but has really bad anxiety and panic attacks there should be finding a cure by now becouse although my doctor is brilliant with me once you have fibromyalgia they blame every othet illness as a link and the government's attitude to benefit and medicals in my opinion needs to be taken more sympathetically I miss working I loved my job Anyway rant over lol
Hi Janeandme. I too was diagnosed in the 90s. After being told it was either all in my head or I was doing too many hours at work, my GP finally put everything together and said he thought it was (this was after 2.5 years) and would put me on to a rheumatologist. I got an appointment through for 2.5 years later! I couldn't believe it so rang to check the year on the letter and it was right. I eventually got in with a different hospital within a few months on a cancellation list. Within the last week my daughter has been told that she has chronic Fibromyalgia plus is in need of an urgent MRI as they suspect "something a lot bigger is going on"! This has taken about 18 months to get to. She has been in so much pain and unable to move properly it hurts to watch it, as I am sure you can understand.
I understand totally my daughter is also waiting for an mri theve tried to do one 3yr ago but she had a bad panic attack so we may have to pay private as Leeds has a sit up mri scanner she cannot lay flat and is closterfobic it £800 but they now strongly believe she has ms
I truly hope you manage to help get things sorted quickly for your daughter. There is no greater pain than having to watch your child suffer (no matter how old they are) and not being able to take away their pain. Have just found out that my daughter may also have MS. My thoughts are with you. X
Awe it must be heart breaking to have to watch your daughter go through this awful disease and it must be making you feel more Ill knowing what she is going through God bless you both xx
Took me almost 5yrs to be diagnosed with fibro...they still can't figure me out entirely God Bless - Christy
It took more than ten years of misdiagnosis before a go at my surgery finally linked my symptoms and sent me to the rheumatologist for confirmation. Since then I'm ignored and have to cope with my condition on my own
Hi Simonsgirlie
That is exactly my experience too. I get no help at all just a monthly supply of Pregablin,
Had it from 27 diagnosed 35-36 now 43
.suffering really bad atm body pulsates like every muscle in my body has vertigo...i keep collapsing when i laugh with severe muscle termors...cant ever remember appointments..drop things constantly ... suicide is a daily battle right now. It wont beat me.
Cut out all preservatives and sugar from your diet. Try to go swimming. It eases the pain once you get used to it. Its all about breaking pain barriers. Its hard but worth it.
I find that really helps me too. Massive difference in pain levels when I am off sugar and Preservatives.
Dan i really am sorry to hear how low yoi are but everyone on this site understands so talk it helps keep strong ive been down the suicide root twice now i understand i hope soon a cure is found so many peoples lives are turned upside down with fibromyalgia
Hi DanC
I am so genuinely sorry to read of how you are feeling my friend, and if you ever do feel so down that you need somebody to talk to then I would implore you to ring the The Samaritans. I truly hope that you do not mind but I have pasted you their telephone number below. I have done this out of friendship and reaching out to a fellow sufferer:
Telephone: 116 123 (UK)
I want to sincerely wish you all the best of luck my friend, and please take care of yourself.
All my hopes and dreams for you
Ken
Stay strong danc understand were ur coming from tho more information and support needs 2 be given I went 2 dental hospital today for boric for my facial pain don't know how I got there felt so ill and the consultant said I looked well! Good job he doesnt seem on a bad dayl lol I'm a meet on here
This is a long story, but I will try to be as brief as possible! During my 20's and in constant pain, I was always told "there's nothing wrong with you". Gynaecologist said couldn't find a problem. General surgeon removed my appendix even though it was fine, then found an ovarian cyst, removed that. No improvement on pain - referred to the pain clinic and underwent treatment which involved injections into abdomen to kill nerves, I still have the marks. No improvement.
Many years later after our daughter was born (by some miracle) and still in pain I had to have a total hysterectomy as I had endometriosis, fibroids and PID. I then suffered late post-natal depression for a number of years and was even admitted to hospital for a month and received treatment which included ECT. Still complaining that I was in pain my GP told me that I had somatoform disorder, he said that it wasn't my fault, that I couldn't help it and wasn't really making things up! Pain was how this disorder manifests itself he said, even though there's no pain. Now, bare in mind my past history if you will............
Years went by when I felt very alone and unable to tell anyone how I felt for fear of being branded a fraud, even my husband had a hard time believing me. Something happened in June and my left leg was hurting badly and I eventually bit the bullet and saw my GP who told me it was my age, smiled at me, told me to loose weight - I had gained such a lot of weight due to the amount of anti depressants he'd prescribed (another story) - and I would be fine. One day while out shopping and leaning against our daughter, my husband decided to take me to A&E. I was telling the doctor about the pain in my leg and my husband told him what the GP had said so the hospital doctor agreed and sent me home! That was August. In September I needed an arthroscopy on my right knee and at the follow-up appt the consultant asked why I was limping on the wrong leg? I told him the tale, he sent me for an x-ray, when I came back he was sitting on the edge of his desk with the film lit up and he pointed to it and said, "the reason you're in pain and limping is because you've two broken bones in your leg".
My GP then, and one now, (I see a particular doctor when necessary now) still believed I was somatising???!! Then, I received a call from the surgery, my gp needed me to go to the hospital immediately as, he said, I have Addison disease. Long story short, I didn't and don't but spent several years going backwards and forwards to the endocrinologist who eventually told me she suspected that I had CFS/ME and with this I got a referral to our regional centre and an official diagnosis. During this time a different gp (couldn't see the other any more) had told me that my pain was fibromyalgia but it was something I had to live with as there wasn't any treatment for it. For many years I had taken prednisolone at quite a high dose as gp diagnosed temporal arteritis. This too contributed to the weight gain.
I am now 61 and as well as what I have mentioned I have had migraine since age 16, it's now treated well and I have Botox injections which have been amazing for me. In the last 5 years have had 2 spinal surgeries and have cervical spondylosis which is causing severe head pain on and off, RLS, arthritis in both knees and 1 hip and had an op on my arthritic rt thumb. This isn't everything but I wanted to show that 40 years of pain has been a hard fought battle all the way to get a proper diagnosis AND it was only earlier this year that a new GP at the surgery referred me to the hospital for the fibromyalgia. The consultant I saw, who I must say was great, wasn't surprised to hear that previous doctor hadn't referred me.
It's important for everyone to know that the pain they are suffering is real and needs to be taken seriously by their health care provider. Keep going back, with your evidence of how you feel - diaries, notes, a relative or friend etc. Don't, whatever you do, feel there's nothingness, because there is something to help. It can be very hard sometimes, I know.
My sincere apologies for the length of this message 🙄
Be well. V x
Hi Violet
Just wanted to thank you for sharing your story...... i am terribly sorry you had such an ignorant GP etc and how u have suffered and made to feel the pain isnt real.....i personally would not wish my poor health on anyone....BUT there are times i would wish it on certain people ( often doctors ) for just a day.......so they could understand how hard/bad it is.....
You are such a strong person and should be proud of yourself and thanks for the advice about never giving up......I am not a newbie by a long way but even now sometimes it feels like it would be easier to give.
Sending HUGE cyber huggies
Lolly x
Since I was a child I always complained about pain which didn't seem to bother anyone else seemed to hurt me more. My mom also said that when any of us leaned on her or bumped her that it hurt a lot. Then around 2006 (age 55) and still lived in the US , My physician sent me to a well known Rheumatologist when my ANA blood markers were found to be very elevated during a general physical exam. The Rheumatologist took a full history, did a complete exam for the physical pain points, took MRI of my wrist (not sure why), & did a bone density test. My full Diagnosis of Fibromyalgia was given within 2 months & Lupus variant diagnosis came over the next three years after several visits and blood tests showing progressively increases in markers, including two very specialised ones.
I was diagnosed in 1992 after 18 months of a misdiagnosis of Rheumatoid arthritis and prednisone as drug therapy. This was not ideal.
Hi ellerdor I was given a diagnosis of rheumatoid arthritis too even though bloods were "normal" the scan of my hands showed synovitis. I was told fibromyalgia was the least of my worries! After a year of strong disease modifying drugs and horrendous side effects and more symptoms (I think caused by the drugs) I was discharged from rheumy and told it was all fibro and osteoarthritis. Since then I have not had much help from any doctor. Makes me wonder what is on my notes that I haven't seen? hugs Joolz.x
11 years for me & I have had Fibro for 35 years.
18 months
Just under 6 months for me, I was lucky to have a doctor who listened and took me seriously.
Fibromyalgia: got diagnosis after I first went to my GP in the US a few months after becoming I'll, and she had me tested to rule out other conditions, diagnosis in about a week. I later moved to UK, and after a few years here was sent to Rheumatologist by GP who wanted my diagnosis confirmed here.
Ehler's Danlos Syndrome: 15 years
ME/CFS: not officially, but hopefully I will as I am going to see private specialist in this illness soon.
It took me 10 years to get a diagnosis from when I first started having symptoms. I was treated for arthritis even though the inflammation markers in my blood were not high, and given some pretty nasty drugs for it too. Thanks for setting the poll Ken, very interesting results.
Took about a year to diagnose Polymylagia that was 6 years ago now they say Osteoarthritis / Fibromyalgia
It took over 20 years and was first noticed by a physio I was seeing after a car accident!
5 years but still no firm diagnosis, as GP says "the medical profession don't know much about things like this" and offered me Prozac. Kept saying it was "psychological distress" and offered me counselling.
Hi theauthor
I was told probably fibro the day I collapsed which was the first time I'd been to this Drs as I'd moved from Milton Keynes to Scotland.
It then took four months before the gp changed my sick notes from tiredness to fibro but that was because she was getting nowhere with a more formal diagnosis and wanted to start getting me treatment. She thinks I also have ME/CFS but the various consultant just write to her saying she's doing everything they would do it's still not formal.
I finally see a rheumatologist next week and a neurologist probably In the summer who my gp is hoping will rule out other illnesses such as ms. She feels I'm too ill and have to many symptoms for fibro alone
Actually to be fair I've probably had it -9 years mildly but my occasional flare ups were put down to depression by the Drs in various England practices. One of them though diagnosed depression and wouldn't give me blood tests when I went complaining of tiredness. Turned out heamaglobin was 8
I began seeing my GP with dizziness and fatigue many years ago. He could find nothing through blood tests and told me there was nothing wrong and I was to "live with it."
Cutting through many years I began a particular job where I was bullied by the boss. ( truly awful experience- she would do and say horrendous things to me but would always have reported me to HO for doing these things to her, so when I finally spoke up no one believed me.) The abuse caused what I now know to be a huge flare. I was in pain, totally exhausted and unable to walk for 3 months. The GP mis-diagnosed me as having mental exhaustion. A conclusion she had arrived at due to the mental bullying.
Eventually the flare began to die down and I returned to work but in a different setting. No more bully. It took around 5 years to feel almost normal again. But still exhausted all the time.
Then family life took a huge blow ( which I won't go into) and on a family holiday I began finding it difficult to walk uphill and steps. It quickly progressed until I was in massive pain all over and unable to walk again plus the exhaustion and many other symptoms developed. By now I had already been diagnosed with osteo arthritis and believed what I was feeling was due to that. Then one day I looked on the official osteo arthritis web site and up popped fibromyalgia. It listed roughly 10 symptoms and had a caption saying ' if you suffer from these symptoms tell your doctor you think you have fibro'. So that's what I did. cutting it short again, that's how I was finally diagnosed. It was something I had never heard of before. It was pure luck that I came across it and finally can,sort of, understand why I feel the way I do.
It took over 20years of chronic spinal pain/legs/arms and chronic fatigue before a new GP diagnosed me that was 17years ago.
I first had symptoms of what has now been diagnosed as Fibromyalgia in 1976. These became progressively more intrusive in my life up until the very early 1990's when they became overwhelming and I ended up in hospital on 2 occasions. By 1994 it was recognised by a neurologist that "there is definitely something going on. This is real, it may or may not be related to your family history". (3 female members of the family including my mother had a multiple sclerosis diagnosis, at least one of which was disputed by test evidence, or rather lack of test evidence) I settled down to a restricted but disabled life, finally getting some decent pain relief in 2000. However, it wasn't until about 2014 that I was finally told I should be calling this Fibromyalgia. I remain uncertain about this diagnosis.
However, it doesn't really matter what you call something, at the end of the day it is how you manage it and live with it that makes the difference. My husband has just taken early retirement, we intend living well and enjoy the rest of our lives, starting with several good, but inexpensive holidays!
Looking back over my life I think I had it in my teens, maybe before as I remember being in pain when I was quite young and being told I had "growing pains".
I had depression when I was a teenager, and general pains through my 20's to 60's! Because you can have months, even years without pain, I think that is why doctors didn't diagnosis the condition and as I was unaware of Fibromyalgia I couldn't ask about it as you can if you have symptoms of perhaps heart problems.
At last a young locum, not long finished training diagnosed Fibromyalgia. It was only then that I read up on it and realised I'd had it most of my life.
One thing that is very evident on the LupusUK forum is that many people there have been diagnosed with fibromyalgia on flimsy grounds. There is definitely still the sense that "fibromyalgia" is a "dustbin diagnosis" used for a lot of complex, difficult-to-characterise clinical pictures that involve fatigue and pain.
I would count myself among them; after a diagnosis and treatment for Undifferentiated Connective Tissue Disease, I have developed chronic fatigue and other symptoms. I am clear that these newer symptoms are side effects of treatment; my rheumatologist believes that I have developed fibromyalgia. Either way, it seems clear that there's a lot of work to be done to clarify diagnosis and treatment.
I eventually went private to get a diagnosis, which he inequitably diagnosed within 20mins of checking me all over. Worth the £250
After a long time puzzling about symptoms I diagnosed myself from the internet which was in turn verified by a Rheumatologist.
No idea had it or when started just diagnosed 3yrs ago
I got diagnosed in a matter of weeks by a GP. It happened that my own GP was on leave and when he came back he said ' I note Dr X has diagnosed Fibromyalgia, your very lucky its extremely difficult to get a diagnoses for that'. I thought the only 'lucky' thing about it , is that you were on leave !
Spent those two years passing from one specialist to another!!
Eight years for me x
4 yrs for me and that was only because I eventually did the research and brought up the possibility myself to GP, otherwise could have been longer x
I said a few weeks but it wasn't a straight forward diagnosis. My GP at the time seemed to know straight away but the rheumatologist I was referred to didn't seem interested in fibro telling me it was the least of my worries. A year later I was discharged from rheumy and told my symptoms were all down to fibro because the drugs they tried gave me for supposed inflammatory disease gave me bad side effects! I have other conditions so it all got a bit mixed up and it feels a bit of a get out clause so the doctors didn't have to bother with me anymore. Sorry not good today. Joolz. x
Twenty years.
I was lucky my R. A. Specialist diagnosed me when I went in with arthritis in my hands and knees. Two other drs confirmed diagnosis and sorted out a referral to see pain management consultant.
It took me 2.5 years for FM, 4.5 for IBS/I.bladder. 10.4 years for LUPUS.
Well I'm 46 now and when I was 37 I went to the doc about the terrible pain in my hips . They said probably arthritis but didn't do any further investigation. So I just carried on . Pain got worse and moved to back . Didn't go doc cos I thought there's no point. Over ti.e got more pains in more areas . Went doc who sent me to the physio who said it was stiff back muscles . After 6 months of going and doing exercises that made it worse she could c I was in so much pain I was in tears . She referred me to pain clinic . Got diagnosed with interactivity in the paravertibrals ???? . Then got referred to pain doc who eventually diagnosed fibro. I wasn't glad to have it but was definitely glad to get a diagnosis .
Still a sort of on going battle no ones fully committed to actually sit down and say a real positive outcome only had it scribbled on a prescription form from Quack @RLHIM
It's like the last pea on the plate trying to pin it down with the fork!
But it's been a battle for over 20 years used to be so fit doing lots of sports etc it's something in the family
Had no idea that my new symptoms were anything other than RA. Rheumi tested my trigger points and declared I had fibro. Certainly fit the pattern (if there is such a thing) and fibro drugs are helping (duloxitine & gabapentine)
It took nearer 10 years partly due to having undiagnosed thyroid issues, gluten intolerance and a face pain issue. All took about 10 years for a dx. I still don't have a formal dx for the gluten intolerance as I don't test as celiac.
Mine to be honest is a strange one. I was put on Pregablin quite a classic fibro drug within about 4 months. My doctor never called it fibro, at first it was costo chondritis, then multiskelterol something or other then some kind of pain syndrome I forget the exact wording. Even when I was referred to a Pain Clinic there was no mention of fibro from the specialist. It was only when my GP had retired and about 5 years later that I asked the new GP to refer me to a physio for alternative help with hip pain that fibro was mentioned by the physio. I was then referred to hydro, acupuncture, and Occ Therapist all who mentioned the possibility of fibro. It was only when the Occ Therapist subsequently wrote to my GP saying she thought I had fibro that my new doctor turned around and asked why I hadn't told her that was my diagnosis!!!!
Well you can just imagine the interesting discussion after that one. I even produced a letter my old GP had sent the DWP where there was no mention of fibro but plenty of other things. I had abject apologies a print out about fibro and was told to join a forum or support group as fibro was such a difficult, multi dimensional illness to deal with without support. He laughed when I told him I had been helping out in a fibro related site for over year.
So my point diagnosed by Gp at 4 months unknown to me for 5 years.
Ten years and still not sure
It took me 6yrs of being sent from consultant to consultant it has been hell. i finally got my diagnosis on 27th april 2017 x
I think mine started at 12 with migraine. I used to come home from school and fall asleep immediately for a couple of hours on most days, other chronic problems soon followed. The GP said it was 'growing pains'.
I'm now in my 40s and was diagnosed this year.
Kept being told was bacause I was low on vitamin d . Was on that for 2 years no change
Hi all. I was diagnosed within a couple months after tests. But think I have had fibro for a few years. Just not diagnosed until all other tests came clear.
The first time my doctor sent me to a consultant he declared "you have the full 18 points of Fibromyalgit." I had been attending my doctor for up to six months them with my fibromyalgia he refused to officially diagnose unail at least 6 months as he said it was a very serious illness I would have for the rest of my life and it would get worse and worse every year for the rest of my life xo
I was away when I first got ill, but when I returned home and saw my family doctor, he immediately suspected GCA/PMR and I had an appointment with a rheumatologist the next day.
I'm certain I had it for 25 years before diagnosis
In 2005 my GP grudgingly agreed that I probably had ME. In 2012 my GP in my new area surgery diagnosed Fibromyalgia. The main difference seems to be that people with ME have low blood pressure. Mine is high and not unheard of in Fibro.
Six months for me. I was lucky because I am male. I am told its mostly woman who get it. My wife says that she was always right in that she says I act like an old woman lol.😂
I first started with symptoms over 20years ago but no GP or hospital DR could pin down issues till I moved 13 years ago.
HELLO My Fibromyalgia friends,
I'm a newbie. My first post. Been reading forum posts, which are really helpful and provides people with our condition so much of mental support. I have been diagnosed 'officially' by a private consultant recently, even though I knew 3-4 months back after searching on web about all the pain I was going through that I was suffering from Fibromyalgia. My GPs also knew but don't know why they would not put a name to it but kept me on medication meant for fibromyalgia. They did not seem or sound helpful infact made me feel paranoid /hypochondriac.
BUT when I came across this forum , I was so glad that it was not all in my head, infact I HAVE AN ILLNESS and there are so many of us who are on the same boat.
LOVE the poem by Janey about Fibromyalgia and showed my partner too. So much true.
THANKS !!!
It took about 6 years for me to be diagnosed and that was only because i started complaining and asked to se a bone specialist, as soon as i told her my symptoms she said Fybro straight away. Now every time i go to my doctors with anything they tell me it's all to do with my Fybro 😒
Eventually I was diagnosed after 8 yes EIGHT YEARS. I had suggested that could it be fibromyalgia from the outset... Sadly my go didn't agree.
I almost kissed the consultant !!
I could live with the pain, I wrongly thought !!!
What is your pain score out of 10 - TRY 20 out of 10...
And am now a Prescription Junky !!!
I pray that I can get Sativex (cannabis) on prescription - but many health authorities are not prescribing it as 3 10ml vials cost £399.99
I live in hope. ..
Carolyn CX
It took me nearly 20 years of going to various GPs to get them to listen and to even start moving towards an ME diagnosis, the first one I was given. Once I found a GP that listened, it took about a year of tests and a visit to an ME clinic before I got the confirmation.
But once I had the ME diagnosis, all my other diagnoses have taken a lot less time to get. Fibro was pretty instant in that my GP confirmed it the same day I first mentioned it to her.
As I have been complaining of the symptoms of pain, extreme tiredness, muscle aches and pains, weakness, stiffness, irritable bowel and many other things for the best part of 20 years, I assume I've been suffering from fibromyalgia that long. Only diagnosed with fibromyalgia 15 months ago! I was diagnosed with underactive thyroid in the first instance, and just told depression when I said I stil had these symptoms. Found out in March last year that I've been b12 deficient at least 13 years, which is often misdiagnosed as fibromyalgia. Started b12 treatment and feel so much better. Still have some symptoms of course and still need to pace myself, but feel like I've been plugged back in and switched on! Not at full dial but pretty good.
My journey began over 25 years ago when I was bitten by an infected deer tick. I had Lyme disease and 2 co-infections. I went undiagnosed AND untreated for 5 years. It took that long for me to PROVE to my doctors that what I had was indeed Lyme disease. [I live on Cape Cod in Massachusetts USA]
This disease nearly killed me. I belonged to a very small support group [less than 15 people] and over the course of the first 5 years we lost 4 members to suicide. They just couldn't handle the illness, and sometimes your brain/cognition can be affected.
Over the next several years [after the devastating first 5] I slowly began to get my life back. I somehow managed to purchase a home and adopt my youngest child [she is 26 now]. As the years passed I was constantly ill, battling one thing after another after another. As soon as one health issue was addressed and I would start to see improvements something else would "go wrong".
Cancer survivor, total double knee replacement, chronic depression, bilateral carpal tunnel surgery, lumbar surgery, sciatica, blinding migraines, severe neuropathy both legs/feet, insomnia, the list goes on and on, it is never ending.
At some point my chronic Lyme disease morphed into fibromyalgia. Or the two joined forces, I'm not really sure. All I do know is this, I am sick and tired of being sick and tired. I wish I could have my once vibrant life back. I curse the wretched deer tick.
Peace. All we need is love.
17 years
Hi The Author
Noticed your poll and was wondering if you knew where I could go to find national statistics on the average time it takes the NHS to diagnose Fybro?
Any information would be much appreciated.
Thank you,
