Fibromyalgia - be honest.

[Hellovation]

I think I’m going to be diagnosed with fibromyalgia.

I had never heard of it, until the neurologist and GP both mentioned it.

Having now mentioned this to a few people and their reaction leaving me confused, some internet searches lead me to believe it is widely believed to be a non diagnosis and simply something in one’s head or a ‘lazy diagnosis’ because doctors are at a loss.

I was heartened to think I might have a diagnosis and understanding and way forward to get better and live my life but now I feel so sad.

Be absolutely honest- what do you think of fibromyalgia?

@springintoaction321

completely agree. Fortunately I was seropositive as my rheumatoid factor was through the roof. My Rheumatologist is brilliant and did say that too many clinicians rely on being seropositive as a diagnosis of RA, when it’s not the case, you can be very much negative and still have it.

@Bathnet how magnanimous of you to say you don't think people are pretending to suffer.

Maybe you need to butt out of this thread because quite frankly unless you're a neurologist or someone with real knowledge of the subject - your thoughts are irrelevant at best and insulting at worst.

Maybe also note that being in constant pain over many years can make people depressed and grumpy.

The brain being so overwhelmed/ overstimulated it send messages to the body telling it it's in pain is physical NOT! psychological. It may be switched on by trauma just like an autoimmune disease can but psychosomatic pain is something completely different.

I believe it's real and could be related to thyroid disfunction which isn't being properly diagnosed, or other multiple vitamin and mineral deficiencies. Not in every case, but definitely must be in the mix. So that means likely an autoimmune component. Certainly not 'all in your head'.

This is interesting because both myself and the 2 others I know with fibro and EDS also have different diagnosed autoimmune conditions. Coeliac, POTS, hashimoto. They do say it’s not unusual once you’ve got one autoimmune you start getting others as well. There’s also some emerging research that EDS has an autoimmune link.

My dad had a serious autoimmune condition which hospitalised him for a year and then killed him. Very real with very physical symptoms. He went from being fit and healthy to bed bound with horrendous measurable blood test results overnight. Unable to walk or see and in horrendous pain.

It took months to get an actual diagnosis and I can remember the consultant at Addenbrooks who was one of the top autoimmune guys in the country saying that there were maybe 80 known autoimmune conditions but that ten years previously there had only been 40 known autoimmune conditions and that he suspected in 20 years time we’d know about 200 named autoimmune conditions. The emphasis being there’s a lot of stuff we don’t understand/not able to diagnose yet. It’s also interesting how autoimmune diseases run in families.

dd has had her full genome mapped, should get the results back in another 3 months. Her haematologist suspects she has a rare clotting disorder on top of her various autoimmune diseases. I wouldn’t be surprised if they find some random, rare thing with her.

I'm a doctor OP. From my POV the heartsink with fibro doesn't come from not believing it exists. I 100% believe that somebody with fibro is suffering and that their symptoms are real and I genuinely sympathise. However that doesn't change the fact that treatment is extremely difficult, complicated and often not well received by the sufferer. The reality is that there isn't a simple fix. Whether the sufferer wants to hear it or not the fact is that lifestyle changes such as pacing and talking therapies are proven to be the most effective ways of managing the symptoms. Aggressive painkillers are unfortunately not a safe or effective long term option. The patients who accept and embrace this are the ones who achieve the best 'recovery' (put in quotation marks because it isn't a condition you can truly recover from but that doesn't mean you can't optimise your quality of life) I wish you the very best with your treatment xx

I've seen 'real' fibromyalgia and in severe cases, it's absolutely debilitating. I wouldn't wish it on anyone.
BUT
It is also an exceptionally common way of playing the system, claiming benefits, etc, because it's so very difficult to prove medically.

It’s not okay 🤨 not by a long shot !

Oh god this sounds like me but with ankylosing spondylitis. I’m negative for the gene for it but apparently 30% of people are negative. I have text book symptoms and have had an MRI and even the MRI report says I have damage which indicates AS. But the rheumatologist is pulling faces about an official diagnosis due to the gene thing and also saying my spine damage and bone erosion is minimal and not too bad!

so here I am with terrible lower back pain and a scan which shows bone erosion. Terrible ankle tendon pain and my tendons keep tearing and need to be surgically repaired and she wants to say it’s fibro. 😂

Because I would be very unlikely to qualify. They are interested in basic functioning such as showering, making a simple meal, walking a few hundred yards. I can do all the things that it asks about. I could walk a mile or so. I just need huge amounts of down time/ rest after doing anything active. I am in constant pain though and always wake up still feeling exhausted.

I actually do some open water swimming (nearly stationary breast stroke). But I need to pace myself so carefully.

When I first retired I thought I'd be much better after a couple of weeks rest but I spent the first six months sitting on the sofa in a daze wondering what had happened to me. This has improved since and I've been working on improving my diet by cooking properly and structuring my week to manage a good balance of activity and down time.

Fibromyalgia ( I also have hypermobility disorder so it is sometimes difficult to know which symptoms are caused by which) is a pain, literally and figuratively.

Nearly all my muscles and joints hurt all the time. I'm very used to it so don't think about the pain that much but I think just having that pain all the time is exhausting.

I try not to focus on it too much and just get on with what I can do and enjoy the positives in my life.

i can really relate to this. And the good days and bad days are such a thing too. Yesterday I walked the dog 3 miles. This morning I nearly cried in Morrisons as the closest self scan tills were shut and I had to walk to the next bank of tills and could barely manage it.

Thanks for sharing ☺️

One of the myths about benefits is that certain diagnoses are an easy route to either PIP or the extra money for Limited Capability for Work Related Activity in ESA or Universal Credit.

The only common condition that does that for you, in ESA/UC. is Cancer where you're being treated with Chemo/Radiotherapy.

Otherwise the tests are functional; what you can or cannot do in the way of sitting/standing, reaching, carrying etc.

This was my sister’s situation too. She developed it in her 40’s and suffered for a few years and then it slowly went away.
To be fair on her she had a busy job and family but missed little time of work but made sure her holidays and weekends were proper time off days.

When I was diagnosed I was told it was because of the complex PTSD from my childhood. It took a very long time to get my head round it as I was angry that my life and body had been ruined through other people's actions. I tried all the medications thrown at me and now take pregababalin, amitriptyline, naproxen, venafalaxine and vitamin D. A year later I was diagnosed with pernicious anaemia and have to regularly have b12 injections, and recently ive found out i have arthritis. I've found stress is a major trigger so I try to avoid it, which is difficult. I've done all the courses and have therapy. I'm not sure it really is fibromyalgia, as I think i have another underlying auto immune disease. My body hates me and I try so hard to push through it, which leaves me exhausted and in agony, but if I rest too long the pain is much worse so it's catch 22.

I would have been one of the sceptics in this thread a few years ago .However I now have a DD16 with HEds ,an autoimmune condition and PoTs.I avoid telling people her diagnosis as it is met with the same ignorant comments as I've read others saying here about fibro.The GP is the worst (yes we had to go private- to a well respected GOSH consultant so I don't understand why the NHS don't believe in it).She is in chronic pain, fatigue, out of school and is gaining weight as can't exercise like she used to (has had to drop dance which was her passion).She will probably end up with MH issues due to her teenage years being taken away from her, losing friends, being in pain, not being believed by those who should help. So yes adults with fibro might fit a "type" as a poster said upthread, they might be overweight and they might have mental health problems and it might be all encompassing.Maybe my DDs experience can help you see why.

@ElbowsUpRising - would it be worth getting a second opinion from a different rheumatologist?

When my knee first swelled up the x-ray was found by GP to be 'normal' but I went to see an orthopaedic consultant privately (as my knee sure as hell didn't look normal as it was twice the size of the other one) and he took one look at the x-ray and said 'you have arthritis'.

Obviously my RA is quite mild compared to others, but that didn't stop days when my DH had to drive to the entrance of ASDA because I couldn't make it across the car park

Yeah, but that's my point.

"I have fibromyalgia, I can't lift this kettle, prove otherwise..."

Mine was definitely a form of autoimmune illness. I had off the charts CRP levels on blood tests, indicating inflammation, and it went into remission during pregnancy, which happens with autoimmune conditions. Still, the best doctors (only one or two of them) believed me but had no treatment, and most were outright hostile, telling me I would be 'on benefits for life and leading a very limited life' (clearly not believing me), telling me 'I'm not just going to sign you off sick for months' and giving information from the 80's ('you're weak because of deconditioning' - literally a debunked theory from 50 years ago).

They used to think cancer was all in your head, too...it's a convenient excuse. I don't know if Long Covid has changed anything but before that, ME got less annual research funding than hayfever.

LOL at talking therapy

Fibromyalgia is often seen as the new back pain. There are a lot of people who have wangled their way to a diagnosis and disability benefit who probably don't need it, but its a way of making a living without working.

I have a friend who has it and I see that it is very very real, she suffers endlessly and often without any rhyme or reason. There is no pattern, no triggers. She just gets hit with wave after wave of symptoms and its a battle for her.

I also know several people who have been diagnosed who seem to never have any symptoms but reap the benefits of DLA, carer's allowance, a car, and lots of pocket money, and go on 3 sun holidays a year.

People will always find a way to abuse the system and fibromyalgia is one of the top candidates these days. Thats why there is such a low opinion of it.

My Mum has been diagnosed with it, I’m very sceptical and have told her so many times. I think it’s a thing lazy doctors can say to get you off their hands. ‘Treatment’ seems pretty limited and they mostly just want to prescribe her painkillers. It has made no impact on her life having this diagnosis.

I don’t think it’s a real condition, there’s something else going on, but it makes some people feel better to be told they have it. The important thing is trying to find a way to make you feel better.

I disagree a diagnosis is important when those around you especially employers need to know what is going on with you. As a patient you need a diagnosis to be able to learn about your condition and connect with others for support. Especially in the long term and poorly understood, hard to diagnose and often symptoms overlapping between conditions, autoimmune conditions range of symptoms.

Several people living a great life on benefits? Pocket money, cars, paid holidays?

That's the myth.

People with fibromyalgia often have a sh*t life on benefit if are able to get one and most aren't. Often people had good jobs and income before being sick. People struggle to get any benefit or PIP. Many with fibromyalgia struggle in their jobs getting even more sick to pay their bills.

What you write is simply a unicorn. Sorry

I'm sorry sorry this thread has been high jacked OP. I can see I'm starting to get worked up and projecting so I'm stepping back. 💐

It's certainly been eye opening 🤨