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.
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!
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
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.