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

[Badger]

When I sneeze I get shooting pains down both arms with a tight band around my chest. Started a few years ago, wondered if it was related to a neck injury ten years ago. A spinal unit checked me and put it down to Fibro

 

[JayCS]

feel the hair resting on my arms, and sometimes I can feel the air moving it

Could that be termed allodynia d'you think?

 

[MsRant]

Could that be termed allodynia d'you think?

Does it matter what it is called?? lol I mean, it's just another facet of dealing with fibro for me, so what it is called isn't something I think about. It's just another, yep, that's part of my fibro...

however, yes, if you prefer technical, I think it would fall there. edit...maybe not, because from what I was just reading, Allodynia needs some sort of stimulus, like a touch/movement/etc. Mine does not necessarily need that? thoughts?

 

[JayCS]

Does it matter what it is called?? lol I mean, it's just another facet of dealing with fibro for me, so what it is called isn't something I think about. It's just another, yep, that's part of my fibro...

however, yes, if you prefer technical, I think it would fall there. edit...maybe not, because from what I was just reading, Allodynia needs some sort of stimulus, like a touch/movement/etc. Mine does not necessarily need that? thoughts?

Oh I thoroughly agree & disagree : Technical terms are shortcuts that
a) help pinpoint & track symptoms, to prevent &/or alleviate them, or understand one symptom in the context of others.
b) to quicker see which conditions they are associated with, e.g. fibro or others, to communicate about ideas for a) faster. Other than that it is completely irrelevant to me whether something is fibro or anything else.
I've seen allodynia more associated with fibro than just feeling the hair, so fibromites might theoretically be able to help more than if not.
And if it were allodynia it might be easier to find a remedy just by looking for other people's experiences on websites & esp. forum archives where you might find exactly this (quick search turned up nothing...).
I'd think yours like allodynia a case of high sensitivity to touch, in this case the touch of your hair on your skin, or air on your hair. However allodynia would mean pain - how painful is it to you? I also see a similarity to me getting sore throats and general Ache from wind and draught/draft for longer than a few minutes. Comparing for remedies for allodynia I'd think physiotherapy types of desensitization (via pressure??) might be something to think about.... In my case I need to prevent the wind getting at me with clothing, incl. a bandana around my forehead, but also avoiding it as far as possible. In your case I wd not consider shaving yourself all over

 

[SugarcreekMama]

hair pain. I feel so crazy, but yes, like...I can feel the hair resting on my arms, and sometimes I can feel the air moving it, and thats insane, cause you cant feel that right? but I do...sometimes I hate feeling.

I get this! Especially when I'm cold. The winters where I live are super cold. Goose bumps hurt me so much. The little hairs feel like little electrical stabs all over my arms and legs. I can't stand being touched by anyone or anything because of the pain and nausea. I now make sure there is no hair on my arms and legs. I also make sure to rub in a thick lotion so the skin won't dry out...which also hurts.

 

[JayCS]

I now make sure there is no hair on my arms and legs.

Whoops: OK, I stand corrected:

In your case I wd not consider shaving yourself all over

I would consider it...

 

[User Requested Deletion 36696]

My strangest place is my teeth

+1 it drives me insane. It's like i've eaten a sugary treat & not bothered to clean my gnashers after.

 

[MsRant]

LOL!! ok Jay...help me out on this one maybe?

for the record, I don't like getting into what each issues I consider part of my "fibro" because the list is too long, and it gets overwhelming to me, but I do see your point is figuring out what it actually is to help with alleviating it. I've just been like this for so many years now, giving names to it all gets a bit depressing, and doesn't help me be very positive. And really, from what I was reading, it's mostly us folks with fibro what deal with Allodynia...but hey, I like new words

now, anyway, Im sure there some kind of name for it, so help me out! Does anyone else...feel gravity? I feel so psycho for saying that, but I do. Yes, I do believe it is weather related, I do know how much weather affects me. It is like I am being pulled down to the lowest point I can get to, like the air is physically heavy, bed isnt good enough, I need the floor, or the basement. Not sure how else to describe it. lol

Regarding teeth yes, and like many fibro folks, I too have now dealt with receeding gumline, and am about out of teeth(two left), now just have ghost pain. But, dentures are next month, and I am excited!!

 

[Jemima]

It is like I am being pulled down to the lowest point I can get to, like the air is physically heavy, bed isnt good enough, I need the floor, or the basement. Not sure how else to describe it.

Friends of mine with CFS have sometimes described their fatigue as exactly like this. I don't think you're psycho at all - that's a very articulate way of explaining it!

But, dentures are next month, and I am excited!!

Congrats - that is exciting indeed!

 

[MsRant]

that's a very articulate way of explaining it!

Thank you. Geez, I want to cry just seeing someone say that. So many times I feel like trying to explain things to the doc or other people, the way they look at me, I feel like I am speaking another language, or the white coats will be coming in to take me away. But it's real, and it's how it feels.

 

[Jemima]

Thank you. Geez, I want to cry just seeing someone say that. So many times I feel like trying to explain things to the doc or other people, the way they look at me, I feel like I am speaking another language, or the white coats will be coming in to take me away. But it's real, and it's how it feels.

You're so right, and it's a horrible feeling when that happens, but putting this stuff into words is really hard! I make notes before I go to an appointment, to try to figure out how to express what I need to as best I can - and then to make sure I actually spit it out and don't just go like a rabbit in the headlights in front of the doctor. That's a whole other stumbling block

Have faith in your experiences and what you're trying to say. The communication challenge doesn't reflect on you!

 

[JayCS]

for the record, I don't like getting into what each issues I consider part of my "fibro"

- well, as long as you're here, you're so never needing that again.
There were times where I'd thought about dabbling in other realms, like a Sjögren forum,
but I think to focus on priorities it's good to keep to our best bet until we've gotten well under way.
I've pretty much ignored CFS all along, cos I have energy, but now I've got most things sorted out, incl. much improved sleep, and the Ache & exhaustibility is still there, I've decided to try the CFS-type supps like serrapeptase, D-ribose, NADH/+, pretty much the end of my list (but that's a running gag..)

Does anyone else...feel gravity? I feel so psycho for saying that, but I do. Yes, I do believe it is weather related, I do know how much weather affects me. It is like I am being pulled down to the lowest point I can get to, like the air is physically heavy, bed isnt good enough, I need the floor, or the basement. Not sure how else to describe it. lol

with CFS

Ah, speaking of the devil... ah, no, not really.... (but I do actually prefer more pain with more energy to less pain with less energy... - ay, @GrumpyGit ;-).) - but whoops, we're flirtin' with di... agnoses again, sorry... ;-)
Sounds a bit like me on some days (before GABA) looking at the first 2 steps of a staircase and thinking: Well, we have a bit of time to get to know each other before I have to move on...
That'd be something I call "heaviness" in my limbs - legs and arms - and put it on the bill of fatigue (I've distinguished 11 or so types of what I'd "fatigue"). And if I'd have it most of the time, it'd be chronic, so I might be looking at ... ah, enough, enough...

 

[SH3]

At the moment my weirdest pain is the bottom of my feet, they have been cramped up for days. I also get weird skin pain, like I rubbed up against fiberglass...usually on my ribs, forearms and forehead..oh and I cant forget the bone pain in my ankles and wrist....I think I will stop here because I could go on and on lol

 

[JayCS]

like I rubbed up against fiberglass

yikes!

 

[DebMarPir]

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!