Would anyone be interested in a chronic pain board?

[DunravenBadger]

Hi all,

I posted in Site Stuff but MN have recommended I post here. I've seen a couple of threads about this where MN have said they're "interested" in what's being said but nothing ever comes of it. Sometimes posts get lost here in general health and chronic pain / limited mobility doesn't come under "special needs". I thought it would be good if we had a specific board.

Would anyone be interested if MN set up a board specific to chronic pain (or similar if anyone has any alternative suggestions?

[Title edited at OP's request]

Sounds tricky @PaperMonster don’t suppose you get any extra support in pregnancy? I had rough night so awake with TENS on full blast. Least I don’t have to get up as on Disability benefits of which I am forever grateful after every bad night. Though appreciate when you have family and jobs you have to push on anyway.

@Akire -not me who’s pregnant! I had a ridiculously painful pregnancy a decade ago. I’m currently off sick from work due to the pain, but have to get my daughter to school which is only a ten minute walk. So exhausted today.

Sorry didn’t mean scare you hard keep track of who’s who!

How is everyone’s day going?

DD is total shit as in her pain and fatigue through the roof today and I've come down just to have a little cry and then I will go back and sit with her.

Bit of a mixed day for me. I did a few hours volunteering this morning which I enjoyed but it does take it out of me. Currently trying to summon the energy to put the Tesco delivery away as it's still all in the middle of the kitchen floor. Awful weather here today which never helps me, either physically or mentally. But I've had a fairly productive day.
So sorry to read about your DD Sooverthemill I hope tomorrow is better.
How are you Akire?

Today is a bad pain day, I have achieved nothing except sitting on the sofa with my legs propped into the least painful position, drinking all the tea, psyching myself up to going for a wee every few hours.

Had take strong meds for period pain so floaty and sick and not chance getting anything done. So taking today’s achievement being I opened the door for an Amazon parcel.

My day started well but has ended badly. Tonight one of my "friends" basically told me that I was lazy and could work if I wanted to. I'm lucky apparently. I couldn't be bothered engaging to be honest, but it's still hurt me.

We have a new chat thread over here if you want to let off steam

www.mumsnet.com/Talk/general_health/4188376-chronic-pain-share-your-moans-and-achievements?msgid=105447259#105447259

@MrsAvocet I'm so sorry. I've had that happen before.
I used to live in a house with crap single glazed windows and overheard a "friend" telling someone that I just thought I was sick and it's all psychological and there's nothing wrong with me.
It's so disheartening.

Oops - sorry Akire I missed that one.
How much easier would it be if we had an actual board......

That’s ok didn’t want ignore you but trying keep a chat thread going as we seem have established there is demand for a board.

Thanks RitaFires. I'm sorry you have had the same experience. I wanted to ask which bit of 24/7 pain I was supposed to be grateful for, and also if she had any idea how difficult it is to be accepted as being permanently unfit for work?! But I knew I'd be wasting my breath so I made my excuses and hung up.

Certainily worth a try, if only to have somewhere with a reasonable expectation that fuckwits saying "all those pills can't be good for you' or "have you tried $DMWOOOFTHEMONTH" will be in the minority or told to sod off.

@weegiemum

Yes, I would. I have RA and CIDP (a rare polyneuropathy). Limited mobility and chronic pain. I never find anyone else with CIDP, but it could also be AIDP, Guillan-Barre, MMN, AMAN or MFS, all related conditions.

My neurology condition is similar to CIDP, it is called Dorsal Root Ganglionopathy (DRG)

The consultant was using me as a way to explain the similarities and differences between DRG and CIDP to the registrar in my first appointment with him.

@weegiemum,
Thank you for being very kind to me at the start of my diagnosis when I was falling to pieces :)

Just a reminder to everyone who said they would like a board. We have a general “pop in” chat thread going. Would be good for Mumsnet to see the demand and for us to feel supported.

You find it here www.mumsnet.com/Talk/general_health/4161868-Would-anyone-be-interested-in-a-chronic-pain-board?msgid=105479823#105479823

Sorry!! Would help to link the right

www.mumsnet.com/Talk/general_health/4188376-chronic-pain-share-your-moans-and-achievements?msgid=105520166#105520166

No news yet?

They are still watching the threads and say they can see are being used. Main one at moment is linked above please join us or set up own chronic pain threads if you have a particular subject.

We are not going get until we can show there is a need so up to everyone show them that is the case.

Maybe we should all start shouting “OUCH!” whenever we have pain, regardless of what thread we are on?

I’m definitely OUCH! OUCH! today. Mustn’t grumble though (not until we have our own board to grumble on together). 😬

I like your style! Please come off and say hi on chat thread more the merrier and really helps to have support!

Thanks @Akire. I’ve just marked my place on it. Will pop back later to catch up and contribute.

I mean not

is not having a chronic pain board!

I wish we could get something in one place, I have a provisional diagnosis of fibromyalgia by my GP and am waiting for a rheumatology referral to confirm or rule out other problems. I have back pain as well and have had some really bad days this week. It would be good to have somewhere to go and find others with similar and maybe hear some encouraging stuff. The only person I know with fibromyalgia has other very serious health issues and is virtually bedridden and seldom able to chat. I hope so much that I can get some improvement.