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AMA

I have Fibromyalgia AMA

223 replies

brightonbeautifull · 10/03/2019 21:06

Ask me anything!

OP posts:
MegaBat · 11/03/2019 23:11

*you, that does not make me a troll. It makes me someone who thinks some of you talk nonsense

Weetabixandshreddies · 11/03/2019 23:12

MegaBat

I see the lead rheumatologist at a London hospital (I have inflammatory arthritis, not fibro, before you accuse me of having skin in the game). This Professor diagnoses fibromyalgia in patients. I am quite sure he wouldn't diagnose patients with an illness that isn't real.

If you don't mind, I'll take his opinion over yours!

Bouchie · 11/03/2019 23:13

I can answer that for you Fuck It. I've had FM for over 30 years but only diagnosed for 10. The diagnosis did little to change people's sympathy. In all honesty it's very hard for people to remain sympathetic to an often hidden illness. I can be fine half the day then struggle to type or walk up the stairs later on. When I go away with friends they see the other side of me having to crawl to bed (literally) they are then sympathetic but I have a ridiculsouly high pain threshold. Prediagnosis I thought I was a wuss as often in pain over nothing but having had three kids naturally, 2 with no pain relief at all I realised it is pretty high!

UncertainPerson · 11/03/2019 23:14

FFS the MN advert on this page for me is “free energy healing” Hmm even the cookies don’t believe us Confused

MyDcAreMarvel · 11/03/2019 23:17

Oh yeah me too energy healing one to try after graded exercise Grin

Bouchie · 11/03/2019 23:18

energy healing Grin

Wolfiefan · 11/03/2019 23:25

Mega there are indeed some of us on this thread talking mega nonsense.
We don’t share memes or talk in spoons. We don’t claim benefits.
We don’t post on FB to create drama and sympathy.
We just try and get the fuck on with our lives. Even when every single part of us hurts like you wouldn’t believe. Hmm

TinselAndKnickers · 11/03/2019 23:26

Amen Wolfie.

MidwifeyForLifey · 11/03/2019 23:33

I've come onto the thread for a read and I'm saddened, shocked and angry - All in equal measure.

So some people are banging on, on Facebook with constant 'memes'? So what. How about the thousands (if not more), other people who don't even share with anyone that they have it, due to the stigma? Due to the disbelief?

And, perhaps some people do over share due to it being such a touchy subject. Perhaps people just want to raise awareness.

I've had fibro for over 10 years now, it's ruined a lot of things for me. Close family know I have it but that's it. I don't share anything because I'm aware there are people similar to those unsavoury types on this thread.

I don't suffer from depression and I'm probably one of the most genuinely happy and contented people you'll ever meet. It isn't depression manifesting into physical pain for me.

For what it's worth, I have a woman who is a very clear attention seeker on my FB. She is very much a bit OTT and posts endlessly about fibro and a few other conditions. She is a bit of an eye roll. I also know lots of people suffering in silence though.

ineedaholidaynow · 11/03/2019 23:37

What I don't understand is that Megabat is whinging about all these people posturing on FB about their 'imaginary' illness, but surely they are her friends if she can see them on her FB. Obviously doesn't think much of her friends

TheFairyCaravan · 11/03/2019 23:46

I was diagnosed with Fibromyalgia by a rheumatologist many years ago however I'm not even sure I do have it any more. I certainly am disabled, in severe chronic pain and have a lot of symptoms but these have a cause and that was the severe SPD I had in pregnancy. The lady who does my acupuncture thinks I might, also, have an autoimmune condition on top of that, I suffer with migraines and IBS. My children are incredibly hypermobile, as am I, so I'm wondering if I've got EDS instead of Fibromyalgia.

I hate the spoon theory with a passion and I refuse to join forums and facebook groups because they are full of people who compete wit( each other of who has it worse. They don't have tne energy to have a bath, clean their teeth or get out of their pyjamas but something fun comes along and they're there, Apparently good days never happen and they point blank refuse to believe that even the gentlest of exercise can help.

I've no doubt that Fibromyalgia is real but I also don't doubt that it's over diagnosed.

BitOfFun · 12/03/2019 00:05

I think it's absolutely fair enough to have deep reservations about an illness that has no obvious physical cause or tests to determine its presence: it is a diagnosis made by excluding known conditions, from what I understand. I find the idea of poking people in arbitrary "tender spots" and asking if it hurts almost on a par with reading bumps on your head from a scientific basis.

The social aspect of the most visible "type" of sufferer being female, depressive, and struggling to cope with the basic vicissitudes of life is also very obviously problematic.

I don't think it's fair to characterise a normal human response of irritation to this as "rude": forthright, yes, exasperated, perhaps.

Clearly there are people genuinely in pain and distress who have been diagnosed with this rather umbrella term, but I believe they would be better served by more research and proper investigations, or they will continue to be effectively written off by the medical profession after being given the rather nebulous label of Fibromyalgia, and they will struggle to be understood while they are grouped in with the vocal Facebook types who appear to have the "spoons" when it suits them.

MsLucyLastic · 12/03/2019 00:25

@Megabat - I suppose it would take some intelligence for you to work out that the vast majority of us with fibro DON'T post memes on Facebook. I presume you have heard of algorithms and the echo-chamber effect? Someone lower down your feed may be whining about something different but your algorithm may not show you that.

I honestly thought you would have the wit to also understand confirmation bias.

As you talk about your "friends" on Facebook posting so much, perhaps you should unfollow them? It's not hard and someone can probably give you instructions if you struggle.

Or maybe just try to walk a mile in someone else's shoes. Karma has a habit of being a real bitch!

MsLucyLastic · 12/03/2019 00:34

@PuddingsAreMyJam noone has died from fibro, but the cocktail of drugs some of us have to take will knock years off our lives. Plus, we can still get other regular chronic and acute illnesses too.

I am sorry about your daughter, but noone has the monopoly on suffering. My exH has MS, so yeah, we know about potentially fatal chronic illnesses too. Ironically, he is more well than me on a daily basis.

MsLucyLastic · 12/03/2019 00:47

@Bitoffun. "I think it's absolutely fair enough to have deep reservations about an illness that has no obvious physical cause or tests to determine its presence"

So you don't believe in schizophrenia, psychosis, eating disorders or any other mental illness? Or in ME, which is also diagnosed by exclusion? Wow. I hope your medical colleagues don't know that, you could get struck off...

..you are a medic I presume, with your knowledge of which clearly diagnosible illnesses it is ok to have "deep reservations" about?

If you aren't medically trained, then let's hope that one day you won't experience a painful illness that some don't believe you have. If you have to wait years to be diagnosed too, that would be most unfortunate. I am obviously most sincere in this!

BitOfFun · 12/03/2019 00:52

Mental illnesses are obviously diagnosed by different methods. Are you saying that you believe Fibromyalgia is a mental illness?

MsLucyLastic · 12/03/2019 00:54

PS Bit of fun, more research isn't an either or thing, you know? Oh, and the research shows that actually, it is the most mentally strong people, who are the ones others turn to for support to cope, who tend to get chronic pain conditions......who may then develop depression as a result. That certainly is the case in those who I have treated with the condition.

mooncuplanding · 12/03/2019 01:18

I believe the disgnoses

I believe it is real

I also believe it is diet related. All the symptoms point to excessive inflammation in the body (including the depression)

Science is starting to show this

If I had fibromyalgia I’d try an elimination diet immediately, with a view to keep insulin as low as possible in the long term

BitOfFun · 12/03/2019 02:06

It's interesting that you say that about carers/copers, MsLucyLastic, as I've often wondered if sociologically the prevalence of female sufferers is somehow connected to an unconscious rejection of that role: that one psychological way of way of protesting those societal expectations is to adopt the "sick role", so the person can't be condemned as somehow "unfeminine".

Anothertempusername · 12/03/2019 05:51

Have been lurking as my mum also has been diagnosed with fibro, for about 5 years now. I am very cynical about how unwell she actually is, as she also has a huge history of health anxiety and copycat illnesses (anyone in the family gets seriously ill, mum goes straight to A&E with the "same" symptoms). This has led to over 20 "cancer scares" among other things, in the last 5 years alone; but never a diagnosis.

I genuinely believe my mum is in pain and unwell but the fibromyalgia is a cover all phrase for a mental illness that makes her feel this way, and the amount of drugs she takes (usually around 16 tablets per day, including anti depressants) is hugely worrying, this to me is the root of why she feels worse every day. The amount of doctor and nurse time she uses up, it doesn't surprise me that she is sent home with whatever medicine she demands that day.

My mum also has a terrible diet, takes absolutely no exercise, won't leave the house unless it's for a trip to the doctors or hospital and spends most of her days meme sharing and researching new ways she may be in pain. Doesn't spend her time researching anything that will help, and is very dismissive of any suggestion of how she could help herself.

It's absolutely heartbreaking to see her spiralling into old age when she's only in her early 50's, and knowing that she won't help herself.

So please do forgive us for being cynical of this illness. Some of us have to watch loved ones making terrible health decisions and basically losing the person they once were.

MidwifeyForLifey · 12/03/2019 08:06

I think it's absolutely fair enough to have deep reservations about an illness that has no obvious physical cause or tests to determine its presence

Oh, you mean like mental health issues? Hmm

Tinyteatime · 12/03/2019 08:45

But many people with fibromyalgia won’t accept that there could be psychological factors at play, that’s the difference. They ascertain that it’s 100% physical in cause. There are AFAIK detectable ‘chemical or hormone imbalances’ in many severe mental illnesses such as schizophrenia and anorexia. Even so they are of course considered mental illness, yet they have more physical markers than fibromyalgia? A medic at the start of the thread asked for links to proper peer reviewed research to suggest that there is an underlying physical cause of fibromyalgia and no one has been forthcoming. Yet the thing that people (and seemingly some doctors) find annoying about fibromyalgia sufferers it the seeming absolute refusal to accept that there may any psychological factors at play, when realistically as far as I can see thats what the current evidence points too. On a side note It’s interesting to me that it’s often older women diagnosed. My grandmother sort of gave up on life when she was about 70. I believe She was knackered of a life of boredom and raising 4 kids, a bit of a shit childhood, marriage at times rocky. She kept saying she was in terrible physical pain. She had every test done under the sun over several years. My opinion was that she was deeply depressed but couldn’t put it to words as that generation had no idea what mental illness even was and certainly there would have been awful stigma if you had one. The fury of my grandfather when it was gently suggested that the cause could be mental illness confirmed this. He lost hours of his life worrying that there was something physically wrong with her that the stress killed him. All she would say when asked was ‘I’ve got pain’. I’ve no doubt it was 100% real for her. She did eventually become catatonic. I wonder if she would have been diagnosed with fibromyalgia of she were still alive
, or if her pain did indeed have a physical cause and that in turn caused her depression, we will never know but she came to a very sad end as she ended up killing herself.

Weetabixandshreddies · 12/03/2019 08:59

The problem with saying that there is a psychological component to a physical illness is that some medics then seize on this. They focus on psychological treatment and not on the physical symptoms too. So much of pain management now is around mindfulness and relaxation. If you broke your leg would you accept some youtube mindfulness videos as treatment? I have arthritis - some of my joints need replacing but I am considered too young. I am in severe pain all day every day. I do everything that the hospital wants me to do - I work, I exercise, I do mindfulness (!!!!). I am in agony still. I don't enjoy anything in my life because I am in pain every single minute. These strategies for treating chronic pain are not working and they feel like a way for drs to dismiss people and to avoid treating the causes of the pain.

Why should I, or anyone else, have to hide the pain that we are in because it upsets other people? If people find comfort in posting memes on facebook, so what? If you don't like it unfriend them or scroll past.

WhiteDust · 12/03/2019 09:04

Oh, you mean like mental health issues?

You do realise that psychosis, schizophrenia and bipolar disorder (or manic depression) are caused by physical, chemical abnormalities in the brain don't you?

Weetabixandshreddies · 12/03/2019 09:21

WhiteDust

But there aren't diagnostic tests available are there? They are diagnosed based on symptoms, as is fibromyalgia. There are studies being done that are finding physical abnormalities in people with fibromyalgia. Just because the research isn't available right now doesn't mean that it isn't a "real" illness, it just means that not enough research has been done yet.

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