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.
Hey Kimmie, you could be my sons the way you are presenting, does sound a lot like ME to me. There is no specific test for ME it's about ruling out other conditions, adding fatigue and all other symptoms together, blood tests etc. Have a look at the Tymes Trust lots of information on there, that's the ME charity we belong too who helped us. Love and hugs Soph xxxxxxxxxx
ReplyDeleteThanks Sophie, that's helpful..I'm seeing the rheumatologist next week, and am worried about what to say/ask....I'm not very assertive around professionals..I would prefer to be properly tested, and have if and buts ruled out, I'll forever worry it's something more sinister otherwise.. I'm not comfortable with 'what ifs' (OCD loves em, but I don't o_O)
DeleteI do think (as you say) though, from what Iv'e read, that I'm presenting more ME than Fibro.. but I'm not an expert, just going on articles Iv'e read online, and even then, the articles don't seem to cover the cluster of weird symptoms that I refer to as 'randoms'.
I'll have a look a Tymes Trust - Thank you!
Take care, Kimmie x
No problem, my boys saw a rhemy and she re-diagnosed them, she tried them with gentle stretches (pysio) GET but it exacerbated their symptoms, so they had to stop. They do what they can and have to learn to basically get on with it, as there is no curative treatment. They have ups and downs but this is the nature of ME. I would just say to the rhemy that you have been researching and ask if ME can be ruled out, at least that way you will know.
ReplyDeleteYou take care too Kimmie xx
Okay Sophie, I'll do that (or get hubs to do the talking) - I want other things ruled out too ideally, MS for instance....he did seem a nice doctor (even if a little too quick to label) so fingers crossed he'll take my concerns seriously!
DeleteKimmie, I think GPs and doctors often diagnose Fibro instead of M.E because the conditions tend to run concurrently in sufferers and can cause similar reactions. My diagnosis took a long time to come about because my GP treated each symptom singly rather than looking at the picture holistically and taking a better history.
ReplyDeleteRight from the start they added Fibro into my M.E diagnosis due to the distribution and amount of pain I experience. Only later did I discover I also have hypermobile joints and arthritis. All the symptoms you list have affected me to some extent or other over the years. But people with M.E can vary greatly in the severity and duration of certain symptoms.
Maybe checking out the cardinal ones with the M.E Association would help you to assess if this is likely to be your problem. Though self-diagnosis can be wrought with difficulty combined with unnecessary worry and distress. Yet the 'not knowing' can cause a lot of anxiety too. Be cautious in labelling yourself too soon, but also be aware and informed. I am happy to be contacted if you need to spill to someone who understands. With sympathy, empathy and gentle ((hugs)) to you. xox
Hi Joy, Thank you for taking the time to comment.. I know how tired you are yourself, it's kind of you to use some of your 'spoons' connecting with me :)
DeleteI actually saw my Rheumatologist today, and after a long consultation, during which he was incredibly thorough, and understanding of my fears, he has confirmed Fibromyalgia.... as I also have some symptoms, aside from the (must have been 30ish) that he was able to associate with Fibro..he has also ordered an MRI scan, bloods, chest xray, and referred me to a neurologist - he says that while he is convinced enough to diagnose Fibro, he would like to rule out other conditions too.. in part I'm sure to put my mind at rest..but he did say that it's entirely possible to have other conditions alongside Fibro/ME.
He was so kind in regard to my mental health issues, and spent time reassuring me, and hubs. I feel relieved this end of the day..because I'd worked myself up about the appointment, especially as (in my mind) he had seemed so quick to diagnose Fibro the last time I saw him.
I was very worried before seeing him today that he wld dismiss my concern..he didn't though, he was lovely :)
I'll blog an update when I' feeling up to it - because so many readers have been kind enough to respond to this post..both here, and on Twitter.
But (though rambely, because it's been a very long day, and I'm fuddled) the long and short of it is - Fibromyalgia..yes - (possibly ME..though he, I think, from what he was saying, is one of those doctors who feels there is a cross over between the two) and a ? as to whether there may be another issue..which (either way) neurologist should be able to clarify.
Thanks Joy, for reading/ respondind.
I hope you are as well as can be at the moment,
With love, Kimmie x
Hi there. I stumbled on your post while on Zite. I just wanted to add that a lot of your symptoms also sound like symptoms of a Chiari Malformation. If you haven't had a scan of your brain..it.might be worth asking for to rule out other causes. Best of luck.
ReplyDeleteThank you, I have now been referred for an MRI scan.
DeleteIt's lovely of you to take time to read/comment :)
Take care, Kimmie x
I wish I could help you understand your symptoms and what you're going through, but I have never been through that. I am praying for you, though, and I hope that you find the answers and solutions you need. It's frustrating just waiting and waiting, and constantly having to deal with those problems, and I pray that God gives you the strength you need. I've been following your blog for awhile, and regardless of the conditions you struggle with, you are a very strong person. I might not know you personally, but that is one of the great advantages of being interconnected through the internet nowadays. You do not have feel alone. God bless you and your family!
ReplyDeleteThank you so much for your kind comment, I did get some news today, which I will blog about as soon as I'm able, for now, if you read the reply to Joy (a few comments up) you'll get the gist of it.
DeleteYou are so right about the internet....I have made so many friends, and as you say..no longer feel alone in the struggle :)
I hope all is well with you and yours
God bless.. Kimmie x
Sure can relate, reading this helping, thanks for sharing
ReplyDeleteYou described my symptoms to a tee! (including the pick axe to the eye). I would say this if you are in doubt keep pushing, and make sure everything is ruled out. When I was first given a Fibro dx I'd had much ruled out already, I'd had many many blood tests, MRI, etc. But, I still pushed. Like you I was concerned with the overlapping MS symptoms and for that reason I pushed very hard for additional testing, but they all came back clear (as has every test for the last 5 years). It's frustrating to be left with nothing but a Fibro dx, a dx that too many docs still dismiss, and that I still often wonder if it's real, but that's where I'm at. I've come to terms with it and as more research is continued I am starting to see a light at the end of the tunnel. I really feel like they will make the connections in the next few years that Fibro is a nerve disorder and should be treated as such, but we'll see.
ReplyDeleteHi Julia, Thanks for taking the time to comment.
DeleteIv'e seen my rhuemy since writing this post, and he has confirmed Fibro regardless of anything else that shows up (or doesn't as the case may be) he did actually take my concerns on board....he says that there are some disorders that can often be mistaken as Fibro, but that also Fibro can run alongside other disorders, ... anyway, he (after thorough examination, and a lengthy questionaire) is convinced I have Fibro.. but requested tests to rule other issues (like MS) out - iv'e had blood test, and a chest xray (waiting for results) and I have an MRI booked for 5th March.. and a neurology appointment in June. (the earliest appointment they had)
It makes sense to me when you suggest Fibro is probably a nerve disorder - because much of the pain ( in my experience is nerve like) I often describe it as like having toothache in various body parts!
I hope you're as well as can be at the moment....all the best
Kimmie x
As a 15 year Fibro fighter myself, and struggling with PTSD, chronic fatigue and hypothyroidism, I would recommend you get your blood tested occasionally for thyroid issues. This is under diagnosed but can have serious health implication; heart, kidney damage and slows your metabolism down until you feel even more tired than you do with Fibro-yes, it is possible! The Walking Dead brought to life! You will. need a medication of the thyroid hormone replacement for the rest of your life but your life will be extended because of it.
ReplyDeleteHope this helps. Sorry you had to join the Fibro Fighters club, 😈but we rock✊
Hi, Shelley, thanks for the advice, I was tested for thyroid during the eliminating-all-other-possibilities process, and my thyroid was ok... I didn't realise that it is advisable to routinely test periodically though, so thanks for that info... I'll ask my rheumy about that next time I see him.
DeleteAll the best to you and yours
Kimmie x
Hi I have Fibro and you have described me with your symptoms. However, although extremely tired when in a flare I think pain may be slightly worse. It's really hard to say as both tiredness & pain both are horrendous and sometimes I think am I more tired as I can't sleep because the pain is so bad and then k think is the pain worse as tired.
ReplyDeleteHi, Candace, thanks for taking the time to read/comment. I have now had Fibro confirmed (after other tests to rule out all else)... I agree with what you say about the sleep/pain roller coaster... For me, anxiety/OCD is exacerbated by the pains, especially the weird head/chest pains, and that, added to the sleeplessness that accompanies Fibro anyway makes nights unbearable at times.
DeleteI feel for you, the pain and tiredness are (as you say) horrendous!
I hope you are as well as can be ATM, and wish you and yours all the best x
Take care Kimmie. Living with that pain is a tall order. No wonder you are "This tired". I hope things are improving for you.
ReplyDeleteI've was dx with Fibro almost 14yrs ago as was my twin sister and my mom was dx in last 80'' or early 90's. My mom has a whole list of other illnesses that I can't even remember and we all suffer from migraines but my sister's have been to the point of having to go to ER a few times but I really think it's due to where she lives bc mine are worse in summer and she lives in an almost tropical climate while mine is subtropical. As far as the dx of Fibro vrs ME is concerned I don't think it makes much of a difference bc yes my biggest complaint was pain but I've been in a flare up for two months and I'm continually exhausted and brain fog is ridiculous I hate as much or more than the pain! The word issue yes and my daughter use to laugh at me(she was a rebellious teenager,we are closer now although she doesn't believe in Fibro or thinks it can be cured by how you eat and your faith which yes I think it's possible but God doesn't always choose to heal us in our timing) anyway yeah I went off on a tangent. I often stare at words and swear they are spelled write or can't even figure out how to spell a simple word(you don't know how many times I've use google and dictionary.com to spell a word right) trying to get words out but something happens between your brain and month or brain and hand and it comes out jumbled or sometimes not at all and yes I've had the mind blank when you just say "that thingy" bc the word won't come.And I've even stopped in middle of what I was saying or typing bc my mind goes blank. I have a book blog I started the four years ago and I use to have brilliant reviews of books but in the last two years they've been almost plain and on last few months I've not been able to write one at all or just a few sentences. Like I says earlier which I kinda went on a different thought line,I do think Fibro and ME can and does coexist in many of us or mask each other in dx. MS is a scary thought and I worry about it sometimes when my muscles won't work but I also known someone who has it and I haven't had the severely drastic symptoms as she has. But I know my rheumatologist ran suspected some scary autoimmune disease( can't remember what it is but it started with S and it's where your tissue starts to harden and there is no treatment and it's fatal bc it eventually hardens around your organs causing them to shut down. I can see her notes from visit online and see my RA tests online but for some reason the other tests she ordered I the results aren't online which is from bc I don't see her for another few months. But glad your dr did tests,they should always do test to rule everything else out before they dx you with Fibro.
ReplyDeleteThank you for taking the time to comment. I did ask my rheumy about the possibility that I have ME, rather than fibro..because of the SEVERE fatigue, and he said that he believes the two conditions are quite probably one and the same, and that people fall into either end of the spectrum.
DeleteI agree that the tests, and the wide range of symptoms are incredibly scary... even once diagnosed it's sometimes hard to accept that SO MANY symptoms, that can be (at times) severely debilitating are all down to Fibromyalgia. It's very easy when in a flare to imagine something serious/life threatening even might be happening. In my case OCD doesn't help as intrusive thoughts can blow things out of proportion.
I hope tings are as well as can be for you and your family at the mo. And wish you all the best. Kimmie.