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

Well I've had quite the week in terms of unexpected events, FIL was taken seriously ill on Friday and has been in hospital. Its all caught up with me today. I'm still in bed 1pm with a bad head that feels like someone is screwing into my temples. My body is obviously just saying enough. Also had physio yesterday and my lower back is inflamed. I've been given exercises to do. It's never ending is this chronic pain lark and really gets me down.

Feeling slightly nervous as I am leaving the house without DH tonight for the first time since about November 2019. It's my work Christmas party. Feeling slightly buoyed in confidence as I had covid recently so should have some decent antibodies flying around!

It's going to be the first time I've met these people in person though so I'm a bit shaky!

@blossomtree323 that is quite the week

@SpookyScarySkeletons you'll be fine, you've got this

I’m feeling sooooo much better if dance but would cough to much. Party sounds lovely but know what you mean.

Just catching up with you all, I am in bed as I had my covid and flu booster yesterday and it has knocked me for six. Feeling dizzy and just yuck. My left arm is aching despite painkillers and feels like it’s burning, (that was the covid one) left one slightly better. Hope I fett we l better tomorrow.

Hi all. I also had my booster yesterday. Don't feel as bad as I thought apart from not being able to raise my arm. I've just noticed though that my heart rate is racing (Fitbit keeps telling me I'm in fat burning zone- I'm lying down on the sofa!) I've got casual diagnosis of PoTS (Rheumatologist noted my postural Tachycardia at my EDS assessment) Bloody GP wont refer me for official diagnosis though (one referral at a time she says!!) I've been living with a crazy heart rate for months and really should be medicated. Think I'm going to have to ring the surgery.

Gentle hugs to all x

That’s rubbish I’d be on phone with my undiagnosed rapid heart rate asking them do something urgently. It could be something else or POTS either way you need rule out major problem.

Waiting GP Video call here just checking on me which is amazing. Still keep having coughing fits but guess that’s could be for ages and serious night sweats.

Feel like can celebrate Friday and managing get over Covid now. Least don’t have worry as much. Does one covid protect you for another strain?

Hope everyone else is doing ok

didnt sleep at all last night so im very tired and i have to go out and get my depot shot shortly. hoping i fall asleep this afternoon for a nap but we'll see

Morning all. Currently in the hospital waiting for my epidural steroid injection.

COVID means no visitors and there is something horrible about being here without my husband.....

On the plus side, I get to wear paper pants.

How did it go ? I’m glad you decided to give it a go very brave of you.

I had lay in till 1130 which lovely and first night in ages no night sweats so feels like such a good sign.

Thanks @Akire.

It was ok. Unfortunately 2 hours in and I can already feel the pain returning. The doctor said that it takes a few days for the steroid to work, so I live in hope. In the meantime, pass me my proper pants with a side of gabapentin 😫

sends proper pants fingers crossed For you.

Pelvic pain is bad today so annoying constant pulling sensation. My hospital appointment was tomorrow but had to cancel till start of January as not well enough to go especially when it be hours and hours trying sort a taxi sitting up and coughing fits. Just going to closer bathroom sets me off coughing.

Anyone else get days when they've just Had. Enough. ? I feel like I'm in a nightmare and I really want to wake up.

@bicyclesaredeathtraps

Anyone else get days when they've just Had. Enough. ? I feel like I'm in a nightmare and I really want to wake up.

Yup. I'm currently unable to balance sleep / pain relief / guts / diet properly. And I'm pissed off with DP and his ridiculous relatives.

Anyone else ended up having to have a low FODMAP Christmas?!

@bicyclesaredeathtraps

Anyone else get days when they've just Had. Enough. ? I feel like I'm in a nightmare and I really want to wake up.

Yup me often! It feels like it gets to the bloody where life is bloody ridiculous. You do not feel like can keep doing same thing over and over and no chance of change. Then open eyes and there it is. Nothing to add apart from we get it here

Yup. Also feel the pain. And yes, I'm on low FODMAP and how histamine diet. No sage and onion stuffing for me as it's a killer. Have to be careful with gravy too and green veg. Although I had a carvery last weekend and managed some sprouts. Was just a but windy the next day. My biggest bugbear is no chillies or garlic. Tried a chicken kiev last night and just causes so much pain it's not worth it.

I’ve been on it on off but as I stay with family over Xmas basically impossible. They happy but odd gluten diary free things but can’t be that strict so end up being in a certain degree of discomfort. Obviously mine owner we serious but it’s not easy time
Of year.

That is my condition not that serious just that it helps my random stomach pain that has no cause.

I'm spending the whole of Xmas Day at home with my adult DS who's staying with me, and it'll all be low FODMAP. Onion / leek / garlic (even powder in gravy granules) make me ill for days. I can't manage more than a smidge of gluten or lactose. Can't do pulses / legumes

So far we've settled on lamb and potatoes. I'll make gravy with cornflour and meat juices and chuck a carrot in.

Can you take your own food, @Akire? (With warning to hosts.) I'd rather sit with a gluten-free-bread turkey* or tomato sandwich for Xmas lunch than make myself ill again for days. (The voice of bitter experience.)

*Assuming you can get a bit of meat that hasn't been basted or soaked in 'tainted' gravy!

My family used to do the whole 'Oh you can't just only have that!' thing, but once they know how ill certain foods make me, they're really quite kind about it.

Not really it’s hard enough them manage food as it is. I feel bad making extra provision.

Feeling quite emotional today been through so much last 2y on my own. Lock down where had no physical contact anyone for over 6m then ongoing chronic pain issues. Then covid people don’t realise how difficult it is. Knowing can’t even let yourself sleep when have covid case oxygen drops to low but no one else to check if you are safe. Couldn’t let myself get upset or cry any point because difficult enough Breath as it was. Guess understandable for it to hit you at some point.

@Akire hugs xx

I did lockdown as a single parent, with my young Daughter. Wasn't easy, home schooling etc. But at least I had comfort of her by my side. I actually had a partner at the beginning of lockdown, but realised I could happily live without him. Weirdly, I couldn't bear anyone to even touch me now. I get more comfort from knowing others on this thread understand pain etc.

Hope that makes sense.

I'm both glad and sad that people on this thread get it....It's nice to know others understand, but at the same time I wouldn't wish it on anybody!
Had a good cry this afternoon grieving lost abilities and just the loneliness of it all, then put some makeup on and ate some chocolate and now I feel better, if a bit drained.
Sending hugs @Akire , you're right it inevitably hits you at some point.

@Akire that sounds really hard. Sending hugs and hoping that tomorrow is a brighter day....

Thanks @RainbowZebraWarrior funny just watching people Kiss on tv feels so strange all squelching put me off every kissing again. Sex seems far less intimate.

Sorry you had upset afternoon @bicyclesaredeathtraps hope it did the trick.

I’m sure I be fine just had process some things. Apart from thinking thank goodness I somehow managed get through that not sure what else we are supposed to do with feelings. For most normal people it’s a very rare event,for us feeling so sick and being incapacitated and having fend for self is constant thing. It does not become any easier does it. I don’t really know many single people even family so really hard to explain people. Anyway sure I just battle on we don’t have any choice so we. Just feel like something I should be doing with myself. No idea what.

Hope everyone gets some sleep tonight x