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Spoons! Support for those with chronic pain & fatiguing illnesses

(932 Posts)
Grockle Wed 03-Apr-13 13:48:24
fuzzpig Wed 03-Apr-13 14:21:47

Hello grin excellent title! x

justtired Wed 03-Apr-13 14:59:56

hello, thanks for the new thread Grockle x

CMOTDibbler Wed 03-Apr-13 15:10:16

Hello, I have crps, and nerve compression pain. I could do with more spoons!

IwishIwasmoreorganised Wed 03-Apr-13 15:16:40

Hi, I love the spoons theory!

I have hypothyroidism, and could do with a few more spoons each day - well at least to not loose my remaining spoons so spectacularly by mid afternoon.

My fatigue at times is so frustrating, but I don't feel anyone has any clue of quite how bad it is because I look completely euthyroid.

smilingthroughgrittedteeth Wed 03-Apr-13 17:07:08

Hello everyone

Im having a horrible time, my stomach is agonizingly painful 9 days post op, I went to the gp who says I have an infection in my pelvis, she gave me 2 different anti-biotics, one of which made me violently ill, im a mess and im exhausted, dp has turned into a full time carer and I hate it, I can even make it to the bathroom myself

Grockle Wed 03-Apr-13 17:44:04

Yay, I did something right!

grin

CMOT, what is crps? Iwish, no-one seems to understand the fatigue. I think I said on the previous thread that I wish there were a different word to describe the tiredness we feel. 'Tired' doesn't cover it.

Smiling, I'm so sorry you are so poorly. I hope the ABs start to work soon. I'm glad you have DP to help.

belleshell Wed 03-Apr-13 17:58:46

Smiling, yakult and those kind of things are fantastic to take with AB.... CMOT the fatigue is the worst thing ever isnt it... i can cope with the pain, and brain fog and all the other crap but the crippling fatigue is unbearable!!

thanks for new thread Grockle..xx

CMOTDibbler Wed 03-Apr-13 18:15:30

Grockle - CRPS is complex regional pain syndrome. Basically your nerves get confused and decide to report everything as pain. It also affects the blood flow, temperature control and bone density in the affected part.

I'm taking Lyrica at the moment for the general nerve pain, and it is helping a lot. Doesn't make me more energetic, but I still woken a lot in the night by one lot of pain or another

justtired Wed 03-Apr-13 18:17:18

Sorry your feeling so poorly Smiling. hope you feel better soon thanks

I totally agree with tirdness thing, I am yet to find a word that is big enough to describe it to people who dont know. ive had people say why dont you just get up and do something.....no idea in the slightest! But as you say because we look ok on the outside people think im alright.

Hi all mind of I join in ?
I have hypothyroidism, uncontrolled for 7 years now unfortunately I have high blood pressure and now irregular heart beat and tachycardia

I also have recently been diagnosed with psoriatic arthritis which is horrendous
I'm just so tired and ill all the time. I used to be so slim and fit and active it's hard to accept

fuzzpig Wed 03-Apr-13 18:23:42

Yay more new people (well not yay that you all have pain obviously!) welcome to a very supportive friendly group smile thanks

By way of introduction I am 26, last year I was diagnosed with CFS and POTS (postural orthostatic tachycardia syndrome).

Pain hasn't been so bad this week, but the exhaustion is just bone-crushing.

fuzzpig Wed 03-Apr-13 18:26:14

(Sorry, 'bone-crushing' is just the way I describe the fatigue to a few people, I don't use it at work as I know it sounds a bit morbid blush and I worry people might consider it melodramatic... the description fits though!)

RoobyMyrtle Wed 03-Apr-13 18:28:05

Hi, another one with POTS and CFS here. I'm generally doing quite well, but this weeks it's my twin's birthdays. With EAster, two teenage parties to organise and a bit of DIY thrown in for good measure, I'm knackered. I should be cooking (actually already cooked) dinner but literally cannot get off the sofa. Everything aches so much...

Fab41 Wed 03-Apr-13 18:34:47

Hi, I have fibromyalgia and various other associated ailments. I have been off work for 2 years now, and have been signed off for an 'undetermined length of time'. Not liking this cold weather either!

Grockle Wed 03-Apr-13 19:00:04

Welcome Fab41, Korma & Rooby, sorry you have to join us.

It is very difficult to adjust to the life changes we need to make & to accept that we are no longer the active, healthy women we were not so long ago. I don't know how to accept that this may well be permanent.

I never thought to introduce myself properly... I'm 35, have Meniere's disease, Lupus, Fibro & long-term issues with depression. I'm one of those patients that my GP's heart sinks at when he reads my name on his list.

justtired Wed 03-Apr-13 19:08:18

ohhh bone crushing- now that's a good description but I agree that people would probably think I was just being over dramatic if I used the terminology.

I am 29 and have CFS and Rhuematoid Arthitis along with a few other things but they are the 2 most problematic ones.

welcome to the newbies thanks

Badvoc Wed 03-Apr-13 19:23:36

Hello!
Found you!
I have Cfs and fibro.
I am 40, married and have 2 dc. I am a sahm.
Have had Cfs for 20 years nearly now sad and was dx with fibro 2 years ago.
No meds, other than ppi's for GERD and pain meds which I take most days.
Struggling ATM.
Had flu at the beginning of march and it really knocked me for 6. Just can't seem to get going or muster any enthusiasm for anything, which is unlike me.
Have already spent an hour in bed this evening after dh got in from work. Am in bed by 8 most evenings and am just...exhausted.
Sorry so many of you are feeling the same x

Badvoc Wed 03-Apr-13 19:24:30

...oh, forgot the gynae issues and herniated disc! smile

Grockle Wed 03-Apr-13 19:25:42

I tell people that the exhaustion is in my bones. I can't describe it any better but bone-crushing is good. It might sound melodramatic but it's not... that's how we feel.

It's so hard to describe everything to people who don't know. When I get the shivers, I tell people that I feel like my blood is cold. It feels like my bones are ice. I wonder if there are any good descriptions if I google. I shall look later.

Badvoc Wed 03-Apr-13 19:28:12

My mil always knows when I am "going down" as she calls it.
And says I visually change colour and she can see the energy drain from me....
I remember once going Xmas shopping with her and being in a lift in john Lewis and actually sliding down the wall of the lift onto the floor!! Most embarrassing.

Badvoc Wed 03-Apr-13 19:29:19

Ah, yes.
The coldness.
It's all pervading. Dh just doesn't get it. He simply can't get his head around someone being cold if he isn't!

fuzzpig Wed 03-Apr-13 19:32:48

Interesting you mention colour draining badvoc - my legs and feet look genuinely grey at the moment confused

Hello all. Great title grockle - you do loads right!

I have undifferentiated spondyloarthritis and am generally crap. Pain and fatigue. You all know the drill.

DS2 is off nursery with the runs. There's nothing wrong with him other than that though, so it's an all out hyper 3 year old fest. I have loads to do at work and no energy whatsoever. And H is being completely useless, as usual. Today's counselling session was awful. He just kept going on about how my illness makes everything crap for him (because I just love having no energy, being in pain and taking handfuls of painkillers!), and some nonsense about how I'm holding him back from a dream career that will never happen because he can't get an interview at the sort of institution he wants to work at not because he's unable to jolly around the world on a whim. I think the problem really is that he is unbelievably selfish and self-absorbed. sad

fuzzpig Wed 03-Apr-13 19:33:48

And yes I've had real issues with coldness just lately, particularly hands and feet, not sure if it is a circulation issue.

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