unimpressed

[Grumpy me]

it took my Dr 23 years to get me a diagnosis. But first I had to go through the mental health road. 18 months later, cleared of mental illness. I went back to the docs and asked if he could send me to a rheumatologist. why do you want to see one of them he asked. I replied they are the only Doctors who can tell me if I have fibromyalgia. I don't believe in that, he said. yes, I know it's only taken me 23 years to find myself, who I need to see.
Nothing works to make me feel better, I either sleep 16 hours a day or can't sleep at all for days. now I have another PIP assessment, stress makes this condition worse. so why do they always cancel my claim, forcing me to take them to court to get it reinstated?
Is there anyone who is as angry and grumpy as me??

 

[sunkacola]

Yep. Grumpy and angry could be my middle name some days! !
For one thing, being in pain all the time can tend to make a person grumpy.
And being frustrated with trying to get medical assistance can make a person legitimately angry. So you are by no means alone.

Just for the record, a rheumatologist is not the only doctor who can diagnose fibromyalgia, although that is commonly who does so. (At least, in the USA....I don't know where you are, so maybe it's different there).
I was diagnosed by a pain specialist; even a general practitioner can diagnose fibro if they know what they are doing. The main diagnostic tool is simply doing enough tests for all the things that could be causing the symptoms that other possible syndromes or illnesses can be eliminated.
Have you been tested for all of those?

If the doctor you are seeing "doesn't believe" in fibromyalgia, you absolutely need a different doctor. Do some online research and find a doctor in your area who works with fibro patients, who will believe you when you tell them what is going on for you, and who knows to get you tested for all of the things that need to be eliminated.

I actually don't know what PIP is. But if it's something run by a government agency then they are not cancelling your claim or doing anything else like that as a personal attack. They just do what they do, and often barely even recognize that there are actual individual human beings involved, whose lives they are affecting. It's infuriating, but if you allow it to affect you strongly you are only hurting yourself. Of course, that doesn't mean it's easy just to turn those feelings off. But I urge you to find something that will help. Music, meditation, petting an animal, marijuana, watching a film, pounding a pillow, whatever you can to to ease that stress. I use all of those things, myself.

It's a real challenge to live with this. We are here to support you and to help if we can, and to let you know that you are not alone and there are people who understand. I hope this forum can help you in some way.

I wrote a post of suggestions that might be useful to you.

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

 

[BlueBells]

Hi @Grumpy me

Yep, I agree with @sunkacola . Many on here get very grumpy, but we all "get that", so you are in good company

I've known there is 'something not right' since I was in my teens. A friend suggested getting checked for fibro in 2019, I'd never heard of it. Eventually, yep, met the criteria for the doc to agree, but I already ticked so many boxes, I figured that is what I have, and probably had it since childhood. I'm in my 60's.

I am one of the fortunate ones that doesn't have the pain, but wonder sometimes if I do, and the brain doesn't register it as such.

Browse around the Forums, there is so much to learn and contribute to on here. Welcome

oh, to reply to a particular person, put the @ symbol in front of their name, as you can see I have done

 

[Grumpy me]

@BlueBells hi I'm in England UK. I'm 60 this year, came on here as UK sites seem to be a little stuffy. I meet up at a fibromyalgia drop in last year. I was more depressed when I got home than before I went.
I don't mind being grumpy or in pain, what gets me is this country is still so closed off. I can't say how I feel or how I hurt today because we are supposed to do it silently, getting help is hard here I find.

 

[BlueBells]

@Grumpy me

I can't say how I feel or how I hurt today because we are supposed to do it silently, getting help is hard here I find.

Oh my goodness, that is so cruel to be made feel like that !!!

Please feel very welcome here !! There is even a forum called : Moan, complain and vent.

We are 'real people', not the ones who think they know and tell us how to feel, think etc. We know what it is like to be "dragonised by the fibro gremlins" in all their intricate forms.

Please browse the forums, and feel free to comment, as joining in is how we learn and support each other. I have found the main thing being here is 'people get it', and people without fibro just don't. I'm noticing some of the anger and depression is subsiding, simply by being in touch with people who accept us all, as we are, fibro and all

 

[Grumpy me]

@BlueBells, thank you it has been hard and stressful, if I cry I'm sent to mental health - mostly thanks to prince's William and Harry. It hasn't worked for Harry, you can all see how the UK take the pain and keep poking it.
I just need as you say understanding of fibro. I have also been told that it gets better. Anyone who gets better from fibro never had it in to begin with.
Look at long covid, all the investigations into making you better. That's only because of the amount of doctors who have it. If I could give Dr's fibro I feel there would be better investigation and understanding.

 

[BlueBells]

@Grumpy me

I know people have recovery from polymyalgia, although it can take years, but with fibro, I'm thinking it's more people learn to manage it, to live with it. One member said they are learning to dance with it. I like that.

I think USA is leading with taking it seriously, although here in Australia, it is recognised , just still not really understood though.

 

[Grumpy me]

How I want to get over this.

 

[BlueBells]

@Grumpy me

Have you checked out the forum link that @sunkacola left for you?

You will find heaps of support here, browse around and find the threads that have familiar names, and you will find it helps to know others really do understand what you are dealing with, and it is the "been there, done that, doing that" type of understanding.

I've found that understanding it and accepting it, that's a lot of the battle to living with it. Sort of gives one a bit of grounding, as it were.

 

[Grumpy me]

Thanks I will have ago but still finding navigating this site hard. Brain fog oops

 

[BlueBells]

Thanks I will have ago but still finding navigating this site hard. Brain fog oops

@Grumpy me

Oh yeah, the fog hahahaha ! It can be fun, hey? At least I know now why at times I literally cannot add 2 plus 2 ! Really fun when one's main job involves bookwork

I'm off to bed, getting late. Take care and enjoy the company on here. Remember there are times it can be quiet here, but don't feel ignored, it just happens that sometimes no-one much is online, and we are all over the world, too.

It's 1:12 am here, Tuesday, and I'm tired. Good night all.

 

[sunkacola]

I have also been told that it gets better. Anyone who gets better from fibro never had it in to begin with.

Well.........not necessarily true. While fibromyalgia cannot be cured, at least not so far, it can be managed in a way that makes it less painful, and makes the flares less frequent. So in that sense it can definitely get better.

How I want to get over this.

My experience has taught me that wanting to get cured, or over this, is probably not helpful because that is not as likely to happen as simply getting better at managing it to the point that it is better.

If you read the post that I linked to above, "My advice for managing fibromyalgia", you will find a lot of suggestions to get you started.

The hard part is that you have to do it yourself, just when you are feeling so bad that you don't want to do anything. But, trust me, if you really dedicate yourself to the exploration you will find out what makes things worse and what makes things better. Once you have that knowledge you have some power and some control in the situation, and even a small amount of control is hugely better than feeling powerless. You can make a big difference in how your daily life goes.

I know this because years ago I was in the powerless position, and taking addictive medication daily, and felt as if my life was just about over. But I remembered that knowledge is power, and decided to educate myself about this thing. I started reading a lot of articles, but quickly found out that no one can tell me what will help ME, only what helped THEM. I couldn't just do what someone else did and get better. So I took all the info I had and used it to do my own experimentation, and in that process I found out what helped ME. You can do the same. It takes time and it takes energy you don't think you have, but you can do it.

Read the post and start trying some things. And come here for support and answers to questions. We will be with you every step of the way.

 

[Auriel]

I'm grumpy "FOR" you (and yes I get grumpy=seriously depressed sometimes) I've experienced a few times a confusing/gaslighting/nonchalant attitude from the medical professionals and I honestly have no idea why they behave the way they do sometimes, I used to assume drs did everything they could to help patients (especially when patients say what they feel could be wrong and know what they need for tests) glad you finally got diagnosed a Dr that doesn't believe in fibromyalgia should be changed asap, (if you can) fibromyalgia is a known medical condition (it's not like it's Santa or the Easter bunny right?) Pip doesn't want to give people money simple as, But yes as bluebells said (and I HAD to do myself years ago after a fair few frustration fits was) just try + accept fibro for what it is?

 

[Klickkat]

Oh yes, I decided to decline opioid therapy after they moved 45 min. out of town (I had to borrow my sister's car to get there)...told them I will try ablation in May when can afford Co pays again...Anyway I asked my primary PA to write Cymbalta which was leaving me in groggy fogginess up until Friday nite after taking for 1 week. Trouble is, now I cannot sleep but maybe 2 or 3 hrs a nite. So I called them there 2 days before the weekend...no return call. So I start back 1st thing Fri morn, then at 130, 330, 415. Nobody's calling back to help w/severe insomnia and I am SUFFERING! After 5 phone calls! I am pretty annoyed and sleep deprived. Starts over Mon. tomorrow.

 

[Klickkat]

PS my apologies if I posted to wrong person, I am spent tonight.