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Spoons! Support for those with chronic pain & fatiguing illnesses

931 replies

Grockle · 03/04/2013 13:48

Spoon Theory here

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Badvoc · 13/04/2013 15:54

Hand...gosh you have every right to whinge! Whinge away!
I am very sorry to hear about you and our dp.
That must be hard.
There is absolutely no point my applying for any benefit, so I haven't. I just wouldn't get it.
I am too good at papering over the cracks :(
I have had Cfs/me for...bloody hell, 17 years!
I have 2'dc and - at times - feel like the worst mother in the world.
There is a future for you, just not he one you planned or hoped for x

Grockle · 13/04/2013 16:00

Welcome newbies. Sorry you all have to join us & sorry so many are unwell.

I'm having a bit of a crisis, well a big one really...I'm all over the place physically, emotionally & it's sending me over the edge mentally. I have never, ever been so shattered. I don't know how I'm going to manage work next week. I'm having to sleep every day for hours. I wake up 3 or 4 times a night. My legs hurt all the time (although not the awful pain I used to have) & i can't remember anything... I'm scared about the future - now DP has gone, how do I manage? How do I support me & DS if I can't work but cannot get DLA? How do I pay my mortgage (and my mortgage is a lot lower than a local 1 bed flat). I've been unemployed in the past but never have I been so fearful of the future. So, I sympathise with you, HandDived...

Fuzz, I also have clots - lots atm but that might be due to whatever is causing my other period-related problems. I've been bleeding for 3 weeks now Hmm

Thank you to those of you who posted on my other thread or PMed or texted me. I'm sorry for being so crap & for any worry I caused. I'm not really ok, but I will be...because I have no choice. And that's what's so hard - I don't see how I can change any of this & make it better for me, for DS, for anyone.

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belleshell · 13/04/2013 20:07

hi all, i know we have talked way in the past about twitching, mine is really bad at night.... its like involutary movement, usually its my legs they jump.... and then it makes me jump!!

also the itch thing...do you all take tramadol... ive had it last few days due to viral thing, and headaches and once again i have come out in lumps that itch like hell!!

fuzzpig · 13/04/2013 20:34

I've never tried tramadol. Too scared to having seen what DH went through on it.

Am taking some extra painkillers tonight though as my knees are screaming. They feel like ancient iron hinges on a massive castle door that hasn't been opened for a hundred years.

Grockle · 13/04/2013 20:38

I itch a bit but don't think it's Tramadol related. Tramadol seems to have no effect on me at all - nothing weird or scary & little painkilling.

The twitching thing comes & goes. I get it in my arms too. Sometimes I get it during the day as well, but a bit differently, almost like there are lots of electric shocks in my muscles Hmm

I've spent the evening in bed with DS watching The Voice. It's kind of nice to be able to go to bed early but still interact with him.

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Grockle · 13/04/2013 20:38

Lovely description, Fuzz. That's how my legs & hips often feel - like they're made of iron and not been used for years. If only a bit of WD40 would help.

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CMOTDibbler · 13/04/2013 20:41

Belle, have you looked at restless legs?

I don't itch on tramadol.

Neri, I have a full fusion of my wrist on one side, and now carpal tunnel/cubital tunnel on the other. My favourite wrist support is the wristeasy, but I've had all sorts of supports and compression gloves made by the hand therapists and they were amazing. If you don't see a proper specialist hand therapist, I'd push for it strongly - my physio is/was amazing, but the hand therapists were able to do so much more

Badvoc · 13/04/2013 20:52

I get the twitching.
Its called fasculation i think.
Doc gave me a great ointment for my skin...called epaderm

belleshell · 13/04/2013 20:55

its back to that lead suit.like you see in musemnit weighs a ton but need oiling in all the right and wrng places,,,,,, i picked treacle on the grandnational lalst week because i cosnstanlt feel im treading through treacle...

ClayDavis · 13/04/2013 21:06

Any more room for another one in here?

Grockle · 13/04/2013 21:25

Plenty of room, clay. Bring your hot water bottle & electric blanket & come to bed with us Grin

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ClayDavis · 13/04/2013 21:51

Grin. No hot water bottle or electric blanket. But tucked up on the sofa with a duvet.

Am 30, have chronic recurrent depression with fatigue as a huge symptom, hypothyroidism and GP has floated the idea of CFS but I'm not really convinced.

evansthebread · 14/04/2013 01:07

New to this thread. Can I join in?

I have a few painful conditions - CRPS, pseudo-gout, IBS and fibromyalgia are the main ones. I was also tentatively diagnosed with MS in 94 after losing the sight in one eye for several months. They didn't want me to go through a lumbar puncture so told me to go home and live life - which I absolutely did.

It's raised its head again recently, though, so I'm now waiting for another MRI.

I can cope with the pain for the most part (though it definitely aggravates my depression and anxiety), but the fatigue is crushing. And the lack of sleep awful. I wake most mornings feeling like I've spent the night in a cement mixer with a few bricks thrown in to keep me company.

The absolute worst thing, though, is stress. It makes everything a million times worse. And, boy, am I going through some at the mo (I have a thread in Legal).

I've spent an arm and a leg trying things to make me feel better, but heat seems to be the best help. I can't tolerate an electric blanket as the wires hurt, but I did invest in a bed warmer that I stick on for an hour before bed (£15 from Lidl, along with a remote control socket set so I don't have to go upstairs to switch it on). I bought microfibre bedding (QVC - the Lidl stuff wasn't soft enough) and it's brilliant! I sweat stupid amounts for the small chunks of sleep I have. My cotton sheets would get so wet that the wrinkles where I'd tossed and turned would be rock hard and dig into me. The m/f bedding stays put without wrinkling and if I give it a flick off me the sweat sort of flings off! It doesn't feel cold and soggy when I get back in after a loo trip either. Amazing stuff.

Finding a pillow was a real challenge! I alternate between a Snoozetime microbead and an Ikea memory foam job (that's meant to be used with a padded outer cover but I just use one of the m/f pillowcases that came in the set under a cotton one. Much as I love the m/f bedding, I couldn't cope with the pillowcase).

I keep warm in the day by sticking a (Lidl) heated gel pack down my vest! Real sheepskin slippers are the only things that keep my feet warm around the house, but Fitflops are the only things I can walk in. I take my gel pack to bed to keep my hips warm (side sleeper - I roll over every 45 minutes - anyone else like this?) and a microwave wheatbag to keep my feet warm.

I hope some of my helpful-to-me measures can help some others here if they want to try them and that we can keep this thread going to support each other. No matter how hard our families and friends try, unless they know what pain and fatigue 24/7 is like to live with themselves, they can never really understand.

evansthebread · 14/04/2013 01:09

PS

How could I forget my best friend, my Lidl heated throw (for when I'm downstairs "lolling" - as my PIL call it - on the sofa).

belleshell · 14/04/2013 08:01

Welcome evansthebread... Are you me in disguise. I was screened twice for ms, although the last MRI showed early demilination I was told it wasn't ms.... My me diagnosis came 3 years later. As for night sweats I have changed me 4 times in the night and eventually stripped the bed at 5am, I've had a bath too so feel like its midday!
It's getting worse the night sweats but it happens the week before my period is due. My dp (who is away this weekend) says I'm like a fire in bed ( and I don't mean hot in that sense heehehe ) if I'm like this now god help the menopause...... I will need to sleep in the bath.

neriberi · 14/04/2013 09:02

Thank you cmt! Unfortunately a hand therapist can't help me (Ive seen several who have all said the same) without giving a complete medical A-z of why, the short version is that I don't have the rights bits for them to work with in order to help me, I've got missing muscle, tendons & ligaments in both hands with one being worse than the other. I will check out that wrist support mind you Smile

Welcome to the thread newbies!

Grockle · 14/04/2013 09:05

Evan, your post describes it all so well. I've had a 'good' night's sleep - only awake several times through sweating & shivering. Sheets are soaked & I only changed them a couple of days ago... I can't be having to change & wash bedding every day. Microfibre bedding sounds very sensible.

I feel hungover & fluey. HTF do I manage work tomorrow? I feel ridiculous wandering around with clutching a hotwater bottle.

It's no longer the pain that is the main issue - it's the fatigue. And the brainfog.

I'm looking at the poor dog wondering how I'm going to walk her.

I swear this is going to kill me one day.

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neriberi · 14/04/2013 09:06

Grockle - I hope your feeling a bit better today?

HandDivedRaspberries · 14/04/2013 10:39

Oh Grockle, I've just seen your other thread.Sad If I spare strength, I'd send it to you...

belleshell · 14/04/2013 10:47

Grockle you dont go..........you get D to school, cme hme, set alarm clock for half hur before you need t get D and you go to bed, that is after you have made an appointment to see GP. You have to be fair to yourself, and playing devils advocate those you teach and those you work with..... we are only a number in this life, they will cope if your off, ging to work like this will only make your life worse...not theirs, they will still go home, maybe someone will have made there tea, tidied up a bit walked dog..and they arent ill.you are. The only way to get through the fatigue is rest...not pushing on until you collapse either mentally or physically...

I hope you dont think im nagging im not far from it, im concerned and care Flowers and BIG HUGS

CouthySaysEatChoccyEggs · 14/04/2013 11:54

Treading through treacle!!!

That is exactly the phraseology I've been using since I was 15, when I started getting the migraines and depression symptoms, and the 'blank' periods.

I've never heard anyone else describe feeling like that. It fits it to a tee - I've always said that it feels like I'm wading uphill through treacle!

I use Cura-Heat stick on warming patch things. Best thing I've found to help - though some days I can be covered in them! Blush

fuzzpig · 14/04/2013 12:11

Tempted to try the heat patches. I've seen them in boots.
Wondering if there's anything like that you can get on prescription (we have an exemption cert) - does anyone know? Was also wondering about the bath salt things.

Have to say thankfully the ibuprofen helped and my knees are ok. NOTHING helps the fatigue though does it. Similar to grockle, that is my worst symptom ATM.

Yesterday at work I was battling to stay upright and conscious. This sounds really awful but I actually in some way kind of wanted my body totally give in to it and faint, because then people would actually see that I am really ill. :( Blush

Have any of you told doctors about night sweats BTW - sorry to be a scaremongerer (?!) but when my DH recently had an inflamed lymph node, the doctor was very insistent that he see him immediately if he got night sweats as it could be a sign of something worse in the lymphatic system.

ClayDavis · 14/04/2013 12:35

I totally know that feeling, fuzzpig. I've been known to wish I could break a bone or something, because a cast or some crutches would be a massive great hint that I am ill. Have also done the wanting to faint thing.

fuzzpig · 14/04/2013 12:48

It would be less scary if I didn't work with the public Blush fainting in front of loads of customers would be awful. I am quite lucky I don't frequently faint though, apparently many/most people with POTS do faint a lot.

Sorry I totally forgot to say hello to our latest newbies :) Thanks

Grockle · 14/04/2013 12:51

I've collapsed & fainted at work Blush

My drs know about the night sweats - my GP did a massive assessment when I mentioned them - urine tests, physical examination etc. when my dad had lymphoma, night sweats were his primary symptom so he panicked when I told him about mine. Def needs to be checked although if its to do with fibro/ me/ lupus, apparently there is nothing that can be done. Hmm

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