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AMA

I have Fibromyalgia AMA

223 replies

brightonbeautifull · 10/03/2019 21:06

Ask me anything!

OP posts:
QuirkyQuark · 11/03/2019 11:33

Inglorious a good rheumatologist is worth their weight in gold. And there are more antibody tests a rheumy can request. That said I have PsA amongst other things and there is no blood test to say you have it. It's like a jigsaw putting the pieces together. If any of your family have autoimmune diseases then write down who and what they have, that's a part of the jigsaw puzzle Grin

TheQueef · 11/03/2019 11:37

Some of these replies are cruel.
I'm not medically qualified so if I sought advice from medico and they dx fibro I would believe that, not sure why some of these replies are so scornful to the OP.
Also the OP didn't meme or mention spoons so why she's lambasted for that is puzzling.

Willow1992 · 11/03/2019 11:38

I know 3 women who have fibro. I must admit I wonder if it has been misdiagnosed, because all 3 of them had a lot else going on (bereavement, life threatening illness, hectic family life, full time jobs, depression) before the diagnosis and were clearly struggling to cope (as would I). They have all been able to step back a bit since the diagnosis. They do all have rather frazzled looking spouses though!

I don't think they're drama queens or lazy, but I just wonder if it's either a cry for help or a result of being at breaking point with stress.

QuirkyQuark · 11/03/2019 11:40

I'll ask you a question op. Which drug have you found most helpful for your symptoms? For me it's amitriptyline, this has really helped with getting a restful sleep.

InglouriousBasterd · 11/03/2019 11:44

Quirky - I will do! I’m hoping s/he can provide some answers and do a bit more digging!!

user1457017537 · 11/03/2019 12:12

Megabat you obviously have your opinion and you are entitled to it. My late Aunt May have had an untreated phsychological trauma re her recurrent miscarriages which included a still birth at 7 months. However, she was active, engaged, funny and worked as a Carer in her later life, travelling miles to look after others. He home life was not chaotic but amazingly well organised. I can only go by her and her life.

sagradafamiliar · 11/03/2019 13:00

Mega your insulting posts are littered with misogynistic terminology. As for 'women of a certain personality type', well we can see what type of personality you have. I'd rather be blighted by pain than have a mindset like you, inflicting your bitter self and antiquated notions on those around you. And that's really saying something.

HeyCarrieAnneWhatsYourGame · 11/03/2019 13:12

I’ve been diagnosed with it but I’m not sure about it as a diagnosis. I have seronegative rheumatoid arthritis and suffer from migraines, stomach ulcers, osteoporosis and severe eczema as well as recurrent infections in various areas of my body. I feel a bit like the Rhumatologist gave me this diagnosis to tick some kind of “diagnosed and discharged” box on the computer 🤷🏼‍♀️

I suspect what is now being called Fibromyalgia will be several (at least!) different conditions in the future. I definitely lack energy and have unusually strong reactions to outside influences like caffeine and alcohol and pollen.... But as a diagnosis it feels wooly and non-specific in a way that makes me uncomfortable.

I certainly don’t talk about having it much because, as has been mentioned by others, I know a lot of drama llamas with it who post all over social media and make me vaguely ashamed to be associated with the disease.

HighestMountains · 11/03/2019 13:19

Two out of the three of them are selfish, highly anxious, attention-seeking types who as a pp said generally struggle with life. They don't get a cold they get flu and chest infections, they put others out constantly; running around after them because of their symptoms and yet have the energy to do the fun things they want to do

It's the same with the people I know that have it. They expect everyone else to deal with the difficult bits of life for them but always have energy for fun stuff.

But that doesn't mean I don't know other people who have it and don't shout about it/use it as an excuse to be lazy and get attention, so I won't tar everyone with the same brush.

Also, the first group of Peppa, whilst annoying, still deserve sympathy imho as they're obviously not very happy people if they choose to live like that (or feel they have no choice but to choose to live like that).

QuirkyQuark · 11/03/2019 13:22

HeyCarrie if you have sero-negative Ra then why aren't you still under a rheumatologist?

HighestMountains · 11/03/2019 13:28

Lol just noticed I wrote Peppa earlier when I meant people, obviously.

mydogisthebest · 11/03/2019 13:53

I am disgusted with some of the posters on here. I was diagnosed with fibromyalgia about 10 years ago. I am no drama queen and the only person who knows I have it is DH.

I don't actually have it as bad as some of my friends do but even so it affects my life. I have had to give up work but am not entitled to any benefits and we struggle on DH's earnings.

Lots of days I am fine but other days I literally can barely walk. I get migraines that can last 3 days and I am not able to even sit up in bed. I vomit every 20 mins or so even though I cannot eat or drink anything. I usually have to have a doctor come out to give me an injection to stop me vomiting. The pain in my head is horrendous and I have a high pain threshold (had a ruptured ectopic pregnancy and didn't take any painkillers)

Abkbjbjb · 11/03/2019 14:03

Following as my poor mum has fibro ☹️

mydogisthebest · 11/03/2019 14:07

I would also add that I have never suffered any sort of trauma in my life. I am lucky in that I have a very happy marriage, no one in my family has died young (my parents are still alive and in their 90's). So that particular theory is, in my case, absolute rubbish.

I post on facebook but usually positive things. I don't post about being in pain or about spoons etc.

I used to walk everywhere. To and from work every day which was almost 2 miles each way. Walk my dog for at least 2 hours a day.

I struggle to walk my dog at all now. Our holidays were always spent sightseeing. I can't really do that now.

MaMisled · 11/03/2019 14:08

I know 4 females, all neighbours, who were diagnosed with it within a year of each other. All 4 received related benefits, housing association installed ramps to their front doors, walk in shower room, disabled parking spots. All 4 then looked after one or more very young grandchildren while the parents worked. When grandchildren started school, one by one, all 4 miraculously recovered and started working. Two lost huge amounts of weight and now run together every evening.

Coincidence?

Voila212 · 11/03/2019 14:09

This reply has been deleted

Message withdrawn at poster's request.

MsLucyLastic · 11/03/2019 15:36

I was diagnosed with fibro shortly after I had my daughter. Apparently big physical stressors can make it worse. The Rheumatologist said he thought mine initially started following having glandular fever, and a dreadful labour and childbirth ramped it up.

There has been research done which shows people with fibro have more pain receptors thsn most people, and that it is neurological in origin.

I had to give up a career I loved, due to pain, fatigue and cognitive problems caused by fibro. I am on benefits and hate it.

Its a fluctuating condition so sometimes I feel well enough to do something, but I pay for it later. I was able to go and see a band on Friday night. I have been in bed in agony since then.

Its a bloody awful illness, and for all those who day they don't "believe" in it: I dont believe you are medically trained. GPs tend to know little about recent developments and so can fall into eye rolling...however, mine keep up with latest research and told me explicitly that it is a.real, neurological condition, but one which is not yet fully understood.

I can assure you that it is not a form.of depression. I used to work in mental health medicine and really, if you think fibro is a type of depression or linked to a personality type (ever heard of.conversatiom bias?), the psychiatrists would have been rolling their eyes at you.

I dont like to wish this illness on anyone. But for the non medically trained "experts" on this thread, who don't "believe" in this very debilitating condition, I am willing to make an exception.

MsLucyLastic · 11/03/2019 15:39

@Voila212 I tried to ignore it too, but ended up making myself worse. Please look after yourself Flowers

MsLucyLastic · 11/03/2019 15:46

www.ncbi.nlm.nih.gov/pmc/articles/PMC5083139/

Medical research re neurological basis.

MsLucyLastic · 11/03/2019 15:47

*confirmation basis

Voila212 · 11/03/2019 15:53

This reply has been deleted

Message withdrawn at poster's request.

MsLucyLastic · 11/03/2019 16:07

Honestly Viola212, I really do get it. You arent a drama queen, you have a debilitating health condition. It sucks.

I so wish that people who doubt its existence would experience fibro for a week. I think their ignorant attitudes would change rapidly.

Ohallright · 11/03/2019 16:31

Hello,

Does anyone ever get better, or does it get progressively worse?

ukgift2016 · 11/03/2019 18:40

*My mother has it and researching it has become her hobby. She spends hours looking for looking it up on the internet, joining self help groups and the like."

Omg this is my mother. She has been diagnosed with fibromyalgia and it has made her worse with her 'attention seeking' behaviour. I feel for her as I believe she is in pain and she is officially diagnosed but I feel it holds people back.

user1457017537 · 11/03/2019 20:49

The wisdom of youth! Let’s hope all you doubting Thomas’s still feel the same when you are middle aged or older.

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