Spoons! Support for those with chronic pain & fatiguing illnesses

[Grockle]

Spoon Theory here

[buildingmycorestrength]

Have not minded manners at all sorry all. CFS for a year.

Itchy shins, OMG YES! Dr said there is poor bloody supply to the shin generally and given how cold we all are it is prob a circulatory thing. He suggested moisturiser but the only thing that stops me itchng til I bleed is willpower. The sensation goes after a bit if I distract myself.

[Badvoc]

That was me magso.
I scratched mine so much yesterday they bled!
It's very very cold in here today!

[neriberi]

Afternoon ladies . I hope you all had good weekends?

Apologies for not replying to the posts (belle), I had a doctors appointment Friday that left me needing a really stiff drink and a proper rant at a wall or something else with more listening power than than GP (not my usual GP btw), in the end my DH had the pleasure of listening to my rant plus I try not to check or look at any social media over the weekends so that my family get a little bit of me to themselves.

I've been thinking lots about all that's been written on here and was going to ask if any of you mourned your "old life" and its obvious we all do. When I got pregnant and eventually found out about my DBA my life as I knew it just stopped, there was no time to ease myself out one life and ease myself into another, it just stopped and I mourn the life that went before, I still grieve for everything that I planned to do and I grieve for the person I was, I know I will never be that person again but I do wish that some semblance of that person still existed in me.

I've allowed myself to wallow a bit this weekend, so the other thing that struck me after reading this thread was how much I've missed out on with my DS. My DS is only 2.5 but because I've been going through the whole diagnosis thing since pregnancy I feel as if I have missed those first years of his life, I can't remember him as a baby, I look at pics of him and there are whole missing chunks from that part of my life, I think I was so focused on trying to keep it together that I unintentionally shut myself down and detached myself my situation in order to keep going, I was just wondering if anyone else has felt like that? Or done that?

The other question I was wondering is if anyone else has falling out hair and bad nails or terrible skin? I get really tearful over my hair falling out and my nails are awful, I know it's uber vain to be bothered by it, but when my hair falls out and my nails keep peeling it reminds me that my body is a little bit broken.

[Badvoc]

My hair is very thin now, and falls out at an alarming rate.
Nails have always been a bit dodgy from years of biting them as a child.
Skin also not great, but I have actually found something that doesn't cause irritation...liz Earle botanical.
The super skin is great and has made my skin look better.

[gallifrey]

omg yes I get terrible itchy shins too! Drives me mad

[Grockle]

Hope the windows are ok Badvoc. Mine were done in April but last year when it was hot. I was thinking about the itchy shins... I don't get that any more but I used to get bad eczema on them & the itching would drive me mad, to the point of bleeding a lot. I wonder if it isn't eczema but something related to this.

I have falling out hair (a lupus thing, apparently) & crappy nails - they break & never grow long.

[fuzzpig]

Wow, other people get itchy shins too! Hooray! (IYSWIM :o)

I first noticed it during my first pregnancy - during things like washing up my lower legs and ankles would drive me insane with tingly itchiness, and I'd be hopping from foot to foot, trying to rub one leg with the other etc.

I had wondered if it was something to do with circulation/POTS etc. I have always struggled to stand upright, even before the extreme dizziness kicked in, I'd be shifting my weight between feet constantly and wondering how other people managed to stay still!

Hair loss - yeah, I lost the expected amount after the birth of DC2, but then unlike with DC1, it didn't stop! He is 3.7! Thankfully I have (had) ridiculously thick hair anyway, so it doesn't show up too much.

So, today - well, I felt REALLY shit when I arrived, a friendly colleague asked how I was and gave me a hug and that opened the floodgates a bit - later cried loads in front of my manager, it is just so overwhelming and scary.

They nearly sent me home actually as they said I didn't look well enough to be there but I said I am unlikely to be much better than this for several months so I may as well try now. I have got my new timetable anyway.

I only did about 90 mins worth of work today so not too bad, but we will see what my next shift (wednesday) brings :(

[neriberi]

@Badvoc I've been told Liz Earle is good for skin by a few ladies now, I will have to check it. At the moment I use Nude Skincare which is expensive but it seems to work...

What does everyone do for their nails? I've tried everything under the sun and they're still shit, but not as bad as my feet, I seem to lose my toe nails on a regular basis, it drives me insane.

I've given up on my hair, I had really coarse thick hair (and loads of it) before I was pregnant, now its just a frizzy limp mess and comes out in clumps, luckily I've got so much of it that no one apart from me really notices. It does sadden me because my hair used to be this amazing unruly mess and now its just shit.

[Badvoc]

Well.
2 windows done as the fascias are knackered :(
£2.5k to sort.
We haven't got itso we are converting one window to a bottom opener.
Sigh.
And ds2 has been dx with asthma :( I know it's great he has meds that will make him better and that we have a follow up appt in 2 months BUT am feeling very low about it.
Everything feels very relentless ATM.
Which is silly. It isn't. Things are much worse for others.
First world problems and all that.
So glad I am not the only one with itchy shins!! :)

[Badvoc]

If you go on the liz Earle website they do special offers and you usually get a free gift with each order too :)

[CFSKate]

CFS/ME people, there is a vote to win money for Invest in ME research, please vote if you can and pass it on.

[magso]

I changed over to LizEarl clean and polish about a year ago and my skin (prone to the rough red triangles) is better than it was. I am less sure about their moisturiser.
Tick to the falling out hair - and not associated with pregnancy. I had thin hair to start with, but now it is extra thin and I have not found any solution. Dh bought me a leopard print hat and a wig - which are not quite to my taste but are useful.
I wondered if the itchy shins was vascular. I think the achy leg pain I get may be due to PoTS, although it can be almost as bad lying down.
I use an electric blanket to get warm but can usually only tolerate the lowest setting. I can at last rest sitting up now which makes life so much more manageable.
Yes I mourne the lost life but I have hope I will get to a better level.

[belleshell]

Codeine can cause itchyness....i cant use certain brands of co-codamol due to the itch i have to have a certain brand, zapain drove me insane... if you can face going to GP you could ask for a different brand. the GP or nurse practitioners just need to state on the prescription which type.

Fuzz did you sort your hours out?

Grockle im glad your feeling a tad better.

AU enjoy the break from H, sounds like you need a few days away from him, and let the PIL help out as much as possible.

hope everyone else is ok.....

love and spoons to you all

[crashdoll]

Can I please join the party?:) Sorry I'm late, I have a few small spare spoons tonight.

I have Rheumatoid Arthritis. After 3 years of uncontrollable severe disease, it is finally somewhat under control. I am now classed in the moderate category (at the lower end) which is good but I've been left with joint erosions and the pain in my damaged joints is indescribable. The fatigue is nowhere near as bad as it was when the disease was really active but I always feel short of spoons. I had a flare up a couple of weeks ago and all I could do was sleep all day and all night. I also have a suspected autoimmune thyroid condition. Bloods showed low T4 (I think it was that!) and an ultrasound of my thyroid showed it is inflamed. I?m seeing an endocrinologist later this week and I?m hoping for answers.

I was wondering, has anyone been referred to a podiatrist and was it helpful? It's last chance saloon before I'll have to seriously consider the option of surgery which isn't really an option at all. Both feet and ankles are in a bad way and all I can think of is "I wouldn't even know what foot to choose first!" I've been down the orthotics route and found them very unhelpful. I feel very hopeless and wonder if I'll ever be able to walk properly again.

[Grockle]

What a day, Badvoc Be kind to yourself.

Welcome Crashdoll. I'm not much help, I'm afraid.

Why do I have spots? I haven;t had them since I was about 13.

[ArbitraryUsername]

Hi crashdoll. You are most welcome at our fairly sedate party (where everyone goes to bed early).

Well done on managing 90 mins of actual work, fuzz. And I don't mean that in a patronising way at all. Sometimes 10 minutes of work seems impossible, so doing 90 minutes is definitely something.

I get itchy shins too. I get itchy everywhere actually. It isn't necessarily related to medication in my case (although it is just ridiculous if I take tramadol; I tear my skin to shreds in my sleep and have to use every ounce of will power I have to not do so while I'm awake). I'm generally just itchy though. My shins, upper back, face and scalp seem to be the worst places for it, but sometimes i just itch everywhere. I get itchy inside my joints as well as in my skin if you see what I mean. It's horrible when you feel itchy inside your knee or hip as you can't even scratch it and make it bleed.

My hair falls out too now. I just find hair everywhere. Luckily I had lots of hair to start with (all quite fine, but hairdressers always used to comment on how bloody much of it there was). I also tend to twist it around my finger when I'm stressed (or very tired) and that makes it fall out more. As I'm always tired and frequently stressed these days that's an increasing issue. I need to stop myself doing that. (It's not trichotillomania, or however you spell it, as my intention has never been to pull the hair out; I just twist it into little knots and the hair falling out is a completely unintentional side effect).

I went to work for the afternoon today to have a meeting with my (utterly lovely) colleagues. It was quite sweet. People were talking about how tired they are (at this time of year, everyone in universities is pretty exhausted- I'm sure it's similar for schools) and one of my colleagues said something about how it's nothing in comparison to how I probably feel all the time. It's amazing how helpful it is to have someone understand that I suffer from something way beyond ordinary tiredness, and certainly nothing that can be made better by a week's holiday (if only!).

[ArbitraryUsername]

Sorry about the windows badvoc. That sounds really frustrating. £2.5K sounds a lot for fascias (and certainly not something many people could pull out their back pocket unexpectedly), but I have no idea how much anything should cost.

[Grockle]

Arbitrary, that's very reassuring that someone acknowledged that no matter how tired they are, it is nothing to what you feel. How lovely. I think that makes a world of difference.

Fuzz, have a rest tomorrow & hopefully wednesday won't be so bad.

[Grockle]

I don't understand the window/ fascia thing. I know when I had mine done (windows for the whole house plus gutters, soffits & fascias), it cost an arm & a leg.

[ArbitraryUsername]

We're up north and FIL was taken aback by how much cheaper it was to get our windows done up here than it would have been down on the south coast (where he lives). He's always amazed at how much cheaper stuff we get done for the house is. It seems to be because all the factories are up here so the tradesmen get stuff straight from the manufacturer and the lower cost of living probably helps too. FIL is a tradesman himself so he often tells us how much a job will cost and then the quotes come in much, much cheaper.

[Grockle]

Amazing, isn't it? Property too. I sold my 3 bed semi with garden & garage in Yorkshire & couldn't afford a 1 bed flat here.

[ArbitraryUsername]

Yes. If we lived where the PILs do, our house would cost more than double what it did here (and it wouldn't be in as nice an area). If we were where BIL lives, I dread to think!

I can't sleep. Itching and my bum is sore (it's the SI joints, but it feels like a generalised sore bum with extra pain in particular places). Bleurgh.

[Grockle]

Ouch, that sounds uncomfortable. I am itchy too - I think it's the talk of itchiness on this thread that caused it. All over my back. I was woken up by pins & needles in my arm & can't get back to sleep now. The extra Tramadol did not help me nod off. I need to find something else.

[CouthySaysEatChoccyEggs]

Another itchy one here. My hips are hurting too, I keep lying on the other side, but still can't sleep.

[Grockle]