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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.

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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.

28 comments :

  1. Gosh this sounds terrible. Hugs to you. Thank you for sharing this, as it always helps to know what others are going through. I've had chronic migraines my whole life and it's nice when people understand (or attempt to) what that's like without making assumptions or comments such as,"You have a headache again?" Ughh!

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    1. Thank you. It has been particularly bad lately...I think I have been experiencing what is known as a flare...not surprising really, given the stress of the past year+.

      Oh, my Dear, Migranes I CAN understand (though, thankfully, mine are not too frequent). As I said in the post, migrane, any bad headache really is one pain I really HATE. Headaches prevent things that other body pain might not... like looking at a computer screen, for instance.

      I feel for you... and second your Ughh! People don't get it...unless they have it.

      Thanks so much for taking the time to read/comment, Rica. Iv'e been slack with my comments on other blogs recently (because, well, you know), and I do appreciate that you took the time to connect with me here today :)

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  2. Hi Kimmie,

    I'm very aware of the debilitating impact that Fibromyalgia can subject you to. Of course, a very misunderstood condition that can have a devastating knock on your physical and mental health well being.

    Kudos to you, despite the fact it was daunting just to formulate the words in your enlightening post, you did it. You have an important message and I appreciate your transparency, my amazing friend.

    Hugs and hope,

    Gary :)

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    1. Thanks for hopping over, Gary. It's always lovely to connect with you :)

      Debilitating, yes, it absolutely is! I'm still coming to terms with it TBH. It's incredibly frustrating to realise you JUST-CAN'T do so many of the things you always did. Asking for/accepting help, isn't something that comes easy.

      I hope things are as well as can be with you this week. Hugs-and-hope to you to, my friend :) x

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  3. An huge amount of effort went into this blog post, Kimmie, and your defiance shines through every word. Thinking of you tonight.

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    1. Thank you for your kind comment. I guess I am a bit defiant...case of having to be lol.

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  4. Going through all of this and then having to move too? I know the ice pick in the ear pain, was getting it for 3 months and turned out that I needed a root canal. But oh my, that pain would stop me in my tracks. Frightening really, if you're driving down the highway. And you live with that on a regular basis? Wow, you are the strongest woman I know.

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    1. Oh, Jennifer, It has been the rottenest two-ish years of my life I think... one thing on top of another - on top of another. I'll be honest, I have felt FAR from strong over recent months, but I love that you think I am :)
      I do feel that there is some light at the end of the tunnel now though... Iv'e finally felt the connection with Dad that Iv'e been longing for (that's a whole-nother blog post) and I do have a good feeling about the new home... though where the energy for the move is going to come from God only knows lol.

      Thanks so much for reading/commenting...and for your feedback on facebook RE font. I really appreciate it :)
      I hope this coming week is kind to you. x

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    2. And I hope this week is kind to you. The biggest hurdle is cleared, you have a new place. And although it seems daunting right now, it is all down hill from here (in a good way!)

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    3. All down hill...lets hope so *digs out roller skates* ;o)

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  5. Oh Kimmie, Thank you for being so brave and sharing so openly. What a lot you must suffer. It's just not fair. Any one of those symptoms would be more than enough for one person. You do well to make it through each day. Thank you for letting us know what is going on in your life. I hope you are able to move out of the circle of pain soon. Best wishes. xx

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    1. Thank you, Norah. Youre always so thoughtful in your comments.

      I do think my symptoms have been exacerbated over the past year or so by grief/uncertainty/stress... things will hopefully settle a bit when life is more settled. I'm grateful to be here making through each day though..very grateful for that. :)

      I hope all is well with you and yours ATM. I'm looking forward to your next foodie creation...you have a knack for all-things-Littlie...I shall be using you as a reference when searching childs-play ideas instead of google at this rate. I (we) are watching your space ;) x

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  6. Wow Kimmie, I had NO IDEA fibromyalgia could cause so many horrid symptoms. I do pray the flare will ease off soon.

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    1. I had no idea either, Shirley. I'd heard of the condition but hadn't connected all of my own strange symptoms to it...until they told me I had it...and even then I questioned the diagnosis for a while.
      I knew that fibro caused pain and fatigue, but was unaware (before diagnosis) that it also caused so many other random-weird-frightening symptoms.

      Thank you for taking the time to read/comment...your prayers. :)

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  7. Hi. I've just came across this while researching fibromyalgia. I've been suffering pain for years (since childhood) which a GP put down the Hypermobile Joint Syndrome but offered no further help on it.
    I've always worked in manual work and put it down to that my constant aching and painful muscles and joints. I've put fatigue and 'brain fog' down to being a parent and tripping over my own tounge and forgetting words as again to do with the children. So many things on your list I've lived with as 'normal' I went to my GP again as my dad was diagnosed with RA few years ago but I was told simply I'm too young for arthritis (I'm 33) I've always suffered pelvic problems since having my children but get told that's normal too.
    Is it any wonder I feel really depressed and just fed up with life...is this how it's always going to be? How can I get a GP to listen and take my issues seriously? I always play down everything so it is hard to go them and say I'm struggling so I understand it's partly me too. Can you offer any advice? Would a diagnosis make any difference? What can I do to help myself? Thank You

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    1. Hi, Gemma. I'm afraid the only thing I can advise is to go back to your GP...tell him everything you've outlined here. I have no medical expertise, so couldn't possibly say whether your symptoms are likely to be caused by Fibromyalgia, especially as there are other conditions that might present similarly. I can tell you that in my case I'd had symptoms (to a lesser degree to begin with) and had been going backwards and forwards to the GP for a few years... had frequent blood tests (all came back clear) alongside other tests. It was only after I was referred to a Rheumatologist that Fibro was suggested as a possible cause for my symptoms, and even then it was almost a year later (after more tests and an MRI scan to rule out all other possibilities that a formal diagnosis was made.

      It's clear that you are struggling though...something isn't right... so go back hun, and keep going back until they listen to you.

      I'm sorry I can't offer more than my own experience. I hope you get the answers you're looking for soon. Take care. Kimmie x

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  8. Are you taking anything that helps you sleep, that is key. I was also going to recommend going to a doctor about your tiredness but I see you have done this. Anyway I will still tell you my story. Two summers ago I was mostly sleeping day and night, I blamed it on my other conditions but I went to a sleep specialist and found out I had hyersomnia which is a bit like narcolepsy. Now I'm on Nuvigel which works pretty good, although I do get the occasional massive need to sleep. Anyway it may be worth checking out. Good luck.

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    1. Hi, Emily. Thanks for hopping over. I was offered sleeping pills, unfortunately symptoms of mental health prevent me from taking them at present.
      My issue isn't consistently that I can't sleep (though there are days/sometimes multiple days where sleeplessness is an issue.) - I think my biggest issue is that no-sleep-is-ever-enough sleep. Fatigue is a constant regardless of how much sleep I manage (though obviously exacerbated following disturbed or sleepless nights)

      I will speak to my GP again though, based on the information you've given in your comment. It hadn't occurred to me that lack of restorative sleep might be related to something other than JUST Fibromyalgia. I'd not heard of Hypersomnia before today (though I had heard of Narcolepsy.) Definitely worth checking out... Thank you!

      All the best, Kimmie :)

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  9. I suffer from these a lot, too. I tell my husband on a regular basis that I'm scared one day I'm going to suffer from a heart attack and not know it because of the regular chest pain that I have. Right now, I've got sharp pains in my right thigh, right foot, and right hip.

    I'm glad you're coming back to writing. Each bit helps.

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    1. Yes! Brandi, I say the same on a regular basis (either out loud, or to myself)... 'What if; one day it really IS something serious/life threatening, and I ignore the signs; believing it to be JUST fibro. My husband tries to reassure me (as the doctor has done) that the pain that accompanies a heart attack would feel different; more like an elephant is sat on the chest; but, as fibro chest pain can be so severe at times, and as OCD thoughts contradict their words...I am still scared.

      I'm sorry you are experiencing a lot from my list, and that you are struggling with pain at the mo. It's not easy, I know.

      Thanks so much for taking the time to read/connect.

      God bless. Kimmie x

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  10. I'm so sorry you're going through this---I can't even imagine. Hopefully you'll find something that lessens the degree of these awful symptoms. Sending you big hugs today!!

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  11. I felt so alone dr doesn't get it (you don't work anymore just enjoy) work was my worth but the bit about waking tired doing noting hoping to shower and exhausted by all of it that's me with gosh I hope hubby isn't hungry tonight. I've convinced him we are on an economy diet and frozen diet food is amazing for you! Ha!

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    1. I'm blessed with a hubby who doesn't mind beans on toast...three days on the trot ;)

      I'm sorry you are struggling with same/similar symptoms. Sending gentle hugs. Thank you for taking the time to read/comment.

      I hope this week is being kind to you.

      Kimmie.

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  12. I am so impressed with your determination to hold on to your sanity by writing, writing writing! It’s so powerful to be able to communicate and despite your obvious pain and utter frustration with your condition, you are proclaiming that you are still thinking and even yelling about and from your real self inside your physical body.

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    1. Writing (when fatigue isn't at it's worse) is such a Godsend. It IS empowering, you're right. The-real-self (inside) doesn't go anywhere when the physical body is struggling, and I agree, it helps to have a 'my-space' to tell-it-how-it-is.

      Thanks for taking the time to comment, William. I appreciate that :)

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  13. I know that tired feeling all too well. It can really start you off on the wrong foot each day. I’d decided to get up each morning and treat myself to a walk through nature first thing every day. When I walk around and appreciate the outdoors, my fatigue tends to disappear and I can get through my day more easily.

    Agnes Lawson @ Pain Relief Experts

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  14. Its pretty commonly known now that fibromyalgia is caused by magnesium deficiency & yeast overgrowth. I know it sounds so simple. When I was (& still am) fighting & trying to understand what the heck this was, I was trying to find as much as I could. There is so much information some clear & a lot confusing. I was misinformed for a long time. After reading this article I felt a lot cleared up for me, so I wanted to share it on this blog because I was here seeking answers too....http://bit.ly/2gdP4xW whether your open minded or not, I think you will see the value in it.

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