AIBU in thinking that Mumsnet needs a Chronic Pain Board

[Ouchwtfthistime]

Because we need to talk about:

1. Denial

Has anyone been on gabapentin?
Day 2 and I feel like I have a bad hangover and I'm shattered

Just found this, I have fibromyalgia and a lot of back/sciatic/neck and shoulder pain. I am still able to work but it wipes me out and that’s about all I’m able to do. Currently on dihydrocodeine to take the edge off and function. Have horrendous anxiety and depression at the moment too.

Cannot believe there's a section for stationery, and fish, but they won't approve this!

Just checked stationary topic it has
3 threads started this YEAR
Total of 6 replies to those 3 threads.

Tattoo board one thread this year - ok I know shops are shut but its a whole area of chat and interest not just “my new tattoo is sore”

Weather has 3 threads this YEAR

Not moving super fast to slim down are they?

This is the thread I didn't know I needed. It would be lovely if it could be the board I didn't know I needed!

I still say 'I was diagnosed with fibromyalgia' rather than 'I have it' as I still see so many attitudes of not 'believing' in it. I also have arthritis and currently a couple of other bits that I'm hoping (!) are temporary.

I've been doing an online course recently aimed at supporting energy levels and realised during it that my body is simply a source of pain and disappointment. Nothing else. And there's no-one in real life I can say that to. How fantastic that I can actually say it to people who will understand and not dismiss me as being dramatic, or miserable or just whinging. Thank you!

How Bowed welcome, chronic pain tends creep up on you rather than you being given the label. If you are just about managing day to day not something you may identify into till it’s to late and you are ready to drop. Then you realise it effects everything about your life and how you feel.

@Thelnebriati

Brilliant idea Ouchwtfthistime I have a neurological disorder which causes muscle pain, and also osteoarthritis which I've been dealing with since I was a teenager but was only been confirmed by an MRI a few years ago. I had to fall over and injure myself to get that.

Ditto, I fell down several sets of stairs and seemingly threw myself at the floor on many occasions. Until they recently found that I had a neurological condition but mine is sensory nerve based not muscular. Nice to meet you (and everyone else too)

@YetAnotherBeckyMumsnet

Maybe we could have a trial. Give us an chronic conditions board for 6 months and if interest reduces, delete it then.

On a personal front, I really need to talk to other adults who have long time permeant conditions which cause a lot of pain and difficulties and I am finding posters on this thread who I never knew existed!

As PP said there are a glut of other boards which are unused for years, Maybe clear Mumsnet's boards, archiving other currently unused boards and in that way find space for some new ones.

@doadeer

Has anyone been on gabapentin? Day 2 and I feel like I have a bad hangover and I'm shattered

I felt drunk for the first few weeks on Gabapentin, that wore off but I still 'bob' (aka feel like I am sat on a float in a rocky waters) when I am still and quiet enough to notice.

I am exhausted but that might be unrelated to my meds, when you take many pills for several conditions it can be difficult to pinpoint details.

Hey Bowed, I like your point about 'diagnosed with fibro', not so much because of other people believing in it, but because I'm not sure I believe it either. It's quite vague, and I can't help thinking that if I get HRT, B6 injections, give up pepsi, blah blah blah that I'll be better.

I'm delurking just to say a chronic pain board sounds amazing. It would be great to have somewhere to talk about health with people who understand rather than say you're lazy or you have self-limiting beliefs or if you just changed your diet or exercised more you'd be fine.
Using chronic pain in the title is important because all of the time I didn't have a formal diagnosis I wouldn't have dared to join a chronic conditions board because the lack of formal diagnosis would have made me feel like I didn't belong there.

I think it would be helpful because we can use short hand rather than have to endlessly explain how we experience pain

@Worrysaboutalot that's how I feel. I'm also not convinced my pain is reduced at all. I might go back to coedine. I just wanted to try it as my nerve pain is more at the moment.

How long do you think is a fair trial?

@Sooverthemill

I think it would be helpful because we can use short hand rather than have to endlessly explain how we experience pain

Yes, this. Not feeling the need to preface our questions with explanations

[quote doadeer]@Worrysaboutalot that's how I feel. I'm also not convinced my pain is reduced at all. I might go back to coedine. I just wanted to try it as my nerve pain is more at the moment.

How long do you think is a fair trial?[/quote]
I had to have my dose of gabapentin increased several times to get reasonable pain coverage, plus I have Amitriptyline at night too.

I would go back to your doctors and ask for them to look at your pain treatment again.

@RitaFires

I'm delurking just to say a chronic pain board sounds amazing. It would be great to have somewhere to talk about health with people who understand rather than say you're lazy or you have self-limiting beliefs or if you just changed your diet or exercised more you'd be fine. Using chronic pain in the title is important because all of the time I didn't have a formal diagnosis I wouldn't have dared to join a chronic conditions board because the lack of formal diagnosis would have made me feel like I didn't belong there.

@RitaFires - that's a great (and sad) point - so many people are in chronic pain for years before their conditions are diagnosed -'if at all.

Very sorry that you're suffering x

@Christmasfairy2020

Hmm. Would it be a case of. My pain is worse than yours. I havent got out of bed for 3 days?

Eh? It’s a support thread you know same as happens when someone can’t sleep because their baby is teething or not sleeping. People share stories or advice same as happens with every other post on here. You have some strange ideas about what people living in chronic pain are like.

But thanks popping by your opinion has been invaluable.

@TheLumpySofaCushion Thank you x I'm doing better now.

If there's anyone reading this that has been disbelieved and dismissed by doctors there is hope. I moved house and so changed GP and eventually got brave enough to tell her about my symptoms and she referred me to a rheumatologist. I was 100% believed and got a diagnosis of hypermobility and fibromyalgia. I'm actually thinking of going private to be assessed for EDS once covid is over as unfortunately very few rheumatologists seem to be trained in it.

@Christmasfairy2020

Hmm. Would it be a case of. My pain is worse than yours. I havent got out of bed for 3 days?

I think, given so many of us know the crushing guilt of having a rare good day, we are less likely to do this comparison. If only to avoid having it thrown back at us at a later date.

Disclaimer: I reserve the right to make the comparison when it is someone who does not suffer from chronic pain - especially if they are telling me it in response to me sharing my own pain, when it takes so much effort to admit I'm struggling in the first place.

[quote Worrysaboutalot]@YetAnotherBeckyMumsnet

Maybe we could have a trial. Give us an chronic conditions board for 6 months and if interest reduces, delete it then.

On a personal front, I really need to talk to other adults who have long time permeant conditions which cause a lot of pain and difficulties and I am finding posters on this thread who I never knew existed!

As PP said there are a glut of other boards which are unused for years, Maybe clear Mumsnet's boards, archiving other currently unused boards and in that way find space for some new ones.[/quote]
Boom! Perfectly summed up. Give us a board for six months and see how it goes. I think everyone here would accept that as a caveat.

@Christmasfairy2020

Hmm. Would it be a case of. My pain is worse than yours. I havent got out of bed for 3 days?

@Christmasfairy2020 There might be a few posts like that (just like there are “race to the bottom” posts on hundreds of threads elsewhere. But having a dedicated section would be helpful to more people than having random threads posted elsewhere.

Genuine question - why did you post your comment? Not trying to be goady, but it doesn’t add much to this subject/request. I’m asking because I’m interested to know where that viewpoint comes from. Are there people in your life that make you feel like this? Or are you.someone who feels like crap, but others say they feel worse?

Or do you think that most of what has been posted on here is bullshit and excuses?

If so, all I can honestly say is - five years ago I’d probably have posted along the lines of your comment. I’d have been flippant and dismissive (and probably eye rolled too). I’d probably have thought “competitive misery”. I’d probably have thought “stop moaning, pull yourself together”. I’d probably have thought a few other things that I won’t voice here.

I bloody loved my life before. I worked my arse off, I loved my job and the team I worked with. I loved meeting friends for dinner when I was able to.

I would bet you my house that most people on this thread would give ANYTHING to not have to enter a competition for how long it is since they’ve left their bed.

If you have something constructive to add, then please do. Otherwise, please just bog off.

@Christmasfairy2020 that was unhelpful. It would be a SUPPORT thread. I never had 'my cancer is worse than your cancer' from anyone in the years I spent on the tamoxifen thread.

@RitaFires have you looked on the EDS website? They list docs who specialise in it

Yes, I was diagnosed with ME at 23 and now as a parent it's exhausting and doctors just don't care, and family doesn't believe in it. Would be great to have a board.