Chronic pain Pub Corner - support thread#4 All Welcome

[Akire]

Welcome to our new shiny thread for February. The lattes and expressos were not quite hitting the mark so we have moved to the pub. Whether you need Diet Coke or stiff drink help yourself we have a tab going and hunky staff are very attentive.

@Akire

Thanks *@RainbowZebraWarrior* I will look them up. Not sure if it is sore or just feels like it because after few hours it’s all better. Another annoying bizarre body thing.

Cracking headache today sigh. But did manage get out for few errands. Hope everyone is doing ok

Hope you're feeling much better now ❤️

Nerve pain is literally kicking my ass this afternoon. Oh joy

On plus side started using paper plates in kitchen as no room for dish washer which many seem is impossible on MN but no I don’t have space! But having sink clear without constant bowl and being able clean up Like that helps so much. Not going feel guilty if I had job used reems of paper a day would be no issue. But use a throw away product you are the worst human ever!

Beautiful day here even builders opposite have stopped making a racket for lunch. Pain is never quiet of course!

Sunny here too. DD is still off after being sick on Sunday night. It's free week at NT properties this week so I was going to take her to Delaval Hall but it's closed today. We shall go on Sunday instead.

Lovely day out here too 🌞

Lovely day out here too 🌞

Family kids have got covid again rates seem be high every where. Still being careful with masks and not really going inside places unless big and empty.

@Akire

Family kids have got covid again rates seem be high every where. Still being careful with masks and not really going inside places unless big and empty.

@Akire ❤️

Yeah the rates are crazy. I'm the same with masks and trying to stay out of places. Although I have just been sent for wine by my mother (I get her shop delivered, but she didn't order enough) so I've quickly tried to navigate Sainsbury's. I've got terrible issues with my stomach and just made it home in time. My body not being able to tolerate so many things is massively doing my head in.

Fruit and veg? Nope. Not a chance. Get healthy and lose weight? Hahaha.

Just coming to hide in here as I made the mistake of reading a thread where loads of people were discussing disabled people who they absolutely knew were milking it as they sometimes do fun stuff but then dare to need help with day to day stuff.

On that note we did two long walks at the weekend (first time since breaking my ankle) and have paid for it since. I'm so fatigued and my limbs feel like very heavy jelly.

Hi @MedusasBadHairDay yes often lots ablist threads on here. I made mistake of going on the Queen and wheelchair one. Apparently it’s not being anti disabled to say you would never use a wheelchair because you are proud and independent person. It’s a chair with wheels that’s it! Fact most people rather been stuck at home than use one shows how awful bad feel they see it because in their eyes their social standing will take nose dive. If society really saw people who use mobility aids as just like them would never be an issue.

@RainbowZebraWarrior I have same trouble have bowel meds or else struggle to go loo as body doesn’t move well being wheelchair user. But can’t take them if going out in the morning as may need go 1-2-3-4 times with 30 second warning. Which causes more problems. Still not getting very far with losing weight I’m good all day but then hungry in the evenings.

Yep @Akire and @MedusasBadHairDay The " My relative is too proud to use a wheelchair" and "it's not the same when you are young, as it can give you some quality of life, as opposed to someone in their 90s who has to admit they may be at the end of their lives" comments just don't get the full Disabilty Picture At All I'm sitting on my hands, but may need to comment and put certain folk right on that score.

Fuck me, I hope I live into old age and don't leave my daughter without her Mum while she is still so young.

For me it was the thread with the mum struggling with caring for a disabled daughter while she's got covid, most of the replies are people with sympathy for both, but there are some who seem a little over enthusiastic in their desire to talk about horrible entitled disabled people they know.

How is everyone today? I know it’s much quieter lately with what’s app chat going as well.

My pelvic pain is back with full sodding force. Due see Gyne first week or two of April not holding up much hope. The last steroid treatment took 5 weeks work, gave me 3.5 weeks of no pain then back. His treatment would only give me 3 weeks out of any 12 pain free. But I’m going padlock chair to his desk until he gives me decent pain relief since I keep asking Gp and don’t get.

Had lots lately due to other issues but even though they agree I need pain killers they still only ever give as a one off. Like I’ve got days per month to try get hold and make another apt to say the same things over and over.

Did manage get out and met friend in sun day but probable why I’m paying for it now. *pulls very sad face. Plus mislaid my driving licence so can’t buy any booze till I find it!!

Hi @Akire I agree, it's gone quiet. So sorry to hear that your pelvic pain is back with a vengeance. I would definitely say that the medical professionals have not got to the bottom of it yet, but sincerely hope they do and fast.

Regarding pain meds, I guess I (eventually) hit lucky in a way that I was diagnosed with Ehlers-Danlos syndrome so not many GPs / Practice pharmacists argue with my meds. I think I've already said that I'm on max dose of Codeine. I went to pick my Script up today and one of my meds is now unavailable. It's happened before, and I was told there was no equivalent. Except it turned out today that there is. Although it's three times the strength. I had a phone call within an hour and it was sorted.

I've been to my physio rehab tonight. Been going for 6 months nearly now. I see people 30 years older than me coming and going. Yet here I am, The Resident. I've not met a single person who has a 'lifelong condition' It really makes me think about the system and how it works regarding people who are Disabled and what Disabled actually means. Especially in younger people. (Like those of us in our 20s, 30s, 40s and 50s) The dept is largely set up for those 70 plus who have had joint replacements etc. Not saying that those who are older are less deserving, but that us who are younger are often overlooked and ignored.

I've been 'buddied' with a lady who has been diagnosed with Fibromyalgia. She is struggling to come to terms with it. The physio is so busy dealing with other patients that she has literally had to hand her over to me as I'm the positive person who will hopefully be able to help her.

My brain fog is back in force. I had a physio appointment yesterday, and the fog was so bad that I couldn't talk until the end of the appointment.

The physio was very understanding though (she was new to my case) she's going to book in weekly sessions for me and coordinate a physio plan for me to do at home ❤️

ive been really struggling recently. they want to reduce my painkillers inline with the newer NICE guidelines for treating chronic pain and its crippliong me. i havent left the house except for medical appointments for months now, not since my wheelchair got broken. i just dont have the spoons for it at all.

sorry to hear about the brain fog coming back with a vengance @ICrunchCrispsNotNumbers i know how that feels, the headache i have every single day gives me intense brain fog, i cant even contemplate thinking or talking til at least an hour or so after i get up

@OneNightTimeMenaceStrikesBack

ive been really struggling recently. they want to reduce my painkillers inline with the newer NICE guidelines for treating chronic pain and its crippliong me. i havent left the house except for medical appointments for months now, not since my wheelchair got broken. i just dont have the spoons for it at all.

sorry to hear about the brain fog coming back with a vengance @ICrunchCrispsNotNumbers i know how that feels, the headache i have every single day gives me intense brain fog, i cant even contemplate thinking or talking til at least an hour or so after i get up

@OneNightTimeMenaceStrikesBack I know the feeling. ❤️

What sort physio is for fibro? Can’t remember what other condition you have. Apt are so draining with all traveling and things. I don’t get brain fog but know draining can’t remember things well.

Trying update council on rent going up for housing benefit claim what a mess. Had sign up to new online portal but don’t have housing benefit claim number Because applied years ago and it goes straight to landlord I get no yearly letters or summary so I’ve no idea. Council website goes round in circles. So written to them (but no address given it’s all online) see if gets there or not. How elderly or more disabled with less IT skills are supposed manage claims I don’t know.

But if you want to let them know about benefit fraud really easy to phone or email or write of course! No searching hard for that information.

i have a call with the physios fromt he gps surgery tomorrow morning to see what they can suggest for my knee. i said a call was okay to start witht hen i dont have to leave the house but it may be that they want to see me in person as well

Jeez @Akire that sounds frustrating about the council website. As you say, no idea how elderly would cope with that.

I have weekly gentle physio rehab in the hospital gym for my EDS. My physiotherapist has referred this lady with fibro hoping a similar programme will work for her.

@OneNightTimeMenaceStrikesBack that sounds rubbish. I'm not sure the NICE guidelines say that people's pain relief should be reduced when they have certain diagnosed conditions. I read them lately and I'm sure where certain conditions are diagnosed, they aren't supposed to fuck with your meds and leave you in more pain. I'm a pain in the ass when it comes to this though, and tend to have my argument prepared in advance in case they try it with me. In the past, if I'm not prepared, I find myself agreeing to something I don't want like meds being changed or being discharged (or used to feel that I wasnt supposed to argue with them about it) The way I see it, I'm the expert on my condition. It's hard to always fight and advocate for yourself all the time though. Bloody exhausting.

I've been on a school trip this morning. Had to be planned with military precision and had to involve my Dad, but felt good to do something positive and feel included in something. Bloody knackered, but I've timed meds well. Going to start going into school once a week to help those struggling with reading.

I agree that far as I know NICE are not for a named condition. They screw up those who don’t have one with their here have some anti depressants and use mindfulness app.

Glad you getting some weekly support that makes a difference. I’d like to be able to some voluntary work again but can’t commit to day or time really. I try met friends for coffee once week come what May but after half hour sometimes I’m on my knees. She’s good though doesn’t mind if I am done and need get home to rest.

Bloody kidneys still hurting so decided they have till Monday stop and then fill in my millionth e-consult form and see what hey say. Not heard about bloods so no doubt tell me good news that it’s all fine! It be nearly 4 weeks if I see someone midweek since said come back in 2 weeks so not like not given it chance.

it is rubbish @RainbowZebraWarrior i was on a LOT of oxycodone and i know one of the things they were worried about was my kidneys packing up from it so thats another reason they want to reduce. they arent stopping it completely but just reducing it but its leaving me in a lot of pain even though they are doing it super slowly

@OneNightTimeMenaceStrikesBack

it is rubbish *@RainbowZebraWarrior* i was on a LOT of oxycodone and i know one of the things they were worried about was my kidneys packing up from it so thats another reason they want to reduce. they arent stopping it completely but just reducing it but its leaving me in a lot of pain even though they are doing it super slowly

Such a difficult balance, lovely. Can't remember if you've mentioned it, but since that decision has been taken, have you been referred to pain clinic? (Living with pain I think they are called now) I've just been referred myself and I'll be interested in what they say.

i havent been referred as yet i dont think but im going to ask about it. i need soem support, im suffering adn thats no good at all