When were you diagnosed with Fibromya... - Fibromyalgia Acti...
When were you diagnosed with Fibromyalgia?
Hi
How are you feeling this morning?, I was diagnosed about September 2017, I feel far worse now than I did then but I have so many other conditions as well. Love and hugs Lynne xxxx
Yes, these conditions do get worse the older one gets. Though I did have 3 years confined to bed between 1986-1989 and for very long periods since then. I find any damp weather affects everything too, and even after having a shower, am shocked not being able to sleep, with burning hot, and painful bodily spasms. But then I have M.E. as well. My eyes now are also affected with 4 conditions. Feel so much for other sufferers. Take one day at a time.
Well Lynne just think with all those years gone we must be thatch closer to a cure
I was also diagnosed on my 30s but had it before then when I was in my 20s. I am now coasting up to my 84th b'day. Like many other fibros I have picked up other complaints along the way which may or may not be related
Stay with it if you are able. It's tough at times but I really believe that the more you can do the better off you will feel. I know that some can't cope with it and we are all different. It would be a dull old world if we were not. I have been lucky though for as well as the pain and often confusion associated with fibromyalgia I have had a life of interesting experiences including heart surgery, a stroke a new job and study yo become a teacher. An occupation Pi really enjoyed.
Now the monster has overcome me I am too old at 84 to fight any more as al the other problems I have accumulated have become just too.much.
So good luck to you I hope a cure is closer now
Regards Billypil.
I was 62 when diagnosed but now that I think back I had this monster for many years before that....where I just had episodes of weird pains and weaknesses. It was like my body was short circuiting for many years. Then the monster got me full time at about age 60-62 yrs. I just turned 72 a few days ago, so for about 10 yrs now I've suffered tremendously. I feel so bad for the persons who get this at much younger ages.
Got diagnosed when I was 26 but had it for at least 5 years before 😢 not looking forward to it getting worse
Was diagnosed last year but have been taking medication for fibromyalgia for several years.
I have had Fibromyalgia for 10 years maybe longer the pain I have now is a lot worse now as I get older. I also have a number of other health conditions and that doesn't help either.
I was diagnosed in 2011 and tried applying for pip on numerous time and got refused every time. I am now 45 and have more problems.
Keep trying and remember to recount your absolute worst case scenario.
Please try again with pip. If you read my post it may inspire you too. Good luck xx
Dont stop. Keep applying, but you have to be very descriptive on the application, explain everything in great detail about how it effects everyday living from getting up to bed .. and beyond. I fought mine, through mandatory reconsideration and appeal .... took a long tine, caused stress which didnt help but in the end i won.
You need to remember, they will do as much as possible to turn down your claim, so always know rejection is probably guaranteed at first, so you have to do as much as possible to fight. Fibro IS a disability so you are entitled. FIGHT BACK. If its too hard for you, try a 3rd party like CAB or DIAL.
Good luck!!
Michelle
I was diagnosed at 50, but it ‘had me’ from about high school. The past twenty years, I also discovered several food intollerances which makes healty eating extremely difficult. Even e.g medicines with lactose, etc is a problem. No more restaurants - unfortunately.
Kind regards and thank you so much for listening to all of us.
I am interested in your food intolerances comments. I am wondering how many others find their flare ups are related to food?. This is the road I have been on for the past 10 -20 years...... having only just been given the link with my aches being fibromyalgia. But my aches and pains seem worse for the 12 -24 hours after eating a fatty meal. Is this a common factor for fibromyalgia sufferers?
I started 20 years ago with dairy and eggs, thereafter sugars (also fruit, saccharin, soya, potassium and nuts). I could never tolerate oily foods. All the above trigger migraines and then the pain spreads to my whole body. The result is a week of I feeling like birds of pray are picking my flesh which is excuciating. It takes about two weeks to feel ‘normal’ again.
Try keeping a diary when this happens. Just be your own detective.
Everything of the best. 🌺
Thanks Nita
I started cutting out dairy too but haven't had such severe symptoms. I'm sorry to hear that you get those reactions, I hope you find something that helps. Have you tried a hot tub?, it seems to help me.
Thanks for your suggestions I'll keep notes and explore.
Wishing you well, take care
Bessie
I didn't have any food intolerances before I was diagnosed; in fact I had a cast iron stomach! Nowadays I have to limit bread, oats make me nauseous,
Pies, cakes and biscuits give me indigestion, even pasta I can only tolerate in small amounts. Anything in the Pepper family give me problems too, but I can manage the dried spices, just not the fresh ones. Eggs can be a problem too, if I have more than a couple of them a week. Coffee is lethal; within half an hour I need to rush to the loo!
Hi
I dont know if you have heard of the low FODMAP diet. It can be found online or ask your dr to refer you to a dietician. Its quite hard to initially get into, it takes some adjustment, but does seem to help alot of sufferers. I had to pay for private testing in the end but glad i did as a big issue for me was yeast, and i would never have worked that out alone. I used York Laboratories which drs do take notice of .... some cheaper tests will be ignored by drs.
Give the LOW FODMAP a try, it might help.
Michelle
Thanks Michelle, that's really interesting. I'll take a look. It's great this forum, always someone there. Thanks Bessie
Awaiting diagnosis after bariatric surgery to eliminate weight bearing pains. Scatica and tipped S1 diagnosed but dihydrocodeine not as effective as Tramadol but have reached tolerance to tramadol now.
I'm in my late 40s but previously I never felt much pain. Gas and air only for 2nd baby delivery. After delivery no pain either. Codeine was taken home and not used til back/pelvis problem arose.
Cold shoulder is undiagnosed but only be given painkillers so not told GP yet.
Alot of neck and shoulder pain lately. Again not go to tell GP til after op if it's still there with weight loss.
We'll see.
I was finally diagnosed in 2003 but had shown severe symptoms for a lot longer.
Diagnosed in 2008 but sent away from the rheumatologist with a leaflet...... end of!! Refused to accept that I had it and pushed myself too much and ended up worse off!! XX
I was diagnosed 2 years ago by my GP I was sent home to google fibromyalgia given medication I knew nothing about basically told to get on with 😡
Absolutely dreadful! I hope you’ve found more support since! That’s truly awful.
exactly my story. 5pm on a friday - consultant wrote fibromyalgia on a scrap of paper and said "go research it, we don't treat it here, I'm discharging you back to your GP" Sat in the hospital car park and cried - hadn't a clue what fibro was 
So sorry I was under a rheumatologist he gave me the medication but didn’t explain what it was for it was a physio therapist that mentioned talk to my GP about fibromyalgia I book the appointment mentioned fibromyalgia she screamed at me told me to google fibromyalgia come back in a week when back she was ina crabby mood said yes you have fibromyalgia she must have had to get in touch with the rheumatologist I was still under bad communication skills so I have been on lots of surpport groups looking for answers on who to cope it’s all we learn todo. Hel52
These professionals should be reported surely for not being helpful to patients? Surely it's their job to tell you, explain it or give you information? utterly awful, so sorry to hear of you all having problems. Bit like years ago when I was in my early 20s and went to gynecologist for women's problems. She was ok until I mentioned I wanted it sorted to have another baby in the future. Latching onto the word 'baby' she then patronised me and I came out of there with multiple birth pills!! Wish I'd had the courage to report her then. Utter farcical and I've never trusted them since. Gone down the homeopathic route under NHS for allergy injections and now they've stopped them so trying to control things by diet alone. Fibro pain went away for a few weeks when altered diet to less acidic but then got thrush, so you win some, you lose some! Need to re-evaluate diet again. But it can help if you get it right and I did see a naturopath, just can't afford to go back lol. Best wishes.
I was told in my 20’s I had RA, had problems and numerous hospital appointments over 30 years for so many conditions, which now all point to it being Fibromyalgia all along! Only the fact I was seen by a newly trained doctor at my surgery that actually believes Fibromyalgia exists that I was referred and seen by a rheumatologist who diagnosed Fibromyalgia last year! At least I now know why I’ve struggled for 30+ years but it does make me sad that I didn’t get the correct treatment and was made to feel like a hypochondriac.
Me too TeeDee63! It makes you look back to try & pinpoint what kicked it off. I’m just wondering if it was (in my case) a long painful Labour with my first child. x
I’m just sad that for over 30 years, like many of us, I struggled and was shrugged off by medical staff. It was a cancer diagnosis in my early 50s that changed things in regards to Fibromyalgia, as after the surgery and recovery from that ( masectomy and reconstruction) they took notice of my symptoms. I was sent for MRI and x rays and so many other tests, and I thank the lord for having a consultation with a newly qualified doctor who recognised the Fibro symptoms and referred me to the appropriate consultant where I received the diagnosis.
I hope things are easier for you now, I can’t say they are for me as I’ve had to give up work completely, but at least I know it’s not all in my head now, as everyone believed it was.
I hope it gets the medical recognition it deserves as it blights the lives of so many of us.
Best wishes T x
I was diagnosed by an osteopath! At my next rheumatology appointment I mentioned it to the Rheumatology Nurse who tested my pressure points & called the Consultant in. He did a further quick examination & confirmed the diagnosis! That was about 2012 but I’d had this all body pain since the 1970’s. x
I was diagnosed in 2017 but I had it before then.Put it down to my diabetes though.
Hello everyone
Hope you are all as well as can be.
My other conditions don't help ie non alcoholic steatohepititis caused by meds from GP, diverticulitis, IBS, depression, under active thyroid to name but a few!!! Love and hugs Lynne xxxx
I ws diagnosed this year after severe symptoms for 2 years but looking back my friend always used to make a joke of me falling asleep when we used to go out for a drink for many years now - so much so she used to take a picture of me curled up somewhere in her house, outside on a bench - pretty much anywhere really! So I think it's been coming slowly for maybe ?9 years. Around that time had a traumatic flood and lost everthing downstairs so might be linked to that?
I was diagnosed in June this year I have no pain at the moment but feel very comfortable fused and my eyes bother me I also have tingling in my hands But other than that I just feel so tired all the time
I was diagnosed March this year the rheumatologist said it was mild I have not been back to my GP as I manage quite well which makes me think it’s not fybro but nerve damage from very low b12. My main symptoms at the moment are constant headaches and lack of energy I do have pain but not very often so confused .
I was diagnosed last week, although I recon I have had it for the past 7 years and just gradually getting worse. Still coming to terms with it and trying to get my head round treatments to help. Trying to stay positive and keep smiling to the outside world as that's the way I have always been.
Hi Purranza, I am looking into taking CBD oil... not getting on with gabapentin at all... any advice on what to start on and which works best please (oil, capsules, vape or cream) 
x
I was diagnosed in my late 40s in2003 by a consultant rheumatologist.I realise I had flare ups since I got married in 1975 when I was really Ill for months with a virus.I am now virtually unable to walk or shower myself.I have just started on pain patches inscription to tramado.paddy60
I had lots of tests for MS from my 30’s
I first visited GP in 1987 and it took until a couple of years ago to get a diagnosis Definitely got worse over that time but then again I'm alot older!
I was diagnosed in 1992. I had CFS since my late teens then the FM symptoms started in my late 20s. I had to medically retire in 1994 without any benefits. So many doctors dismissed FM back then it wasn’t considered a disability. If only they knew how wrong they were then
Thank you Mdaisy. Love and abundant blessings dear.
EvaJo 😊🌸🌿🦋🤗💗😘
My doc just phoned me to see how I got on with the gabapentin and when I mentioned CBD he said I will get you booked on the course for chronic pain management.. he didn't have a clue what I was on about lol! Thanks for the advice, its the pain in my shoulders, arms and hands at night that keep me awake and doesn't ease until the following evening, where I only get an hour before bedtime and the whole process starts again. the brain fog is bad through the day and I think the "dizzy blonde" jokes are wearing thin at work lol. I will go check out cbdbrothers, many thanks
Diagnosed in my 30s, but had illness symptoms starting already in my 20s.
Sorry - Fibro fog day - I thought I was being asked my age and voted 60's, I was actually diagnosed in my 40's
Oops yes I thought as Fibro is supposedly diagnosed & common in the 30's I thought a poll might be interesting
just phoned them and they are sending out a couple of samples. They were VERY helpful thank you Purranza
They are lovely people who try to be very helpful - let me know how you get on
I will do
Hi
My rheumatologist diagnosed me but referred back to GP cos she didn't deal with fibromyalgia!!! Luckily I have a friend who's got so she helped me. One bit of advice was to listen to your body which I have pushed sometimes and been in absolute agony. I can't stand, sit or walk for more than 10 minutes without being in pain. Love and hugs Lynne xxxx
Good advice to listen to your body as pushing can cause it to worsen unfortunately
I've had psoriasis since I was 12yo. Early menopause at 39, then at 44 thought to have ra, only recently diagnosed in July after I had blood tests and xrays which showed early arthritis in hands and feet and that I have fibromyalgia.
I was diagnosed in Feb 2016 but feel that I have had it for maybe ten years before then maybe more. I was a nurse and kept going to the doctor with various symptoms but it was only when I could not cope with work anymore that I was referred to a fantastic Rheumatologist who took the time to rule everything else out first ,then diagnosed me. To be fair he said that he thought it was probably fibromyalgia on our first meeting, but he had the time to go through absolutely everything with me ,which of course GPs don’t have, so they only treated the specific symptoms as they arose. I must admit once I had a diagnosis,it was only then I realised that I wasn’t going mad,experiencing all those weird and wonderful symptoms was actually part of it and totally explainable. It was a real weight lifted off my shoulders and also very emotional.
I was a staff nurse too and a few colleagues didn't believe me - this was truly upsetting as when I went on light duties before having to leave I felt criticised. I wish these chronic illnesses that are invisible were more widely understood. Wishing you all the best
I was suffering for years then a doctor said he thinks it is fibromyalgia but it was still a further 2.5 years before the hospital confirmed it but now have other issues also with hospital stay for spetic athritus in my lower spine narrowing of the vertebra in my neck crushing my nerves and they say arthritis in the centre of my spine so always in terrible pain of it ain’t one thing it’s the other and they wonder why I am depressed and stressed out still waiting to be move to more suitable accommodation as at the moment I struggle with the status very narrow and very steep been hospital caused if falls on many occasions I hate this was very active person no weight issues no pains no sleep issues now can’t sleep always in pain have to rely on others to help me do say to day tasks feels like I have nothing to look forward to I work 2 days a week now where I used to work all 7 days at 2 different jobs I have to use a frame to walk and am in so much pain at work am often in the toilets having a cry but if I don’t work I will be house bound altogether I wish the pills they gave me helped but they don’t and they just keep putting the dosage up that now they cannot be put any higher and as other sayas I get older less active it gets worse
Same I was confident, independent, slim, fit and had a career all of which were taken away - it's a sad illness with little recognition and much needed research. Have you tried any supplements or vitamins to address any digestive issues? I have definitely felt improvement in symptoms by doing this and looking at candida/leaky gut but they are still there but a little better
What about kids & teens ? My 19 yr old has just had a diagnosis but claims she's had symptons for years
I was only diagnosed last year but all my life I have lived with body pain and being a 'sleepy head'. Also my symptoms got worse, in particular with severe leg pain, after a bereavement five years ago when my partner passed away.
It wasn’t until well into my 50’s. I had started feeling the effects ever since my early 20’s when I merely got odd periods of extreme fatigue (no pain), became significantly disabled in my early 30’s, when I started to need a wheelchair for mobility, as well as other bits and pieces like stairlift, bathlift etc.
Is the CBD Oil easy to get hold of as I thought it was illegal.
Hi ty for info that is interesting
Actually diagnosed at 58, but have had it since my early 30's. Got immediately worse after a bout of Shingles.
Lots of people mention the benefits of CBD Oil on here, glad it's working for you
I was diagnosed in my 40s after twenty odd years of chronic ongoing back pain which gradually worsened .
I started having pain when I was 18 and was told it was growing pains. However looking bk all the symptoms i had then were all symptoms of fibro. Numerous hospital operations and other hospital medical procedures done on different parts of my body carried out. An been seen at god knows how many hospitals for me to try and get an answer to what is wrong with nne .Too now fast forward to me being 43 and finally getting a diagnoses at the end of 2016. It sounds weird but I was so happy to finally have a name to my illness.
I think it's only natural to feel relieved that you diagnosed as so many make us feel like we are hypochondriacs !
Yeah I felt like that too. I could see the Drs looking at me and thinking just that. Until u have suffered from chronic pain for many years , Just because you can't see my illness doesn't mean I'm fine. My husband always says he can look at me and know I'm having a flare up just by looking at my face. Xx
Hi Mdaisy, my doctor told me I had a trapped nerve in my shoulder, he said I would be back to work in a week, I used to work on the school meals, I was 40 I've never worked since and i have just turned 57 in July x
Mine was originally diagnosed as Frozen Shoulder, I wish that had been the case
Hi. I’m in my early 40’s and just diagnosed with fibromyalgia, Sjogren’s and arthritis. I had to fight for referral after linking symptoms myself, writing it all down for GP only for her to shout and say she’d “write the word down in my file if it would make me feel better” then told me “most doctors don’t believe in it either”. She was actually really cross and could not have been more obtuse. This followed nearly 5 years of seeing her regularly with all the mad symptoms - she kept treating me for depression and anxiety (lots of drugs, none worked, one put me in hospital). I truly believed I was a hypochondriac and it was in my head until the consultant agreed. I cried so much for weeks from pure relief I think! I know it’s not curable but just t know the pain etc is real, I’m not mad or losing my mind. I think I’ve had this for nearly 20 years, seen many GPs... in my 20s for over 6 years one GP would constantly be condescending and send me away before I called hospital direct begging to be seen (he wouldn’t refer me) only to be diagnosed with an autoimmune disease he should have spotted. Consultant was furious. I strongly believe GPs need re-educated on these matters, I feel very let down. It’s hard not to be bitter, but I’m now trying to focus on ways to help myself further with diet, lifestyle and mindfulness. Ive cut my hours (financially tough ☹️) and a few people in my life if I’m honest (you know the ones). To be kinder to myself and accepting that this is my life now, permission to stop fighting it and making it worse (doesn’t work everyday of course 😏). I think a proper diagnosis gave me the courage and strength to do this. It’s so important that that this become a quicker and easier process for all sufferers. I’ve found this forum so helpful with tips and advice on how to do this. Thank you x
Like so many others I just had a loads of symptoms but no one put the jigsaw together for decades.
Sigh,me too:-& Diagnosed with osteoarthritis in 2010...so figured all pain related to that. I have been a carer for my husband for 25 years,so plenty wear and tear on bones and muscles.In late 2014 he was diagnosed with terminal cancer. In early 2015 my stepson was killed. Almost immediately my body started going 😠. Pain everywhere, especially back, parasthesia,dizziness,falling,brain fog, IBS,insomnia,exhaustion,speech problems,fine motor skill problems,and weird migraines..(never had them before).Collated all these symptoms,went to Doctor (man) who immediately stated they I could only have one thing wrong with me at a time! I was shocked and mortified,especially as I had rarely visited a doctor on my own account. Here was I thinking that a doctor would need all the info.to inform a diagnosis.Ahem. I asked to see a different GP.(🚺) Referred to rheumatologist, and neurologists, underwent loads of tests and a year later was given the fibromyalgia verdict. Meanwhile, I was needing my husband's carers to help me dress. My beloved died,and I collapsed in utter exhaustion. Been pretty much bedbound for the past 18 months. Pregabalin has helped a lot (once over 200mg a day), now on 500mg. Re: the dietary comments..according to ENT specialist -migraines are often triggered by the following: Chinese food (msg), chocolate, cheese, coffee, red 🍷,prawns, so it is worth testing by elimination. I also find that bread makes me bloated. Fatty food makes me nauseous (as does coffee ).Vestibular migraines do not necessarily give you the diabolical head pain,but usually dizziness,nausea and sensory hypersensitivity...to light, smells, sounds as well as touch.
I have been advised to exercise...but as I have almost no energy reserves it is difficult. Every time I go out, I am sick in bed for a week. Just talking can cause a flare up. It is very hard to pace oneself...but you can't push so you have to accept that you can't do too much.For me its one thing a day..a shower followed by bed all day, OR get dressed and sit outside.Sometimes you push the boat out...accept the payback.A bit of shopping might put up in bed for a week, but hey ho 
As regards PIP applications...you really must explain in extremely personal detail just how much pain and the degree of difficulty it is to function..on your worst day (as has been said by others).
Good luck, keep trying and never give up...and cry when it all gets too much!
Peace,love and happy thoughts to all fibro family. 😴🦋🌈💞
Hi Mdaisy ,just had someone called sue sue 12 message me saying she has a wk to live and for me to send her my email address so I can have her funds she's on bout orphanages and loads over other stuff she said her husband has left her millions of dollars and she wants Mt email to give me the funds to put in my bank this is obviously a scam could you please warn others X xc
I'm surprised to see how few people are diagnosed with fibro..etc at 70+. like me.
Hello
I'm having a not so bad day but tired I have recently bought a weighted blanket as I'm very restless at night found myself sliding out of bed I've got a grab handle as I'm paralyzed down the left side grab handle has saved me from fling out because if I;m on the floor its difficult to stand up I live alone but I do have pull cords & a pendant. I think the weighted blanket is helping me just taken some CBD oil & then wrap up warm to take my dog for a walk its really windy I've had fribromyalgia for 1 year plus I've had some remissions the first one was after leaving hospital as a Sepsis Survivor I had 30 days of remission I'm wondering if there was a particular chemical in the anti biotic which was by drip but had 2 tablets to take home I was rushed into Triage the paramedic looking after me told the driver think we need the lights on this one think thats code to warn hospital & by-pass Casualty it was touch & go they wanted to know my next of kin which had changed as my husband & I living separately both of my daughters on holiday I was put on a halo of oxygen my blood pressure was ver low I was told I needed the mask the Chaplin came to see me after 30 days of remission being back to normal cane hard I've sepsis side effects which are similar to Fibro I then booked myself into a 4 star Country Hotel had 3 days re-mission my Dad came to see me he was pleased you look better than I've seen you for ages happy smiling & confident. I think being lonely is linked to my Fibro in the Hotel really friendly staff plus it was near to my family & friends so I also had visits cam back home back to Fibro I've been looking at stem cells . I don't have any friends since my husband left. I would be interest to know if others get re-mission
