Off topic or fun thoughts: Having a chat with Hidden re... - NRAS

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Off topic or fun thoughts

Deeb1764 profile image
50 Replies

Having a chat with Hidden re fatigue and my day with it on Wed being so bad and the reply was the word fatigue is so inconsequential.

AND this hit me, it is such a bad word for it, as it does not describe the depth it can take you and make you sound like a Victorian woman having a fainting attack.

So any made up words or a better name for it feel free to throw a word out there!

Just a fun moment

50 Replies
Boxerlady profile image
Boxerlady

When I had it during peri-menopause (although my GP has since suggested that it might have been the RA starting to develop) I liked the term "crashing fatigue" although "crushing fatigue" might be better for RA.....

Sorry - not exactly a fun suggestion! 🙄😂

Deeb1764 profile image
Deeb1764 in reply to Boxerlady

Crushing is polite for sure!

Crush-tigue

Lolabridge profile image
Lolabridge

How about FLATIGUE!

Deeb1764 profile image
Deeb1764 in reply to Lolabridge

Hahaha yep this made me laugh!

Lolabridge profile image
Lolabridge in reply to Deeb1764

Glad you liked it 😂

Non functional is my polite word. Took me awhile to think this up as the others can’t be posted 😁🤬

Bootoo profile image
Bootoo in reply to

😂😂

Deeb1764 profile image
Deeb1764 in reply to

I know I am still struggling for a polite version especially after my window antics on Wednesday!

Deeb1764 profile image
Deeb1764

Zombie-tigue

tyncwmmarchhywel profile image
tyncwmmarchhywel

sorry cant think of anything remotely funny ,its horrid.

Deeb1764 profile image
Deeb1764 in reply to tyncwmmarchhywel

I know but there must be a better word to explain it surely! Fatigue is just not the half of it. Spent most of this week trying to remain in an upright position ...................

tyncwmmarchhywel profile image
tyncwmmarchhywel in reply to Deeb1764

Hi Deeb I think CripLady has it just about right.

CripLady profile image
CripLady

‘Tired’ and ‘fatigue’ really don’t cut it, but also, even if you try and explain people don’t always ‘get it’. I say it’s like being a toddler/ small child who is bedside themselves, because they need to sleep, so everything is just too much, and you just want to cry, wail and scream loudly 😂.

Deeb1764 profile image
Deeb1764 in reply to CripLady

Thats a good way to explain actually!

madme1 profile image
madme1 in reply to Deeb1764

That's why they call RA the sleeping sickness, which for me describes it to a tee as all I want to do is sleep but can't. There's tiredness, but fatigue is a whole different ball game. I think braindrain, and foggy brain come close as well😀

HappykindaGal profile image
HappykindaGal

Don’t know what to call it, but last week I was on a zoom call with one of my team and almost fell asleep mid sentence 😂😂😂

Deeb1764 profile image
Deeb1764 in reply to HappykindaGal

I did that Wednesday, my hubby had to slide me off a glass panel I had rested head on in a face to face re my illness!

HappykindaGal profile image
HappykindaGal in reply to Deeb1764

Oops! My lovely assistant who I was speaking to did find it hilarious and told me to go to bed 😂😂😂. I felt ridiculous

Sheila_G profile image
Sheila_G

Debilitigue!!

Deeb1764 profile image
Deeb1764 in reply to Sheila_G

Oh yes x

Lolabridge profile image
Lolabridge in reply to Sheila_G

Good one Sheila!

Bookworm55 profile image
Bookworm55

‘Inconsequential ‘ is definitely not the right word but I do wonder how seriously it’s taken by rheumatologists. The only time I mentioned it to one she looked rather taken aback and then asked if my iron levels were low. Fair question I suppose but it seemed very dismissive at the time.

Deeb1764 profile image
Deeb1764 in reply to Bookworm55

A lot of dismissive remarks made re fatigue and its frustrating as so many of us struggle constantly with it. And SLEEP does not cure it!

Bookworm55 profile image
Bookworm55 in reply to Deeb1764

No it doesn’t - which is a major problem in combatting it of course. I find it often comes on the day after doing ‘too much’ even though I’ve felt ok going to bed the day before. Managing it of course is far easier said than done.

CripLady profile image
CripLady in reply to Deeb1764

Amitriptyline 20mg at 7pm works for me. Knocks me out and I sleep very soundly now. Feel refreshed the next day. It helps me getting into ‘deep sleep’ which is what we need.

I was prescribed it by my Consultant, after I was diagnosed with additional Fibromyalgia (= 2 lots of debilitating fatigue 🥺).

Maureengibson profile image
Maureengibson

I also have adrenal insufficiency, so my body doesn’t produce the cortisol that others produce, which is needed to get you out of bed. I have to wait 1-2hrs for my steroids to kick in. The best way to describe it to others is when your phone battery flashes critical and refuses to function. Thankfully my hubby completely gets it, and brings me breakfast in bed. I agree though others just don’t get it. It’s like someone turned your tap on and drained you of all energy 🤗

tyncwmmarchhywel profile image
tyncwmmarchhywel in reply to Maureengibson

Good morning Maureen you said it to the latter.

Brushwork profile image
Brushwork

Interestingly I always say I have profound fatigue, as I feel it needs more. 😊🤔

medway-lady profile image
medway-lady

No don't it is a medical term and doctors take it seriously. If you say tired it doesn't carry the weight of fatigue. Think Chronic Fatigue Syndrome. I know what you mean but saying tired is ignored but fatigue isn't.

Mmrr profile image
Mmrr in reply to medway-lady

Fatigue is completely ignored by my rheumatologist...I was told I need to find a way to deal with it....end of.

medway-lady profile image
medway-lady in reply to Mmrr

Thats dreadful and just so ridiculous. I kept saying I was tired and exhausted to my GP and it was basically ignored then I said on advice of RA nurse as the RA was controlled to say fatigued. So I did and GP said we'll do another thyroid test. I've been taking thyroxine for over 30 years and the locum GP had reduced dose the previous January despite me saying please don't. Anyway did blood test and next day got a phone call to take thyroxine up to 175 mcg a day that was upped by 75 mcg. My GP said tired is fairly normal but fatigue is ongoing and should be addressed. Honestly it is such a bloomin lottery these days. I think we've got buzzwords now and my actual GP said when he rang to say up the dose after I explained this has now been going on for a few months, that he'd note on my records the dose was not to change without his input as he believed in treating the patient not the numbers. No fatigue since! I get tired of course and thats my fault as I've done too much but I don't wake up feeling tired normally as was often the case. I think sometimes everything is put down to RA but it may not be. Even the GFR increasing by a few points made a hell of a difference to levels of fatigue. x

Mmrr profile image
Mmrr in reply to medway-lady

I wasn't even told politely to deal with my RA, verging on nasty. I'm in the process of changing rheumatologist.

But I do have to say fatigue has been ignored by every professional I've come into contact with, some are more sympathetic than others ...awe that must be so difficult...change of topic.

I paid privately to have my thyroid bloods checked, all ok.

My fatigue is RA related. When the RA is better controlled, the fatigue lessens.

medway-lady profile image
medway-lady in reply to Mmrr

I am so sorry that you've got to change RA consultant, it makes life so much more difficult when someone is so rude. Being polite costs them no more time and is so upsetting for the patient. There was a consultant at my hospital who was known for rudeness and ignoring patients as my friend saw her. When my consultant left I was asked did I want to be transferred to her and I said no quite happy to see the Registrar. My fiend said she is impatient and unsympathetic to people and it was a case of she knew best! When someone's in pain then that is unacceptable but of course most people are too scared to do anything. I admit I'm scared of the way the NHS is going and feel we're being pushed to go private, not as a choice but because we have too. And after seeing the news today about dentists I'm really glad we have on even if he's private because people are pulling their own teeth out !

Mmrr profile image
Mmrr in reply to medway-lady

The issue with dentists has been brewing for a generation. The British Dental Association has been raising concerns about the shortage of dentists and the looming catastrophe for a very, very long time with no action from successive Governments. The payment scheme for dentists undertaking NHS work is seriously flawed. These are serious issues.

Importing dentists ( also medical and para medical staff) is not the answer. It's shocking, the arrogance and entitled attitude of Government(s) and their failure to act immoral. Why should other countries, often less wealthy than our own, pay to train staff for the NHS ?

I'm fortunate, the situation bad as it is in Scotland, isn't as bad as the rest of the UK.

I have a good NHS dentist, who believes in the NHS. I see him twice a year for routine checkups. I have several ongoing RA dental related issues . I have had a few emergencies since having RA, I'm usually seen that day, or an apology given if he can't see me until next day.

He told me that during the pandemic, his NHS practice was supported by his basic NHS salary and the furlough scheme. It was difficult, but he managed to maintain his practice totally within the NHS. He is married, three young children and has a good life undertaking NHS work he told me. He is not looking for wealth or riches.

(Unlike many private dentists, may I add. Trained from the public purse then cash in by doing private work, giving little back to the NHS)

His friend also a dentist, but totally private, complained he wasn't getting the same Government support and was 'frightened' about contacting Covid, once dentists began to open up again, as he would not be able to sustain the lost income. His practice could fold.

So be it, choices made about NHS or private practice. Do these people really expect the likes of me to fund their private income ?

medway-lady profile image
medway-lady in reply to Mmrr

I so agree, we've been with Dr L for many, years as he bought the practice from our previous dentist. I go regularly and so far RA has not impacted my teeth at all. I've a crown as smashed a tooth as a teenager playing hockey at school. But the rest are fine just a few fillings like most people. I've seen him once as an an emergency over Covid when I lost a tooth filling and it didn't hurt anyway just a bit awkward as was sharp. My fault though and he banned eating M and S toffee. lol I wonder what problems this latest crisis is going to do to the nations children's teeth. My granddaughter made us laugh she saw the dentist the other month for the second time aged 2 and was totally unfazed but a trip to the hairdresser resulted in hysterics. x

Green230461 profile image
Green230461

Fatiglue is how I feel fat and gluey with anti gravity boots on!

Deeb1764 profile image
Deeb1764 in reply to Green230461

It sounds awful but made me giggle as that is how I am feeling today just bluhhhhhhh

Green230461 profile image
Green230461 in reply to Deeb1764

Enjoy the opportunity to do something simple watch a rubbish rom-com or read a rubbish mag nothing strenuous just for fun. On days like this I become the L ‘Oreal girl cos I’m worth it!💐

Deeb1764 profile image
Deeb1764 in reply to Green230461

I will swish my hair and become L'Oreal girl 🤣

Green230461 profile image
Green230461 in reply to Deeb1764

🤩

MissMinto profile image
MissMinto

I say exhaustion, or ’waking up with a flat battery’

JRTprints profile image
JRTprints

I think my favourite description of fatigue is ‘Exhaustipated’ … which translates as ‘too tired to give a s**t’. 🤣

Deeb1764 profile image
Deeb1764 in reply to JRTprints

Oh yes top of my list x

CripLady profile image
CripLady in reply to JRTprints

May pinch 🙃

NanaFifi profile image
NanaFifi

I often say that “I hit the brick wall” or “my brain shut my body down”. Most of my family and friends get it when I say I was so tired I couldn’t speak, yes, I do speak a lot! 😂

Annpisan profile image
Annpisan

I'll often say "completely wiped out", or "nothing left", and this is a cue to hubby that if he wants a meal, he's going to be making it for both of us!!

Mmrr profile image
Mmrr

I say I'm like a burst ball.Flat and no bounce.

Deeb1764 profile image
Deeb1764 in reply to Mmrr

Actually I explained I was like a balloon released a year or 2 ago. Start the morning with the prednisone get a little bit hyper then I let go of balloon and whirl into a heap!

Neonkittie17 profile image
Neonkittie17

I said this a while ago .. my ex GP called my fatigue ... unprovoked exhaustion .. then added .. basically you’re knackered if you do anything or not!!

Deeb1764 profile image
Deeb1764 in reply to Neonkittie17

that is very good way to to explain it!

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