At What Age Were You Diagnosed With F... - Fibromyalgia Acti...
At What Age Were You Diagnosed With Fibromyalgia? The April Poll Is A Question By Member Clumsy_Mrs:
TheAuthor655 VotersHi guys,
I sincerely hope that everyone is feeling as well as they possibly can be today?
I was diagnosed at the age of 48 after visiting a Private Consultant due to having problems with back pain and mobility. I had recently fallen over due to electric shock sensations which turned out to be caused by a compressed Sciatic nerve, but the rest of my pain never went away. I continue to experience all over body pain.
All my hopes and dreams for everyone
Ken x 
I was diagnosed in my 20s and did not believe it . Then major problems in my 40s and then when I could not handle the pain anymore or the disability my body developed I went to the Dr and seem 4 of them with all saying I at age 53 have fibromyalgia.
My arms my legs hurt all the time !I thought for sure it was from a tick bite and Fibronylgia is not it is really Fibromyalgia ( lime De from the tick bite!)I truely beleave this !
I think its lime and there is no such thing of fibromyalgia...The Doctors dont even know what fibromyalgia is !So,I really beleave it is Lime! They just stuck that name on it ,but they really don't no !
There is a blood test for Lymes Disease which would give a definitive diagnosis
its a difficult one-I sent mine to America where its known more about and the bloods came back inconclusive.50/50 basically so I'm soldiering on but it's a VERY tough one once it becomes chronic to diagnose.
My Neurologist told me Fibromyalgia is real and that it is a problem with the central nervous system.
That's my exact thinking too.i was bitten at age 50 and suddenly started with pain in my ribs.i still swear it's Lyme.
Hi crystalship it may be a good idea to talk to your doctor about this and ask for a UK blood test for Lymes Disease? I want to sincerely wish you all the best of luck.
All my hopes and dreams for you
Ken
In 2010 I was bit by a tick and I started getting tired,head aches ,sick to my stomache .year later my legs started aching ,my arms etc And so on!I live in truro ns and I know they don\t do the right testing here for Lime d.They are all keeping this hush hush is what i think!Ive went to the meeting twice and It was on lime .This guy that was there said he had the test done in truro ns .negative,went to ontario,possitive!SO there yah go!They are not doing the right testing here in the Province of ns and the Government is also saying there has bee only a couple of cases thats not true at all!
Hi again dustyrose I have pasted for you below a link to the NHS Choices cache on Lymes Disease and it does appear quite informative my friend:
I was diagnosed with fibromyalgia in my late 20s. Now I'm 38 I also have neuropathy. I have seen so many doctors for my pain. A Rheumatologist told me I have fibromyalgia years ago but never helped me. They always sent me to water aerobics which never helped. They prescribe me muscle relaxers. Nothing will ever help with this pain. They even treat me like I'm making this pain up. They said exercise and you will feel better. That makes it hurt more. I have been diagnosed with neuropathy for a few years. My neurologist sent me to Ku hospital in Kansas. The doctor ran so many test she checked me from Lymes to Brian and spine imaging. The only thing she found out is I have a spine issue. I know I have lymes. Why would every doctor I have been to check me for years. It is just not showing up in the labs. I also checked positive for skin lupus and I have rosacea. I feel awful everyday and it's getting so much worst. I have not been able to work in years from this illness. I wish there was real help for this kind of pain. I also have osteoarthritis. any advice would be helpful.
Hi 2mitzyarnold I am so genuinely sorry to read this my friend and I want to sincerely wish you all the best of luck.
All my hopes and dreams for you
Ken
Diagnosed at 38, after 15 years of flares & remissions, while the duration between them became less over time.
Diagnosed at age 53 -this came after school of rheumatoid arthritis followed by osteoarthritis ,whoever said things come in 3's was right in my case.
I to was diagnosed with fibromyalgia then osteoarthritis then plantar fasciitis in both feet. All in the same month just days apart.
Hey everyone I was diagnosed when I was 25 was pregnant with my son really tough pregnancy with preaclamcia they put it down ton hormones as I was pregnant but starated with burning skin very red back pain. Since then the pain has just got worse I've had to give up work.
Took about for years, two operations and countless tests before finally being diagnosed with fibro by a Rhumetologist whomi later found out doesn't believe in it!
Patrick
Hi, I will diagnosed in my 50's by my gp, she told me there wasn't any treatment for fibromyalgia except to take painkillers!
Ore recently we have a new gp in the practice, she referred me to a rheumatologist. He specialises in fibromyalgia and was extremely thorough with my examination. At the end of which he confirmed long standing chronic fibromyalgia which should have been treated as long time ago. He also said that it was very difficult for patients to get a proper diagnosis as many people, medical professionals included, don't understand fibromyalgia and dimiss it. However I feel very lucky to have found this doctor who seems to understand and have an empathy for people with the condition. He said that sleep is an important part of of gaining control. Ha! If only, I said, so the first thing to do is to try to get my sleep patterns sorted out. ...............
This condition isn't Lyme disease!
Trust me,Lyme disease is no picnic!
Dear crystalship, I didn't mean to offend, I realise that Lyme disease can be nasty if not treated correctly. But what the point I was making was that fibromyalgia and Lyme disease are different. V55
You didn't offend me,sorry if I came across abrupt,really wasn't being. these diseases are awful,throw so many things at us and completely mess with our heads.
Hey, that's fine, no worries! You're right though, I can't remember the last time I had a clear thought 😳
I was diagnosed with fibromyalgia at 35 after many years of suffering with migraines but when they got really bad that I was stuck in bed for 4 days at a time then my arms wrists and back started with pain a doctor finally referred me for an mri scan and then had to see a neurologist and I explained every thing to her and she diagnosed me with fibromyalgia within the last 2 years everything has got worse I can't do the things I used to anymore not even my house work the fibromyalgia has also affected my vision I know have to wear glasses all the time and have dry eye I also was diagnosed being diabetic a couple of weeks ago which I don't understand as I have lost my appetite I am waiting for physio on my legs some days I feel like cutting them off they hurt so much xx
I understand how you feel. It's very difficult to explain and express how difficult it is just to get through the day for basic needs, without having work,family and pets to care for.
"I feel your pain"
try and keep your legs.. Life would be much harder with out them .. Lol. 😜
Hi Kitty/79 I too suffer from Fibro and find it has taken over my life. I was very houseproud but find it really hard these days, then end up in bed with a flare-up if I over do it. I dont have any eye dryness, the only thing that gives me blurred vision is my pregabalin meds. I see you have diabetes also which may cause your eye problems but I have recently read one of todays posts where a fibro diagnosis was incorrect and turned out to be Sjogrens (hope I've spelled that correctly) which causes dry eyes and mouth I believe plus other things. Maybe worth having a read anyway. Hope things get a bit easier for you it is exhausting some days. hugs x
I've suffer with pain for years but only got diagnosed last year, I'm 44 years old.
I was diagnosed in January 2016 aged 56 but like most people I think I have had fibro for quite a few years. I think my fibro was triggered by stress and trauma, I had treatment for PTSD diagnosed in 2011, which could have been a trigger but just having rheumatoid arthritis for years or any chronic illnesses I think can trigger fibro. My family are wonderful and supportive but no one understands fibro unless they have it mainly I think because it hides itself so well.
Hope everyone has a lovely weekend Linda x
I was diagnosed when I was in my 60s but I think I have had it for longer than that but it steadily got worse I had a very bad time when I was fifty I lost my mum I went through a very bad menopause and was diagnosed with under active thyroid all at the same time so I believe this is when my fibromyalgia started I have now got a pair of legs that are driving me crazy and my feet really hurt so it's back to the doctors and more pulls I suppose. One thing to look forward to summer is nearly here thank goodness. Please keep well my friends.
I was diagnosed with nerve damage after 2nd operation to remove the remaining lymph glands after my breast cancer op. I began to suffer from bad nerve pain in my arms and over the years things just got worse and I now experience all over body pain.
I am convinced that both being hypothyroid and perimenopausal contributed to my condition not until I decided to take a small amount 0.5 of estrogen gel did I turn a corner definitely hormone related for me it would seem -get your blood checked are you in the period menopause years.
I saw a new rheumatologist last month and he said there is definitely a hormone link to fibromyalgia. He said a lot of females are diagnosed either in their 20s or around menopause age. My symptoms have become much worse since the start of the menopause , although they started in my early 30s after a trauma. It seems that lots of people with fibro have thyroid problems too, maybe we should be going down the endocrinology route instead of rheumatology. Furry X
You are so right about the thyroid, definitely a connection there.
Hi all, when I went to my doctor he told me at first I had Polymyaliga, but after seeing a consultant he said Fibromyalgia. Thinking back all this started after i had hip replacements way back in 1997 & 1999 when I had so much trouble with scars & tissue that I had all sorts of therapy because I was in so much pain I would have been in my 40 then as after the ops the scaring was from the lower thigh up both legs & around the hips & still have that problem as the nerves were all cut through so scaring was so sensetive & still is. Nowadays you have a scar about 3 inches long & I'm told these have to be replaced again as more pain & can't walk far. I am using a new thing its called an ActiPatch which I have found gives me a lot of pain release & I can wear it over night too. With both kinds of Arthritis I need a lot of pain relief so here's hoping it all works out.
what's an Acti patch?
Hi janearcher1970 *Acti-Patch themselves say:
*ActiPatch® is a new and clinically proven drug free technology in the fight against chronic muscle & joint pain.
You stick it on your body like a plaster my friend.
All my hopes and dreams for you
Ken
I was 40 when diagnosed but had fibromyalgia for about twenty years before that, it was a new GP that finally diagnosed me.
I hope everyone is as well as you can be. I was diagnosed with fibromyalgia when I was 50. My doctor was doing lots of tests and they where all coming back negative. He handed me a piece of paper and said I want you to read this because I think I have fibromyalgia. Jan101
I was diagnosed at 44 but symptoms began at 33 after a trauma. My symptoms have become much worse since the start of the menopause.
I was diagnosed only recently at 32 but Ive had symptoms since I was 16.
Hopefully in the next couple of months I am 50 now
Good luck Flossytops_67
I was diagnosed with Fibromyalgia 18 years ago, struggled with no information or support. Got a computer and Internet to research info myself, and realised how little GPs are aware of, how difficult it is to get tested properly, or to get a correct diagnosis.
I changed my GP practice two years ago, thankfully I don't get loads of drugs pushed at me, and had a referral to M.E/CFS centre where CFS was officially confirmed. It looked hopeful, saw an O/T 12 months later, then was referred to a psychologist who I saw 6 months later, just twice and is now off sick (for 5 months) and there's no back up, so am in limbo. I really wish we could have the input of an expert, but there are none available within at least 250 miles of Cornwall.
Government are slashing financial support, and pushing people who are sick/disabled into work, but it was my work that finally finished me off, have been 3 years desperately trying to get well again, and to find a job that fits with my limitations. There's no expertise on 'how to achieve those aims without getting really ill again'. Have been subjected to GET/PACE previously, which made my symptoms so much worse.
How do we attempt to get over this physical illness, or get well enough, without professional support?
In view of the recent GET/PACE scandal and falsified data, why are NHS still pushing this form of treatment? It is cruel, painful, and pointless.
Hi, I must have been 'lucky' I was diagnosed by Professor Wolfe, who was head of Rheumatology at Treliske hospital.I wasn't given any information or real help though. I eventually found a doctor who understood Fibro and I now take 150 mgs of Amitriptyline a night. I went up slowly to that dosage which my doc said was the correct dose for Fibro. I still get pains, but I can function and I am so much better on this amount. I would urge you to try it.
Hi Mary,
This is yet another example of how confused our medical profession are regarding, not only the diagnosis but also the treatment for this mystery illness; I am prescribed 75 mgs of Amitriptyline per day. According to my GP this is the maximum dose advised for FMS!
As sufferers we don't stand a chance....it's the blind leading the blind!
Hi Kathy
That is so true. I have seen some research that looks promising, but no good to the here and now and our daily struggle. I can only say that on the 150 mgs I am a lot better than I was. My doctor looked in his 'book' and said that was the recommended dosage! I was in so much pain and fatigue my family thought I should get a wheel chair but I was frightened if I got in it I would never get out. I can function much better now and take walks and a bit of gardening and housework. Only the flares catch me out these days. Hope you feel better soon!
Hi Mary, I'm so glad the Amitriptyline is working for you. I was taking it previously, but doing shift work I wasn't getting it out of my system in time to drive. It made me feel awful, dehydrated and spaced out.
I had so many meds, it was having a terrible effect on my body. All I take now is levothyroxine, and natural supplements alongside a healthy diet, to manage my symptoms. Have also cut out gluten, dairy, and sugar, which made a big difference. I'm so reluctant now to take anything, but will take paracetamol if desperate.
I hope you keep on getting better - it's keeping the flare ups at bay that seems to be the key to managing FM.
All the best xx
Ah yes, the flare ups. What fun, do you find that even your family have trouble understanding. Every time I meet a new person I feel I have to aplogise for how I am! Interesting that you are feeling better after cutting out certain food groups. I am lacto-intolerant and as I have type 2 diabetes, I am going to cut out carbs and sugar. I shall be very interested if that helps the fibro!
Take care xx
yes
Mine was June last year I was 67 - spondylitis since 1986 - these new symptoms in June last year were affecting top of thighs knew it wasn't spondylitis.
Today and I don't know why - I've woken up and everything is aching and sore to touch - not experienced this all at once - was at theatre on Thursday to see Bowie Experience - some songs the guy had Bowie spot on but others not - it was good but wouldn't give thumbs up so I don't know if it's the sitting as I know when I sit somewhere different I get aches but not like this - and just recovering from an attack of asthma - steroids and amoxicillin - oh the joys 🤣🤣🤣🤣🤣🤣🤣🤣. Take care folks 😘😘😘🤗🤗🤗
I had my first excruciating attack of Chostocondritis in 2006 when I was 46.From then on I had continuous pain, tender spots & fatigue.I was back and forward to GP, after about 2-4 years she suspected it to be Fibromyalgia . This went on until I was finally "officially " diagnosed at Rheumatology in 2013.Phew !
I was in my late 40's when I was diagnosed, but I know I've had this for many years previously. I am now 65. I had never had Costochondritis until last year and it was a horrible experience, so painful! FMS is usually worse for me in my shoulders and arms, but this past 3 months I have been in a lot of pain with my lower back too. I take Amitriptyline and Gabapentin at night, and had been steadily trying to cut down on those, I hate taking meds 
I am type 2 diabetic and asthmatic too, I also suffer from vertigo on and off. Some days I get so tired I can hardly function.
I suspect mine, although a private Specialist was also NHS Prof.[ sports & geriatric ] .He defined mine by history , symptons and the the trigger points , which , although he didn't know it at the time,were heart failure symptons .
In 2007 had a MI cardiac arrest after no referrals & knowing from Research again had had haematuria ? Urodynamics .Nobody took it further even though had been begging for assistance and had been targetted physically out of my livelihood by one LA while another refused assistance ? This was when antibiotics witheld for chronic utis acute 3 weekly and appts taken away when GPs said not trained in disability???!!!.Who was my MP JC what did he do left it to his staff maladministrating on same LA remits?
So I took on DLA appeals x5 as gave took away until had to die [ revived with angioplasty x3 ] . This links to the Low Priority policy if you have multi conditions it considers chronic so can give to the unqualified medically to treat? - lifestyle? This is as Specialists are being directed by contract so the hippocratic oath is no longer! To survive personally have found acupuncture to be a Godsend! The Specialists said I was "lucky!"
This doesn't tell the length of time someone has suffered in limbo. Next Poll should be both when symptoms were first noticed and presented to the dr, and when diagnosed? That would be the shocker I think. Also the time line. Are people being diagnosed quicker now than before and are they perhaps too quickly ruling out other options in favour of good ol fibro?
I'm seeing people diagnosed back and forth with different things. It is a very unclear condition.
Hi Al10 that question is on a short list for the May poll my friend.
Of course. Oops! I also wonder if someone is believed, diagnosed and treated earlier, is their treatment more effective? Or after decades of suffering (with the resulting mental distress) is this harder to treat? I notice many people on here are very cynical from being disbelieved, misunderstood and at the mercy of Drs who are frustrated treating conditions that are not really treatable.
Hi I was diagnosed 3 years ago, after on going all over body pain. It started after treatment for my cancer, and slowly took over, referred to a rheumatologist who diagnosed fibromyalgia, a long with other things.
I was 48.
It was only given a name when I was in my late 50's, but was first told "there's definitely something going on, just don't know quite what" some 15 years or so earlier, which in itself was many years, about 18-20 after I first started going to Drs occasionally because of the issues I was having..........
I was diagnosed at 42 but I think it is Lyme disease, I asked doctor for the blood test and she ignored me. My whole body pain and exhaustion started after a tick embedded itself in my right foot and not knowing the correct way to remove it, I ripped it out in panic and part of was stuck in my foot, the flesh did have a rig around it and the tissue went black and wouldn't heal for 8 months, it was horrendous.
I have also suffered extreme spine, hip and pelvis pain for 25 years after an very bad accident, so its debatable whether this is related to my hyper Mobility Syndrome as I have a beighton score of 9/9 last year, or whether it was fibromyalgia that was undiagnosed, and I'm wrong about the Lyme.
Had it since 1994
I think mine started in my 20's but took over 30 years before i got told what was wrong i went throw a time i losed the use of my legs my arm and keep dropping every thing was ill all the time and couldn't sleep much was fobbed off all the time with it's all in your head or i was making it up has been a right battle to get to where i am at now and i feel like the world made me feel like a loser which never helped me to get better but when i got told what is wrong I was so over the moon not that i have it but someone now understands it's not all made up or i'm not making it up was like a weight was lifted of me and i cryed so much now i look after me and think about what my needs are and if someone don't like it i don't give a dam anymore i have to think of myself not what others think so that's how i live now i tell everyone about it and tell them to read up on it and see if they could live with it everyday and see how much they can cope with everyday and how much fun it is for them sorry for the ramble
I had knee problems from the age of 14 was told it was growing pains but it has continued then went to hips and hands which is Osteoarthritis but was told at 26 it was Fibromyalgia and to go home and live with it. I have struggled believing that it is this as I hadn't had the fatigue and all my pain was In my joints but now at 54 the pain is much worse in the joints and I get other symptoms as well which seem to coincide with fibro I think I felt for a long time they were just giving me a label and then when you go to the Drs with anything they say it's the fibro.
Hope everyone has a relatively pain free day. Gentle hugs to all
I was diagnosed 15 years ago off the back of Ankylosing Spondilitis, I went back to Rheumotologist after being in remission of A.S for 10 years because the pains has returned in the same places. I had an ESR blood tests which tells if inflammatory levels are up, they weren,t! After involving a specialist physio the rheumo doc diagnosed fibro with chronic fatigue, I joined a group via Occupational Therapy who once again took me for hydrotherapy which has helped me keep movement and mobility but not reduced fatigue if I overdo things. As time has gone on fibro fog got worse and I had to give up my nursing Career and take early retirement.
I've had energy issues since having my 2nd child in 2002 when I was 33. I recall feeling like an old person. However things got worse, pain, brain fog etc. Then in 2009 I was much worse. Had neighbours who would cause me to be woken regularly through the night and from then my all over pain and tiredness got much worse. The doctor then suggested it was Fibro but wasn't made official until 2016 after visiting Rheumatologist for 2nd time. I also have neuropathy.
I used to suffer migraines (just the aura type) with fatigue. I personally think everyone needs to increase water intake to help prevent migraines and lessen the effects of fibro. It works for me. I use a water purifier.
When exercise is recommended, it's in very small amounts to start. Then gradually increase. I know sometimes easier said...
I have autoimmune diseases in my family.
20 years and one week ago today! Feelzs like a lifetime lol....
I was diagnosed after a car accident..after 1.5 years of rehab. I ignored it and partied like a rock star..didn't feel too much pain as I had consumed so much alcohol..changing jobs all the time...then I got clean..started walking alot and stuck to strict regime of early mornings and early to bed(easier with 2 boys)...Was pretty pain free when I lived in Florida but now back in U.K...my recent flare has been 4 months ..mobility is bad but not paralyzing. ..working in warm pool and pacing has helped..now diagnosed with osteoarthritis in lower spine...more exercise!..must return to work as can't claim benefits with my visa..the key is to be positive and remember "Rome wasn't built in a day!"
Oh I was diagnosed 25 years ago.Fibromyalgia was new and was told to never have a sitting job.I am 44 yrs old now..been working very physical jobs..not worth it!
I was diagnosed at 31 but had symptoms for 4/5 years before diagnosis
I was 49 and got diagnosed after contacting septicaemia and couldn't walk for several weeks .
I was misdiagnosed with RA at 28 3 months after the traumatic birth of my son, changed rheumatologist at 33 when I got the correct diagnosis. My FM has got worse over the years so I'd love to see a poll done to see how many others have found the same or if anyone has actually recovered from it.
Yea hi it took 10 years for me to be dignoised .i started not normal tiedness .new there was somethink wrong. I was given a wrong dignoise done tests for diabetes which all come back postive .after 2 years was told i didnt have that no apologies for all stree it had cause me. So they just left me all them years .when i kept saying there was something wrong.new doctor come to my clinc scape my fiels and then i got digonisce and then rumertologise .i started with exhused then i got pain later to the point i could cut me legs off.then couple year now started with burning pain on my skin too hurt in places i shouldnt hurt. All doe they never rule out other things like fibo didnt do any texts to rule anythink else out. .
Diagnosed age 54, though I suffered from Fibromyalgia symptoms for around 7/8 years prior.
I too was diagnosed age 54 in November 2013. My GP agreed when I asked him if this would account for what I was feeling. He said it was very common and referred me to Rheumatologist. Saw a junior doctor first who did trigger point test, which I had little if any reaction to. He said I didn't have Fibro but sent me for some more blood tests and an x-Ray. I saw Consultant about 3 months later, he said tests ok but increased Vit D. He said I did indeed have Fibro and that trigger point test typically not positive in men. He discharged me. My neurosurgeon reckons the Fibro is secondary to my spinal condition. My rehab consultant attributes my pain and fatigue to an amalgamation of health, age and effort it takes for me to mobilise. I'm currently awaiting referral to a Spinal Cord Injury centre where I hope I can finally get the correct expertise and hopefully some answers?
Have had it a lot longer, like a lot of us before I was diagnosed, kept saying it was my other back problem, but when other thing were going on with my body, I knew it was not all related to my existing back problem. Hope u all as well as we can be.
But suspect had it a lot earlier as had all symptoms and thought it was my RA pain?
Vitamin D is the most likely problem with most of you. Get your bit D checked now
I wish vitamin D deficiency was my problem, at least there is a tablet that actually improves that
Hi Sickalot thanks for this, it could be that some folk are misdiagnosed and do have a Vitamin D deficiency or a thyroid problem or other medical condition. I always think that as patients that we should keep going back to our doctors until we are satisfied that they diagnosis is correct and that they can do no more to help.
I was diagnosed 12 years ago with fibromyalgia but I believe I had it for many years before that.
It's difficult having this pain as nobody can see it, if you break your leg or arm there's a visible 'thing' but this pain is constant and very tiring. Some days are just awful and you get so tired of saying 'I'm fine'.
Even strong painkillers don't take it away. I've been taking Pre Gabalin (Lyrica) for quite a few months now and really it just takes the edge off. I try to walk for 20 minutes in the fresh air every day but that's becoming harder.
Never mind - onwards and upwards 😊
Got diagnosed last year but had constant headaches and neck pain since my 20's.changed drs several times,no one mentioned fibromyalgia.I've had to stop working,didn't want to,feel very down about it.
Why the question .
I think I was diagnosed 2 years ago at 46, maybe a little longer but since then I have been diagnosed with hyper mobility and bulging disc so not sure what's giving me most pain. Maybe it's sheer exhaustion that comes through all chronic pain conditions or the inability to think straight I feel these are worse by far than the pain. I don't know if my pain is caused through fibro but I am sick of people who don't suffer chronic pain who have no idea how much effort it takes to move some days dismissing my illness as if it's nothing just because I don't look ill doesn't mean I'm not.
I was officially diagnosed with fibromyalgia when I was 50 but I was suffering with all the symptoms for over twenty years. The gp kept putting it all down to other health problems that I have, eventually it was diagnosed by the rheumatologist. I hope you're all having as pain free a night as possible gentle hugs rosiexx 😊
I was diagnosed with Fibro three years ago making me 21; but I've had it since I was 18/19 xx
Same here.think it's catching.😁 lol.
i was officially diagnosed last year- but i'd say i've been having symptoms for at least five or six years previously on and off- they just gradually got so bad that i had to go to the doctor and explain what what going on (so they could re-assure my my MH wasn't playing up) i honestly thought all this pain was just my various mental health conditions, because i do know sometimes intense mental pain will come out physically. i honestly thought it was that. i got sent to a physio who sent me back to the doctor with the word follow up re:fibromyalgia. written on a piece of paper. i couldn't even pronounce the word. they'd already done god knows how many other tests and scans and they looked through them all- all my bloodwork was absolutely perfect. i kept getting pains as though i had gall stones in my back. got sent for a scan three times and they found nothing. so my dr suggested she send me to a rheumatologist. i was very nervous. i didn't even know what fibro was. my doctor advised me that i look online *sensible places- not google* to research a little bit and see if any of the symptoms matched mine before i went to the rheumatologist.
well there came my epiphany. i went to a respected medical website and looked up fibro. all the glowing pain dots on the diagram. exactly where i'd been getting pain for the past five years or so- the reason why my husband couldn't hug me because it hurt. the reason i'd been getting migraines day after day after day- and i still do if i don't wear sunglasses. the reason why i'm so sensitive to sound. sometimes when people are speaking at a normal volume. i'm like goodness. can you please be a little bit more quiet. there's no need to shout at me. all the pains and feeling tired and like the energiser bunny but with no batteries in it. it all fit.
i decided to monitor myself for a couple of weeks beforehand (before the rheumatologist)
i wrote down every single symptom i experienced during those two weeks and it turned out to be a page and a half. i went into the rheumatologist expecting to be told to basically go away and stop being a wimp. however it went much differently.
she sat me down and talked to me about what i experience. she said from what i'm explaining this is fibromyalgia. probably the easiest diagnosis she's ever had to make.
then came the torture- she had to check my sore points to make sure. i'll never forget that day coming out of the hospital limping and in pain like someone had stabbed me all over my body rather than just a light press. the thought in my head was really not there- i'd been diagnosed with something -FOR LIFE. to be honest almost a year down the road i am trying to still come to terms with it now. it's sinking in. but i don't think i'll ever honestly really accept it.
I was constantly going to my doctor from a very young age and was told it was growing pains I had the feeling I was being a nuisance until one day I saw a stand in doctor and after talking and asking various questions diagnosed Fibromyalgia all the different problems I was presenting then fell into place
I began to experience all the symptoms pretty much aged 24yrs. For 18yrs i was begging my gps from whichever surgery i happened to be a patient of at the time to refer me. They always refused saying it was just me and my depression. ..even when i was not depressed. I suffered horrendously during that time and can honestly say when i was finally diagnosed 2 years ago i was filled with total relief and tremendous unburdening of guilt and conscience followed. For finally it wasnt "just me" . I have fibromyalgia and i try my best for me and my children but sometimes my best isnt enough. But i am not just a failure, a quitter and i know that now. It makes a huge difference some days to know that and to hold onto it xx
I was diagnosed at 46 years old, the pain started in my neck, and then my legs..
I was diagnosed between 46yrs/55yrs although I am positive a lot of my symptoms I was having on/off for years beforehand have now been fibromyalgia but did'nt know it. Hope you are keeping well. hugs, Carol
I have read a lot of why people are waiting around diagnosis.
Post code lottery comes to mind.
I was told 35 years ago I had some sort of arthritis. Wind forward over 20years. Various house moves may have mudded the waters for GPs hospital consultants and physio. Light bulb moment an orthopaedic specialist on the spine used the word and within 6 weeks my local hospital now got involved. Treatment plans I have heard about are nearly as patchy as diagnosis.I would hope the next generation of medical school students or even the ones being trained now will be more aware of Fibro and open to the issues.
I was diagnosed when I was 37 years old but remember it like yesterday. Been to primary care doctor for 11 with pain, always being tired and just not myself.On month 12 she did 18 pressure point test and said " Remember this word ...Fibromyalgia also become familiar with the term CFS said nurse would be in touch gave med and sent home.I immediately went to book store and brought books on both and waited to hear from nurse. As told nurse called in a few weeks with a pot for pain clinic and the rest is history. Peck 🐤
I was diagnosed by a rheumatologist in my late 30's - now 58. I certainly didn't receive any great help or empathy from health care professionals in Ireland. My gp was horrible to say the least and didn't believe in fibromyalgia. The rheumatologist and pain consultant was lovely tho. I found my gp here in uk when I lived and worked here was really nice and caring. I was just lucky. I made the decision a few months back to come off nortriptyline and a few weeks ago gabapentin. Been on both for years and can't say they were helped keep me pain free. For my advanced arthritis in my spine and knees I take morphine patch and use lidocaine patches x3 everyday. I have tried all alternative methods without much success. Reflexology is the best but I'm biased as a reflexologist myself plus acupressure. Remain blessed and as well as possible xx
Hi All
I was diagnosed age at 43 but had the symptoms for 3 years before then, I had kept working during these last 8 year's which over this time I have had to gradually reduce the hour's I could work, finally had to give up work August last year as I was suffering with chronic pain all over, so tired I could hardly keep my eye's open , and my concentration had got to the point of making too many mistakes in my work, I was taking my holiday allowances to stay off work, spending the days off in my bed trying to recharge so I could go back to work, the flare ups got closer together in time and was needing more time off just 3 weeks later the recharge week off did not last long.
I am currently waiting to see if the NHS Pensions will let me retire early due to I'll health, I have had to send in a dispute which I am waiting to hear if I am successful, I have full support from my employer, OCH and GP etc, they have all said I am unable to work and have written reports and letters putting me into Tier 2 categorie.
Has anyone actually been successful with Tier 2 out there? Would be grateful for your comments and experience in this matter.
Thanks Bee x 🐝
My neurologist told me that I had fibromyalgia.too tired to do anything thing. Kept fallen down broke Right humerus bone plate 12 screws. I drop every thing I pick up can't drive and using a cane
Disability turned me down all the way to federal court my neurologist says I can not work I forget what I'm talking about and can't remember names I now where a Life alert button now fibro diabetic .2 fibromyalgia since 15 years ain't no fun I feel like I have cfs also but everything is neuropathy
really struggling with my fibromyalgia. I feel so down. Sick of being in pain and the fatigue is like trying to wade through treacle. I've reduced my hours at work to 30 but still struggling. Any advice welcome. xx
I have had a recent diagnosis. I also have R.A and Osteo and also recently diagnosed with Hypothyroidism. Thyroid UK has an interesting article about Fibro being linked to thyroid conditions.
I get fed up of aching all the time and constantly feeling tired, no matter how much sleep I get.
My back hurts, I get shooting pains down my arms which feels like I've knocked my funny bone. pins and needles, sciatica, restless legs, throbbing ear pains, hand pains, my feet feel like they're broken after I've been walking, my knuckles swell and on and on it goes.
when will it ever get better. My work friends say 'why don't you go onto disability' as if it's that easy.
I feel old before my time, but I'm lucky to have a supportive family.
Best thing I did was to get a decent Doctor who listened to what I had to say.
Hi I was 34 when Developed fibro. But wasnt diagnosed with it till I was 47 .
Diagnosed in my late teens, didn't really become disruptive till my mid 20s, with my pregnancies.
I think hormones play a part.
Thanks for the graph, it was interesting to see it displayed in that way.
Diagnosed at 51, but ill for many years. Generally told there was nothing with me so I must be depressed! Ok, I wasn't happy, who would be? But I knew I wasn't depressed so had to soldier in.
Interesting to read about bites. My dad was temporarily paralysed in his 20's when he was stationed in Iceland during WW2. He had problems over the years and then diagnosed with rheumatoid arthritis in his early 60's. We both watched a tv programme about RA which suggested insect bites as a cause. I do believe bites can cause all manner of problems long term.
Meant to say, he was temporarily paralysed after receiving a bite in Iceland. Don't know what by.
I received my Fibro diagnosis at the age of 38, after 5 children, a decade of symptoms & an unnecessary hysterectomy. ,
