Where is the weirdest place you hurt? What are your strangest symptoms?

[Jemima]

I'm afraid I'll be claustrophobic plus what if I don't like what they find? Ack. I figure if I have a diagnosis, it's downhill from there!

I think a diagnosis can be really empowering - even if it's bad news. Not knowing tend to mess with my head

In the MRI machine, pretend you're in one of those trendy Tokyo sleep pods that everyone pays so much to sleep in!

Maybe this is going to be a turning point for you with an uphill on the other side of it... I hope so

 

[DebMarPir]

Thanks so much for that Jemima. It's too bad you can't move or I could call a friend and talk the whole time on the phone and forget about it lol.

 

[DebMarPir]

Honestly, since about 2 months ago when I started really getting firm in this diagnosis, it's like my body heard the doctor and is slowly turning up all the symptoms. Today I hurt all sorts of weird places. Even my fingers are sensitive when I try to put laundry into the washer. Really? That just sounds crazy... I am wondering when all the symptoms stop turning on one by one and instead just simmer until we have a flare-up. I have this fear I may be one constant flare.

 

[Jemima]

I'm absolutely sure that your symptoms are going to calm down with time - and although I wish you weren't experiencing them, I'm not surprised you're triggered right now. Going through this diagnosis process, and all the uncertainty you're feeling at the moment, is incredibly stressful! Fear can really push the fibro buttons, which is why it becomes so important to work on self-care and self-compassion, and the idea that the symptoms of fibro aren't a threat - they suck, but they aren't a threat!

However, right now, you're not yet sure of what's going on. You can try to be as accepting as possible, but the emotions that come with uncertainty are inevitably hard to manage. So, you're going to come through this and - whatever the results might be - you're going to reach a point where you feel better in yourself and more in control, which will turn that trigger dial down. That's what I think, anyway It was definitely like that for me. Of course, if you still feel pants, we'll be here to share that with you too!

Oh, and my fingers also go sometimes - annnnnoying!

 

[DebMarPir]

I'm absolutely sure that your symptoms are going to calm down with time

Thank you for saying this. I was amazed that I had a pretty good today, the first in awhile. It make me think, wow, maybe that was a flare! Now, tonight the spasms are returning but you know, it makes me more hopeful. Thank you Jemima. I did not think of that but he fear of waiting for tests and diagnosis in incredibly stressful. And the whole time I keep wondering how much worse this will get, do I have fibro or fibro with something else, etc. I needed to hear those calming words!!

 

[Jemima]

Thank you for saying this. I was amazed that I had a pretty good today, the first in awhile. It make me think, wow, maybe that was a flare! Now, tonight the spasms are returning but you know, it makes me more hopeful. Thank you Jemima. I did not think of that but he fear of waiting for tests and diagnosis in incredibly stressful. And the whole time I keep wondering how much worse this will get, do I have fibro or fibro with something else, etc. I needed to hear those calming words!!

Glad it can help - I really think that self compassion can move mountains with this kind of stuff!

The way I try to look at it, those spasms are only visiting; the you in the middle is still you and still solid. If it's fibro, then you're going to learn to manage it better and better with time - and if there's something else going on, you can also learn to cross that bridge with an abundance of self kindness, and support from people online and/or at home. Sending loads of strength as you get through this!

 

[JayCS]

I'm afraid I'll be claustrophobic plus what if I don't like what they find? Ack. I figure if I have a diagnosis, it's downhill from there!

@Jemima has suggested reinterpreting the closed MRI has something comforting, comfortable - praps similar to weighted blankets.
Other things would be making mental images like in a dentist's chair, only you can always press the button, which you can't at the dentist's ;-)
Relaxation, autogenic training, peaceful calm, ocean waves... or if the sounds get in the way try to get yourself 'hypnotized' by them.
Or I don't know if your imagination can manage: imagine phoning your friend...? What might you tell her - something about the situation you're in or better something completely different?
Myself I am actually a bit claustrophobic too, but I only open my eyes for a second and blend what I see away. I actually love MRIs tho, because I reinterpret the sounds as electronic music - a big dancefloor. A friend and my wife do that too, altho they don't love electronic music as much as I do. I'm always surprised how quickly I'm thru (I need to check a spinal tumour once a year.)

Downhill? Echoing @Jemima: Depends how you use it, I'd suggest. If you think it'll go downhill, then it's unlikely you'll go uphill. ;-)
Normally a diagnosis does help see a direction for improving our condition whilst before we hang around aimless- and cluelessly...
A diagnosis can become a good information/tool. Not the best choice, but better than downhill is to make ourselves independent of it.
I "carry" the tumour like a duelling scar, or rather I ignore it pretty completely, altho many think I shd be peeing my pants, altho it's prolly harmless...

 

[Korki]

I think my weirdest symptom is it feels like bugs are biting me randomly
Or when my insides feel like there's something moving around inside me

 

[Jemima]

Or when my insides feel like there's something moving around inside me

That must have been something crazy to get used to feeling I find myself thinking sometimes that if someone else suddenly felt what I do in that moment they'd probably leap of their chair in panic or think they were dying but we're so resilient. We adapt

 

[Korki]

I've thought the same thing If people suddenly felt what we'd felt, they'd probably go nuts within seconds

 

[DebMarPir]

Thank you for trying to help. I’m not sure about weighted blankets, lol. I barely use any blanket since my temperature changed about a decade ago. I thought all this time it was menopause. That was likely the initial issue but now I am thinking that is a sign of fibromyalgia. The open MRI that I used to go to fine allowed you to have headphones where you could listen to music. I am going to call to see what the options are at this one. At the least maybe I can take something. I don’t think I can manage it otherwise. I did think of the phone-a-friend option! It’s too bad one can’t phone for real, or I would be fine! Ha!

 

[JayCS]

I’m not sure about weighted blankets, lol. I barely use any blanket since my temperature changed

Oh, in that case, I'd be pretty sure! Trying to fake some with additional blankets was a weight, but also heat problem for me. Having said that, new member Susan (@Svidaurre) a month ago (hasn't been on since, tho) brought up something I hadn't heard of before here: a weighted cooling blanket. (Must be something good about me going thru all new posts in stints... *sigh*)

 

[sunkacola]

I'm still not 100% diagnosed as fibro, but I can say that my pain and soreness are none of them normal feeling. The only thing I can compare it to is the feeling I had when I had endometriosis. The pain I felt was different, not normal. Pain has a feel to it, and menstrual pain and different feel, and sore muscles after exercise another feel and so on. Well, this is a bizarre feel in the sense of endo, where I don't recognize my body. I am still tryint to make sense - is this arthritis? Is it fibro? Why do I hurt here? Is it even supposed to make sense? I am struggling because I have no idea and in two weeks I have an MRI of my brain/upper spine. Kind of dreading it. I always used an open MRI and now they are discontinued here and I'm afraid I'll be claustrophobic plus what if I don't like what they find? Ack. I figure if I have a diagnosis, it's downhill from there!

I want to encourage you strongly not to be afraid, and not to think that anything - no matter what it is - means "it's all downhill from here". It doesn't. That is almost never the case, unless you have a terminal degenerative disease that is progressing rapidly and I bet you don't have that. And it most certainly is not the case if what you have is fibromyalgia!

I run a mantra in my head when I get an MRI because I Hate getting an MRI. Or, run songs from an album you love through your head and concentrate on hearing all the notes, and pretend you are singing the lead. Really work on it, and it makes it go so much faster. Whatever you do, don't think about where you are and what is happening.

The other thing you say is "what if I don't like what they find?" This is a valid thought. You may not like what they find, and this is a fact. But keep in mind that no matter what, it is always better to know the truth of a situation so that you can empower yourself to deal with it as effectively as you can. Not knowing is always far more stressful than being able to day, "OK, this is what it is. Now I can research this and find out all about it and do what can be done about it".

As for making sense.........fagettaboutit! If you have fibromyalgia it won't make sense a good deal of the time, and that's just how it is. If you are like me, you get used to not knowing everything about it, but at the same time you will want to do whatever you can. So, without being obsessed about it I keenly observe what is going on so that I can find triggers, and solutions, and better ways of doing/handling things. You will too. And this is a great little "community" that is here to help.
Take heart, you will be OK.

 

[Svidaurre]

Sorry I haven't been on lately. I have an allergy to cold break out in serious hives but this blanket is just enough to help.

 

[Jemima]

Sorry I haven't been on lately. I have an allergy to cold break out in serious hives but this blanket is just enough to help.

Welcome back Svidaurre. Hope you feel better soon