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?

I wondered where all their posts had gone 👀

@FishFlaked for some context, my words come from the experience of my late DH, who died of a rare disease. He, like most people with rare diseases, went many years without diagnosis. 1 in 17 people has a rare disease, so it's not uncommon, and the average diagnostic gap is 5 years - for DH it was twice that. Those ten years were the fittest and healthiest of his short life and we wasted them, frankly, waiting for doctors to tell us what we could plainly see.

My focus here is on the OP right now. If you place the requirement for diagnosis on her before she is permitted to take action in her life, you may condemn her, unwittingly, to a terrible waiting game. Secondly, if you create the idea that diagnosis is some kind of magic legitimacy for your own experience and hand that power to disinterested others, you can create the sort of turbulent fragility you have seen on this thread.

It's tough to be ill, and it's especially tough in times like these (we went through the last skivers and scroungers witch hunt, in the crash). OP, focus on the life you are living and make it a little better, every day. Pursue whatever healthcare you can, but don't give them so much power over your life that you think the pain in your own leg is subject to the opinions or decisions of others.

You know, I sort of wish I’d never asked the question.

I keep bursting into tears reading some of these replies. I don’t think I’ve ever felt so lonely in trying to understand my own body.

OP hang in there

I was wondering how you’re faring in all the chaos of this thread.

Sending you a big hug. Your struggles are real and valid. You’ll go through a whole process of grief and I can see why this thread will be making you feel worse. The best advice I can give you is gravitate towards the love and support and ignore the ignorance (both online and in your real life). People don’t understand, and you’ll waste your precious energy trying to get them to. Keep that energy for what’s important to you.

Sending you the gentlest of hugs.

Thanks for your post Mellap I am very sorry to hear that of your DH. I don’t disagree with anything you say.

Please don't feel like you're on your own 🌷🌷🌷

@Hellovation I haven’t RTFT. I’ve read parts of it. I struggle with reading large amounts or for any length of time thanks to CFS. I’ve had CFS/FM for nearly 25 years. It’s real, it’s shit, and it’s not depression. I know depression. Had that before CFS. Still have it. Quite frankly I challenge anyone to have CFS/FM and not get depressed to some degree. CFS/FM definitely seems to be some sort of autoimmune condition. I have other autoimmune health things like coeliac disease. Please don’t take a lot of this thread to heart. What help and support do you need? Maybe start a thread in a health section if you’re looking for support and you can get away from any judginess and ignorance from this thread.

Don’t be so disingenuous. The whole point of both your posts was to reiterate YET AGAIN how people on disability benefits have a marvellous time with their nails and their holidays and their free cars.

So focus on the posts from those of us that do understand. A lot of us on this thread have been where you are and are giving a lot of personal info away in order to support you.

Don't feel bad. A lot of us understand you 100%. It's a rough ride.

I agree. I had PND twice before ever being diagnosed and I know what that feels like. I said to the consultant at the ME clinic that when you have depression, you often feel you don’t want to do anything but your body, if your mind agreed, would still work. With ME and Fibro I want to do so, so much but my body physically won’t let me.

@Hellovation I’m so sorry you’re feeling the way you do. I won’t lie, it is shit at times and not just because of the pain and symptoms. The fact that your life potentially isn’t going to be how you envisaged it can really affect you. That said, there is support from people who get it. There is the possibility of good times in between flares and sometimes these can last a decent while. And you will have happy times as well. 💜

It absolutely wasn't. My point in my first post was that people abuse the system, and always have, and lots of people use fibromyalgia.

I have stated both times that i know that it is a cruel and relentless condition

You just want someone to bash up there on your high horse.

I provided context that you chose to ignore with your pitchfork held up high

I must admit that this don’t understand my body. I was in so much pain for the first couple of hours this morning but got on with
cleaning the kitchen and doing some gardening- being busy took my mind off the pains d I actually feel much better now.

These are YOUR WORDS from two separate posts. Stop fucking gaslighting me.

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.

I know of at least 5 people in my local area who are on full disability for fibromyalgia. One of them is in her early 40s, her husband is her carer. She has never worked a day in her life and neither has he, she has all the new mod cons, new phones, nice clothes, lashes and nails done every 2 weeks. She goes abroad 3 times a year. She is well enough to be drinking in the pub every weekend and butlins weekenders 2-3 times a year. Is she sick? Is she bollocks.
I know several more like her as well.

also my words from two separate posts. Again you are taking it all out of context and doing a daily mail style article to suit your narrative

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.

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.

I said that Fibro gets a rough ride because so many people fake it and use it as a way to make a free living, however I have a friend who does suffer with it and she suffers badly. Her life is constantly affected and I completely believe that Fibromyalgia is real and can be debilitating.

I said I think low opinion of it comes from those using it to get a free ride

So have you reported her for fraud?

@JanglingJack MS.

I’m not sure if PMs are still a thing but if they are, feel free to message me. You are not alone and it’s really scary at the beginning of the journey. The symptoms don’t necessarily get easier but you can get better at managing the symptoms by listening to your body. You’ve got this 🌷 xx

Fibromyalgia is automatic entitlement to PIP. Unless the government now has plans to change this.

You must have been living under a rock to not know anybody with it!!

Very common to lesser or greater extent.

Please note PIP is an in work benefit so it does not now mean your life is over.

Look up strategies on how to cope with it. Tai chi regular massage by a professional there are other strategies cannot recall them though. You tube and google will assist. Good luck.

Fibromyalgia is automatic entitlement to PIP. Unless the government now has plans to change this.

No, it isn't.

I think the government likes to deter claimants but I am sure I read you wd win any appeal.

People win their appeals because they shouldn't have been turned down in the first place.

So sorry this has gone like this OP. I said on another thread that many years ago I worked for King’s and worked on a pain perception in RA research project where a few of the rheumatologists were collaborating so I worked with a few (psychology background). One of them said that Fibromyalgia was the term they used when they didn’t know what was wrong.

Over 20 years later and I am back in a rheumatology department but in the patient’s chair with a diagnosis of psoriatic arthritis. My rheumatologist mentioned fibromyalgia and I didn’t mean to but must have pulled a face. He saw and said he knew what I was thinking but there had been recent research that was shedding light on it.

To those of you struggling with raised inflammatory markers I am so sorry. I have been there and had to see 2 rheumatologists privately to get diagnosed with PsA as the first ignored an MRI report on my sacroiliac joint. My GP at the time said I didn’t fit the criteria for an NHS rheumatology referral.

The missing piece of info for me was a strong family history of psoriasis I was unaware of until my Dad was diagnosed with it a few months before he died. At that point things fell into place, about the same time that 20 years of it was starting to erode my joints.

I am thankfully on a disease modifying medication now but it isn’t straight forward to get the right one unfortunately. Current hospital is great and I called 8.30 this morning as am flaring and had a call back less than 2 hours later, a plan to get me through the next couple of weeks so I can hopefully get through a couple of days away and then I am back in for a medication review as what I am on doesn’t have it as under control as it could be and I am having further joint damage.