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

Hi @lolaflores I'm having a horrible time with pain in my arms. I miss arts and crafts,. especially at Xmas. I can barely wrap a present or write a card. What operation did you have on your neck? I'm recovering from thoracic outlet decompression surgery - surgery was via my neck, I've been told to allow 2 years for the nerves to settle down!

Sorry to hear so many of you have been affected by covid. I wish you all speedy recoveries

@toodizzyizzy

Hi *@lolaflores* I'm having a horrible time with pain in my arms. I miss arts and crafts,. especially at Xmas. I can barely wrap a present or write a card. What operation did you have on your neck? I'm recovering from thoracic outlet decompression surgery - surgery was via my neck, I've been told to allow 2 years for the nerves to settle down!

Sorry to hear so many of you have been affected by covid. I wish you all speedy recoveries

Hey, I had something similar but round the back of my neck. The surgeon said the outlets=channels in the vertebrae were narrow so he made them wider. As well as the discs collapse g As the symptoms have not got better (and ow left hand is effected) he wants to go in through the front which I'm feeling really reluctant about. My surgeon played it down so much deceiving it as some mild discomfort and a small scar...its and inch long. I'm waiting to see if things improve but my co ridden e has been shaken. I paint, sell some pieces and it's getting worrisome at the moment as the stiffness in my hands is worse than before

Hi all and massive hugs all round.

I got awarded standard level daily living allowance PIP this week, but no mobility element. I literally can barely walk and use crutches (appreciate there are wheelchair users here, and I'll be there too fairly soon) I was told that because I was on mild pain relief - 60mg codeine 4 times a day, which doesn't have much effect - I couldn't possibly be in pain. Saw my Rheumatology Physio tonight who I see 3 times a week and she said she would give input. I can't take Naproxen due to stomach issues. Was prescribed Celebrex by Rheumy consultant but blocked by GP as I have asthma. Take occasional Amytrpiline but avoid due to side effects. Awaiting review by Consultant. Desperately need a referral to pain clinic. GP will only refer to one specialist at a time. Need to see gastro, Immunology and Dermatology. Never mind Cardio issues. Pissed off and knackered. Sorry for the rant. You guys are the only people who understand

Does anyone here have EDS, PoTS and MCAS?

Sorry you didn’t get the higher rate. Mobility awards are based on what you can or can’t do. By sounds you least qualify for the standard if not higher rate. Are they saying 240mg of codeine means you can’t still be in pain so why can’t you walk? I’m shocked that GP is letting you have that much a day going by most people on here.

Hope new year you will appeal sounds like you have good case. Don’t give up most of it is luck not based on medical evidence or what you should be getting. It sucks though and so stressy

@lolaflores That sounds like a really complicated surgery, so sorry to hear it's had limited success. I totally understand why you feel apprehensive about further surgery. Any kind of surgery is an ordeal, but the neck is a very sensitive place to have major surgery. I still have to lie down for long parts of the day. I have a tough decision to make about further surgery next year too...It's hard to place so much trust in the surgeons. Last time they said they were going in through my armpit, but they had to go through my neck! I don't think I can do this again. Hopefully we both make improvements over the coming months!
@RainbowZebraWarrior sorry to hear of your difficulties with PIP, what a horrible thing for you to have to try and deal with. Most cases do win on appeal, sounds like you have a strong case

@toodizzyizzy I've had a few surgeries but the nerve decompression, though the smallest in some terms, was the hardest mentally to get over. The pain lasted for ever such a long time and getting feeling back was a struggle too and I find myself with the suspicion he has not achieved anything substantial but now I've got an inch long scar on the back of my neck, which although is a real conversation piece, I dont particularly appreciate it.
Do we reach a stage where there is just a dawning reality that there isnt much more can be done? I've put faith in a variety of specialists and havent had the outcomes I would have hoped for.
Manage our expectations?
If I could have proper psychological support for the pain long term, it may add more to the quality of life than surgery.
ThHaving said all that though, I do enjoy a nice pre med, well administered and the lifting sensations the anesthetic hits is really quite a giggle.
I dont get out much anymore and its the only legal fun I can have and its properly supervised.

@lolaflores I totally agree about the psychology support, there's very little support in the system. I hear some people mention pain management clinics, but I've no idea how to access that...I forgot to ask for my pre-med, I feel like I missed out there 😂

@RainbowZebraWarrior the same happened to me. Got daily living but no mobility rate. I didnt challenge it as I was afraid theyd take away what they did give me. I am hopeful that my renewal will give me more as I've got worse since my original assessment. I literally can't walk more than a few steps without needing to sit down.

Hope everyone had good day. Made it travelling at with family for week. Will keep checking in on how everyone else.

I'm in a lot of pain today. Luckily had my mum round to help me get in the shower and clean up before Christmas.
Shes coming on boxing day too to help find homes for all of the toys

Can I join in? In so much pain I could cry. I have back problems and every few months it's like something pings out and I'm in agony for a few days/weeks. I woke up like that this morning... usually it's because I've done something specific, today I just got out of bed and it felt wrong. Osteopath usually helps - she is around next week so will check if she has an space. On top of the back issues I have post-traumatic arthritis in left ankle after two sprains and three surgeries; the only thing that could be done now is a tibial-talar fusion. I had a fall in 2015 where I hurt my hip on the other side - since then I've had insertional tendinitis and bursitis which has not healed. Doctors think it may be to do with the ankle - so I've screwed up my right side through limping on the left. I'm under a good pain clinic, on a big cocktail of meds but sometimes it doesn't touch it. I have endometriosis too, mostly under control through permanent GnRH treatment (which could be adding to aches and pains I suppose). Thanks for listening!

cant sleep again. due my anti psychotic injection tomorrow, i have it every two weeks and usually the night before i dont sleep. just happens to fall on christmas eve this year. ugh wish i was tucke dup and asleep but instead im wide awake and in pain

@HerRoyalHappiness

I'm in a lot of pain today. Luckily had my mum round to help me get in the shower and clean up before Christmas. Shes coming on boxing day too to help find homes for all of the toys

So glad you have help. It’s worse time year for bending and carrying lifting

@AllLopsided

Can I join in? In so much pain I could cry. I have back problems and every few months it's like something pings out and I'm in agony for a few days/weeks. I woke up like that this morning... usually it's because I've done something specific, today I just got out of bed and it felt wrong. Osteopath usually helps - she is around next week so will check if she has an space. On top of the back issues I have post-traumatic arthritis in left ankle after two sprains and three surgeries; the only thing that could be done now is a tibial-talar fusion. I had a fall in 2015 where I hurt my hip on the other side - since then I've had insertional tendinitis and bursitis which has not healed. Doctors think it may be to do with the ankle - so I've screwed up my right side through limping on the left. I'm under a good pain clinic, on a big cocktail of meds but sometimes it doesn't touch it. I have endometriosis too, mostly under control through permanent GnRH treatment (which could be adding to aches and pains I suppose). Thanks for listening!

Hi welcome to the thread, what a very apt name! Sorry back ping has come at a bad time. Good luck to everyone struggling to make it through the long Xmas Eve!

@OneNightTimeMenaceStrikesBack

cant sleep again. due my anti psychotic injection tomorrow, i have it every two weeks and usually the night before i dont sleep. just happens to fall on christmas eve this year. ugh wish i was tucke dup and asleep but instead im wide awake and in pain

Sorry you had a bad night.

I was up a few times and feeling pretty drained today too.

Working until lunchtime and then got the rest of my wrapping to do sat on the floor. Not looking forward to how my back will be feeling tonight!!

@OneNightTimeMenaceStrikesBack

cant sleep again. due my anti psychotic injection tomorrow, i have it every two weeks and usually the night before i dont sleep. just happens to fall on christmas eve this year. ugh wish i was tucke dup and asleep but instead im wide awake and in pain

Did you get any sleep at all?

Happy Christmas eve everyone. I hope you've all been good this year

I am in a tough of pain due to trying to be OK and pitching in way past what I can achieve. I couldnt walk yesterday. I shuffled not because it was easier but because I could bot produce anything more significant. I am dreading xmas. My DD and DGD are here and I cant do anything but I feel bad for that so keep bendng and twisting and I cant. So I'm.back in ed in agony but also so upset I cant do much of anything. It's making me angry
We r having rest if family to.orrow after oo and I cant bear the thought.
I want to be left alone because no one seems to get it.
Hands swollen this morning. House looks shit and it's all beyond me. And I cant communicate it. So I'm just giving up

no sleep at all @Akire and still trucking along now. hoping i sleep tonight otherwise everything is going to suck hard

@lolaflores

I am in a tough of pain due to trying to be OK and pitching in way past what I can achieve. I couldnt walk yesterday. I shuffled not because it was easier but because I could bot produce anything more significant. I am dreading xmas. My DD and DGD are here and I cant do anything but I feel bad for that so keep bendng and twisting and I cant. So I'm.back in ed in agony but also so upset I cant do much of anything. It's making me angry We r having rest if family to.orrow after oo and I cant bear the thought. I want to be left alone because no one seems to get it. Hands swollen this morning. House looks shit and it's all beyond me. And I cant communicate it. So I'm just giving up

That’s so tough but family need understand if you can’t get out bed and pull their weigh. Make it all joint effort. Don’t feel bad, send lists!

In lot pain here still have wrapping to do but expected that and not that awful. Have keep pushing on next two days. Christmas wishes to everyone have best time you can and don’t feel bad if have stop and rest

Sorry I've been awol, covid has been making me fairly poorly. Very wheezy (sats a bit low today but not below 90 so I'm keeping an eye on it) and sore and achey more than usual. Also been being really sick which is not fun for Christmas. I'm isolating alone but haven't lost my taste so I was looking forward to eating chocolate for breakfast and antisocial food like garlic bread and hummus

Oh no @bicyclesaredeathtraps sending lots and lots of healing vibes your was so you get over it quickly!!

I'm just waiting for DD(12) to sod off to bed so I can finish wrapping and be Santa! DH keeps falling asleep which is fun cos I can't get in and out of our garage and that's where all the bloody presents are!!

Pain still at a moderate level thankfully now the covid effects have worn off.

Can't believe it's Christmas in a few hours. Less excitement this year which is weird. It's the first time both DC don't believe in Santa which in a way has been good as they have helped me wrap each other's presents and write labels! But also sad for me.

annnnnnnnnnnd im still awake