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AMA

I have Fibromyalgia AMA

223 replies

brightonbeautifull · 10/03/2019 21:06

Ask me anything!

OP posts:
Anothertempusername · 12/03/2019 09:22

I have found that my mum has become incredibly selfish since her diagnosis also; any illness (however serious) others have she belittles. My MIL had 2 bouts of breast cancer and my mums response to finding out was "at least she can have chemo, nothing can help me". That is her genuine attitude. I'm 9 months pregnant and she's not been to visit once (I've been to see her at least half a dozen times) as she can't handle the stress of the visit (an hour being driven by her partner). It's really really hard to have sympathy when she simply won't help herself or acknowledge that anyone else may suffer.

I have 2 old friends with this diagnosis and both of them display exactly the same behaviour.

Weetabixandshreddies · 12/03/2019 09:34

I can see why from your point of view that it is hard.

I don't know what is happening with your mum but I can hazard a guess. Living with a chronic illness is so hard. You know that this is it. This is your life. It won't get better. It won't go away. People seem to have much more sympathy for someone with an illness such as cancer. I can't begin to understand what it feels like to be diagnosed with a potentially life threatening illness like cancer and I am not minimizing it. But no one would post on a forum like this that a family member has been diagnosed with cancer and they are milking it, moaning on and on, entering into a competitive "whose symptoms are the worst" with other people, they moan about how ill they are yet go out to the pub ok. This wouldn't happen.

It's the difference between having an " acceptable" illness and one that others don't believe in. Maybe your mum feels that no one is trying to understand what she is going through? Maybe you expect too much from her? I know that I do far too much. I make myself worse because I don't want to be seen as a malingerer or to be seen as using my illness as an excuse. There is a stigma around having certain illnesses and that isn't right.

mydogisthebest · 12/03/2019 09:35

Anothertemp, so you know 3 people with fibro and because they all act the same everyone with it must?

I have been diagnosed with it. Not even sure I believe I have it but I do have something wrong with me. To go from being able to walk a good few miles every day to sometimes being literally unable to walk more than a few steps is horrible. I hate that more than any of the other symptoms/problems I have.

Me and DH go on holiday and are unable to walk and sightsee because I just can't do it. It's the one thing we like to do on holiday - not interested in sunbathing, beaches, swimming etc. I have sobbed because I can't walk and that is not the sort of person I am really.

I google it and belong to facebook groups only because I want to find a way to get rid of it, to be able to lead a normal life again. I can't work and am entitled to precisely nothing. We struggle on DH's earnings alone.

I could rest for weeks but that would not mean that I would have a day with tons of energy and able to walk long distances because I wouldn't.

WhatNow40 · 12/03/2019 09:40

Lady Gaga said this last year about Fibro.

"I get so irritated with people who don't believe fibromyalgia is real. For me, and I think for many others, it's really a cyclone of anxiety, depression, PTSD, trauma, and panic disorder, all of which sends the nervous system into overdrive, and then you have nerve pain as a result," she said. "People need to be more compassionate. Chronic pain is no joke. And it's every day waking up not knowing how you're going to feel."

Anothertempusername · 12/03/2019 10:01

I absolutely believe the pain is real. I just really struggle with the behaviour of those I know who have been diagnosed with the condition. I also believe the pain is as a result of a psychological condition. They are my beliefs; I am not minimising anyone's suffering I am just giving my experience of others with this diagnosis.

PuddingsAreMyJam · 12/03/2019 10:02

@Anothertempusername that sounds just like my mother.

I've known two people with fibro actually say that they wished they had cancer instead (completely inexcusable, I don't care what excuse you come up with for that).

Another, who hadn't worked in the last ten years or barely moved from the sofa for that matter, told my husband, who had just finished his sixth 12 hour night shift, that until you've had fibromyalgia, you don't know what tiredness means.

I sometimes just wonder whether they can actually hear themselves.

Tolleshunt · 12/03/2019 10:07

Your posts display zero psychological insight or compassion, Pudding.

For your information, having fibro can easily be more tiring than having done a 12 hour shift. You do realise there are sufferers who have done those 12 hour shifts before becoming ill? So do have experience of both to compare. You do realise that most suffered lead full active lives before being afflicted?

I'm really sorry that your DD has been seriously ill. No doubt that was an extremely stressful time for you. But it surely can't help to play illness top trumps. Other people suffer too.

Anothertempusername · 12/03/2019 10:19

@PuddingsAreMyJam my experiences are that people I know who are diagnosed will always underplay others illnesses and only talk about theirs.

I also wonder whether there is a link between fibro diagnosis and health anxiety.

Weetabixandshreddies · 12/03/2019 10:19

I just really struggle with the behaviour of those I know who have been diagnosed with the condition.

Is it really for you to judge how anyone, with any illness behaves though? People cope in different ways. You don't know how You would cope either.


I also believe the pain is as a result of a psychological condition.

Do you have research to back this up.or is just your belief? Because really, without anything to back that up your beliefs aren't really worth anything. That is just your opinion and it is as helpful as all the people offering their snake oil cures to people.

Anothertempusername · 12/03/2019 10:20

@Weetabixandshreddies my actual words were "I believe". They are absolutely my beliefs. Doesn't mean they're wrong or right. But they're mine and I'm entitled to them, especially with several years of experiencing a very close family member with this diagnosis.

Weetabixandshreddies · 12/03/2019 10:21

Anothertempusername

But you are also underplaying someone's illness.

Maybe the people that you know behave as they do because they are surrounded by people who down play or doubt the existence of their illness?

Anothertempusername · 12/03/2019 10:23

@Weetabixandshreddies I am afraid anyone who underplays cancer / brain tumours / terminal illness in favour of their own suffering is not the sort of person I wish to associate with. The sad fact is one of these people in my life is my mum, who I love but do not agree with or condone her behaviour.

Tolleshunt · 12/03/2019 10:32

Does anybody on this thread 'believe' that Lady Gaga is a lazy sort, who just wants do get out of doing any work?

Cloudhopping · 12/03/2019 10:34

I recently attended a conference where a doctor was speaking on ‘functional disorders’ such as fibromyalgia. His opinion was that the symptoms very much exist but it is a mind/body illness. There is no identifiable disease process going on and his opinion was that psychiatric support should be put into place in GP settings so those at risk or diagnosed could be referred on and supported early on to give the best chance of recovery. He wasn’t saying that ‘it was all in the mind’ but that somehow the messages from the mind get mixed up and effect signals to the body. He believed that the worst support for patients exhibiting symptoms was fibromyalgia forums etcdue to the psychological effect of surrounding yourself with certain beliefs about the condition ie that you’re never going to get better etc.

Weetabixandshreddies · 12/03/2019 10:37

I think it is very difficult.

Obviously I don't know your situation. I don't think that anyone should underplay the illness of another person. It shouldn't be a competition. No, your mum shouldn't be insisting that she has it worse but then I don't think you should be telling your mum that she has it better than someone else.

I don't know, unless you've walked in someone else's shoes I wouldn't be too quick to judge.

Chronic illness, no matter what it is, is very difficult to come to terms with. Your life is limited and impacted in ways you'd never imagined and that isn't easy to accept.

There isn't a right way to deal with it, just as there isn't a right way to grieve. Some people are very accepting, others get very angry, others self destruct. You can't tell someone how to deal with it. I guess all you can do is remove yourself.

PuddingsAreMyJam · 12/03/2019 10:38

@Tolleshunt it also works the opposite way. Does anybody believe it just because Lady Gaga says it is so? What a bizarre example.

And yes, you're right. I have zero empathy or sympathy with someone who states that they would rather have cancer than fibromyalgia. In the game of illness top trumps, no one will ever beat a #fibrowarrior as evidenced by the thread.

But that's me done on here. I'll leave you all to commiserate with each other and wallow in each other's misery.

Tolleshunt · 12/03/2019 10:44

I'm not 'wallowing in misery' Pudding (what a horrible judgement). I don't have it. I do, however, have empathy for anyone who is suffering from a chronic illness, whatever that is.

To my mind, if somebody would rather have cancer, that points to a very severe and deep level of distress. That person is really suffering, and deserves compassion, not scorn. You obviously feel differently. That seems to me to be a very bitter and hard attitude to take to life/other people. I would not wish to live my life that way.

Weetabix I think your post of 10.37 is very balanced and thoughtful. I agree.

Weetabixandshreddies · 12/03/2019 10:49

I don't have fibro but I have crohns and arthritis, so chronic conditions that I will have for life.

My dad had prostate cancer. It was a shock to get the diagnosis. He had very high dose radiotherapy - a very targeted treatment, only a few doses and no surrounding damage. He got off very lightly I know. He is cured.

He says, and I agree, that I have it worse. I know that sounds awful and in no way would I extend that to everyone that has cancer but if I were talking about this scenario then yes, I would rather have had that than what I have got.

I would never say that to anyone. I look at some people and think that I could never cope with what they have, other people tell me that they couldn't deal with what I do. You just can't know how people deal or cope with their illnesses. I just don't get the value judgements.

Do you judge people with psychiatric illnesses or addictions in the same way?

SparklingGin · 12/03/2019 11:36

I was diagnosed with fibromyalgia for 4 years, it turned out that I have ms. My pain consultant doesn’t believe in fibromyalgia he believes it’s a chronic pain condition misdiagnosed. Regardless it’s very debilitating.

When I got my diagnosis I was relived that I had a diagnosis which people would take seriously and which could be proven, I always felt the medical profession were skeptical even thought I have always worked and never claimed benefits.

IvanaPee · 12/03/2019 11:56

Another, who hadn't worked in the last ten years or barely moved from the sofa for that matter, told my husband, who had just finished his sixth 12 hour night shift, that until you've had fibromyalgia, you don't know what tiredness means.

I’ve already expressed my cynicism about fibromyalgia on this thread so I’m not a #fibrowarrior but the above is ridiculous.

I promise you that chronic fatigued from a chronic illness or disease isn’t the same type of tiredness one feels from 12 hour shifts. I’ve done/had both. It’s apples and oranges.

Anyway, where’s OP??

Tinyteatime · 12/03/2019 12:01

But crohns and arthritis ARE deeply debilitating chronic conditions that are terrible to live with. And they have a physical cause that make the body very ill. How can someone honestly say they’d rather have a physical condition that could kill you, disable your body, lead you to have your bowel removed etc than something where there is nothing ‘physically’ actually wrong with your body?

IvanaPee · 12/03/2019 12:02

Crohns is a debilitating disease though.

Fibromyalgia isn’t actually a disease, is it?

HopeMumsnet · 12/03/2019 12:04

Hi all,
It really looks like the OP isn't coming back at this stage. We're inclined to leave her Ask Me Anything here but close the thread to further posts.

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