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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

See all MNHQ comments on this thread

AIBU in thinking that Mumsnet needs a Chronic Pain Board

495 replies

Ouchwtfthistime · 26/02/2021 18:04

Because we need to talk about:

  1. Denial
OP posts:
Thread gallery
5
Furries · 06/03/2021 15:23

I used to love reading, could easily read a book in a day on a sun longer holiday! Don’t enjoy it as much now due to brain fog, keep having to reread paragraphs to digest what I’m reading.

I can’t draw/paint, but have recently discovered diamond painting, which is a great way for me to switch off. No brain power needed. Finished this handsome chap a few days ago.

AIBU in thinking that Mumsnet needs a Chronic Pain Board
picklemewalnuts · 06/03/2021 17:27

I miss reading, too! I just don't have the focus now. I mean, I read, but not the way I did.

doadeer · 06/03/2021 17:38

Would you fancy audio books? I quite like them. And I like the calm app sleep stories. I find it hard to get comfortable and very hard to switch off. I run a couple of businesses and mentally it's very draining on top of the pain, fatigue and a 2 year old!!

picklemewalnuts · 06/03/2021 18:22

That's impressive, doe!

I like audio books when I'm driving, but not at home.

Domino20 · 06/03/2021 18:30

Excellent idea.
Chronic pain board please mumsnet.

I'd like to discuss ways to manage my temper. Pain makes me so quick to anger and whilst I understand this must be awful for other people it'd be great to talk to people who understood that it's also pretty shit for me.

InMySpareTime · 06/03/2021 18:50

I'd love a chronic pain board.
A place to discuss the odd unexpected side effects of using all your attention to cope with everyday pain.
I can't remember names any more, which makes describing TV shows, er, challenging!
I have come up with some interesting new names for things when my word-finding skills desert me.
Whirly-windy-er for Fan
Roundy bread salad meat for kebab
Dinner poke for fork
Hot dinner lettuce for cabbage
Person sink for bath.

I honestly did used to know lots of wonderful useful words, but not so much nowadays.

RitaFires · 06/03/2021 21:01

Thanks @Sooverthemill I have found one local to me that's private only. I'm happy to pay if it means I get answers. I also feel like it would make it easier to get my GP to make a referral if I explain it as I want to know for my own curiosity.

@Ouchwtfthistime I'll definitely make a list, I want to see somebody with experience with EDS because my skin is definitely soft but is it stretchy enough? I have those bumps on my heels but I don't know if my feet are flat enough etc. I'd rather someone tell me straight than enter into a debate.

@InMySpareTime I can totally relate to making partial descriptions of things because I can't think of the word luckily my partner always seems to understand what I'm trying to say.

Sooverthemill · 06/03/2021 21:16

@RitaFires I totally get where you're coming from. My DD was told at age 14 she 'almost certainly ' had EDS but there was no point in ours hung for a diagnosis as she was so ill ( being tube fed ) and to my shame I didn't push it as I couldn't bear another hospital admission ( she had been in hospital for 6 out the the previous 12 months) and I trusted him ( I still do, he was fab) but I'm angry that all the symptoms she had her whole life up until then,( sub Luxing, terrible agonising'growing pains', bruising, jaw pain, dizziness and fainting for a few) were never taken seriously by GP or her paediatrician ( we change paediatrician when she was diagnosed with ME) and if they had been she could have had some treatment. Now our GP says as she can't travel what's the point? But I cannot stand another day or night of her agony and her terror that she will always be like this, in pain, in the dark, bruised by a cat sitting on her, unable to hug anyone, no future. If GP won't refer we will pay privately which is what we did last year for a minor procedure which has improved her life considerably but cost her 3 months in total silence barely eating , not moving ( because of the payback for the energy it used). Sometimes I think it would be best if she died, but I know that's a dreadful thing to say

So a pain board would be good @MNHQ

Domino20 · 06/03/2021 21:18

@InMySpareTime
God, I do that lost word thing all the time. Makes me feel so dumb.

colouringindoors · 06/03/2021 21:20

InMySpareTime omg thank you. The word thing is massive. I was wondering about early dementia.

colouringindoors · 06/03/2021 21:21

Soover

TaraR2020 · 06/03/2021 21:22

@Domino20

Excellent idea. Chronic pain board please mumsnet.

I'd like to discuss ways to manage my temper. Pain makes me so quick to anger and whilst I understand this must be awful for other people it'd be great to talk to people who understood that it's also pretty shit for me.

I understand this, sometimes i don't realise just how much pain I'm in until I've bitten someone's head off and then I feel terrible.

Lately I've found slowing down, spending more time just resting has helped as I've become much more attuned as to how I'm feeling physically and mentally but changing pace was difficult before covid.

colouringindoors · 06/03/2021 21:22

Oh and apparently the @mnhq thing does nothing.

If you really want mumsnet to read your post, you have to report it.

RitaFires · 06/03/2021 21:50

@Sooverthemill I'm so sorry to hear what your daughter is going through. My father was diagnosed with ME and basically just given medication to treat the symptoms and left to it, he died very young of a heart attack which I personally blame on the amount of painkillers he was prescribed for the pain. It's so difficult to watch people you love struggle and be bedbound.
I hope they find some treatment that helps your daughter. The only upside of so many people suffering from long covid is that it might encourage more research into supporting people with fatigue related health issues.

fuckoffmrtumble · 06/03/2021 21:54

And tonight its all about my hands.
Yep, those things on the end of your arm that are kind of useful for doing just about anything. Except mine just want to curl up and do absolutely bugger all. They're definitely not useful tonight- if anything absolutely the opposite. Hand wraps are doing feck all, the bath worked until I got out of it, the wheat bags dont seem to be doing much either.
And I've just discovered I can do a whole online shop and order a takeaway using voice activated software (Dragon) on my laptop.

It was kind of my fault though- I was outside talking to a neighbour while our kids were playing and I forgot to put my gloves on. Well, the converstaion was good, and the kids were playing nicely so I kind of forgot about the time. But seriously, its March FFS and I'm still wearing the kind of gloves that have a tog rating.

I know I'm whining, but does anyone else have crappy hands? Or hands that seem to function on a part time basis when the weather is a) not cold and b) not raining

Becca19962014 · 06/03/2021 21:55

@Sooverthemill I hope she can get to see a specialist in EDS who can help her.mmy friends daughter had ME very severely and ended up dying, it was a horrible time as it was so unexpected I put a post about it on here and got a lot of abuse because ME is "nothing". It was horrible and around the time there were a lot of issues around disabalism on MN and a lot of people left as a result of it.

You don't want your daughter to suffer, that's what you mean and that's nothing to feel guilty about.

MedusasBadHairDay · 06/03/2021 22:02

@Domino20

Excellent idea. Chronic pain board please mumsnet.

I'd like to discuss ways to manage my temper. Pain makes me so quick to anger and whilst I understand this must be awful for other people it'd be great to talk to people who understood that it's also pretty shit for me.

DH complains that I get grumpy/quiet when my pain spikes. Like this is at all unexpected?!
Sooverthemill · 06/03/2021 22:22

@Becca19962014 I’m sure I know the person you mean. It was a big deal in the ME community. At the time I was terrified it would happen to my DD. Now I’m not sure if I can see her suffer like this . It’s totally shit and with no pain meds but calpol ( she can’t tolerate tablets because of hypersensitivity) it’s so hard. NHS gave us a pain pack with mindfulness and positive thinking techniques. We have a palliative care nurse allocated but even she can’t get her morphine by IV and hasnt been able to visit even just to be kind to me for over a year.
Thank you it helps knowing you understand

Akire · 06/03/2021 22:29

My hands have times when they are rubbish. Had replace all my cups and plates with plastic ones that I could more reliable lift when using without dropping them constantly.

TotorosFurryBehind · 06/03/2021 22:35

Agreed. Many conditions causing chronic pain affect more women than men and Mumsnet is supposed to (primarily) be a site to support women.

Becca19962014 · 06/03/2021 23:20

@Sooverthemill actually I think you might be thinking of someone else, was there a book about the person you're thinking of? Because that happened before what my friend went through.

Dreadful situation all round. For them both, and I possibly others as well.

The mindfulness and positive thinking didn't help me at all, but worse was the visualisation of how I wanted my life to be - the last was devastating because I know with EDS it gets worse past 40 (and I was at this point) and my specialist had said to prepare myself for that (not in a depressing way and being me I ignored him thinking it wasn't possible - yes I know! I complain about others ignoring him and did the same thing!!) so asking me to visualise doing things I want to be doing sent my depression into a horrible place.

Akire · 06/03/2021 23:39

There is a very very fine art to living with hope for a pain free or better future... but not so much that when it doesn’t happen the disappointment doesn’t totally finishes you off.

Jamiefraserskilt · 06/03/2021 23:48

I wonder if there will be more research money now fibro and CFS have similarities with long covid?

Becca19962014 · 07/03/2021 00:42

In my case they were asking me to visualise what ion was doing at my most happy I've had life long depression and can't have meds so it was really tough to do, in the end it was narrowed down to things I'll simply never be able to do again. There was no realistic visualisation if you know what I mean, for example, I self treated depression with exercise which meant swimming miles each week or so walking local mountains - I was swiftly told not to once diagnosed as getting help would be impossible, also I didn't know that knees weren't meant to bend upwards so ignored the problems that caused me (life long EDS issue for me) which resulted in my knees being badly damaged by the time I was taken seriously, the damage caused by changing clothes and losing consiousness in the local pool (we no longer have one) meant I was unable to go swimming anymore and I loved swimming. It was my "thing".

I expect if it's done realistically with realistic goals it could work but the bluntness of mine was devastating. I'm almost housebound so asking why I don't "want" to travel all over the uk again (as I did when younger) and desperately want to was seen as a lack of trying/effort rather than disablility. I was offered a "worker" to encourage me, but that's no use when I'm in agony sitting on trains/buses/in cars which now have ergonomic seats which are for agony as my joints are so unstable now.

I suspect if there was psychological support via a specialist who actually understood my physical needs beyond the line they get in a standard textbook it would possibly be different.

It's difficult for me perhaps helpful for others.

I was thinking about the poster who asked if it was going to be a depressing sort of board, race to the bottom sort of thing. I've been in support groups like that; generally if run properly and someone is there's to oversee such things then such experiences can be managed. It's not always possible, and I've been in NHS support groups managed by nurses/therapists who just didn't manage these issues at all and would then complain if someone else tried to set a group up assuming it'd be the same sort of thing. I set up a group twenty years ago and mostly it went well but we did have someone join who was determined their illness was the worst (we all had the same to varying degrees) and would show off all the time, which meant others then did the same thing, and I left as I couldn't cope with it.,looking back I think that was a lot to do with being face to face and the dreadful treatment locally where "be grateful you don't go through x, y and x" was standard and they assumed we would be the same as there was a lot of comparisons going on. I don't think a board would be like that though. If there ever was one of course!

Becca19962014 · 07/03/2021 00:43

Bugger. Meant to hit preview. Sorry that was so long. Feel free to skip!! I need sleep!!