Yes! I’m that person trying to push the boulder and getting nowhere! Why does life always have to feel that way? Thank you for keeping up the meme thread Jay!
Working full time leaves me no energy for other things. I played games with my granddaughter last night (umm, we also had a short “dance” party, at her insistence - LOL!!!) This morning, I’m sitting here trying to work and really really want to go back to bed! By my third dose of meds, I’ll feel better - Unfortunately, that won’t be until about 4pm. Ha!
I miss everyone, but I’ve burned the candle at both ends for so long that the candle has disintegrated… As you can probably tell, I’m feeling a little depressed lately, which I’m pretty certain is from over 20 years of chronic pain and increasing tiredness. It does help to see that my old pals are still here, with love and encouragement for all 
LOL, JCS, you could beat me at just about anything this morning! Need MORE caffeine. 
Oh I so wish I could boost you up and hope you get some wax back somehow or you could just end the fire before it ends you… 
Thank you for that! My first laugh of the day, my friend! Guess I’m not dead yet -LOL 
I like Winnie in the clouds! Just a “feel good” meme and lovely, Jay! 
HAHAHA #123 SO FUNNY! 
#133a
and
133b
How gracious of the web’s elephants not to sit on women…
“Are you sitting comfortably? - Then I’ll begin…”
Ah, found the “request” again here…
Just had to add another elephant! And, you’re right, Jay - They don’t sit on women! Who knew?!
I think putting meme’s about pain, fibro, etc., is a great idea, and it would bring more awareness of our condition to others.
OR we could just put the “Out of Order” sticker on our forehead (meme above -don’t remember the number) -LOL 
#120, TRUE TRUE TRUE TRUE TRUE TRUE TRUE TRUE TRUE TRUE TRUE TRUE 
#134
When someone asks me when was the Iast time I got a decent night’s sleep: Picture it. Sicily, 1912.
As I’m feeling imploded today I tried looking for images, but only found these…
#135
The scale used for this lego pain assessment tool is roughly like I’d count it, except crying and moaning starts at 7, so I say the drop at 4 doesn’t count as a tear, it’s sort of ‘sweating’ and exasperation.
#136
Look inside yourself… You’re the only one who knows what’s best for you…
#137
Fibromyalgia Flare causes and explanations.
Hey JC,
That Lego Pain Assessment Tool (minus the lego) is basically what my local hospital use as a pain chart, but I agree with you, where they think ‘Level 4-5’ starts and the pain involved in that level can be VERY individual. Individual for the patient, not the dr. For me something like level 8 is death imminent, it’s just at 9-10 it’s death imminent for any mongrel who crosses my path too 
The wifey tells me I’m not a nice patient/person when I’m in pain, my already short fuse doesn’t burn. It just sparks then EXPLODES and god help anybody in the vicinity. Nasty.
The word ‘Sorry’ has become a regular of my vocabulary.
Merl from the Modsupport Team.
Hey Merl!
I tend to IMplode, which is handy for others and not having to say sorry, so I’d rather not swap 
Up to now I’d often been told the charts are so individual that it’s not possible to make one for everyone, and my docs seldom used one. Praps when filling in these really long electronic questionnaires for pain which take over 30 minutes to do, dunno if you know these. But then they told me that’s also just to later compare with myself. But I’ve always wondered if mine is so much different to others, and this chart shows me it isn’t. But I do hear many people say they have a pain of 10 or 11. For me that’d be the point where I jump out of a window screaming non-stop or praps pass out from pain, but wouldn’t that put us back to 0 
. - Not the sort where your head shuts it off and you can run around with an axe in your head without feeling it (Lorimer Mosley) - that’d definitely be 0.
I think only doc tests and treatments have been able to inflict a pain of above 7 on me. 
Spinal tap I think was my favourite, by a doc who was probably practicing on me, making me shout several times. Had to do it twice, didn’t work first time… Luckily a nice nurse held and stroked me - that’s something you can always buy me with…
I’m actually pain tolerant and have a high threshold.
Those who know me know ‘8 or above, stay away…’ Those who don’t know me stay away anyway (if they’ve got any sense). I find if I can justify it to myself, I can move on more easily. But when there is no obvious cause, no obvious reason my frustration builds which adds to my headache, which adds to my frustration and they feed off of each other.
Post surgery nursey asked me to rate my pain out of 10, I said ‘15’ “Ohh, it can’t be THAT bad” came her response. The surgeon had just cut a 4inch x 4inch chunk out of my skull, my head was absolutely BANGING and this young lady was going to tell me about pain??? “Well, you laydown on the floor and I’ll boot you in the side of the head… Then you can tell me all about it” She was offended at my response, but nowhere near as offended as I (she was lucky I didn’t have an axe that day ) As I’ve said to others before, unless you’ve been ‘here’ at this level of pain yourself, personally, you really have no clue just how bad BAD can be. Others may empathise or have ‘some’ idea, but to know it you really have to live it.
Prior to my own neuro situation I thought I knew pain too. Well, wasn’t I given an education. My former 10 on the pain scale might reach a 6-7 now. Some pain is local, within the region/area hurt, but when it’s ‘brain pain’ it can affect EVERYTHING. Some (especially medicos) don’t seem to understand this. They think of all pain as being the same, it’s just the strength that varies. But for those of us who live it know, pain comes in many forms.
Merl from the Modsupport Team
An ever so slightly different pain scale:
So funny - Liebscher & Bracht is very well-known in Germany, and fairly good. But some of the things they say are ridiculous.
Here at 2’50’’ he tells his patient to press a cone under the sternum until it’s 9 to 9.5 on her pain scale. He looks at her and says “ah, you’re looking like 9.5” whilst she is slightly flinching…
They’ve always irritated me with their pain scale, but also with a claim in that that patient of hers used to have fibromyalgia but he has helped her heal it… They do put that differently somewhere else.
Thank you for posting these! The first picture really helped me to realize I need to be kinder to myself. Living with fibromyalgia feels so….hard. I look fine but inside? Not fine. Its a good visual!
Welcome Lynn! Good to see you here and reaching out.
I agree learning to be kinder to ourselves, to self-care, is the first priority, for us who aren’t used to doing that.
Yep livingwithfibro feels hard if we compare. So I don’t any more. I change what I can and radically accept the rest. That makes the hardness easy. Cos part of the hardness is not accepting. Praps easier for me, cos I’ve always lived in pain, long before fibro, and thought that’s normal. And worked at it and improved it. Now more than ever before, actually - just that the energy issue has taken over. But there again I’m thankful for positive progress, at least at the moment.
As I like to say and think and feel: I may not look fine inside, but at least I look fine outside… (My wife disagrees with me looking fine outside, cos she sees my ‘pain’, but everyone else does.) So when someone says “you like fine”, I answer, “well at least that” - and they understand. Because we’re by far not the only people who that applies to…
Hope you stick around and share as you wish and need! 
Hi JayCS,
Thank you for replying to my post, and for the warm welcome! I like your perspective of just not comparing to anything other people experience. I find myself trying but there just isn’t a way to do so. Yeah the energy limits are definitely tough.
The main stressor for me about people understanding my pain and illness deals with my work. I work as a warehouse worker who used to be an avid jogger and gym person, as well as was stronger than the men around me. I got so used to being able bodied and they all knew me when I was “fine” or “normal”. Now, I just don’t know how to explain to them. I usually say “I am in pain all of the time, in different areas, at different times, in different ways.” They don’t know what to say, and honestly neither do I. How do you explain to others that your body just “doesn’t work” like a normal body does, after all? But I am working on it. I take things one day at a time and have to prioritize enjoying one thing every day.
Great to meet and look forward to seeing you in the forums!
Yeah, I was all that too, and still desire to describe my momentary state in a nutshell, despite its complexity. But it just isn’t anything that can be “explained” in that it’s very hard to convey. I think your way of putting it sounds really good and already covers a lot. But often the most we can expect is that people realize we feel much worse than we look. To do that it’s important not to hide the bad sides, as many feel the need to do. If all people with invisible chronic pain etc. diseases hide, we are doing us all a disservice.
It very much depends on the person how we can put it best. When one elderly gentleman keeps asking “how’s your back?” I’ve learnt to suppress the wish to say it’s much much more than my back and just fill in how well I’m feeling.
When others ask how I am, I may not speak, just point my horizontal thumb more upwards or more or completely downwards.
People who know I can take it and want to follow particulars I’d at the moment describe to them that sleep, gut and local pains are brilliant, and energy is pretty good now, but since September listening to music or people causes me pain all over and then depletes the energy that is actually there. Then they could focus on empathizing with how difficult that must be for a musician and sociable person. Which actually isn’t true. Cos I’ve lost my desire for both. So it’s not missing it that’s difficult, but tolerating music and talk when it comes. So what their empathy does is make them “understand why” I don’t play or take part in social activities at the moment, why when I’m talking for a few minutes and music is playing in the background I can’t last for 10 minutes.
Actually when I describe to people (incl. docs) how I am at the moment, I use this to self-analyze. It makes me think about possible triggers, how my treatments are working or triggering.
The best ‘explanation’ someone gave on a forum (see above somewhere, too) was something like: Remember how you felt when you had your worst cold? And your worst flu? Everything hurts, you just want to lie down, you can’t think or see well, your emotions are down too. Now imagine you have either alternatively, never without for the rest of your like, just instead of the blocked sinuses you have countless other issues. At work, then add: But you cannot stay at home, you have to work, altho it hurts even more, and have difficulty thinking, it doesn’t stop once you get home, and you don’t recover in your sleep, you wake up worse than you went to bed… Wanna swap? (There’s a meme above for that, too.)
Of course this is also not “true”, but closer to felt truth than any true description which would have to go on and on for hours.
Yeah, enjoying one thing per day is a good start. With mindfulness it’s possible to enjoy every thing, colour, shape, smell at will. And the experiences that really grab me I put on my blog as “Reasons to be Cheerful”.
Hope to see you around! 