Bastard Fibromyalgia - 2 serious questions - Please reply if you can

[PeaPodPopper]

I've had fibro' for almost 2 decades. In that time I've experienced all the usual 'symptoms' that are said to be a part of it.

However, I have 2 'happenings' that other fibro fed-ups I know haven't experienced, and I wonder if anyone if with Fibro' in the wider world has done so, or is it just me, and these 'happenings' have not yet been discovered within anyone else with Fibro, or are simply totally unrelated to this rotten condition.

Happening1 - When walking upstairs I can manage a usual house-style flight, but anymore than that - say in a store - and I gradually lose all sensation in my legs to the point I can't move them anymore. I have to stand and wait for a few seconds before all feeling returns, then I can carry on as normal. (The doc just shrugged when asked about this!)

Happening 2 ( I've just had an attack of this - which has prompted my posting, whilst fresh in my mind).
A sharp pain that 'blooms' and slides across either my back or chest, or both at same time. Extreme Pain often extends to the back of my head, my neck, throat and even ear lobes. attack can last seconds or many minute - this one around 15 mins.
Either laying down or walking around whilst moving arms seems to calm it down.
There is no rhythm to attacks. last year I had a cluster over a few months, then none since until today.
This is not related to my heart as has been checked out with usual tests...... BUT IT BLOODY HURTS!

Bumping for you.

Thank you, 'thecat'.

Bumping

THE sharp pain in chest/back is how my fibro first presented itself. I still get it on my really bad days.

I’ve had a similar things in my legs, but instead they just seemed to “disappear” from underneath me. I’ve ended up at the bottom of many staircases in a heap. I’m sure people in my town must think I’m drunk (forever losing grip in my hands too). My legs usually go when I’ve just pushed myself too far. It’s not supposed to be a life threatening condition, but with the amount of accident I have - I sometimes wonder!!!

Happening two absolutely. It's really frightening and I often get woken by these attack's.

The stairs thing not quite but my legs do just go from under me not always when Iv done too much. I also lose the grip on my hands especially my left side.

My experience With fibro is that it doesn't seem to have any rhythm and some things come and go with it. Really need to get myself to a local support group. Do you have one near you?

I'm sorry you are having to deal with fibro it sucks.

Misty and Mustang thank you both for replying, and for you both, it truly is a rotten condition.

Though I'm so sad that you both experience these awful symptoms within Fibro , you've helped me to feel not alone in this.

Though an earlier GP of mine always referred to Fibro as 'muscular arthritis', I've always felt it was more neurological in its roots through the way the pain presents itself.

Re you asking about support groups Mustang - years ago I contacted and spoke to the organiser of one after not long being diagnosed with fibro.
She told me quite bluntly that I would soon 'end up in a wheelchair' and that I 'will become incontinent' . I got off that phone and cried........ then I got bloody angry, and decided that if this is what passed for support, I'd rather deal with it my own way.....and I have.

I know what you mean about the pain presentation. I always feel fibro pains feel “wrong”, unlike if you’ve actually injured yourself or feel tired. I’ve never been able to articulate just what I mean.
It is a shitty condition. It breaks me from time to time. I’ve convinced myself on many occasions that it’s all in my head & im just a hypochondriac. A flare up or relapse usually puts paid to that idea!
I’m glad we could put your mind at rest. I’ve had similar worries myself. I had a weird week once where I couldn’t swallow, was terrifying.

Ahh Worried sorry to hear you feel so crap. I can relate to the wrist thing - just letting go of anything at the wrong moment happens a lot here.

And like you Misty with the swallowing, I often struggle to eat food as my throat muscles seem to have vanished.

These and what feels like a zillion other symptoms that come and go either fleetingly or land on me like a bus heading down a hill, could fill a whole thread, but it was definitely the 2 I posted about that really concerned me as I've never heard of anyone else with fibro mentioning them.

In all the years I've had this I have only seen a consultant once - and that was at the diagnosis stage. The rest of the time I've been under my GP's care for this. When I once asked if I could see a consultant for a review and discussion re my concerns I was told no, that fibro didn't warrant such an appointment, and that my GP was as far as I could go.

In many respects I am very lucky. My GP is amazing. I can (either by phone or appointment depending on circumstance) drop all of my research on him & he’ll either straight out tell me no or honestly say - never heard of it, go & research a little and prescribe me things to try. He admits he or medicine in general don’t know, but as long as it’s not harmful or massively expensive he always tries things with me. Vitamin d was a game changer, hypobaric chamber not so great!!! My local trust are also clearly brilliant as I was almost immediately put under both a neurologist & rheumatologist. Obviously upon diagnosis I don’t see them, but was assured my name would remain on their patient list & I was welcome to make an appointment when I wished.

It's such a strange illness. It affects so many things it's ridiculous.

There was a brief period a few years ago where my neurologist thought I had tonsillar herniation. I don't it turns out but if you google the symptoms it's all very familiar.

Sounds like trapped nerve in your thoracic spine. Get a referral to a physio. Obviously won't fix everything but could make that better.