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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 09:06

That's spot on - only attention seekers seem to suffer with this illness. Kindly, I think it's misdiagnosed thyroid or hormonal issues. Non kindly, I eye roll to the max at the daily meme sharing and spoons shit

Livedandlearned · 11/03/2019 09:08

I feel the same as most of the pp too. I don't believe it. We all have aches and pains, it's how you deal with it that is important.

CurlsandCurves · 11/03/2019 09:10

A male friend and ex colleague of mine has it. And he’s not in any way a drama queen or an attention seeker!

He struggled for years to keep going in his job before he left. Felt he had to because he could no longer give what the job needed from him. He’s since set up a business from home, based around a hobby, so he can work around his illness.

I can see how it’s perceived in a bad light, as it’s such an invisible illness. But just thought I’d share what I know of it from my friend.

TinselAndKnickers · 11/03/2019 09:11

Another one here with it - definitely not a meme sharer or woe is me. I don't like feeling sorry for myself - I was very active and happy before, and still do some classes where I can.

It took 4 years to get a diagnosis and a shiteload of tests, which I'm still unsure of, and every time something happens unrelated it's brushed off with "must be your Fibro" which is very annoying when it's an intense pain and not in the usual symptoms. I understand why people are a bit skeptical but people used to think MH problems were bullshit. It's one of those things where you don't know until it's happened to you - I do agree people who constantly share memes and harp on about it are very annoying though Grinunless it is a genuine explanation for somebody who doesn't know what it is, I don't tend to talk about it.

nailsathome · 11/03/2019 09:11

I have fibro and have never posted on fb about it. Only my immediate family know. Before my diagnosis I also thought along the same lines as many people that it was just attention seekers or lazy people. Now I know that it is most definitely real and I hate it. I am a hard-working person in all aspects of my life and it has taken so much from me. I am so angry with my body for behaving like this.

There is now research and evidence to show a physiological issue with the pain pathway. There are published papers in reputable journals by research scientists if you care to search for them.

Toddlerteaplease · 11/03/2019 09:11

I must admit. I'm also cynical about it. Mainly due to the huge fuss that people who have it make. I.e on social media etc. I have MS and I've never seen anyone complain about their fatigue or #bad MS day on social media. (Not trying to play disease top trumps)

TinselAndKnickers · 11/03/2019 09:14

@Toddlerteaplease see, my uncle has MS and constantly is posting memes and rants on Facebook about it! He actually refuses to speak to my grandma now and said she wasn't giving him enough attention about it GrinHmm but my colleague has it and never brings it up! I think it depends on the person Smile


I also agree with a lot of diagnoses (spelling??) being wrong - a lot of people google their symptoms, this comes up and people go to the GP saying I must have this! I hadn't heard of it until the GP mentioned it, year 3 of my quest to solve my battered body Grin (lighthearted, I'm not a martyr!!)

justneedatempname · 11/03/2019 09:16

NC for this. My mum has been diagnosed with fibromyalgia for several years. She has been investigated for many illnesses all of her life, and I would say has also shown evidence of munchausens by proxy, with her children. She did actually suffer a life changing (at the time) illness some years ago and the fibro was diagnosed after she was cured from that. My personal belief is that the fibro is another way for we to elicit sympathy, not work and have to rely on others. She is also obese and hasn't worked for over 30 years. I hate to be a cynic but I have GP's in the family, again all of whom won't diagnose fibro as they believe it's a never ending vicious cycle of perceived illness, which is actually mental not physical.

WhiteDust · 11/03/2019 09:20

For a very long time, Fibromyalgia has been considered to be of a psychosomatic cause and it has often been mistaken as pure Hypochondria.

I'm on the fence.

Inforthelonghaul · 11/03/2019 09:22

Everyone I know who has been diagnosed with fibromyalgia is a particular type of personality which leads me to believe it’s more psychological than physical.

Mof3K · 11/03/2019 09:28

Wow there's a lot of disbelief on this thread.
My husband of 30 year's has M.E with fibromyalgia. He was the most hard working persons ever. 12 hour shifts, manager of a busy London parcel distribution centre. Forever doing overtime, never home.
He developed glandular fever 10 years ago and just NEVER got better.
We've been told it triggered the M.E.
He's lost 5 stone. Vomits and faints regularly. Has daily debilitating pain. Swollen joints, crippling migraines. He cant go to work. He hasn't been abroad or ob holiday in 10 year's, he doesnt go out!!
There's no competition. He has sobbed, begged the GP to find a cure.
He's not " a bit down " he's bloody ill
It's ruined his life.

Weirdly i DO agree with what you're saying about the spoons and the memes ruining the legitimacy of the illness. Isee the women on Facebook stating they have it on support pages and then also going on holiday and nights out. Its soul destroying. I do think some people say they have it when they don't. I do think its a tag some women like to give themselves in an attention seeking way. But my god my poor husband is not faking this.
It's ruined our lives. He's a broken man.

Walkmehome · 11/03/2019 09:28

I believe the physical symptoms are real eg awful pain. But I don’t really understand it (trying to due to family member who is very ill) and I do think there is a link to depression.

Walkmehome · 11/03/2019 09:29

What are the personality types inforthelonghaul out of interest?

Tiles · 11/03/2019 09:30

I believe it's psychological, it's people not coping with the stress of life and it spirals into pain and depression.

Everyone struggles with life

You have to listen to your body and your mind. When I get aches and pains and my mind feels out of control I stop and think why.

Lack of sleep
Lack of exercise
Lack of healthy food
To many negative thoughts
Wanting more love and attention
Family dramas
Work overload
Feeling guilty for a bad thing which spirals and turns your thoughts toxic.

All these things can manifest themselves as physical pain.

DH gets a lot of physical pain and migraines but they are due to stress. He doesn't ever get stressed in his mind, he has a clear head but his body takes the brunt of it. If he wasn't mentally sound and let himself over think things he probably could demand a diagnosis.

Instead he eats well, stretches, yoga, gets sleep and listens to his body. Relaxes when he needs to and doesn't push his body at work (builder).

sleepalldays · 11/03/2019 09:32

I agree re it's always attention seeking people on Facebook with it. (On mine anyway!) they type that checks into hospital on Facebook then refuses to tell anyone why but wants sympathy.

I am 100% in agreement it's a psychological issue with physical manifestations. There is no 'cause'.

I have chronic fatigue diagnosed (I think it's also called ME?) and whilst it affects me physically it really depends on my mental state as to how bad I'm feeling, hence why I also believe chronic fatigue is a symptom of mental disease/depression.

QuirkyQuark · 11/03/2019 09:32

Gosh there's some mean people here!
I never used to believe in fibro either, I have several autoimmune diseases and an excellent consultant rheumatologist. I'm on the most expensive drugs for my autoimmune diseases but I developed fibro as well, diagnosed by the same consultant.

It may be that there are people who aren't properly diagnosed because it can only be done by a rheumatologist and not a Gp but it does really exist and I can tell the difference between an autoimmune flare, when mythyroid is under attack or when the fibro is sticking the boot in.

Tiles · 11/03/2019 09:33

Mof3K

That sounds very hard for the both of you. Sounds like his body is shutting down.

Has he tried CBT or therapy to get him through the hard day's?

theredjellybean · 11/03/2019 09:33

@bananasandchocolatecustard
You say you have epstein Barr... Do you mean you currently have the active phase of the virus?
Or do you mean you have the antibodies on a blood test?
Every person who has ever had epstein Barr has the antibodies.. Doesn't mean they are ill with it.
I had epstein Barr aged 16...i don't now say I have it but I would test +ve if I had a blood test.

IvanaPee · 11/03/2019 09:34

@Mof3k your husband has ME though?

DaphneduM · 11/03/2019 09:39

I have a family member who 'suffers' from fibromyalgia. He uses it as the ultimate get out clause for anything that doesn't appeal - funnily enough he can always seem well enough to attend lavishly catered large family events. He looks extremely healthy, ironically - unlike his waif-like, stressed and very thin wife who has to bear the brunt of doing all the family stuff that he can avoid when he decides to have an episode. Sorry, this makes me very cynical about fibro - as others have said aches and pains are part of the aging process and you just get on with it. My family member is always banging on about it - very attention seeking individual. Ironically he managed to get medically retired, but now manages to do project work of his own choosing.

Voila212 · 11/03/2019 09:43

This reply has been deleted

Message withdrawn at poster's request.

WeBuiltCisCityOnSexistRoles · 11/03/2019 09:46

I don't think this thread is going as you expected OP!

I do think (as with a lot of illnesses) mental health has an impact on Fibromyalgia. I have a different condition which causes chronic pain/fatigue amongst other stuff, and I really have to be mindful not to spend my time being introspective and self centred. Chronic pain/fatigue can consume your mind and become a vicious circle, IMO.

I do think the demographic (for want of a better word) of fibro diagnosis's must show something. I do think it's used as a bit of a "catch all" for people who are feeling fed up and knackered with life (pretty much most women with young children!) Feeling like this, especially the tiredness, can lead people to concentrate on how bad they feel, they go to the GP who runs tests, nothing is found but patient is adamant they have physical symptoms - fibro diagnosis.

I have no doubt people do have physical symptoms but physical symptoms can be caused by mental state of mind. For example, we feel embarrassed- we blush - physical manifestation of feelings.

A lot of people are very defensive about being offered counselling/anti depressants etc for what they believe is a physical issue, which I think is a mistake. I think they're refused out of defensiveness, feeling HCPs are concentrating on mental health rather than physical.

Personally I have taken every pain management course going, and if changing my mindset helped my pain levels - result! Even if it was a placebo effect, if it worked I would be bloody grateful! I have a diagnosis which can be "proved" with medical evidence - it does cause pain and fatigue but I accept that trying to get my mental health the best it can be, will help.

I hate the spoon theory as it seems so negative and "can't do". I know about pacing, about overdoing it and conserving energy but I like to think of targets rather than limits (unfortunately I also apply this mindset to my credit card limits Grin)

It's an interesting discussion and the tone on this thread seems to be different than previous threads, tbh.

Bananasandchocolatecustard · 11/03/2019 09:50

There jelly - Epstein-Barr, not currently active thankfully.

Margotshypotheticaldog · 11/03/2019 09:52

I don't have any experience of fibromyalgia. But is a real shame for people suffering from genuine illness, if misdiagnosis (or overdiagnosis) causes their symptoms to be taken less seriously.
My Mil diagnosed bil with ME after the birth of his first child. Hmm
As pp said, there does seem to be a danger of medicalising the ordinary conditions of life.
Sorry op, I don't actually have any questions, but find the discussion interesting!

MarvinMarvinson · 11/03/2019 09:53

My thoughts are that it is something people genuinely suffer from but that it is easily 'faked' or adopted by people who may not genuinely have it. Those people are the attention seekers you see on social media, they fuck it up for the genuine sufferers.

I know a few of both kinds. People who quietly get on with it, who never even mention it really. And the meme posting ones who make me a bit cynical.

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