I'm still trying to figure it out and i need some help

[jasper_b]

liaa, there's a lot there I can recognize in my own fibro and a lot that differs. but as others have very astutely pointed out, fibromyalgia has many faces and symptoms. it's a poorly understood, fickle beast. with what you're experiencing, and every test coming up red but the test for lupus off and on, my money would be on fibro. research has been showing fibromyalgia is probably autoimmune, like lupus. though don't expect many doctors to be up to date on fibromyalgia - or even know what the word means. I don't know what exact tests got you varying results, but I have a positive ANA, which is generally a marker for an autoimmune disorder. there's also been findings most people with fibro test positive for small fiber neuropathy, which I've been trying to get done, but getting to a neurologist is proving difficult. if you're looking for a bit more exploratory documentation, I'd recommend that as a next step.

I'm also anemic, which can make symptoms that much worse. definitely try to manage your iron levels - I'd say get iron supplements. and here's something I only learned recently even though I've been on iron supplements for years - don't have any coffee, dairy, or eggs within two hours of taking your supplements - before or after. all those foods majorly interrupt your body's ability to absorb iron, which apparently HATES breakfast.

the weather definitely affects my symptoms as well. my body reacts a lot to changes in temperature and humidity.

please don't feel guilty. modern medicine is not perfect, and you are not wrong for listening to your body in a way that doctors can't or won't. if you are experiencing it, you are not lying. that's the end all, be all.

 

[sunkacola]

research has been showing fibromyalgia is probably autoimmune,

There's also research showing that fibro is neurological, and other things. Nothing is conclusive as yet. Other things, including autoimmune disorders, often come along with fibro, which makes it harder to pinpoint the exact nature of fibro.

you are not wrong for listening to your body in a way that doctors can't or won't. if you are experiencing it, you are not lying. that's the end all, be all.

Hear, hear!!

 

[BlueBells]

Hi @liaa
Did you have a go at the test on here? It might make you feel relieved/validated and that does help, well, it has helped me.

Seems the people here are very supportive, willing to share and offer the knowledge they have gained. That's the thing I am finding, we are all learning bits and pieces, because everyone is that little different. We never know when something we come across may be helpful to others, even though it may not have been of much use to us.

Hang in there, and please let us know how you are going.

Hugs

 

[Not2Jaded]

Saw you over on other site. Joined here with different name. Still looking. Pretty sure I have had fibro for decades. Wish it was an Australia based site. cheers Apple

 

[Auriel]

@Not2Jaded why are you sad we're not Australian? (I think there are 4 Aussies on this at the moment) who is apple? (Was that your 1st name?) We all blend , all from different countries (and some the same) can't you like us even if we're not from Oz?
️️

 

[BlueBells]

Saw you over on other site. Joined here with different name. Still looking. Pretty sure I have had fibro for decades. Wish it was an Australia based site. cheers Apple

Hi there !!!! You're another Aussie??

I've found it doesn't matter, in fact, to find people have the same issues all over the world I find , sort of reassuring in some weird way.

I have regular energy drops at around 11am to 2pm, and again around 4pm to 5pm. That is, it drifts somewhere in those time slots, and no, not related to eating , like how some people get drowsy after a meal.

I was surprised to find someone on the other side of the world, crashing at about the same times! Maybe it's something to do with the sun position? Still figuring out things.

anyway, welcome! Lovely to see another Aussie

Oh, (edit) do run through the test on here. I quite surprised myself. I was feeling okay, and got a set of scores, then did it like I was having a bad run, and I was floored by the results!

 

[Kelly Anne]

This statement is over simplified but isn't the main similarity a heightened response to pain and that could be anywhere from your head to your toe and also at a different pain level that could change in an instant.

 

[BlueBells]

This statement is over simplified but isn't the main similarity a heightened response to pain and that could be anywhere from your head to your toe and also at a different pain level that could change in an instant.

Hi @Kelly Anne

Very over simplified. To what are you referring please?

Are you figuring pain and energy flag are the same thing? Maybe they are related, but what is your reasoning on this?

Explanations help everyone to learn.

 

[BlueBells]

Saw you over on other site. Joined here with different name. Still looking. Pretty sure I have had fibro for decades. Wish it was an Australia based site. cheers Apple

Hi @Not2Jaded

Are you blossom? This is a great site. The name half triggered when I replied before, but my head has been sideways for a while, coming out of that cloud now, thank goodness.

Welcome

 

[Not2Jaded]

Dont worry, we know each other from another site. Its great we all can blend. Often Aussies get overwhelmed by American or British culture. My background is hybrid anyway, so learning about my Aussie side has been a thing for me.

 

[Not2Jaded]

hey Bluebells Do you need to upgrade to do the test?

 

[JayCS]

hey Bluebells Do you need to upgrade to do the test?

No, it's separate, but you need to give "them" ("us") an @ddress the result is mailed to. It's here. However the test is not quite "right", it's a fun way of doing the (much easier) correct, official etc. 2016 ACR fibromyalgia checklist here, which I prefer.

 

[BlueBells]

hey Bluebells Do you need to upgrade to do the test?

Hi @Not2Jaded Thank goodness no, as I haven't yet been able to.

@JayCS and @sunkacola are very helpful, they can offer heaps of advice. Sunkacola has a suggestion thread, I cannot remember the name, though.

I did the test, first when I was feeling good, then I did it as though I was on a bad day, the difference was quite amazing!!

 

[sunkacola]

Sunkacola has a suggestion thread, I cannot remember the name, though.

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

 

[DawnC]

I think there may be a link between your health anxiety, staying in bed and what you’re experiencing. Sadly, Fibro is a process of elimination with many doctors. I would start with some therapy for both body and mind.