About a year ago, I was given a fibromyalgia diagnosis by a rheumatologist. It felt a bit like a diagnosis of last resort. However, I didn't know much about it, so went away and tried to find out more. I already have several chronic pain conditions which also cause fatigue, so there is some symptomatic overlap. The rheumatologist who diagnosed me, said that he's never seen anybody manage fibromyalgia so well, which was an odd statement, to begin with.
Having spent a good year now following other people's reports of their symptoms and getting on with my own life, I'm just not sure the diagnosis is correct. I do have lots of the symptoms, but it just doesn't feel right, as a diagnosis. For example, Ehlers-Danos fits my symptoms just as well.
Has anybody else had this (in the UK, as health systems differ) - and if so, what did you do?
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Fedupandtiredout
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Hi Cat00, I do have lots of fibro symptoms, but because I already have spinal problems, osteoarthritis, endometriosis and I'm menopausal, most of my symptoms could as easily be explained by these diagnoses, which I've had for decades. There's massive overlap. I live with chronic pain, but I always have done. I get dizzy spells and my spinal issues are at the neck end, with nerve damage to the arms.
My fatigue is unusual. Possibly because I'm ADHD. I just can't pace myself: trying makes me miserable, so I don't bother any more. It's boom and bust for me, which doesn't seem to be like other fibro sufferers. I can push hard and get things done, then take a phase of wipeout. I live off grid and it's really physical.
I've now got gut problems too, which means my new GP (who doesn't have my notes yet) has gone straight for investigating bowel cancer. I get it, but don't think that's right either. Feels exactly like endometriosis bowel, but that's not as common, so we have to go through this first. Slowly!
I'd say boom and bust is actually quite typical for fibromyalgia, bc your pain levels often wax and wane we tend to go ballistic on good days and crash afterwards. Which is why pacing is one of the most talked about approaches for management of symptoms.However I am an extremely active person, more so than an average well person. I go to the gym everyday and do HIT and weights and then I do kung fu in the evenings. If I do regular intense exercise my fibro basically disappears. I've had a cold from Friday so haven't been to the gym for 4 days and I'm in lots of pain now.
Like you, and many of us, I have several other chronic pain conditions which complicate the picture.
I was diagnosed with ADHD last year at the age of 47. I read that, in the US particularly, if you develop fibromyalgia you should automatically be assessed for ADHD because the conditions are so linked. Especially for late diagnosed female ADHD.
My appalling sleep could be a product of fibro or ADHD but most likely ADHD. There have been various experiments where subjects are not allowed to sleep, within 4 days the subjects developed fibromyalgia-like symptoms. So there is a lot of pain associated with poor sleep anyway.
Gut problems are also likely with fibro but also likely with many chronic pain conditions, as one chronic pain conditions begets another.
At the end of the day, if we assume the current theory is correct and that fibromyalgia is product of an overwhelmed Central Nervous System then any trauma or painful condition can produce fibromyalgia-like symptoms. In my case probably undiagnosed ADHD which most likely caused me to develop chronic migraines from childhood, that and a genetic predisposition for migraines. In your case ADHD, Endometriosis and Osteoarthritis would more than qualify you for ending up with fibromyalgia, so we can at least say it is likely you could have it. Lots of people have EDS and fibro too.
I'm not sure the diagnosis necessarily brings anything to the party for the likes of us anyway, it's only really a concern if you think your fibro diagnosis gets in the way of perhaps another diagnosis/treatment you think you need?
That all sounds very similar to me. I agree: I don't think diagnosis labels help me much, when these conditions are self managed. I manage very well, most of the time, and don't worry about it when I'm not managing! I am fortunate that I got an ill health retirement and a pension a decade ago, so I have managed to make sure that any stress is self-inflicted!
But yes, I also use exercise to help with pain management. It's good to hear from other people with fibro who do the same.
Yes I think the forum probably has a disproportionate amount of more severe cases of fibromyalgia as the milder cases among us have less need for the forum perhaps?It's a very amorphous condition which varies a lot within an individual and between individuals, I suppose like most things in life.
At least being given a name means we can meet other people who experience the same issues and we don't have to list 10 different things that are wrong with us when we go to a doctor, so it's a kind of short hand at least?
That's impressive: I haven't stopped the painkillers. I keep my intake to what I consider a bare minimum, but get so much more done when I take them! I have a break every year, of several weeks to a month, just to check my dependency - but my output dwindles and I find that too frustrating.
To be be honest I have two things that count in my favour in that respect- one -opiods don't really work on me anyway and-two -I'm only allowed painkillers on 8 days a month bc of the chronic migraines so I've largely had to live without them from the beginning. Swings and roundabouts!
I’m not sure about my diagnosis either…it definitely fits but I suspect I’m adhd as well and I’m definitely perimenopausal…my research tells me that those together are a bit of a nightmare so I’m not fully convinced 🤷♀️
Quite a few women get diagnosed in menopause bc it exaggerates ADHD symptoms and what with the new "awareness" of female ADHD it enables detection. Being female is the gift that keeps on giving!
I was diagnosed with Fibro in 2021 after Rheumatologist consultant ruled everything else out.I joined a few online Facebook support groups to begin with but then muted them when I was reading about how bad everyone was or how they were unable to get on with their daily lives as I could. I have good and bad days with pain and fatigue but on a whole I manage. What I've come to realise is everyone's Fibromyalgia and journey is different and while reaching and connecting is great we need to be mindful that Fibromyalgia affects everyone differently.
Celebrate and enjoy the days, weeks or months when you are able to continue life as normal. My consultant was shocked I was a Personal Trainer and still working. There is a strong mind and body connection with Fibromyalgia and stress is a big fact.
If you feel you want a second option then go for it.
I found the book Dummies Guide to Fibromyalgia very helpful although you have to be mindfull as it was written in the US.
Thank you. I'll try and find that book. I am very active, which maybe means I don't recognise myself in other people's descriptions of how they manage. I understand that could cloud my perception.
I have been reading your post with interest. I was diagnosed in March 2020 just as we went into lock down and found it difficult to accept as I felt I'd been left in limbo until I found this site! I am also an active person so I swim and run and this is the way I cope with the pain. It hurts to do these things but it hurts even more if I don't and it really affects my mood. At times I have felt a bit of a fraud after reading the posts on here. I spoke to my doctor about fibro symptoms and those I didn't have (such as swollen joints) and she said that everyone's fibro symptons are different / different intensity. Therefore I'm grateful for the things I can enjoy now and understand how to cope with my symptoms. I have just had a fibro flare following an intense few months of stress, pain and anxiety so I am slowly building up my swimming and running again so I am feeling a lot better. ♥️
Hi, I live in Ireland and was diagnosed with Fibromyalgia and chronic fatigue in 2013 in my mid 40's. I have Thyroid disease since I was 16, bladder disease and Osteoarthritis / degenerative disc disease. In 2021 was diagnosed with psoriasis. Like you, I often doubt my fibromyalgia diagnosis, the rheumatologist who diagnosed me said I wasn't a "typical" fibromyalgia patient, whatever that means...I was then referred back to my GP. None of the typical medication for Fibromyalgia helped me, in fact I was worse on them.
I joined groups for Fibromyalgia support and sometimes felt I didn't belong as most of the time I manage as best I can with exercise and keeping moving, though I did have to retire early from my job. If I don't exercise I am a lot worse and have more pain and stiffness.
I always have to be doing something, I've been like that since I was a child. I was told I probably have undiagnosed ADHD and mild OCD.
I don't find labels helpful,that's just me, it helps others.
My symptoms are very similar to Psoriatic arthritis and when Fibromyalgia was diagnosed I hadn't yet had the psoriasis diagnosis.
I manage the psoriasis which mostly affects my feet with steroid creams when it flares.
What I feel now is that maybe it is Fibromyalgia along with or as a result of my other conditions.
I just continue as I am now, try to accept that everyone with Fibromyalgia isn't the same and each person manages in a way to suit them.
I still hate it if medics focus on it when they see it in my notes but thankful to have a good GP who addresses my issues separately.
I don't think the Fibromyalgia diagnosis will ever sit well with me but as long as I can manage whatever I have then I suppose that's all that matters really.
I do understand how you feel though because if I get a really bad flare, I tend to want a definite answer as to why it's happening🙄
I'm still learning to pace 😉
I hope it helps hearing you are not alone with how you feel about your diagnosis. Reading some of the replies to your post has helped me.
Thank you - it is helpful to hear from others like you, with similar experience. I think I have found the diagnosis unconvincing because, unlike my other diagnoses, where the medics can show me objective proof - scans of damage, this isn't like that. Feels a bit woolly, and then I don't respond in the usual ways, which compounds the issue. It is actually nice to know it's not just me!
That's exactly what I said to my daughter while we were chatting yesterday! I have proof of my other diagnosis but none for this and I don't think the rheumatologist who diagnosed me was fully convinced either. Definitely not just you 🙂
Hey, yes, I absolutely feel my fibro diagnosis is wrong (and a cop out 😤!). It almost feels like an end of the road diagnosis rather than the start of a journey to feeling better 😏🙄 x ps I'm also fed up and tired out (great profile name by the way!)
Interesting. That's sort of how it felt to me: I had waited 2 years for a rheumatology appointment, (long enough to forget I was waiting) and this label meant they could chuck me back out again, washing their hands of me. I'm not good at seeing medics anyway. Hate being messed around with, so every appointment I have is 1-2 years apart, mainly my fault. So I had this fibro diagnosis a year ago and then ran away. Saw no doctors again till now that there's something else wrong.
I absolutely get you! I had exactly the same experience and I also hate medical stuff or being mucked about with! GP surgery texted recently to say I needed my blood pressure checked (I'm on HRT inc testosterone, it's sadly not helped but I'm too scared to stop it just in case it makes me worse 😩!). I couldn't face going to dr's surgery so I went to our local Boots. Lovely lady, no stress. My blood pressure was low (as always) but my pulse rate through the roof as these things stress me out 😩 x
I'd been on HRT for a couple of years, but had to stop suddenly about 8 weeks ago because of pelvic pain (feels like endometriosis). I'm post-menopausal but I've been plunged back full pelt into those menopause symptoms. Horrible! And worst of all, they won't look at the endometriosis issue until they've excluded bowel cancer. I bet it's endo.
Urgh that's awful for you 😞. Endo treatment is a long wait on the NHS too 😞. On the plus side bowel testing kit easy peasy, quick and pain free. Who would be a woman hey 😩😩. Best of luck with it all 🤞 x
Thank you. They can't treat my endo - was too late by the time they went in to diagnose it. I just need them to keep an eye out for it turning cancerous, now I'm having a late return of it.
I was on combined patches, which I stopped myself, instantly, the moment the endometriosis symptoms came back. Couldn't see a GP for another month, but they agreed that it was the right thing to do. It is the return of the endometriosis that's bothering me, and the attached cancer risk for that. Unfortunately, they want to rule out bowel first, and by the time I've even had a scan it will be four months since this started, during which I have been in constant pain - and we won't even have started investigating the endometriosis. Frustrating. I'd rather be in your position by now and waiting for biopsy results. I suspect it'll be later in the year before I reach that point.
I understand your frustration, at the time scales of having to wait for anything to be achieved on the NHS.
I’ve had yrs between apps, even though there’s more to my story that I won’t fully put here, I recently got my surgery to print off a previous letter a Gyni sent my Dr in Oct 2022, stating they need to send me for investigations, as a matter of urgency.
My Dr didn’t inform me or action the Gyni’s requests from 18mths ago😤
I’m only at this point of finally being tested, because a different Gyni has finally seen me & instigated the tests needed. I’ve had to press for the appointment too! Gp even refused to do a blood test for my hormones. It feels the surgeries are run like franchises and the patient doesn’t seem to be the priority!
I was told the progesterone is likely to be the problem, but the coil wouldn’t cause what the progesterone tablets can & obviously has with me.
A Gyni in another part of the country I was under yrs ago was inept, she even apologised for letting me down🙈because she couldn’t get the right balance of hrt🤷🏼♀️
The salary she must be on!
Were you on a high dose of hrt and were there side affects with instantly coming off it?
The bowel test is straightforward if it’s the postal one. Have they sent you a testing kit via the post?
Mine was a very low dose, as HRT was relatively risky given the endometriosis. Yes, my side effects are horrendous! Stopped the hormones a couple of months ago, and I don't think I've had a good night's sleep since. Hot flushes every 20 minutes, but it's the brain fog that I find hardest to deal with. I can't speak! I've done the poo test, but then waited for weeks for a blood test, and the ultrasound isn't until the end of June! At which point, they might decide to refer me to Gynae, as this is all still GP.
Sorry to hear that your waits have been just as bad. I've had ones that went into years before, and know what that's like
Sorry you’re suffering in different ways now with coming off the HRT, it must all impact your fibro too. I hope you get answers soon and the help you need, but when apps are so far between it’s extremely frustrating.
Was your bowel test ok?
I was told ‘the lining’ without going into detail😉should be 2-4mm, mine is 10🤔
I had a missed call tonight, from the hosp that did the biopsies recently, voicemail said they have booked me in for an urgent app Tues.
I’m someone who remains calm until I know I have something to worry about usually, but odd they are calling me in for the results, when all is usually ok it’s a Letter you get, like the gp gets, as I already have phone app in July with main Gyni, to discuss all results of these tests she has instigated, so for the hosp to call me in next week isn’t sitting well with me tonight🤔
Will ring them tomorrow to see if I can get an answer over the phone.
I think all of symptoms overlap with B12 deficiency which I have been researching recently. I was told I had fibromyalgia 19 years ago, and I feel I coped fairly well with it. But recently it has been worse and I have found out I have B12 deficiency, which is a lot more complicated than it sounds and can cause an awful lot of problems, have a look at The Pernicious Anaemia community on this site, and they also have a dedicated website. Please do have a look, as I think a lot of people are told they have fibro, when in fact it’s B12 deficiency. I’m not saying everyone has, but the average B12 blood tests don’t reflect a true picture of one’s B12 state. It has been an eye opener for me!
Oh and also I saw a rheumatologist 19 years ago for a diagnosis and nothing since!
That's interesting. My mum had pernicious anaemia, before going on to develop non-hodgkin lymphoma, which killed her. I'm having bloods done next week for my gut problem. I'll check that they are testing for b12 in that.
Yes I do. I have many symptoms and many not attributed to fibro, in fact I was diagnosed fibro and symptoms of ununifying diagnosis. I also have not been seen with heightened problems and have dangerous ptosis also. I show more associated with mctd re skin and my main problems are not pain but muscle weakness. Negative bloods (apparently) led them to diagnose fibro when indeed ive had that diagnosis for 15 years or more but progression of symptoms and help by steroids and hydroxy and yes maybe I have fibro but not alone and none of the treatments for fibro have helped or halted this progression so 🤷♀️ I was told by one rheumy that you can have more than one diagnosis you know, so he seemed to note that yes fibro but something else at play too. Also everyone is different so its very hard , the problem I see is getting help with problems outside of what fits fibro .I had accepted the fibro diagnosis up until symptoms which are not and no answers as they seem to put all down to fibro once you have a diagnosis which leaves me frustrated and fearful, but more than diagnosis labels its the help with symptoms that arise that are needed also and when you cant self help as nothing self works. I falter at diagnosis this time round as so many symptoms and much inflammation (inc a red swollen chest and breathing difficulties) I was pushed on pressure points here there and everywhere, twice and they'd say does that hurt ,no, does that hurt no, all over until my chest so one point and I said yes and then was given a sheet on pacing and told fibro. This is a problem.
I sympathise with you. I can see how the fibro label might make medics less open to other possibilities. Although, having spent a year reading posts on here, it looks like any symptom could be fibro! In some ways I'm a bit lucky: the fibro diagnosis was the most recent of several diagnoses I've had for many years, so they are prepared to look beyond it for me.
When I had a fibro diagnosis by a rheumatologist he did check for unusual mobility in the past, when I was little. And he did talk about Elhers syndrome. I have been feeling better since I have stopped all milk products and started eating sauerkraut for instance and since I have retired. I also stopped caffeine and the burning on my hands and feet went almost overnight. The palms of my hands used to tingle, burn, change colour (almost blue) and the skin used to peel off. Since stopping caffeine, I haven't had it. I am not saying that fibro has gone but I don't get it as bad - only strange annoying things rather than really painful. Well worth trying a few experiments with food intolerance and gut health... For me: less stress, more sleep, and taking away certain food has improved things.
Glad to hear you have found things that help. For me, I don't think the fibro actually bothers me much, which is why I query the diagnosis: I'm already retired from work except freelance, so I get to organise my days in ways that suit me. This means I avoid stress, unless I've got a big performance! (But I enjoy that, too, and find it's good for my mental health). It's starting to look like my current gut problem will have a cause, that isn't related to fibro, either. I've been referred to the bowel surgeons to check out my adhesions - they were pretty bad 20 years ago, so could well be the problem now.
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Is anybody else a numpty?
Something else wrong. Fed up.
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