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I have Fibromyalgia AMA

223 replies

brightonbeautifull · 10/03/2019 21:06

Ask me anything!

OP posts:
Voila212 · 11/03/2019 10:32

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MegaBat · 11/03/2019 10:33

Reported because I think it's a malingerers condition? Ok then!

madvixen · 11/03/2019 10:35

Megabat, do you think people fake their symptoms?

MegaBat · 11/03/2019 10:36

@madvixen no I don't. I think it's either misdiagnosed or it's a psychological thing that some women if a certain personality type suffer from

TryItAndDieFatLass · 11/03/2019 10:38

PuddingsAreMyJam I have a completely different condition but spend a lot of time researching it, trying to find support groups, treatments and juyst being able to talk about it. My condition is 'proven' by numerous X rays, CTs and MRIs. Your point doesnt really prove, or disprove, anything

TryItAndDieFatLass · 11/03/2019 10:39

MegaBat Just women? My H has been diagnosed for over 20 years

Tolleshunt · 11/03/2019 10:39

Then 'malingering' is the wrong word, MegaBat. It suggests deliberate faking for gain.

Don't you feel any empathy for those who are suffering?

theredjellybean · 11/03/2019 10:39

Bing...I'd be happy to be educated in this diagnosis of fibro. Please can you link to the research, evidence, peer reviews and nice guidance because I can't find it.
Also just because a rheumatologist 'diagnoses' something doesn't make it a disease with a pathological basis.
Gastroenterologists diagnose ibs... But it has no pathological basis.. Doesn't make it a disease.
I know plenty of patients labelled with fibro by their GP, you don't need a consultant to give a name to your symptoms.

MegaBat · 11/03/2019 10:40

I've said what I think. It chimes with a lot of others. Sorry for those who feel ill etc but maybe all the thousands out there spouting about spoons and all 'woe is me' memes are ruining it for the rest of you?

madvixen · 11/03/2019 10:42

See I sort of agree with Megabat that there is a psychological element to the illness. I have fibro and after 8 years, I finally have a treatment plan, part of which is I have to see a psychologist to work through some trauma that occurred a few months before my symptoms began. This doesn't make my symptoms any less real (I wish they bloody were) but it is a realisation that the brain is the most powerful part of the body and can do all sorts of things if we don't care for it.

InglouriousBasterd · 11/03/2019 10:42

It’s interesting. I’m waiting to see the rheumatologist as I have consistent inflammatory markers present in blood and have various rheumo symptoms- fibro is being tabled as a possibility. I find this incredibly embarrassing- largely due to attitudes like on this thread- to the point I have only told a few people close to me.

I am actually coming off antidepressants as I am so much better (I have had a very rough few years) so I know personally it is not psychological. I know that when it sets in, I have never felt exhaustion like it and I can’t believe how much everything hurts.

The problem is, I think it is jumped on as an easy ‘excuse’. I’m all for giving conditions awareness but I generally find that those who shout loudest give the condition a bad name. I have hit a point where I don’t even mention the symptoms to medical professionals after some eye rolling. I’m kind of dreading this being the diagnosis to be honest.

I think the spoons thing doesn’t help.

Tolleshunt · 11/03/2019 10:43

You mean all those dreadful fuckers attempting to gain understanding for a painful condition that limits their life, destroys their careers, earnings, plans for parenthood and takes away their dreams for the future, MegaBat?

What utter arseholes they must be, eh?

InglouriousBasterd · 11/03/2019 10:44

I’ll also add that I’ve had two years of counselling. The symptoms started after joint surgery. I work out every day and eat well.

nailsathome · 11/03/2019 10:44

I am looking forward to them developing a test for it so that those of us who actually have it no longer have to battle with those who don't believe in it and can be distinguished from the fakers. They are looking into the imbalance in neurotransmitters in cerebrospinal fluid. I have read some fascinating articles from research scientists. I will find links for you.

MegaBat · 11/03/2019 10:46

Very touchy. And hard of reading too

I've said my piece along with lots of others. I believe it is misdiagnosed and I also believe women of a certain personality type - and some attention seekers or those unable to cope with day to day life or living in chaos - tend to suffer from it. I think that's a fact based on all I see

A close friend of mine has stage 4 cancer. Not a meme or a moan in sight. Another Facebook pal can't go an hour without some stupid spoons thing and a big old moan

I'll let you crack on with your bleating now. It's merely my opinion based on all I see. You're either being fobbed off by the doctor or you're revelling in it.

PuddingsAreMyJam · 11/03/2019 10:48

@TryItAndDieFatLass I never said it was proof.

My dd has a 'proven' chronic illness, that will likely lead to her dying of it one day. Spending hours and hours reading about it on the internet didn't help though. It made things worse. I prefer these days to live in the moment though, rather than reading about worst case scenarios and catastrophising about what her life could end up like.

Decormad38 · 11/03/2019 10:56

I for one am happy to be educated about it. Not from Google though but through some peer reviewed research articles. I am happy for the reason that it would perhaps enable me to show empathy when my SIL who have both now not worked for 15- 25 years suddenly are able to jet off on holiday twice a year and go sightseeing and swimming. I personally think in their cases for one she suffered a bereavement that she never resolved and the other suffered domestic violence. They both appear lacking in self esteem and both appear to suffer from anxiety. This is my experience and just because it doesn’t match yours does not make it wrong. This has led me to the belief that their fibromyalgia diagnosis has enabled them to ‘drop out’ of further trials of life. I fully appreciate though that other people will have different experiences.

puppymouse · 11/03/2019 10:58

Interesting thread. I know three people with diagnosed fibromyalgia. 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. I strongly believe anxiety can give you physical symptoms.

However the other person I know with it works very hard in a pretty physical job. Has never sought attention and just carries on. And reading a lot of posters here I can't imagine what it must be like - whatever the cause- to be constantly in pain and struggle to function, hold down a job etc. I think GPs have a difficult job to distinguish between these types of people.

QuirkyQuark · 11/03/2019 10:58

Inglorious if your inflammatory markers are consistently raised then it's more likely you'll be diagnosed with an autoimmune disease. Although you can have like I have, secondary fibro that appeared after several years of fighting the inflammatory disease and trying to get them under control. Good luck.

InglouriousBasterd · 11/03/2019 11:10

Thanks Quirky. The markers are really indicative of that but the lupus / RA factor came back ok, so the GPs are baffled. Hope the rheumatologist can shed some light!

howhowhow · 11/03/2019 11:11

Have you tried a low carb diet. Meant to reduce inflammation.

Tiles · 11/03/2019 11:12

It's interesting to get the perspective of people living through it. Food for thought. Thanks for opening up about your suffering. I imagine it's very hard to do when lots of people are against you.
I wouldn't ever say your pain is not real.
Interesting topic.

Mysteriousbee · 11/03/2019 11:22

i know that when it sets in I can’t believe how much everything hurts.
I totally 100% believe the pain fibromyalgia sufferers feel is real. What I’m not sure about is that the pain is actually due to fibromyalgia.

As I said up thread my pain is caused by Ehlers Danlos type 2. There’s no blood tests for it but when I saw a rheumatologist who specialises in it she linked up all the other things I have - the lumpy nodules on my heels, little ball bearing type lumps under my elbows, the easy bruising, slow healing, lots of tendinitis and torn ligaments, very late walking age etc etc. My own GP and local hospitals rheumatology dept had no idea and just called it fibromyalgia and packed me off to a support group. I’d never have got a proper diagnosis if it wasn’t for DD seeing a rheumatologist at the National Orthopaedic Hospital who diagnosed her with Ehlers Danlos as well as osteo arthritis .

I definitely have experience of psychosomatic pain after my DM died. I felt like I’d been kicked hard in the centre of my back. The pain went on for months and it was very much real. As I began to get over the worst emotional pain of my grief, the back pain began to ease off. I think it was a metaphor almost for how I felt emotionally - like I’d been kicked hard. There’s a huge link between mind and body and just because someone has psychosomatic pain does not mean they’re faking or don’t exist. I’m just not sure they present a condition in their own right ie fibromyalgia.

Both DD and I don’t go on any EDS forums as they too seem full of people for whom life is defined and given purpose by their condition. The spoon stuff is ladelled out on them too. If you have a condition that causes fatigue then it’s important to factor in downtime if possible. Sometimes it’s not possible (DD has a toddler and a non sleeping baby,) and I thInk it’s vital not to focus on everything that hurts or feels wrong or to hang the rest of your life around the diagnosis. . I also think it’s different from ME which seems linked to the body’s response to a virus.

notsurewhatshappening · 11/03/2019 11:23

I don't have fibromyalgia but I have ME. Before I became ill I was a 'doer' - regularly went to the gym, could easily run 5k, good social life, lots of interests, always cooked from scratch, professional career going well, enjoyed big days out to theme parks etc. Then my children got chicken pox and I became unwell too. Labyrinthitis, intense itching everywhere, sleeping for 16 hours a day, burning pain in my joints, dizziness when standing up, blurred vision, tinnitus. Suddenly having to lie down a lot having been so active is not fun. Staying at home while DH does the theme park trips with DCS is not fun. I don't post about it on FB, some close friends and family know I have ME but I don't publicise it because I don't want to be seen as a malingerer and also, it could be so much worse. I just want to feel better and get on with life. I focus on what I can do.

One of the reasons such little research has been done into these conditions is that as a community, sufferers of ME and fibromyalgia have such little energy they are not able to campaign or fight against bad research / inaccurate portrayal in the media / unhelpful attitudes. This is a great shame and perhaps there would be a clear diagnosis test and maybe even a cure by now if more research had been done. I believe ME and fibromyalgia are both physical illnesses but the symptoms can be made worse by poor mental states. Cruel attitudes do not help mental health BTW.

InglouriousBasterd · 11/03/2019 11:27

Howhow yep, I low carb.

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