Fibromyalgia - be honest.

[Hellovation]

I think I’m going to be diagnosed with fibromyalgia.

I had never heard of it, until the neurologist and GP both mentioned it.

Having now mentioned this to a few people and their reaction leaving me confused, some internet searches lead me to believe it is widely believed to be a non diagnosis and simply something in one’s head or a ‘lazy diagnosis’ because doctors are at a loss.

I was heartened to think I might have a diagnosis and understanding and way forward to get better and live my life but now I feel so sad.

Be absolutely honest- what do you think of fibromyalgia?

Oh I do.

I dispute the diagnosis.
Doesn't mean I dispute the symptoms.

Oh, I know. It's awful. I have the occasional day where I feel absolutely fine, I get loads of stuff done, I just feel free and easy. Then bang, it's straight back to feeling like my limbs are made of lead and someone has turned the gravity up.

@OldCottageGreenhouse you keep coming back to continue your beef with people but you're ignoring my question about the World Health Organisation.

You're trying to improve understanding of your condition I assume, and information from the WHO would be very compelling. I couldn't find it, in fact what I did find contradicted what you wrote. You seemed very certain about their position - do you have any links?

Lie was not the correct word to use, I apologise for that. I meant your circumstances were off, not your diagnosis. Your use of ‘love’ indicates you’re UK based, and we don’t have student loan schemes for pilots. There are loans based around assets. I shan’t debate it. But if you have family money or personal equity at 18 to leverage that sort of loan or personal funding, then I really hope you can start to support people with fibro with meaningful action. Not just shouting on the internet and calling people trolls. And since I didn’t get the chance before, I’m also a fellow fibro sufferer. I just don’t go screaming on the internet when someone questions me or disagrees.

love to you all.

But who are you to dispute the diagnosis?

And if you are sympathetic, you haven’t shown it very well but asking us why we are up until midnight, disputing why GPs can diagnose (when they diagnosed through blood tests not just someone telling them their symptoms).

I think anyone with Fibromyalgia or ME understands that there is definitely more explanation to the condition than what is currently known. We want answers too - but these diagnosis are currently all we have. So what do you want us to do?

Bit more from me. Over the last 17 months have had 7 episodes where I could not stand up or walk. MRI brain scan showed something on my spinal cord that subsequently moved back into position on a 2nd MRI scan. Been referred to Neurology Dept now. So Fibromyalgia as I have, may be Neurological as well as Autoimmune related. Also got myeloma and when I lie down I get pains on the right hand side of my head. I used to be so well and lively when I was younger. Ill health and its unpredictability its tough.

As others have said, I believe fibromyalgia is given as a diagnosis when there isn’t an obvious cause for the symptoms. My frustration is with doctors who don’t seem to understand how to manage certain health issues. I do accept that the pain and suffering is very real (been there and done that myself).

My GP told me that my fibromyalgia was incurable when I was given the diagnosis many years ago.

I already knew that I had Hashimoto’s (autoimmune underactive thyroid), and many people with thyroid disease get told by doctors that they have fibromyalgia if they continue to have symptoms after supposedly being medicated correctly. Some people do well on the standard thyroid medication prescribed. Others, including me, do not. It was hard work to get it all sorted, but I did get it sorted (no thanks to my GP surgery).

Some people are diagnosed with fibromyalgia by doctors who ought to be diagnosing thyroid disease in the first place. Other autoimmune diseases seem to be poorly diagnosed too (I have several others).

I also had a vitamin D level on the floor, which the GP told me was a “normal” result. The symptoms of low vitamin D are truly debilitating, I thought I was dying. I also had low vitamin B12, which I was also told was “normal”. Our nutrient levels have to be optimal, not just above the bottom of the range, to feel well. My old GP didn’t actually understand that. It is important for patients to know what any test results are, because “normal” doesn’t mean everything is OK.

I had to take control of my own health to get better because all the GP wanted to do was give me a huge pile of medication to manage each and every symptom, to include anti-depressants and pain medication, and a referral to the Pain Clinic. I didn’t need any of that at all, I just needed the correct treatment for the real issues! I am now better, the GP thought it was a miracle 🙄

I've had periods of dark depression and the malaise that went with it, it’s horrendous but it lifted. As I have experienced both I can tell you it's completely different. Anyway you're
obviously of the opinion you know better.

definitely. I am still awake because I fell asleep after work, couldn’t keep my eyes open any longer
Didn't manage to eat any tea or wash my hair but I can’t sleep now as I’m in pain from my endo
Have always been a night owl, still the same just with added fatigue!

Not the same thing. I know someone with phantom pain in their leg. They had it amputated. I would say that was very real. Pain is neurological. Just because you can't find a physical cause doesn't mean it doesn't exist. I had restless legg syndrome during pregnancy, absolutely no cause but it was so painful. It was 'in my head' but very very real. If anyone has a diagnosis for fibromyalgia, I wouldn't judge them or doubt them. The opposite actually because its a long term and chronic condition that is incredibly misunderstood and must be hell to live with.

I know three people with fibromyalgia, as it seems quite common within my demographic (female, autistic, co-morbid autoimmune conditions).

One works full time in retail, one works three/four days a week in a high-energy role, and the other is now a full-time mum after previously working and being signed-off. I know how much each of them struggle, and the work they put in to maintaining their quality of life. Each of them have tried and continue to try a combination of different medications, exercise regimes, massage therapy, lifestyle changes and more in an attempt to manage their condition and minimise pain. Nobody knows what exactly causes it; there seem to be anecdotal links to connective tissue disorders, autoimmune conditions, neurological conditions and mental illness, but whether these are causative or coincidental is unknown. Whether it's neurological, psychosomatic or physical it wouldn't change my opinion on the reality of it. I think of it similarly to functional neurological disorder; the fact that it may in some cases be related to mental health issues doesn't invalidate the pain and physical symptoms patients experience.

I hope we can come to understand more about fibromyalgia in future. I have spent most of my own life battling chronic illness and I am especially lucky to have been able to access successful treatment after medical advances; I wish my friends and all those who suffer with fibromyalgia were able to do the same.

https://pmc.ncbi.nlm.nih.gov/articles/PMC11172859/

Yeah I'm naturally a night owl too. I have a primary diagnosis on top of fibromyalgia, which is worse in the morning (and afternoon, often). So I'm quite a crepuscular creature these days.

I know people look down on being awake later, but I have to listen to my body these days. I can't work anymore so one blessing is no longer being forced to wake up far earlier than is natural for me. I used to have to take zopiclone every night for most of my adult life so I could get up early - that can't have been good for me.

Well this is a very interesting one.

I was diagnosed 6 years ago and struggled to accept it, mostly due to the stigma around it and comments like these. I do not have poor mental health. I have chronic pain at times and there is not a day goes by I am not in some kind of pain. I have other autoimmune conditions and hyper mobility.

I am a very determined person. I run 3 times a week and do other gentle exercise. I have ran 3 half marathons and been so ill afterwards it is unreal. Like my body just breaks in every way you can imagine and ways you'd never believe. I won't be running that distance ever again like 😂

It frustrated me beyond belief because I want to just decide to do something and do it and I really do try so very hard then wham! It's very very annoying. And yes, I am also foolish and carry on despite the pain but I'm learning to listen to my body and accept.

But I will not give in and I will always try my best to do what I can. I pay for every bit of exercise I do but it does also help me. It can be very very hard to see that though sometimes when things hurt so much. It can be such random pains that go away as quickly as they arrive. It can be the most bizarre thing honestly like you are making things up.
I'm very to the point, I'm not a moaner and I am very determined. Yet I have also been in a heap sobbing and never let anyone know because I just bloody well won't!

I am lucky in that I work for my husbands business part time so can dip in and out. Not sure I'd be able to hold down a full time job working elsewhere I will be honest.

I've had zero support since diagnosis and have been told 'what do you expect, you have fibromyalgia' by professionals so....yes it can easily lead to people who have it having poor mental health because it really is very frustrating. I am super lucky to have some very supportive friends and a supporting loving family. Not everyone has this either. I also have an excellent sports massage therapist who helps look after me too and really she has been a game changer for me. Again I am lucky we can afford for me to do this and to have found someone so brilliant.
But I do not get through my days with ease. I just won't bloody let it win (apart from when I have to have a little sob in a heap in a corner, but as I said, nobody will ever know I'm doing this)

Yes there are people like to wallow in basically any illness and like to focus on it and yes may have had mental health issues their whole lives but this is certainly not me. But could I give up? Oh so very very easily. But I won't....not while I can keep pushing myself on. I have made determined efforts to lose weight and be kind to myself and look after myself with good food and exercise.

I suppose the way I see it is, I'm in agony if I do nothing. I'm in agony if I do stuff. Sometimes I'm in different agony and so random. I'm in agony sitting still or lying down, I'm in agony on the go. But sometimes the exhaustion wall hits and I have to really listen to my body despite me arguing with it, being pissed off with it, having a strop about it. No amount of sleep helps and actually I hate lying around because it really does make me feel worse. Sitting on a plane for example is super bloody painful. Lying still is harder than the running! But that's really bloody hard and I could so very easily give in.

Anyway, that's my take on my life with it. I am not naive enough to think everyone could do what I do. There a lots of reasons why they can or they can't. But I am also highly aware of the stigma surrounding it and that some people like to focus on it and tell anyone who will listen just why they can't do anything ever.

Well that seals it then😂

There's no point arguing about it. Some people won't believe it's real, so just stay away from those people and focus on those who are supportive. I do believe that, one day, medical science will catch up and we will understand a lot more about different conditions. There are fields with some very interesting emerging research and ideas.

I do think there is something very wrong with how we live and that contributes to the development of diseases. Some of us try to live as wholesomely as we can, doing our best to avoid things that can push us towards sickness, and it happens anyway. I've seen that happen to multiple people.

My potential fibromyalgia turned out to be an identifiable condition that no-one would dispute, but it was a journey of at least two decades and much dismissal to get there. Meanwhile I've learned to manage well. Plenty of people have it worse than me, plenty have it better.

Be careful about dismissing other people's symptoms though. I've often found that those who have the answer about how to avoid it in the first place, or how to manage or beat it, find out later on that it happens to them too. (I think most people eventually have something to deal with, so makes sense).

I am disabled with 5 autoimmune conditions my own mother has fibro. Think you need to calm down. You are attacking everyone. Not doing anyone any favours., especially anyone who has fibro. I was trying to say is MOST fibro patients are middle aged women & drs use it as a cop out so they don’t have to do anything. Maybe you should slow down a bit when reading a thread as I have never mentioned GP’s or neurological link, I actually think it is precursor to autoimmune disease.

Have you been tested for small fibre neuropathy? If you are in the UK they just won't test for it here (punch biopsy) due to costs. I do think there are some fibro sufferers that might actually have sfn which is a painful condition and this was confirmed by a neurophysiologist who thinks the same.

For anyone who thinks it’s imaginary I say the same as I said to a doctor. If I was going to imagine anything for myself it’d be that I’m a 5 ft 10 size6 supermodel with the IQ of Einstein and the income of Victoria Beckham. It wouldn’t be perpetual pain and insomnia. And yes I’m awake again at almost 3 a.m.
I believe it’s an auto immune condition, possibly triggered by the glandular fever virus and exacerbated by stress.

This! @OldCottageGreenhouse you’re embarrassing yourself now by repeatedly stating it can only be diagnosed by a Rheumatologist, but simultaneously repeatedly posting that it is a neurological condition to be diagnosed via brain scan and a statement from over over 10 years ago from a Google search.

I don't work in this field any more, but for 17 years I was responsible for assessing medical claims. As part of that, we used to get sent on training days to attend workshops and seminars with leading consultants.

Sometimes there would be a day themed around a certain illness that was particularly common. I've attended multiple training days for both CFS and fibromyalgia. Over the years I've assessed quite literally hundreds of claims for CFS and fibro. I always group them together because there are similar challenges, even though they're distinct and separate conditions.

Attending the seminars was fascinating, listening to the theories from the various viewpoints - rheumatological, neurological, and yes, psychiatric too.

What became clear was that with these diagnoses, the doctors really didn't have much of a clue, just a bunch of theories. The symptoms experienced by patients were very real, but the doctors didn't really know what was happening or why. I can remember that there seemed to be different and distinct strands of the conditions. And I still believe that although it's all lumped in together, there's probably different types of fibro with different causes. Same for CFS.

The other thing that was clear is that not treating people holistically is a real failing in this country. Consultants like to put patients in a certain box, and when they have a condition that straddles multiple specialities, they don't know what to do.

My DP has a condition that crosses between ENT and neurology (not fibro) and most of the time his care has fallen down a hole in the middle with neither dept keen on helping because it's not strictly and definitively "theirs". The GP ends up picking up the slack but they're not knowledgeable about the condition to be effective.

I think it's very much the same with fibro and CFS. WIthout a clear cause it just gets given as a diagnosis when nothing else fits and the symptoms seem to be right, and with no one really wanting to follow up on it holistically. Patients are left with a diagnosis and a shrug.

It would also be wrong of me not to acknowledge that, during my years of assessment, there was a disproportionate number of fibro claimants who had a history of anxiety, depression etc. Not exclusively so, but certainly higher than average. I think this co-morbidity is what has given it such a bad reputation, with too many people viewing it as made-up or exaggerated - because we all know what the general public thinks about individuals who have experienced difficulties with their mental health.....

The overlap doesn't mean it is definitely a psychiatric condition in those claimants - it could still have been due to autoimmune/inflammation etc. Might not be relevant. No one knows. The co-morbidity in some sufferers is just interesting to note.

In an ideal world there would be a multi-disciplinary approach to treating fibro, including psychological support as needed.

I think the other problem with fibro and CFS is that the symptoms can fluctuate with manageable days and bad days. The general public tends to view ANY condition like this with real suspicion. Anyone who is enjoying an activity on a manageable day will always be treated with disbelief on a bad day. It's like people wilfully refuse to believe that fluctuating conditions exist.

It's not really surprising that people with a chronic and unpredictable pain condition have a higher comorbidity with depression and anxiety. It would be more surprising if they didn't.

Agreed.

We used to see claimants with a history of anxiety/depression many years prior to developing fibro symptoms, but also those who had experienced varying degrees of anxiety/depression since developing fibro.

It's utterly exhausting living with unpredictable and constant pain, and I don't think the effect of that should be underestimated (but it is....).

@Time40 maybe you had something else then.