Chronic Pain- Daily chat drop in thread #2 All welcome

[Akire]

Hi all well we filled up the last one and now we have our newish chronic pain boards.

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 through it. All welcome jump in and feel supported

[Akire]

Hey everyone good catch up with everyone’s news. Had friend come for Friday coffee which nice as only person I see all week. Keep thinking I need a decent day at some point but looks like need struggle get another GP appointment once chair is fixed and then see if new issue or “one those things”.

I started Xmas shopping about 2am! Lots nieces & nephews but what with all delays don’t want be stressing. Plus I’m my families unofficial PA so I end up buying things to everyone from someone else x 100. Even 12h over night the price in Amazon basket has gone up and things will only go way one.

[Worrysaboutalot]

I am hurting a lot. I forgot to charge my watch which reminds me when to take my pills. So I took my last set late. My legs and feet in particular are really hard to handle atm.

Going to go to the bathroom (the other thing I do when my watch alarm going, as I have no sensation of needing to go, which is a pain) to see if the stagger there and back via crutches and stairlift distracts me. Also rewatching season 9 of the Walking Dead, things could be worse!

[Akire]

It’s so annoying when I don’t do drug reminder clock count down to next dose. Estimate 4h is very trigger better make
It 6 just case you got it wrong!

Don’t think ever seen the walking dead is it horror?

[Worrysaboutalot]

Yes, horror. Don't like the genre in general but watch this series with DH from the start. Now DH doesn't watch it, but I still do, lol!

Also watching Nine Perfect Strangers and Good Girls and Wentworth!

[OneNightTimeMenaceStrikesBack]

thansk @LunaAndHerMoonDragons my psychologist said the same, that its a common misdiagnosis and shes admamnt im on the spectrum. she ought to know, she used to do the adult assessments for the area so im taking her word for it. Im hoping it means im more successful arguing against the bpd label as well, ive never thought i had it but no ones listened so im hoping this makes a difference

[doadeer]

I had my lidocaine and ketamine infusion today.
If anyone is interested in exploring this www.thepainteam.com/patients/lidocaine-infusion-therapy-chronic-pain

It was fine as treatments go, I was in theatre recovery area and the ketamine made me quite drowsy and spaced out. I lay and listened to motown playlist on my headphones lol.

Idea is to coat my pain receptors and tell them to switch off.

Don't want to get my hopes up but God I would love this to work!!

[HerRoyalRisesAgain]

Hello. I've been told to come here by one shes my bestie

I'm 30, a single mum to 3, I have hEDS, rheumatoid arthritis, psoriatic arthritis, Subrapubic disfunction, de quervains tenosynovitis and fibromyalgia. I'm autistic and suffer with my mh massively but apparently you lot are nice.

[Akire]

Hi @HerRoyalRisesAgain you are very welcome to sick bay lol another person with a long list of conditions just like us how’s your weekend going?

[HerRoyalRisesAgain]

Weekend is quiet. The younger 2 sleep at their dads on a Saturday, so just me and the oldest, he won't see his dad. Refuses point blank.
My mum came down to help with housework. So I've a lovely clean house now

[Akire]

A clean house is a step up! Is your mum for hire I’m Having a starving day but no energy cook so just ate whole pack crackers and half lump Cheese. Prob start off call bladder pain but somethings got give.

[HerRoyalRisesAgain]

I have told her she should hire herself out as a Foster mum to grown up kids but apparently we're more than enough for her

[Akire]

@doadeer I will read up on that does it apply to whole bodies?!

My first Xmas presents arrived so feel like achieved one thing this week.

I do find managing good hard, if I do manage full fridge healthy food it goes off before can eat it. Even fruit doesn’t last long when it’s just you in a household. Bananas have 12h from green to mushy.

When I had better care package care to would cook but it was just a bad having to decide on meals then plan and do shop. I do find deliveroo great though for quick top ups even though mega expensive.

[Akire]

@HerRoyalRisesAgain

I have told her she should hire herself out as a Foster mum to grown up kids but apparently we're more than enough for her

One family is enough for anyone. We tend check in how we are doing here. We know it’s hard when living with chronic pain and nobody understands issues. Sometimes you just need say what shitty day you having or celebrate small achievements. It’s a hard slog alright we all deserves medals.

[doadeer]

Yes - it's an hour long IV of the drugs that impacts whole body . I'm trying not to get hopes up.

They weighed me for the IV and I've finally lost most of my baby weight, 3 stone... I was really pleasantly surprised as weight loss with chronic pain has been a slog

[HerRoyalRisesAgain]

@doadeer fingers crossed it works for you
Well done on the weight loss. I'm 9/10 stone overweight and it is HARD trying to shift it

[Akire]

Wow sounds promising indeed really hope work for you. Having disability be piece of cake if wasn’t for chronic pain.

You lost 3 stone! Well done that’s amazing. It does take so long. I can’t stand on my scale so I stuck it on kitchen hard chair and just transfer across and works very well. Have had standing people test my system. If not standing has meant you haven’t been able weigh at home. Even at hospitals before they haven’t been able weigh me
If couldn’t stand like it was first time ever had that kind problem.

[doadeer]

You have all my sympathy... With the pandemic, chronic pain, exhaustion, children.... The only pleasure is to eat. It's very hard.

My son is autistic, he is 2.5 we had a really early diagnosis as his markers were clear. I'm just praying I can get some energy back so I can be a better mum

[doadeer]

@Akire that's clever!

I was very fit before I got pregnant but it all went down hill when the pain started at 4 months. Before that I had such crippling headaches I couldn't exercise.

To be honest as my heart rate always raised and I'm usually sweating with pain I think just walking burns a lot of calories for me as my body is working so hard 😩

[Akire]

Morning guys hope everyone day started with nice cup of tea or coffee. Feeling like human being today, does happen occasional! Managed potter around clean kitchen tops and get rubbish ready to go out. Today’s a day would gone nice walk but still stuck home. (Waiting for new wheelchair wheel for last 35 days!)

Really helps if you can get something done first thing then day doesn’t feel like a total let down.

[cricketmum84]

Good to hear @Akire. I'm sleeping a lot better the last couple of nights after I increased amitryptaline dosage again. I'm still having to back up with codeine for the pain though.

Re weight loss. It does seem like climbing Everest when you have a large amount to lose! It's much more manageable if you break it down into mini goals. I've lost 12 and a half stone since December 2018. I've just taken it slow and steady. Easing off a bit now though as I'm almost at a healthy weight and my diabetes is well controlled.

Hope everyone has a calm and peaceful Sunday!

[doadeer]

Oh my 12.5 stone!! Thats immense

[Akire]

That is amazing, must felt over whelming at the start. Lot to be said for slow and steady. Any tips?

[cricketmum84]

Yea it was scary when I first started out and worked out how much I needed to lose! I used the ww app for the first 2 years but can do it with my eyes closed now and don't need to follow the plan.

I eat very low carb and do a lot of clever swaps and home cooked food to bring calories down. I like salad with hot meals such as curry or chilli.

I also broke my goals down into half a stone at a time. I ran a thread on here for 2 years nearly to lose half a stone a month. Sometimes I lost more, sometimes I lost less. It doesn't help being diabetic and on medication and being in a wheelchair as there isn't much exercise I can do!

Also lots and lots of photos to track your progress! This really spurred me on!

[HerRoyalRisesAgain]

Thats amazing! I've recently started ww, hopefully shift some pounds!

[Orangesandlemons82]

I am due to have facet joint injections a week friday. I can't decide whether I should have them or not. I can't carry on taking tramadol everyday but am just concerned they wont work, or dont work for long and we will have paid nearly £2000 for nothing. If i went the NHS route i would be seen March/april for them. I need to make a decision and stick to it but keep changing my mind as to what I should do