Feel like an imposter

[FracturedRain]

Hi all, I was diagnosed today. After about 20 years of exhaustion and many other symptoms, finally I saw a rheumatologist and she confirmed that, along with my hypermobility, that I have fibromyalgia. I should be pleased that finally there's a reason...but I'm not. I feel like I'm making it up. I've read so much today and I don't have as much chronic pain as most other people do, I feel like maybe they've been right all along and it's all in my head after all. Has anyone else felt this?

 

[sweetkamie20]

I totally do, too! It's this weird dynamic where because I'm not bedridden or totally debilitated I feel like my health is insufficient reason to live on different terms than normal. I just wrote about this. I feel guilty because when I am home I find a way to sort of do normal things but I groan thinking about a social event. They just tax me more than being alone. When I say I don't feel well enough to do some normal things, but then can do other normal things alone, I can't help but think others think I am being deceitful. And then I question whether I am deceiving myself (until my symptoms return soon after lol)

 

[fimi]

Hi @FracturedRain and @sweetkamie20, I went through the same emotions a long time ago. Although Fibro may sometimes be invisible to others, it's not imaginary, we have to live with it every day. The key is to try and change your mind set, think about how strong you are to get through each day with all your symptoms. It's not easy and the worry monster will always be lurking about somewhere to make us doubt something! But you should be proud of yourselves for facing each day head on. I found out quickly that the only person I was deceiving was myself, for not putting all that precious energy I used worrying into more beneficial self care.

 

[FracturedRain]

I think you're right, especially about the self care, I'm a working single mum and definitely don't do much of that. I think I feel that way because I've spent so long trying to ignore the symptoms day to day, I don't actually recognise my baseline normal as being anything but feeling pain/tired etc. I didn't realise how much energy I expend being "fine". Probably because no-one has ever told me till now that it was an actual thing with an actual reason.

 

[JayCS]

Hi FracturedRain & welcome:
Unique & deeply intriguing name! Rain breaking up light into rainbow colours. Breaking up.... Pain & beauty...

Well, some fibromites have the feeling they want to call fibro an "impostor syndrome", maybe because they are feeling like you are, maybe because they are feeling that others see us as impostors - which is the devilish thing about this askew sense of self.
Impostor syndrome actually means people doubting their actual skills, talents etc.

As our pain is similarly invisible, not "provable", the diagnosis relies mainly on our self report. So we have to believe ourselves.
The docs are nowadays recommended and urged by pain researchers to "believe" that we are in pain. Because it is very rare that people pretend, much rarer than people underrating themselves.

A meme might help to express this feeling, attached. (I unfortunately don't need it often any more.)

But also one of the sets of fibro criteria, so we can go thru the motions of the self-diagnosis again and again, also attached.

I've now re-sorted the way I describe my day on my JayCS's fibro blog using these ACR 2016 criteria. Helps me see where I stand.

This is one part of the development of my symptom description. It started with trying to put across to my colleagues what perspective I have for working. It was sort of putting Christine Miserandino's "Spoon Theory" into more scaleable terms.
She starts off with let's say 10 spoons a day. In comparison I used to have 100 spoons a day, pre-fibro, seemingly endless.
Fibro and most doc treatments brought these down down to 10 a day. Better methods slowly brought that up to about 35.
That meant that I can manage about 3,5 hours of activity per day, as opposed to 10 hours pre-fibro. (I put it as 35%)

MCAS took me down to 10% again, many more supps etc. took the many side symptoms down, but not the fatigue.
Chinese acupuncture is now helping to get the fatigue down, energy up to 20-30%, hopefully increasing...
However it's more complicated, I've found recently. I realized I no longer have energy boosts, like pre-MCAS, where I had 100% of my pre-fibro energy for a short time, sometimes minutes, sometimes hours.
So I've started to distinguish that now I usually only have about 70-80% of my previous energy for 20-30% of the previous time.
The rest (70-80%) of the time my energy is at maybe about 20-50%??, hard to measure as essentially I need to rest, which means nothing else than sitting on my carpet leant against my couch, alone, however with my laptop - typing and reading is no problem, as long as I can pace it myself.
So what does that all mean? Essentially only this detailed spoon / energy count can clarify that at the moment I'm nowhere near being able to work again realistically. My subjective feeling and hope always tells me: . These numbers tell me: No chance.

I'm lucky to have a wife at my side who sees my pain better than I do. She isn't so lucky, for her it'd be better not to see it so much.

 

[fimi]

I think you're right, especially about the self care, I'm a working single mum and definitely don't do much of that.

It's unfortumate but true that self care will often come bottom of the list because our lives demand so much from us. But if there was ever a time to indulge in self care, it's now. The diagnosis has told you what you're dealing with, but only you can find a way to get through and help your body. It's a long road, but there are so many things to try! (in baby steps...). We are all going / been through the same things on here and the support really helps. I learn stuff from this site all the time...
One thing I would suggest, is to surround yourself with good people who care about you, and ask for help when you need it. It really can make all the difference.