Chronic pain Cafe - support thread #3 All Welcome

[Akire]

New shiny thread to get us through December & Xmas and possible New Year!

This thread is for anyone who has days , weeks, months at time when get chronic pain flair or lives in pain constantly. There are so many conditions that have pain and often limited understand of how it feels to be living with it. Everyone is very welcome

I'm in Spain! Although usually somewhere in the UK, depending

Ahh nice calming afternoon 😂😂

Hehe well done, managed give kitchen basic clean since pain much better today and making most.

i buy my brother adult colouring books every year for xmas. he finds them really calming so i always buy him some new ones and new pencils

My legs are hurting so bad where they got bruised, they are still really dark with buruising as well

@SpookyScarySkeletons

Ahh nice calming afternoon 😂😂

This is brilliant

Oo well done Akire!
I'm really paying for my fun yesterday with pain today. My tens machine finally died completely so I'm waiting for a new one to arrive, and in the meantime ibuprofen and heat packs aren't touching it. If I lie down flat and still I can cope but sat up or walking around I feel like I might pass out or vomit from pain at any moment.

Sounds rough shame we have suffer payback pain. My hot water bottle split last night luckily few hours after filled it and tiny split so didn’t get burnt.

Who was it started dating not long ago? How is it all going?

@bicyclesaredeathtraps

RainbowZebra yes that would actually be a great idea! I've never been quite sure how choir on zoom works, but I know I can sing even on low spoons high pain days.

Meant to reply to you ages ago bicycles I always have so much I want to agree with / empathise with. My mind gets scrambled with similarities. I so want to be in a choir, doodle rude colouring in books, know about weighted blankets, empathise with our situations in general - struggling with pain, autism issues, kids / no kids. Being alone and having no help, constant battle with medical practitioners. I do think this is one of the best threads I've been on in a decade on Mumsnet. Nobody tries to outdo each other. I see a number of you on other threads and think of you as friends / allies. Thanks for sharing your locations. None of us are really close, but nice to know someone always there metaphorically when you wake up in the morning feeling shit.

Would it be a good idea to set up a group chat on WhatsApp? Or better just to stay here?

I'm up for a WhatsApp group.

Totally agree I love our group, so much support and cheerleading even on our worst days x

I'd be happy with a WhatsApp group too.

I've created a group called 'Chronic Pain Warriors' on WhatsApp. If anyone wants to join, just PM me with your number

@RainbowZebraWarrior

I've created a group called 'Chronic Pain Warriors' on WhatsApp. If anyone wants to join, just PM me with your number

Sent xx

Hello! I have only just found you and didn't even know there was a Chronic Pain board on MN. Please can I join you?
I have 2 chronic conditions (UC since 16 yrs old/ileostomy for 18 years plus a long term progressive liver disease) but caught Covid March 2020 and now have long covid and recent diagnosis of fibromyalgia.
The LC presents (for me) in chronic pain and mobility problems with nerve pain/neuropathy in hands/ arms and feet. Also extreme fatigue.
Good and bad days and still learning about pacing myself! I love reading and drawing and tv (too much!) And last year my Dsis got me into gardening on good days.
Live with DH and DS 13 who are awesome and very understanding. Left work July 2020.
I am on cocodamol and amytriptiline for pain and antidepressants.
Sorry that was LONG!
Lovely to meet you all
Hope Monday is kind to us all

Hi @wildthingsinthenight welcome. Sounds like you have a lot going on

Hi *HerRoyalHappiness👋
I did wonder after I'd posted if the group had moved over to Whatsapp but hopefully not the case

Morning @wildthingsinthenight and welcome!

This is a really lovely and supportive group.

I also have sensory and motor neuropathy in my hands, lower legs and feet. I had a virus Christmas 2020 (not covid) and lost all feeling in my feet within a week. Neurologist thinks it attacked my nerves which were already at risk as I was vegan, no B vitamins and diabetic. It's such a weird feeling isn't it though to not be able to feel your feet and ankles but so much pain coming from them.

I'm currently working hard at Neuro rehab, still need my wheelchair to go out but managing with sticks around the house.

Sounds like you have an awful lot going on so I hope our group can give some support.

Morning all. I've added a couple of extra folk to the WhatsApp group, but definitely still staying here. The way I see it, some might not want to join, and some might fancy an extra opportunity to chat. Definitely room for both.

Bright skies today here. Deep breath and get the tax return done.

And hello @wildthingsinthenight definitely sounds like you've got a lot going on. A few of us here have quite similar issues or ones which crossover. It's just great sometimes not to feel so alone and hopeless.

Wow Spooky that sounds really rough for you. Glad your rehab is helping you.
I sometimes use a stick on bad days and weirdly always on holiday. Tend to have a bad flare up the day after we arrive which I put down to stress of it all/packing/travelling ( nowhere glam btw.. talking Whitby/ Norfolk We were in Whitby for NY and my birthday which is 3rd Jan. I love it there)
The neuro pain is strange yes. Sort of dragging and it makes me feel weepy.
First time I had the vibrating I thought I had dropped my phone by my foot and it was ringing on vibrate!
The unpredictability of chronic pain is a tricky one to grasp for me. If I've had a better day and done a bit of low key gardening (nothing strenuous maybe potting a few bits/ tidying) I expect to pay for that but when it is out of the blue it's frustrating.
Just started to think my menstrual cycle affects it too. The run up to my period is always a bad week.
Wondered if anyone had experienced this too?

RainbowZebraWarrior hello and thank you. It's good to have a place where people understand.
Good luck with the tax return!!

I'm in Nottingham btw. I see further back that people are sharing their locations.

Spooky love the colouring
I like colouring and doodling too. I also have a colour by numbers app on my phone and my DS has got me into the Hay Days app too where you run a farm.
I like to have these distractions, as well as tv, when I'm feeling anxious/down. Really helps.

Hi @wildthingsinthenight you are very welcome. Funny I found cycle makes me feel worse think it’s the sleeping less well and extra pain and general feeling far more floppy. Think when you use max resources get through today another extra like period is enough tip the balance and something has to give!

I get funny vibration thing but feels like body is doing it, only when it stops you think oh now I feel calm and it’s “switched off”.

Managed first job of day and rang hospital change scan appointment which went fairly well only have wait a week. Still
Non the wiser who sent me so had mild panic yesterday about that. After months of worry and the consultants dismal I had convinced self was nothing to worry about. And he never mentioned any scans or ultra sounds, I hope one hand it wasn’t him as does doctor patient relationship no favours if not even sharing basic information with you. Think part of it as obvious disabled person is you get told far less information for some ablist reason!

@Akire

Hi *@wildthingsinthenight* you are very welcome. Funny I found cycle makes me feel worse think it’s the sleeping less well and extra pain and general feeling far more floppy. Think when you use max resources get through today another extra like period is enough tip the balance and something has to give!

I get funny vibration thing but feels like body is doing it, only when it stops you think oh now I feel calm and it’s “switched off”.

Managed first job of day and rang hospital change scan appointment which went fairly well only have wait a week. Still
Non the wiser who sent me so had mild panic yesterday about that. After months of worry and the consultants dismal I had convinced self was nothing to worry about. And he never mentioned any scans or ultra sounds, I hope one hand it wasn’t him as does doctor patient relationship no favours if not even sharing basic information with you. Think part of it as obvious disabled person is you get told far less information for some ablist reason!

I have had that happen! Was sent a CT scan appt that had not been discussed at all. Sends you in a total panic doesn't it!! They have no concept of the problems that kind of thing can cause. Probably an afterthought " Oh we might as well do Akire a scan while we're at it"

Yup, I've just had a letter for an abdominal ultrasound. No idea what it's for and nobody has told me I needed one!

Nice to see am in good company! Also had ring through to maternity to change time. It better bloody NOT be in maternity and in ultra sound department how insensitive if it is.

@Akire

Nice to see am in good company! Also had ring through to maternity to change time. It better bloody NOT be in maternity and in ultra sound department how insensitive if it is.

Oh that has to be a mistake surely?? What a cock up