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 got to the post box and back under my own steam at least, @Akire. I had my Imraldi injection on Sunday so it's kicking in now. It's amazing stuff but obvs has downsides, like being immune-suppressed.

Oh no that’s must be very scary at the moment. Hope you don’t have to go out v much now.

@Akire

Keep having zappy nerve pain right in my heel. The oh crap I’ve stood really hard on overturned plug sort pain. Really intense for 60sec then goes. But had about 20 times in night and today, never happens this much! Can’t even really zap with tens as time you got it stuck on pain is gone. I’m hovering it stern glares in hope it sorts itself out. It’s not even like I put weight on my feet it has no reason to complain!

Sorry about your back, I also woke up with standard Xmas I slept funny on my neck:shoulders so carrying interesting deep head aroma.

I get this with my ankle every morning. Jesus it is painful. Lovely DH was trying to have a nice loving cuddle this morning before we got up and I just couldn't bare him anywhere near me as the pain was so bad. I feel like a shit wife now. He wasn't pestering for sex or anything, literally just wanted to be affectionate.

I hate how this pain affects relationships.

It must be difficult when you move away because of pain and it’s not personally. Hope he took it well.

It’s still zapping away on heels every hour, particular fun when you on face time and they have no idea what’s wrong!

Hello,
I've just found this thread. I dint k ow where to start except to say I e had pain for over 20 years and it's all galloping to some sort of diagnosis...though I dont hold out any confidence anymore. In the last 3 months my mobility has nose dived and pain has spread into a pattern that resembles rheumatoid arthritis. I've had discs fused in L4 and 5. An operation this year to relieve a compressed nerve in my neck has been unsuccessful. My hands, shoulders, hips knees and feet are growing more and more painful. I am not sleeping. Painkiller combinations seem to be less effective (codeine paracetamol gabapentin naproxen and voltaril) and I feel very bleak about it. I'm 55 but my body feels 80.
I am seeing a rheumatologist 6th January for the usual round of blood tests scan etc but how long does a clear diagnosis take?
I dont feel like talking about it to anyone. To my ears it just sounds so miserable and grim
Any advice gratefully received.

Hi @lolaflores welcome to thread! Many of us have had years of pain then finally got diagnoses or part diagnoses and ummm we don’t know for other pain.

There is theory that if you live in pain for long term it hyper sensitives the nervous system so your body responds other pain or non pain in different ways. So once you have one conditions the odds are higher there will be more.

3m decline is harder to deal with though, don’t be to hard on yourself if you are struggling at the moment. We all get used to the status quo and then something changes and it’s hard to cope. It’s ok feel like your body has let you down, even more so when you don’t know why.

Best thing is try and take one minute one hour or day at a time. You can’t be doing the rest of my life thing it’s to hard. The good news is you will get used to the new normal even if it seems impossible. The human soul is a remarkable resistant thing!

Please feel free have moan and celebrate the good days we all get it here

Thank you so much for your reply, I rely appreciate it. The thing that gets me the most is the loss of things. I have up sewing because of my shoulder but now my hands are really slowing down and I cant write/draw/paint/type for long now.
The stairs are becoming a bit of a challenge. Housework is on an ad hoc basis. Cant drive anymore.
It's just over taken me so quickly.
I feel locked inside all this and I dont think anyone believes me when I try to explain how much pain I'm in so I just dont say anything.

Do you have partner or family at home? Lack of hands is tricky indeed. I’m sure we could come up with some housework hacks if you need them.

It is hard people to understand pain unless you are at the laying on floor screaming stage. There is a line between being able to say how it is and what sort of day you have. (Like what we do here) and talking about nothing else. People can have very different reactions and sympathies. But it is important to tell someone at least once a day that’s why we have this thread. It helps to release some of the pressure and often those closest to us don’t want hear it. I’m single
So not really anyone else to listen anyway.

DH is wfh at the moment but he is assigned a broad as soon as the country his project is based in let's UK citizens back in. At which point I will be getting help in. Just bot doable otherwise.
Have to figure put some work around for cooking.
It's a relief to find a place to share this and know there are people who understand the day to day of it.

Talk more tomorrow. I’m sure other will be along in between Xmas prep. Hope pain lets you sleep tonight for us both!

I keep reading this thread then forgetting to actually post

I'm 40, have severe osteoarthritis and basically, it's shit. Have 2 kids - one primary and one secondary. Dh mainly works from home just now but pre covid (and if there is ever an after covid) he worked abroad A LOT. He was often on the other side of the world and actually I didn't mind it most of the time, I missed him but it was nice to have our own routine. I worry a lot how I'll cope now that my mobility is so much worse but as per usual just trying to get through each day.

Could people give me their experiences of pain management teams? Is there usually a long wait time? What to expect? How effective they have been?

Hi @thaegumathteth welcome to our little corner. Sounds like you and @lolaflores have lots in common. Care agency’s can be helpful I’ve had many years (not now as funding changed) but are a means to an end.

Not been pain clinic sorry.

Least my nerve pain calmed down from shreaking in pain every half hour to much lower pain every 30 seconds or so. Least easier hid over Xmas. Family not v sympathetic.

Aikre that's good news that things have settled a bit. I hope u cN get on with things. And yes to masking over xmas and families. I think there I'd a bit of "hurry up and get better going on" and exasperation that you are looking a bit detached because pain can be distracting and it appears self absorbed.

I went for few weeks in October and had really pulled my back and bro law actually told me off as “your not the only one in pain you know” because he has dodgy foot that hurts but manages run miles 3 times a week Hard not to get upset and up to them if I spend Xmas on own or not so have play family politics.

Am back. Sorry I have had an absolutely horrendous few days after my covid booster. Somehow it triggered an extreme version of my usual nerve pain. I've struggled so much working extremely long days to get this payroll sent early for Christmas and it's been unbearable.

Today was the first day since Friday that I woke up at 6 and realised I had slept through. Pain is much more manageable today although still there.

How is everyone getting on today?

Glad you slept @SpookyScarySkeletons you have been working v hard. I need wash hair today I hate doing it! Not done over a month and defo pre covid but kills my arms and shoulders. Last clean of fridge and rubbish then any luck set off mid morning tomorrow.

@Akire

Glad you slept *@SpookyScarySkeletons* you have been working v hard. I need wash hair today I hate doing it! Not done over a month and defo pre covid but kills my arms and shoulders. Last clean of fridge and rubbish then any luck set off mid morning tomorrow.

Same here. I'm going to get littlest DD to help me. My sciatica (as if I didn't have enough pain already) goes absolutely mental when I try to lean over the bath and lift my arms. The burning is just indescribable!

Hi everyone, have had a COVID scare here too as I started feeling rubbish yesterday afternoon, shivery, sniffly and achy (more achy than usual 🙄) I had a negative LFT last night but had a bad night and have woken up with a headache. I have literally only been to the supermarket, but had my stepfather staying for a couple of days and our youngest who is in the RAF got back last Friday so a couple of potential infection routes. Will see how it goes and test again if necessary, two other sons due to arrive tomorrow but they only had COVID 3 weeks ago and are double jabbed.

It’s really hard to recognise whether you are actually ill or just your normal problems are worse, I have overdone it and this might be payback. Still in bed, but I am going to have a bath and see if that helps. Wishing everyone a good day and enough spoons to achieve whatever you need to get done.

Oh no @Evenstar is it worth getting a test? Or if al family have had it just risk it? The NHS site is so out of date when it comes to symptoms for a PCR most double jabbed have cold symptoms these days.

I think got mine from hairdressers only time been in 2y not been anywhere else only supermarkets and parks. Yet I have friends on tube everyday and out and about socially every week and they haven’t caught it, it does seem really unfair doesn’t it.

I didn’t feel sick with mine because I always feel crap. Good luck with bath

I use the Zoe app @Akire which helps scientists monitor new symptoms/spread etc and have ordered a home PCR test as they asked me to. Staying at home anyway so no risk to anyone else.

I wish we had appreciated how much freedom we had, and how much less anxiety it caused when you could assume it was just a cold. That is rotten luck to catch it at the hairdressers.

Changed my mind and had a quick shower and feel a bit better now, good luck with the hair wash.

I saw a rheumatologist yesterday, and been diagnosed with psoriatic arthritis. He's given me a steroid injection to help with the pain - seems to have started helping, but I've had a headache since as well. Anyone know if that's a common side effect? Starting methotrexate injections on Monday. All feels rather daunting at the moment. Hope everyone's doing ok :-)

my back is in spasm so im just waiting on soem diazepoam to be delivered by the pharmacy to sort it out. couldnt be worse than today i hope as its so painful and i cant bend at all and i need to have a shower but cant get in. ugh so stressed by it

@OneNightTimeMenaceStrikesBack

my back is in spasm so im just waiting on soem diazepoam to be delivered by the pharmacy to sort it out. couldnt be worse than today i hope as its so painful and i cant bend at all and i need to have a shower but cant get in. ugh so stressed by it

Oh no rotten bad timing Hope drugs help. Still not washed my hair it’s going have he rush last minute job tomorrow before I go.

@GoGoPowerScooter

I saw a rheumatologist yesterday, and been diagnosed with psoriatic arthritis. He's given me a steroid injection to help with the pain - seems to have started helping, but I've had a headache since as well. Anyone know if that's a common side effect? Starting methotrexate injections on Monday. All feels rather daunting at the moment. Hope everyone's doing ok :-)

Typical one thing better one thing worse!