Follow @stuckinscared Stuck In Scared: Fibro
Showing posts with label Fibro. Show all posts
Showing posts with label Fibro. Show all posts

Wednesday, 8 June 2016

Symptoms of Fibromyalgia... (My experience)

It's been a while since I posted anything more than the odd quote/poem. It's been a tough few months here, on top of (as many of you already know) an incredibly tough Two-ish years. 

For weeks now I've been in one of my (just-coming-out-of-still-subject-to-change) withdrawal phases. 
I've struggled to connect, online or off, and on top of that, (frustratingly), for a variety of reasons, (not least symptoms of FIBRO-BLOOMING-MYALGIA), I've struggled to write, (other than in my journals). 

On that note, Dear reader, you may notice that the following post contains large chunks of  'oi-Kimmie-you-said-that-already', with some fresh-ramble thrown in... because you're worth it ;o)

Symptoms of Fibromyalgia. My experience.

THE FATIGUE
Actually, fatigue doesn't cover *This Tired*, I'm not sure there is any stand alone word that does! o_O 

Having suffered mental illness for years (including, depression, OCD, anxiety, and an Eating disorder) I'm no stranger to fatigue, but *This Tired*, Oh my! never-have-I-ever experienced *This Tired* before! 

No amount of sleep eases 'This Tired', it is extreme, overwhelming, relentless....it knocks me off of my feet, muddles my brain, limits my ability to 'do', and forces me to rest after even the shortest periods of 'doing'. 

'This Tired' has been getting progressively worse over the past few years, and has been a constant for the past year (or so) - and when I say constant, I mean constant, every second, of every minute, of every day... Every. Single. Day!

There was a time, not so long ago really, that I could have painted a room, tidied/cleaned house, garden, kids (and self) in a day... these days I'm lucky if I get through a shower without collapsing. 

I drag myself up in the mornings feeling like I've been hit by a dumper truck (even if I've slept all night) and spend the rest of the day (when I'm not napping) doing very little - and 'very little' is mind-blowingly exhausting! 

I'm so tired even my tired has tired. #Fibromyalgia. @stuckinscared
I've always had a high pain threshold (with the exception of headaches, which I HATE!), and though I detest the walking stick that I now need to get around outdoors, and often grumble-grouch-ouch, (swear-a-bit),  pain alone wouldn't usually stop me from getting things done. 

Fatigue is BY FAR my major complaint, because it (often) makes it IMPOSSIBLE to carry on, If I had to chose, and could only cure one or the other, pain or fatigue... I'd drop the fatigue in a heartbeat. 
There have been a few severe (excruciating) pain episodes that have prevented walking for a while, but I could still read, write, enjoy social media, take in a T.V program; if only I wasn't... So. Damn. Tired! 

Pain gets me down, there's no denying that, but it doesn't knock me out, it doesn't suck the life out of me, it doesn't prevent me from living. Fatigue does that. 

I could go on with the fatigue issue (I have more words!) but I'd rather you didn't hit the 'bugger-this-I'm-off-button' (assuming you haven't already) so I'll move on.

***

THE PAIN(s)... There's a list o_O

Pickaxe to the head: I'm not kidding, well actually, I am.... but MY GOD, if anyone should ever take a pickaxe to my head, I reckon I'd know what'd hit me!  
This can happen at anytime, sometimes more than once a day. It stops me in my tracks, and is (thank God it doesn't last long each time - seconds usually) excruciating!

Knife through the shoulder blade: Clearly, I'm dramatizing again, I've never (literally) been stabbed in the back, but there really is no other way to describe it. Knife pain lasts a lot longer than pickaxe pain, and transmits a heavy-achy feeling down my arm and into my hand, causing partial numbness in the process. 

Alternative shoulder pain: This one is bothersome (because it disturbs sleep) it's painful, intensely so at times (though more heavy/achy/bruised than stabbing) and occurs under pressure....by pressure I mean laying on it/leaning on it.

Chest Pain: I sometimes get a sharp, severe, stabbing pain in my chest just above my left breast, or, in the center of my chest. The pain often radiates through to my neck and/or shoulder, it hurts more when I breath in, and when point of pain is touched (on instinct) it's exacerbated. This one frightens the life out of me (exacerbated by OCD thoughts) - *is it my lungs? is it lung cancer? Am I having a heart attack?* ... You get the picture. 

Bone Pain (deep): (periodic) Specifically knees/hips - when I say deep I'm attempting to describe (in short) an excruciating pain that would be better described as 'cork screwing' or 'boring' the bone - It hurts... a lot! o_O 

Itchy-Twitchy-PAINFUL Nerves: Oh. My. God! How do I even begin to describe this one. 
Have you ever had a trapped nerve, dear reader? Well, The pain's a lot like that, except it affects multiple nerves, wide spread, at the same time.  It brings a whole new meaning to the phrase "It's getting on my last nerve"!
As for the itch... It's sort of on the outside, but really on the inside. It moves around, runs away when you try and scratch it. Have you ever scratched an itch in your armpit to discover (but not before scratching at least 10 other body parts first) that the itch is actually in your foot... Well, it's a lot like that o_O
Fibromyalgia...  It brings a whole new meaning to the phrase "It's getting on my last nerve"!

THE RANDOMS.

Facial/head numbness: This one's weird, and can hit at anytime (though not every day) - not only do I experience numbness in my face and/or head, but it's accompanied (or followed by) a strange internal trickling sensation, almost like cold running water, underneath the skin. It's extremely disconcerting.

Pick & choose hands; I told you my symptoms were random! What I mean by this is - my hands (more often than not the right hand) can be working perfectly well one minute, and be practically useless (powerless) the next. 
Generally there is very little pain involved, but it is incredibly frustrating when I attempt to pick something up and... 'hand says no'. 

Muddling words (forgetting words) OFTEN!: I've always been an outstanding read-out-louder (blows own trumpet) but really, I have; in fact at school (more often than not) I would be the 'chosen one' if any reading out loud was going on. 
Now however, I'm noticing more and more; whilst reading to my daughter, that I'm either muddling the beginning/end of words, stuttering, reading words the wrong way round, or (most worryingly) reading words that are not even on the page. 
It's almost as if my brain and mouth are in no way connected. To give a for instance - When (at time of writing) I read this paragraph aloud, I read the word 'words' as 'swords' o_O

Similarly, I'm Having trouble writing/typing words correctly - specifically, I'm writing letters in the wrong order, or missing words out of sentences altogether.  
Even tweets require an edit before posting these days - and Iv'e lost count of the mistakes I've had to correct while writing this post (FYI - I originally wrote dyas in the line above, as apposed to days, and then corrected) o_O

These issues, coupled with my referring to the kettle (to give just one for instance) as "Oh, (tut) you know, the black thingy that boils water" is enough to drive me (and the rest of the family) insane! 
Makes no sense - Literally! 

These days (some days) it's a miracle if I can remember my own name, let alone where I am in a task/activity/conversation. It's like, I know all of the pieces of the puzzle are there, but I'll be damned if I can find the next piece.
Fibro- Fog  It's like, I know all of the pieces of the puzzle are there, but I'll be damned if I can find the next piece... Quote... Fibromyalgia.
Dizzyness/feeling faint: Especially when fatigue is at it's worst. 
Recently this symptom has become quite debilitating, and has prompted me to visit the GP to confirm (by way of other investigations) that these frequent (almost daily) attacks are indeed nothing more than ANOTHER fibro issue.  

Lead Legs: Heavy, achy (sometimes numb-ish) legs; that have to be willed on when walking, and often make me feel nauseous when resting - it's not a nice feeling, nor is it one I can easily describe... except perhaps to say that; when it occurs, I can feel my legs, (including pain) but they're not quite with it, or with me... Does that make sense? - Well anyway, if there is such a thing as 'lead legs', I have them. 

Itchy/painful ears: Oh how I hate this one. During the day my ears are more itchy than ouchy, but at night the pain is frequently unbearable. 
For months now my ears have objected to being caught between my head and the pillow, and will often wake me up (screamingly) to let me know how pissed off they are. 
Once they've woken me, they refuse to allow me to lift my head without first sliding my hand between them and the pillow, and keeping said hand firmly over the offending a***hole ear hole until I've (carefully, because it really bloody hurts) lifted myself up into a sitting position. 

Drunk walking (minus the drinking): Probably explains itself this one.. but in short - I (often, not always) find I can't walk in a straight line. I've lost count of the amount of times I'm walking down the street beside hubs one minute and under his feet the next. The annoying thing is, I can feel myself suddenly veer off to the left, but there's bugger all I can do about it.  

Finally, and briefly, cause it's taken me days to knock this lot out, (despite the Oi-Kimmie-you-said-that-already chunks) and 'This Tired' is killing me! 
Palpitations - Twitches - numbness: Hands/feet/toes/hips/bum; anywhere's possible. Balance issuesDreams (more than usual). Sleep issues: can't sleep, or, can do nothing but sleep - no sleep is enough sleep - there is no relief from 'This Tired'!

#Sponie quote... I'm practically spoonless in every way. Fibromyalgia. ME. Chronic Illness.

Linking up for the Chronic-Friday-Linkup with Being Fibro Mum

***

Thank you for allowing me to share 

God bless you, and all those you love 

Kimmie x 

Please Note: The above symptoms list is based solely on my own experiences. This post should not be deemed as advice or counsel... or referred to for self-diagnose. Please seek proper medical advice if you (or someone close to you) are experiencing similar symptoms.

Thursday, 5 February 2015

Is 'This Tired' .... #Fibromyalgia ?


Forgive me, dear readers of my rambles, for I have sinned been too knackered, discombobulated, spoonless to write, it's been days since I last knocked out anything worth sharing, and will likely be days before I reach the end of this ramble.

I would like to get this one over to you though, especially to those of you who suffer ME, and/or Fibromyalgia.

A few months ago, I had a severe pain/mobility episode, during which my back/hips went out of alignment and I was left virtually unable to walk for a period of around three weeks, it's not the first time this has happened, and as (over the past 18 months or so) I have experienced ongoing (though less severe) pain in other areas, and a variety of other (random) symptoms, my GP made a referral for me to see a rheumatologist. 

Anyway, to cut a long consultation short, the rheumatologist, diagnosed wear and tear, probable disc prolapse, and sciatica, he then told me that.... I'm developing Fibromyalgia. 

At first, given the (long list) of random symptoms I've been experiencing, and the little I'd heard about Fibromyalgia, his opinion seemed to make sense. However, since then (as you do if you're given a new diagnosis) I've googled untold amounts of Fibro information, and as a result of my google fest there are a few things that are concerning me. 

Firstly, Almost every article I came across states (in one phrase or another) that - Symptoms of Fibromyalgia mimic those of various other conditions (including, worryingly, Multiple Sclerosis) and as there is no specific test for Fibro, diagnosis should only be reached after first testing for/and ruling out other conditions. 

Many of the articles I read also state, that Fibro symptoms are very similar to those of ME (Myalgic Encephalomyelitis ), except that (in most cases) pain is the predominant problem in people with Fibro, whereas fatigue is the major complaint in people with ME. 

I'm a little (a lot) concerned that the rheumatologist would throw fibro at me (on first consultation) without first testing to rule out other possible conditions, especially as (though I do experience wide spread pain, to varying degrees) fatigue is most definitely my major issue! 

It's worth mentioning that the doctor did perform the 'Tendor Points' test, and that I felt 'no pain' in any of the areas he pressed - although his fingers might well have been butterfly wings, so gentle was his touch. 

On that note, dear reader, (especially those of you who are in the knackerbobulated club) - do you, in your *I'm living it so I should know* opinion - think that.... 
a) my symptoms (to follow*) fit the Fibro diagnosis the rheumatologist has thrown at me?  
b) Should I ask him to run tests to exclude other conditions, and if so, is he obliged to do so? 

And now (as promised*) bet you can't wait!

THE FATIGUE
Actually, fatigue doesn't cover *This Tired*, I'm not sure there is any stand alone word that does! o_O 

Having suffered mental illness for years (including, depression, OCD, anxiety, and an Eating disorder) I'm no stranger to fatigue, but *This Tired*, Oh my, this tired is like nothing I have ever experienced before! 

No amount of sleep eases 'This Tired', it is extreme, overwhelming, relentless....it knocks me off of my feet, muddles my brain, limits my ability to 'do', and forces me to rest after even the shortest periods of 'doing'. 

'This Tired' has been getting progressively worse for around 18 months, and has been a constant for the past 6 (or so) - and when I say constant, I mean constant, every second, of every minute, of every day! 

I drag myself up in the mornings feeling like I've been hit by a dumper truck (even if I've slept all night) and spend the rest of the day (when I'm not napping) doing very little - and 'very little' is mindblowingly exhausting! 

I could go on with the fatigue issue (I have more words!) but I'd rather you didn't hit the 'bugger this I'm off button' (assuming you haven't already) so I'll move on. 

The Pain:Well, (as I said earlier) fatigue is by far my major complaint, but I am definitely ouchy..all over (though not usually 'all over' at once) to varying degrees every day.
Back, hip, face, tummy, neck - Head, shoulders, knees and toes (knees and toes) and eyes, and ears, and mou....   
Sorry, couldn't resist - I don't actually (to date) have a painful mouth and nose ;o)

The Randoms: There's a list o_O

Pickaxe to the head: I'm not kidding, well actually, I am.... but MY GOD, if anyone should ever take a pickaxe to my head, I reckon I'd know what'd hit me!  
This can happen at anytime, sometimes more than once a day, it stops me in my tracks, and is (thank God it doesn't last long each time - seconds usually) excruciating!

Knife through the shoulder blade: Clearly, I'm dramatizing again, I've never (literally) been stabbed in the back, but, there really is no other way to describe it. Knife pain lasts a lot longer than pickaxe pain, and transmits a heavy-achy feeling down my arm and into my hand, causing partial numbness in the process. 

Alternative shoulder pain: This one is bothersome (because it disturbs sleep) it's painful, intensely so at times (though more heavy/achy/bruised than stabbing) and occurs under pressure....by pressure I mean laying on it/leaning on it.

Chest Pain: I sometimes get a sharp, severe, stabbing pain in my chest just above my left breast, which often radiates through to my neck and/or shoulder, it hurts more when I breath in, and when point of pain is touched (on instinct) it's exacerbated. This one frightens the life out of me (exacerbated by OCD thoughts) - *is it my lungs? is it lung cancer? Am I having a heart attack?* .. You get the picture. 

Facial/head numbness: This one's weird, and can hit at anytime (though not every day) - not only do I experience numbness in my face and/or head, but it's accompanied (or followed) by a strange internal trickling sensation, almost like cold running water, underneath the skin. It's extremely disconcerting. 

Bone Pain (deep): (periodic) Specifically knees/hips - when I say deep I'm attempting to describe (in short) an excruciating pain that would be better described as 'cork screwing' or 'boring' the bone - It hurts..a lot! o_O 

Pick & choose hands; I told you my symptoms were random! What I mean by this is - my hands (more often than not the right hand) can be working perfectly well one minute, and be practically useless (powerless) the next. 
Generally there is very little pain involved, but it is incredibly frustrating when I attempt to pick something up and 'hand says no'. 

Muddling words (forgetting words) OFTEN!: I've always been an outstanding read-out-louder (blows own trumpet) but really, I have; in fact at school (more often than not) I would be the 'chosen one' if any reading out loud was going on. 
Now however, I'm noticing more and more; whilst reading to my daughter, that I'm either muddling the beginning/end of words, stuttering, reading words the wrong way round, or (most worryingly) reading words that are not even on the page. 
It's almost as if my brain and mouth are in no way connected. To give a for instance - I just read this paragraph aloud, and read the word 'words' as 'swords' o_O
Similarly, I'm Having trouble writing/typing words correctly - specifically, I'm writing letters in the wrong order, or missing words out of sentences altogether.  
Even tweets require an edit before posting these days - and Iv'e lost count of the mistakes I've had to correct while writing this post (FYI - I just wrote dyas in the line above, as apposed to days, and corrected) o_O
These issues, coupled with my referring to the kettle (to give just one for instance) as "Oh, (tut) you know, the black thingy that boils water" is enough to drive me (and the rest of the family) insane! 
Makes no sense - Literally! 

Dizzyness/feeling faint: Especially when fatigue is at it's worst.  

Lead Legs: Heavy, achy (sometimes numb-ish) legs; that have to be willed on when walking, and often make me feel nauseous when resting - it's not a nice feeling, nor is it one I can easily describe..except perhaps to say that - when it occurs, I can feel my legs, (including pain) but they're not quite with it, or with me....Does that make sense? - Well anyway, if there is such a thing as 'lead legs', I have them. 

Itchy/painful ears: Oh how I hate this one. During the day my ears are more itchy than ouchy, but at night the pain is frequently unbearable. 
For months now my ears have objected to being caught between my head and the pillow, and will often wake me up (screamingly) to let me know how pissed off they are. 
Once they've woken me, they refuse to allow me to lift my head without first sliding my hand between them and the pillow, and keeping said hand firmly over the offending a***hole ear hole until I've (carefully, because it really bloody hurts) lifted myself up into a sitting position. 

Drunk walking (minus the drinking): Probably explains itself this one.. but in short - I (often, not always) find I can't walk in a straight line. I've lost count of the amount of times I'm walking down the street beside hubs one minute, and under his feet the next. The annoying thing is, I can feel myself suddenly veer off to the left, but there's bugger all I can do about it. (Sorry hubs x) 

Finally, and briefly (cause it's taken me days to knock this lot out, and 'This Tired' is killing me!) 
Palpitations: Eye twitches: numb hands/feet/toes: Dreams (more than usual): Sleep issues: can't sleep, or, can do nothing but sleep - no sleep is enough sleep - there is no relief from 'This Tired'!

So my friends, (those of you who would know) what do you think, is rheumy right to assume Fibro without testing?  
Is he (In your experience) seeing something in the above that leads him to believe further investigation unnecessary? 
Am I right to think (because google told me so) that what I'm describing sounds more ME than FS, or (as Google suggests) something else entirely?

Blimey, I've just read that lot back and I'm doing my own head in.... If you didn't hit the 'bugger this I'm off button', I salute you! 

Thank you for allowing me to share 


God bless you and all those you love 

Kimmie X 

Copyright©2015kimmie All Rights Reserved 

Update: Since writing this post (after various tests, including an MRI, to rule out other possibilities; and a second opinion...because I still wasn't convinced o_O) I have been given a definite diagnosed of Fibromyalgia. 

Thank you all, who offered support/advice in the process.