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

Tell me about NHS services day 22 stuck here. Wheelchair engineers can’t be affect in same way as covid list no need really. Just lack of funding to have the number of people for each service. Still no idea of part is from EU or UK though if was ordered when he came that was 14 days ago plenty of time for UK.

Should really go back Gp check something but such nightmare to try go Manuel chair and taxi as can’t push myself never mind get up set off ramp and through 5 sets of doors.

Yep I'll have an NHS moan too. Ordered painkillers on Thursday and GP has totally ignored my request as all my other meds arrived later that day. Ordered again on Friday. Nothing. Ordered again last night commenting that they wouldn't leave an animal in this level of pain.

I've been awake since 1.30 am with the worst burning and stabbing pains in my feet and ankles that I have experienced so far. Thankfully it's a bit of a quieter day at work today.

Keeping everything crossed for wheelchair news @Akire

Good news I hope, the consultant’s secretary has arranged for me to be seen at the fracture clinic by one of the team. The bad news is there is a 2 hour delay for X rays so I think that’s the morning accounted for today

I've had a diagnosis of ME/Fibro for the past five years. My pain has largely been under control for a couple of years but the last fortnight, pain has flared up big style. I'd forgotten how insidious chronic pain can be. I need to slow down but I'm used to doing more and at the moment I can't. Miserable isn't it? I'm considering contacting GP to up my pregablin but I'm not sure if that's a good idea or not. My PIP review is coming up and I'm worried about that too, which isn't helping.
Does anyone eat loads when in pain? I'm a comfort eater anyway but pain makes me crave junk food which doesn't help the pain.

Hi @blossomtree323. Sorry to hear you are suffering at the moment. 💐

Re food - I'm the opposite. I really struggle to eat when I'm in pain. I skip breakfast, get hungry at lunch and have a tiny portion of dinner. Not good really as I'm also diabetic and have to take my medication with food. I get really fed up of food and eating. DH is always telling me off!

Hi @blossomtree323 welcome to thread. I would not be surprised or PIP stress has caused flare up. They are extremely taxing. It’s always fine line between doing stuff in pain if going hurt anyway or doing stuff makes it worse.

Sorry about rubbish drugs situation @cricketmum84 and good news about X-ray @Evenstar

No news on chair and my birthday today so Happy Birthday stuck at home for me. Not that feel well enough to do much but nice have option go outside half and hour.

Meant say when I’m having rubbish day I do tend order take away for food as miles cheaper than paying an agency to warm something up. Certainly is comfort element and why should I look after my body and try eat well when it buggers everything up mindset at times. Sugar and carb fix do give body natural highs that we crave more when feel crap so not surprising really. Any small lift even if crash later is a small win.

@cricketmum84 my DH is usually telling me off for not eating too. I don't think he quite realises that I'm always so fatigued that I usually can't be bothered. He found out how much junk I was eating yesterday and I got a lecture!
I try to keep moving as it seems to help with Fibro pain. Not at the moment though. The rheumatologist wants me to start swimming to help with the pain. He also prescribed me a drug called Hydroxy chloroquine. It's for an over active immune system I believe. It's was really yelping until this flare started up. Does anyone else take this?

I have lost the built up shoe, X Ray looks great the doctor was really pleased. Check up in 6 weeks, it’s been a slog to get anyone to see me, but the doctor apologised for the delay and the mix up over dates. Well worth 3.5 hours and a £5.50 parking charge.

My foot is yucky though so looking forward to giving it a clean and getting rid of the dry skin.

Happy Birthday @Akire and hope you will be able to celebrate properly when you get the wheelchair fixed 🎂💐

@blossomtree323 I haven’t tried that medication, but a lot of the current research in fibromyalgia seems to be that it is immune related, so hopefully you’ll feel the benefit again soon.

I have only recently been diagnosed with fibro, but think it was going on for a long time before that probably over 20 years. The letter said mild fibromyalgia, but to be honest I have good days and I would have thought the consultant was aware that mild symptoms are only a snapshot on one day.

Fantastic news @Evenstar!! I bet you are so relieved to get rid of that bloody shoe!

Happy birthday @Akire! Hope you have a restful peaceful day.

I have played holy hell at the doctors and they are putting me on the list for tomorrow. My mum has just given me some spare codeine to tide me over while they F**k about.

Happy Birthday @Akire!

Great news about shoe and up coming holiday that make load of difference. Yes I hate stashing strong meds for desperate emergency’s but can take so long get pain killers you have ration what you have so not left with anything. So hard fighting get things sorted when you feel rubbish or don’t have anyone else who can do it for you. Makes you feel like drug seeker when you just trying make system work as you know he left agony other wise.

How are we all this Thursday?

I'm really not great this afternoon @Akire. I feel like shit. I wonder, does anyone else get Fibro pains in the back of their skull? I've just given in and taken paracetomol. I'm popping them like smarties atm. DH has just given me a hug and said "It'll pass". I really wish this flare would bugger off!
Parents are popping by tomorrow to help us sort out clutter in the house. I'm sure they think we're a right pair of lazy fuckers. They told me before that our previous place was a tip and it's given me a real complex about it cos I'm trying my best. They are generally pretty understanding mind you, but still do make tone deaf comments!

I’m sorry you having bad day. I had awful day yesterday really like come on universe give me a break please just one bloody hour! Pain seems slightly better last few hours. Which I will gratefully accept. Managed so few basic household things.

So hard keeping house isn’t it when you are limited. Make most of the offer even if make comments and raise eyebrows. My mum has habit opening cupboards and closing them and then says I’m not saying anything! She lives far away so not in position be practical help.

Meant say wish doctors would give larger paracetamol I can do box in 2 days with regular dose. When Im stuck in for few weeks I risk running out and then have pull favours off people as online shopping is so limited what you can buy. I have enough problems at chemist as it is without having to explain why I want a bigger box then they usually give you different advice from you Gp “oh you shouldn’t be taking them so often”. GP wouldn’t give as well cheap enough to buy. It’s military operation keeping stocks in. When my wheelchair is eventually fixed I have go around stocking up like some druggy.

Well we made it to Friday so big well done everyone. Even if you arrived over finish line in a flop

After a week of waking at 3.30am I am trying magnesium oil from the dead sea massaged into legs and feet tonight. Wish me luck!

How did you get on? I’ve used it before for restless legs. Must be something in 3am wakes up I was up again but have audio books (that I know by heart) so not like kept up with suspense or waiting to see what will happen.

Not great, was awake in pain from 2.30. I'm like a zombie today x

Sorry hear that not the best start to the day x

been having a rough time recnetly, had quite a few seizures and my arthirtis has been super bad which has made my fibro and crps worse becaus eive been tightening my muscles to compensate for the joint pain. also my knee popped its socket yesterday when i fell so that was not fun. I just wish i could get even a few minutes pain free, just a few minutes would do but tis nto to be :(

Checking in.

Hi @OneNightTimeMenaceStrikesBack think we can relate to the just give me one minute thing. Should be able do trade offs for things hey.

Hi @SpindleWhorl how are you doing today?

My bowel pain seems down reasonable level so far. Small mercies. Kids woke me up screaming and running on commuinal landing so 5metres from my bed at 830. Not my kids the neighbours! Poor sods never actually go out so seemed super excited so can’t hold it to much against them.