Home General Info & Awareness Pain, Fog & Fatigue: The Reality Of Fibromyalgia Symptoms

Pain, Fog & Fatigue: The Reality Of Fibromyalgia Symptoms

by InvisiblyMe
A bird's eye photo of a woman curled up in bed with a pillow over her head. She's wearing beige and the linen is also beige. Below is the post title, which reads Pain Fog & Fatigue The Reality Of Fibromyalgia Symptoms. Hashtag Fibromyalgia Awareness Day 2021.

Living With Difficult Fibromyalgia Symptoms

For Fibromyalgia Awareness Day 2021 on 12th May (May is also referred to as Fibromyalgia Awareness Month), I thought I’d take a look at some of the most common & most difficult fibromyalgia symptoms to live with.

After my 2015 surgery, when my health took a rapid nosedive, I started developing an array of bizarre symptoms. Fast forward to 2021, and I do thankfully have some answers. Debilitating nerve damage, for instance, that affects my back and hips. A likely foreign body autoimmune response to implanted material in my body. Then there are things I can’t explain, like the chronic migraines that eradicate a large portion from 5 days each week.

Other symptoms, from brain fog and fatigue to all over body pain, have granted me fibromyalgia and ME/CFS diagnoses. I won’t go into the issues I had around accepting these kinds of diagnoses, but I thought I’d give a little look into some of the things I most struggle with when it comes to living with fibro. 

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Chronic Pain

Chronic pain is a key component among the fibromyalgia symptoms most commonly experienced.

Aside from the pain with an identifiable cause from nerve damage, I have inexplicable all-over pain. From stiff and achy, to feeling I want to smash a window with interminable pain, it can affect what you’re able to do physically and impact you psychologically.

I remember one rheumatology appointment where the specialist started poking around different parts of my body, and I’d keep going ‘ouch!’, not a clue what she was doing. I thought it odd that lots of places were painful to only slight pressure but I’d kept thinking maybe I was just getting ‘weedy’, as my dad would say. Turns out she was looking for 18 ‘tender points’ or ‘trigger points’ that are often particularly painful for those with fibromyalgia. I believe I had about 15 of those points ticked.

The pain itself is hard to describe and it can vary, from body part to body part and from day to day. Burning, aching, throbbing, sharp. I find muscles ache, my joints are stiff, even my bones can feel like they hurt.

I take Tramadol on a daily basis regularly throughout the day for my chronic pain, including fibromyalgia pain. It doesn’t get rid of the pain by a long shot, not even anywhere close. But it does help to make things a little more manageable so that I can get the basics done. I was incredibly reluctant to ever use it but I was left with no choice. I can’t function without it and I know I’m not alone in that.

The misuse of the ‘opioid crisis’ and changes to healthcare as a result are seeing such life-saving, last-ditch-option medications removed or reduced for chronic pain patients. But this is very real pain. It can’t be magically quelled by positive thinking or meditated away. Such steps against chronic pain patients makes me sick and angry. But that’s an argument for another day!

A black background with purple butterflies. Overlaid is text written by me. Below is InvisiblyMe dot com and a hashtag for Fibromyalgia Awareness Day. The post reads: Fibromyalgia encompasses a range of symptoms. Chronic pain is one of them. It's widespread, all-consuming, overwhelming and relentless pain. I never would have believe how bad it could be until I experienced it. I now experience this every single second of every single day.

I have never been one to be afraid of a little pain, and I’d always considered my pain threshold fairly high. I was a tomboy as a little kid and my dad raised me with the ‘get on with it’ approach. My folks didn’t ‘do’ pain medications or other things they’d see as ‘fuss’. You’d take whatever injury or problem, deal with it, let nature run its course and get on with life. I don’t mean to make my parents sound harsh because they weren’t, but there was not even a whiff of chronic illness life pre-my chronic illnesses.

I remember plenty of minor injuries over the years, from a basketball pole and hoop being dropped onto my head in secondary school, to being pushed down concrete steps in high school and ripping a cut several inches long down my thigh. I never much cared, especially when you know it’s short-lived pain. 

I think therein lies one of the issues. It’s rather different when you know a pain of any level is temporary, like cutting your finger, hitting your head on a low ceiling or getting an injection. It’s another matter entirely when it is ongoing, with no end in sight. 

Fibromyalgia pain is chronic. It’s a long term deal. I experience pain every single second of every single day. Although the most debilitating pain for me is from nerve damage, fibromyalgia pain is also debilitating, as well as being incessant, overwhelming and infuriating.

If you can’t distract yourself from it, you risk being driven to the edge. Imagine someone poking you with the pointed end of a knife over and over and over again. Not just for 5 minutes, but every second for years, perhaps for the rest of your life. That’s enough to make anyone lose their shit. 

Fatigue

Fatigue is often a significant aspect of fibromyalgia, though some people might also have a separate ME/CFS diagnosis in addition. 

This isn’t about being tired or needing a bit of sleep. This is bone-deep exhaustion. This is the sort of fatigue that doesn’t waver with getting rest or doing exercise or popping some vitamins. 

I know when things get bad because I can lie there, pretty out of it, and wouldn’t be able to move even if the house were on fire. Other times it’s general fatigue that follows you around, weighs down your limbs, slows your speech and your thinking, drags you backwards and downwards. It might be like walking through quicksand or not being able to walk at all. It might slow down your activities or stop them altogether. Sometimes you can push through it, but the payback afterwards could last for hours or days thereafter. 

I push through it more often than not, especially during the pandemic when I’ve had so much to do and I have to get things done. When there’s a small window where I’m capable of doing things, it takes everything in me to get as much done as quickly as possible because you don’t know what you’ll be like later on in the day or tomorrow. You take the time you have when you have it, but that’s not the best way of dealing with it. Sometimes there just isn’t a choice.

Pacing is often thought to be the better way of managing fatigue and chronic pain, so while pacing can be immensely frustrating, it does help to keep yourself on a slightly more even keel. It’s just not always possible to do it.

There are also times that no amount of pushing through it will physically work anyway and your body renders you to bedrest or to sitting propped up, staring into space with no ability to do anything but wait it out. 

An image of a walkway lined with trees to either side with bright red leaves and red leaves on the ground. Overlaid is white text reading: Fatigue with fibromyalgia or ME/CFS is not just "tiredness". Far from it. It's bone-deep exhaustion. It's overwhelming, debilitating and crushing fatigue.

Fibro Fog

Cognitive dysfunction is a common feature for those with fibromyalgia. This is a particularly frustrating one for me as someone who used to be more academically minded. I used to study endlessly, I’d have to remember a thousand things for my Psych degree exams, I’d be able to write logically and accurately for hours on end. I used to be able to form concise arguments quickly, come out with witty quips in nanoseconds. I used to be able to remember what I went upstairs for only two seconds ago.

Fibro fog can pertain to a few things. There’s the general ‘fog’ where things are rather fuzzy up there. You can’t catch the words you’re after on a regular basis. You can’t remember things you typically should be able to remember. You feel you can’t keep thoughts in place or easily accessible. You’re not quite ‘all there’ and firing on all cylinders, even if you were consistently on fire and on the ball pre-fibromyalgia. 

I’ve never really been good at anything other than the more cognitive side of things. To feel those aspects have been taken away to such a degree was, and still is, soul-destroying. What am I left with? ‘Not a lot’, is what I think a lot of the time.

I make a lot of mistakes. I write and it’s littered with errors. A lot of the time I can’t write at all, and forcing it just makes it worse. You have to wait for the moment when your brain is engaged just enough to make it possible, and that doesn’t really fit with daily life when you need to get things done there and then, not whenever it suits your brain. Fibro fog can also involve confusion, again with a general sense of being muddled or not really knowing what’s happening or what day it is.

My concentration is shot, so bye bye to the years I spent sitting studying or writing or holding a lengthy deep-and-meaningful conversation. I’m lucky to get 20 minutes of solid concentration. It just means I flit between things continually or need to regularly break and either come back to what I was doing, or give up until another time. This is partly why things don’t get done anymore, because I get little bits done over different tasks when it’s not possible to focus on one thing solidly and effectively.

My memory is not what it used to be, both for long term and short term stuff. I can’t tell you how many times I forget what I was doing as I was doing it. That can happen to all of us, but with fibromyalgia these occurrences seem to multiply, further muddled by the fog and poor concentration. I’m sure I had another point to make her, but I can’t for the life of me remember what it was!

A meme by InvisiblyMe. A still image from Finding Demo showing Dory the fish. Overlaid it reads: The worst thing about fibro fog is...is...um...uhh...What was I saying?

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Fibromyalgia Awareness Day 2021 : Sharing The Experience

Pain, fog and fatigue can have a myriad of knock-on consequences. They can affect not just your day to day but your relationships, your social life, your work, your self-esteem, your confidence and your mental health. It’s unsurprising that many with such a chronic illness face mental health issues like anxiety and depression, or that many lose their social lives, friendships and jobs. 

I think that sharing our experiences can be helpful not just for the sharer, to let out what they’re going through so it doesn’t get pent up in a ball of frustration, but so that others going through similar can realise they’re not as alone as they may feel. It’s also good for general awareness, especially for those who haven’t experienced something like fibromyalgia themselves. 

A purple cartoon butterfly.

Prior to living with fibromyalgia myself, and I hate to admit my ignorance here, but I never would have quite believed it. I never could have imagined such symptoms and how debilitating it can all be. The experience is unique for everyone but there will be many aspects of living with this invisible condition that people will share. If you’re struggling, then please know that I see you, I hear you and I ‘get it’. 

Fibromyalgia is not a choice, you just have to do your best with the hand you’re dealt, focusing on the things you can do rather than the things you can’t, and getting through it however you see fit. We’re all different, we all cope differently, and we’re all have unique circumstances and situations in which to deal with it.

As is the case with any condition, you never really ‘get it’ unless you experience it for yourself, but it’s not something I’d wish on my worst enemy. 

A black scroll divider.

Do you live with fibromyalgia? What do you find to be the most difficult fibromyalgia symptoms you deal with?

Caz  ♥

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39 comments

Sarah May 10, 2021 - 4:23 pm

I’m with you on the Tranadol. I wouldn’t be able to move at all without it.

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InvisiblyMe May 12, 2021 - 5:17 pm

I’m sorry you have to rely on Tramadol, too, though I’m glad there’s something that can help to some small degree. It’s a horrible catch-22. We don’t want to have to need it, but we’re grateful to have something to help us function to get the basics done ???? x

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Animalcouriers May 10, 2021 - 4:24 pm

Thinking of anyone suffering from this debilitating condition.

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InvisiblyMe May 12, 2021 - 5:29 pm

Me too ????????????

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capost2k May 10, 2021 - 4:33 pm

My dear invisible friend, my heart aches for you in your pain. I cannot pretend to know what this must be like. A couple of local friends have dealt with (ARE dealing with) chronic migraines and fibromyalgia, but nothing as severe as you describe.
Do not lose hope. HOPE ALWAYS! This is the title of a new book I just read by Dr. Matthew Sleeth about suicide and I sincerely hope it never becomes an option for you. Your life is too precious and you are too valuable a person to let the pain win.
See 2 Corinthians 4:7-18 with special emphasis on 16: “Do not lose heart. Though the outer self is wasting away, the inner self is being renewed day by day.”
Though Paul describes this as “light and momentary affliction,” it was NOT light at all when you read what difficulties he went through.
You are in my prayers, Invisible friend.
If you want to email me, I am at capost3k@gmail.com
yours and my Lord’s,
c.a.

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InvisiblyMe May 12, 2021 - 5:59 pm

Thank you for such a thoughtful comment. You’re right, it’s so important to never lose hope; always try to keep even just a flicker alive. I’ll have to check out that book on suicide. I feel it’s a very personal decision, but perhaps I’ll write a post on that one day as there will be many who struggle and consider this as an option. Thank you again, c.a. Take good care of yourself and I hope the rest of the week treats you kindly ????

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Despite Pain May 10, 2021 - 5:05 pm

I’ve never been tested or diagnosed with fibro, but everything you say resonates with me. As you know, I live with chronic pain and it is so debilitating. It’s tiring to live with and it affects everything in life. My brain doesn’t work as it should either. My memory is shot, my concentration span is terrible. My blog posts take so long to write, and probably even longer to correct the mistakes I make!! I didn’t intend this comment to be about me, especially since I don’t have fibro. I guess I just want to say, I get it…I understand what it’s like.

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InvisiblyMe May 14, 2021 - 4:19 pm

I’m so glad you commented, Liz. I don’t like with TN, and I’ve no idea what it’s really like (other than what I know from what you’ve told me or blogged about) but I ‘get’ the pain, the cognitive impact, the exhaustion of it all. There are lots of elements that cross over between conditions, isn’t there? Out of interest, do you get all over body pain? I’ve seen a lot of individuals who’ve had one condition that they feel was like a trauma trigger for their bodies that then led to fibromyalgia. It’s an interesting one, given how the cause of fibro isn’t fully known or understood. Thank you for sharing your thoughts here. Sending gentle hugs your way ???? xx

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Despite Pain May 15, 2021 - 11:18 am

Yes, Caz, I have pain everywhere, more or less. I had to colour a body diagram to show my doctor where I had pain a few years ago, and very little white paper showed. But some of my pain does have specific causes. My back and rib pain is because I have scoliosis, for example. I have pain in my feet which has been so bad that I could barely walk at times. An x-ray showed arthritis, but early and fairly mild. The pain was far from fairly mild. But doctors just accept that as an answer. Doctors often blame everything I have on my back – “well, you have scoliosis….” Then I was diagnosed with coeliac disease, and they blamed that instead. Perhaps they’re right, who knows.

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Sandee May 10, 2021 - 5:15 pm

I’m so sorry you’re dealing with this horrible disease. I’ve another friend that has this disease and you both say the same things.

Have a fabulous day, Caz. Big healing hugs. ♥

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InvisiblyMe May 14, 2021 - 4:22 pm

I’m very sorry for your friend going through such similar symptoms with her fibromyalgia. It really is a challenging one, as are most chronic illness/pain conditions, to live with.
I hope you’re keeping as well as possible, Sandee – hugs right back at’cha! ???? x

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ashleyleia May 10, 2021 - 5:22 pm

I hope science is able to come up with something that specifically targets fibro and ME/CFS. The status quo sounds really crap.

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InvisiblyMe May 14, 2021 - 4:23 pm

Yep, it is very crap. There’s very little to help patients with fibro or ME/CFS, and nothing to specifically target either condition (to my knowledge). Fingers crossed science creates a medical miracle in the near future..! xx

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barmac5 May 10, 2021 - 5:40 pm

I knew straight away it had to be connected to Fibrocitis as my Mum used to suffer from it but then the gate posts changed and it was looked at differently. Fortunately I met a great Rheumatologist who diagnosed me and put me in the right direction for help. Hope your keeping well Caz xx

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InvisiblyMe May 14, 2021 - 4:30 pm

Do you have any idea of the cause of yours or what triggered it, or do you think it’s got more of a genetic link for you? I’m glad you had a good rheumie – you really do need a specialist who has an open mind, compassionate heart and knowledge around such conditions to be able to diagnose you accurately. Without that, it can be so, so hard for people to accept what they’re experiencing or seek help. xx

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chronicmom May 10, 2021 - 6:43 pm

I feel you on losing your talents on the cognitive side of things. So much work and study on my part down the drain because of brain fog.

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InvisiblyMe May 14, 2021 - 4:42 pm

I’m so sorry, Shelley. It really is hard to come to terms with the decline, isn’t it? ????

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B May 10, 2021 - 9:29 pm

I never would have quite believed it either. Just reading about it hurts. Much love to you, Caz.

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InvisiblyMe May 14, 2021 - 4:46 pm

Yeah, it’s a pretty rude awakening and sharp learning curve when you discover what it’s like for yourself. Thanks for reading, B. Sending love your way ???? xx

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annieasksyou May 11, 2021 - 3:40 am

Dear, dear Caz

And through it all, you somehow manage to put together terrific, inspiring, clearly written and thoughtful posts that bring information and comfort to countless numbers of us.

You’re a wonder. I’m so sorry you suffer so much, and I hope some medications or other aids will soon develop to ameliorate your soul-sapping symptoms.

Annie xxx

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InvisiblyMe May 14, 2021 - 5:48 pm

Oh Annie, that’s so kind of you. Thank you ????
I also hope there’ll be something in future – some medical marvel from our incredible scientists around the world – that can help all those with such symptoms. Fingers crossed!

Thank you for reading & the lovely comment. I hope you have a wonderful weekend ahead ???? xx

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Linda Lee/Lady Quixote May 11, 2021 - 5:39 am

I am amazed and humbled by you. Especially now that I have a lot of severe, weird pain going on in my shoulder, back, and neck for no apparent reason. This just started about 3 weeks ago. My doctor has ordered an MRI and has referred me to a spine institute. This pain is so horrendous, all consuming, and debilitating. Until it happened to me, I wouldn’t have fully believed it, either. Is this the beginning of fibro, I wonder?

No one should have to hurt like this. I am so sorry for all that you are suffering.

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InvisiblyMe May 15, 2021 - 2:43 pm

Oh no, I’m so sorry, that sounds awful to deal with. Without making this about me, I’ve had problems with my neck, shoulder, back and down my sides, which turned out to be musculoskeletal (some muscles in my back have become too weak from always being propped up in bed, others have overcompensated, and the end result has been a nightmare!) Does it feel musculoskeletal, like the pain is all joined up around those areas? The MRI is a good idea, as is the spine institute referral. I also never knew how much the nerves in the back are joined up all over the place. Hopefully they’ll be able to figure out what’s going on and come up with some suggestions to move forward so you’re not in as much pain. I’ll keep my fingers crossed for you. Sending gentle hugs ???? xx

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tidalscribe.com May 11, 2021 - 7:48 am

It is small consolation, but I guess the internet has enabled sufferers of chronic conditions to know they are not alone and bloggers can give those of us lucky with our health some insight into the invisible conditions.

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InvisiblyMe May 15, 2021 - 2:45 pm

It’s quite a big consolation, in my opinion. You’re absolutely right. The online world has opened things up in ways that never would have been possible before, for raising awareness, giving people information at their fingertips so they can better advocate for their health, and finding a community so they don’t have to go through it alone. Technology is pretty damn awesome! x

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DutchIl May 11, 2021 - 2:47 pm

Thank you for sharing!!.. my late wife had fibromyalgia… she made several adjustments to deal with it but still managed to life life.. main thing was to keep moving… hope you are able to find a painless as possible path and life is all that you wish for it to be!!… 🙂

Until we meet again..
May your day be touched
by a bit of Irish luck,
Brightened by a song
in your heart,
And warmed by the smiles
of people you love.
(Irish Saying)

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InvisiblyMe May 15, 2021 - 2:46 pm

I’m very sorry for your late wife having to deal with fibromyalgia too, though I’m glad she was still able to live life and perhaps not be too consumed and ruled by it. Keeping moving and doing what we can is important, I do agree. Thank you for sharing this – I hope you have a restful, enjoyable weekend ????

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Kymber May 11, 2021 - 8:10 pm

You describe the symptoms, and realities, so well. It encompasses my life, too. I remember the rheumatologist poking around, too, and the weird pain it caused at the slightest touch. I wasn’t happy about my diagnosis because my primary care physician didn’t believe Fibromyalgia existed. Thankfully, I changed my PCP and am now getting the treatment I need. My super high dose of Lyrica helps with the nerve pain; at least now I don’t have the electric shock going down my legs.

Wishing you a good week, Caz. xo

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InvisiblyMe May 15, 2021 - 5:31 pm

I’m so sorry you know all too well what it’s like. There are also a lot of doctors who still don’t seem to believe that fibromyalgia exists. I think even my rheumatologist was somewhat doubtful. I was actually advised against going online in case I were to “fall down the rabbit hole”. I understand the issue she meant, but it’s not helpful when a patient gets a diagnosis and zero information, help or support. I’m glad you’ve got a more supportive PCP now and that you find Lyrica beneficial for some nerve pain. I have that electric shock issue too! Mine’s from nerve damage in my back and it can be so, so annoying when lying down trying to sleep at night. Sending gentle hugs your way, Kymber. ???? xx

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Jo Jackson May 12, 2021 - 12:56 pm

You do so well to produce so many well written blogs.

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InvisiblyMe May 15, 2021 - 5:35 pm

That’s very kind of you to say, Jo. I don’t feel like I’m doing a very good job and I struggle to keep on top of any of it, but I’m still very glad for being in the blogging world. I hope you have a lovely weekend ???? x

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The Oceanside Animals May 12, 2021 - 4:00 pm

Charlee: “Our Dada says that over 20 years ago he worked with someone who had fibromyalgia. He had never heard of it at the time and she explained a lot about it to him.”
Chaplin: “In particular she explained how long it took to get anyone to take her symptoms seriously and how much longer it took to get a diagnosis.”
Lulu: “It’s hard to imagine living with constant pain without knowing what’s causing it and with doctors telling you it’s all in your head.”
Chaplin: “By the way, Dennis took daily tramadol for the last few years he was with it, because of his hip dysplasia and then the osteosarcoma. So at least you are in good company there, right?”

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InvisiblyMe May 15, 2021 - 11:03 pm

I imagine it would have been incredibly tough for that person you – ahem, your dada – worked with back then. It’s hard enough now to be believed let alone 20yrs ago when hardly anyone had heard of fibromyalgia. As for Dennis, I’m glad he was able to take something to help a little with his pain. I am absolutely in good company there. Thanks guys ????????????

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Corinne May 12, 2021 - 6:43 pm

I have family members that suffer with this and on bad days, it really wipes out. Thanks for raising more awareness it. It sounds like a terrible thing to suffer with.

Corinne x

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InvisiblyMe May 15, 2021 - 11:06 pm

I’m very sorry for your family members having to live with this, too. It really can wipe you out (even on the ‘best’ of days in my experience!) I do think it’s brilliant there’s increasing awareness and understanding, so even though there’s a long way to go – especially as many doctors don’t even acknowledge fibro or provide any support to their patients for it – it’s surely a better situation now than years ago when it comes to awareness. Thanks for the comment lovely xx

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Lisa's Notebook May 13, 2021 - 8:59 am

I have a couple of friends who suffer with fibro and it just floors me how they keep going. It’s a horrible, debilitating condition that, as you say, you wouldn’t wish on anyone. I had sciatica for nearly a year and it was the worst months of my life. Thankfully, I found a treatment that worked (biopuncture) but I can still remember the feeling of a red hot knife using my sciatic nerve as a stropping whetstone, 24/7. I can only hope and pray science finds something that can help all you fibro sufferers. Thank you for writing this post xx

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InvisiblyMe May 15, 2021 - 11:25 pm

Absolutely, it really is debilitating and yet – for me at least – we can end up feeling like frauds or like we’re never good enough, because we can’t do things the way we used to. We can only try our best though, and at the end of the day that just has to be good enough. I’m sorry you went through the hell of sciatica but it’s amazing the procedure worked so well for you. Did you find that resolved it entirely? I hope so, and I hope you never have to experience that again. I’m with you on that hope for science finding something to help those living with fibro. Fingers crossed! Thanks for the comment lovely xx

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Katie Clark May 15, 2021 - 4:44 pm

So very well explained. For me, the fibro fog really makes it difficult to do pretty much anything. It was the reason I had to leave teaching. I think it’s that and the utter exhaustion that makes everything seem like it’s too much. I’m feeling a bit of that today. The pain is there, knawing right now at my bladder, hips, and thighs, but I feel the fog rolling in and although I just got up 3 hours ago, I really feel the need for a nap.

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InvisiblyMe May 15, 2021 - 11:37 pm

It’s quite hard to adequately explain the symptoms, don’t you think? I’m glad this post made any sense at all! I’m sorry the ‘fibro fog’ has been such an issue for you as well. It’s incredibly frustrating, and I’ve found that the more you push it – whether that’s trying to focus, write, even have an argument – the worse it gets. The pain doesn’t help matters because it’s relentless and you can only distract yourself so much. As for the fatigue, well, that’s a wipeout at the best of times. Sending gentle hugs your way, Katie ????????????

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