CHRONIC PAIN - share your moans and achievements

[doadeer]

Hello,

This thread is to share the day to day... The moans, rants, fears, anger of day to day living with pain... And let's be positive where we can too... Little or big achievements.

I've had a tough day with my grumpy toddler who is obsessed with biting, he made my shoulder bleed today 😢

On the plus side, had a great pilates class and managed some tricky stuff despite feeling exhausted... I couldn't have done it unless my teacher was on Zoom telling me to hold it!

@SinkGirl oh my goodness that's dreadful.
What do you believe is the cause of your back pain? Can you get any more GP Referrals? Can you afford anything private?
Sounds so horrendous I'm so sorry for you.

Ps 👋 from etsy chat thread

@Akire Are you able to exercise at all or just too tired? I know when the fatigue hits it's the last possible thing you can do

Hi @SinkGirl Many of us have been there. Battling to get pain relief and be taking seriously. E-consults are a nightmare. They don’t even have a box for long term condition this will take more than 250 characters!

There must be a tiny % of people who get high on pain killers. I have much less side effects getting drunk. Please find a seat and rant away as much as you like. It sucks to be in pain and basically be given the bare mum of support and be expected to be greatful! (But not to much like you are a junky! )

[quote doadeer]@SinkGirl oh my goodness that's dreadful.
What do you believe is the cause of your back pain? Can you get any more GP Referrals? Can you afford anything private?
Sounds so horrendous I'm so sorry for you.

Ps 👋 from etsy chat thread

@Akire Are you able to exercise at all or just too tired? I know when the fatigue hits it's the last possible thing you can do [/quote]
I’m a wheelchair user so use most of my energy is trying to do the basics. I suspect I have fibromyalgia on top as every muscle joint hurts constantly as well. So not like moving the bits I can is pleasurable in anyway. Even going swimming is seriously expensive with taxi and carers so talking £65 a pop. And nearer pool is shut now but tiny chance may re open. But when it costs so much money it’s not something can do.

Oh that's very tough. I wonder if a little chair yoga stretch would be nice? Just very simple stretches? Swimming must be such a hard activity

Oh I'm glad to see this. It fell off my list. I'll go back and read up!

I don't want to reduce us down to our conditions but could it be helpful for everyone to post about their conditions, medications, where they are at?

Could be helpful for others on the same path 💐

Thanks all. I’ve been on opiates of some form since 2004. In 2016 I was on an enormous dose then got pregnant and cut my dose down by 90% by myself with no medical help as my pain improved a lot. That’s not good enough though - every two months I get a call pressuring me to cut down further even though my pain is worsening and my dose hasn’t increased for 4 years, only gone down.

I injured my back when I was pumping for my twins - all the hunching plus double the relaxin. Now it’s aggravated by all the lifting (they are both disabled and still in nappies) so where they’ve been home most of the last year there’s been no respite. Now all it takes is sitting and working for an hour and I’m in unbearable pain. I have a huge area of numbness across my back, neuropathy in my arms and legs and they won’t even refer me for a scan. I think I will have to see someone privately but I have no idea who or what I need, and I’ve been so focussed on my boys I just have let things get out of hand. I think it’s very likely I have a slipped disc but they say it’s rare for upper back slipped discs to cause pain. Not impossible though right, and shouldn’t you want to check, after four years?!

The irony is that Valium, even at the most they say I can take (8mg) makes me less drowsy than half a glass of wine (not that I drink any more). Morphine doesn’t make me at all drowsy any more. I always say I’m more than happy to come off it if my pain is under control so how will we do that or what can I try instead - and they say oh no, we aren’t suggesting doing anything or replacing it with anything. I’ve got two disabled kids to care for, I can’t lie in bed all day.

They keep saying I have fibromyalgia but I bloody well don’t - it’s just easier to say that and tell me to go away.

Hopefully they’ll at least refer me back to the gynae - they wanted to do a hysterectomy on me a few years ago but I said I wasn’t ready. I would rather have another excision surgery but maybe I should just do it.

Hello folks. I’ve got chronic degenerative disc disease, osteoarthritis & bifidic (split) nerve roots in my spine (all diagnosed at 20, bummer), then 8 years ago along came Simon the synovial cyst (and friends) at L2-3. Lots of micro fractures & bone spurs.

I refuse to take morphine again until I’m 50 (so only a couple of years to go lol) so trying to hold steady on fistfuls of Tramadol, Amytriptaline & pregabalin. Trying to keep the ‘big guns’ of morphine & fentanyl for the next 30 odd years of this blooming existence lol.

Been a doozy of a few days pain wise, back on crutches & lots of ‘pacing’. Bloody pacing. If I start an activity, I want to ruddy finish it, not stop start with the unhelpful pain management suggestion of ‘pace yourself’. Too impatient is my trouble!

It isn’t the pain that is my biggest foe, it’s the frustration of my body not doing what I want it too, or restricting my activities. Not to mention the ruddy side effects of pregabalin (turns my brain to mush). I reconciled the pain years ago, but still struggle with reconciling the sodding side effects!

Anyway, always lurking somewhere around if any back pain compadres need to rant.

Welcome any newbies. Please join in with chat or just a smiley so we know people are around even if have nothing to say. It can be such a lonely path and having others around helps.

We find it’s easier to quote who you are replying to as makes it easier for everyone else to catch up with who you are talking to plus less names and details to remember for the druggy haze !

I'm still here, with my stupid arthritic feet and my stupid damaged knees. From the waist up I'm pretty shit hot actually, but my knees and feet are just a disaster. Which is unfortunate when most activities involve walking around.

Went for a walk with a friend yesterday for half an hour and kept having to remind her to slow down so I could walk more carefully and be less sore.

I bought some hemp cream balm from a recommendation on another thread here, it arrived this morning but I haven't tried it yet. Dh keeps teasing me about how it will make me high. That might be quite nice actually. I'm planning to use it on my big toe joints first but they're sore so I don't actually want to touch them to rub anything in. I'll do it first thing tomorrow when they're less tender and report back if it makes any difference at all.

In case this is helpful, my DH sent me this snippet from a work email ( he's NHS)

"NHS England is expanding the use of gammaCore after successful trials held over the last two years."

"A small, portable device that can zap away excruciating headaches is available to anyone who needs it on the NHS. The gadget is held against the neck and delivers a low-level electric current to block pain signals, relieving pain from people suffering from ‘cluster’ headaches."

I'm assuming you just ask GP.

So DD ( who I care for 24/7) has very severe ME, POTS, asthma, eczema ( really bad), EDS and probable Lupus/ sjogrens plus various other smaller things. She is in unmanaged pain 24/7. She can't walk, she can't sit up. Eating and drinking very hard as she has multiple hypersensitivities which make smell and taste odd and she vomits/retches a lot when food or drink is anywhere near her. She's amazing though

Have we all survived Wednesday? Still feeling down in myself. Being trying out finger on why so annoyed. Maybe because never have allowed myself to be ill. I mean I know I am but day to day I find myself get annoyed at my limitations with fatigue and pain. How do you not get frustrated at yourself?

@Rae36

I'm still here, with my stupid arthritic feet and my stupid damaged knees. From the waist up I'm pretty shit hot actually, but my knees and feet are just a disaster. Which is unfortunate when most activities involve walking around.

Went for a walk with a friend yesterday for half an hour and kept having to remind her to slow down so I could walk more carefully and be less sore.

I bought some hemp cream balm from a recommendation on another thread here, it arrived this morning but I haven't tried it yet. Dh keeps teasing me about how it will make me high. That might be quite nice actually. I'm planning to use it on my big toe joints first but they're sore so I don't actually want to touch them to rub anything in. I'll do it first thing tomorrow when they're less tender and report back if it makes any difference at all.

Are you at the need a stick stage? Would your friends be shocked if you did? Sometimes you need an obvious I need to walk slowly sign for people to take it seriously. Though it is a big step (ha)

Hello! I want to share a chronic pain achievement! 😁
For 3 years had a torn meniscus and mild osteoarthritis in a knee. Had a jab (Ostenil) which sorted it for a year. Pain then came back, had a second jab....failed. Day and night pain. Couldn’t drive manual car, could only walk for 30 mins tops. Taking ibuprofen every night.
Went back to surgeon and was booked for an arthroscopy. In meantime, was scouting shelves in Boots and saw ffing expensive tablet called “Regenovex”...Thought “what the hell”....after a week, pain all gone! Am walking non stop, have dug garden over, can drive manual car again and sleeping well with zero pain killers. Surgery cancelled. Couldn’t be happier....I hope this might work for anyone else as it has for me! 😁

Hi again! Sorry I've not been around much - I've recently started a new part time job which I love. I'm so happy to be getting back to work, but it's so tricky managing everything.

I have a condition called Kienbock's disease which ultimately means I only have the use of one arm. I had surgery last year to remove my wrist bones.

Are you at the need a stick stage?

No. I just need to walk slowly. But I see what you're getting at about a visual prop. I'm not sure how to use a stick, that would be weird.

@Lotusmonster I'm going out to buy Regenovex tomorrow, I also have a meniscal tear in my knee to add to my lower body misery, but not bad enough yet to warrant surgery.
I'll throw money at anything that might help me right now.

@Lotusmonster I've just bought some from amazon! My condition is a bit different to yours, but I'm hoping it will help as mine also involves bones and tendons and things

Always good to hear of things that help Just need discover couple dozen more!

@Rae36 and @DuckWithOneWing.....try a packet and see if it works. For me, I felt radical improvement after a week. If it does work for you then Boots have it on 3 for 2 which does bring the cost down per packet. You start with 10 days on a double dose then go to a single tablet. Come back to the thread and let us know if it did work! 🤞🤞🤞🤞

Sorry, I've been AWOL for a while and just back for a moan really.
I needed to phone the GP today, to beg for painkillers of course, but I had a bad night so overslept. You can only book any kind of appointment on the day now and phonelines open at 8.00. By 8.30 you're wasting your time calling as unless it's an absolute matter of life and death you'll be told all appointments are gone and to try again tomorrow. I woke up at 9.15. To add insult to injury I had set an alarm to avoid this happening but it didn't go off as I'd set it for the wrong day.....what an idiot.
And I can't try tomorrow as I've got to deliver kids to various places where there's a poor mobile signal at different times of the day, and they'll never tell you when the doctor will call back. So I am going to have to be very sparing with my remaining painkillers til next week.
It's a really ridiculous system, I don't know what the advantages of it are supposed to be. How people who work manage I don't know, as surely there are plenty of things people need to call the GP for that don't need them to be at home off work.

I agree same with mine. If you are sick you could have been up all night so setting alarm is extra hard.

Can you book a regular apt? Or do they take weeks?

I’ve been thinking how I can be minding to myself. If I’d just had an op I wouldn’t be telling myself come on move! Sometimes we can be our own worst enemies.

Also looking nice motivational or pain related life quotes that maybe I can put to remind myself that’s it’s not my fault and I am doing my best. Do share if you have anything.

@MrsAvocet

Sorry, I've been AWOL for a while and just back for a moan really. I needed to phone the GP today, to beg for painkillers of course, but I had a bad night so overslept. You can only book any kind of appointment on the day now and phonelines open at 8.00. By 8.30 you're wasting your time calling as unless it's an absolute matter of life and death you'll be told all appointments are gone and to try again tomorrow. I woke up at 9.15. To add insult to injury I had set an alarm to avoid this happening but it didn't go off as I'd set it for the wrong day.....what an idiot. And I can't try tomorrow as I've got to deliver kids to various places where there's a poor mobile signal at different times of the day, and they'll never tell you when the doctor will call back. So I am going to have to be very sparing with my remaining painkillers til next week. It's a really ridiculous system, I don't know what the advantages of it are supposed to be. How people who work manage I don't know, as surely there are plenty of things people need to call the GP for that don't need them to be at home off work.

It's so frustrating when the GP system operates like that. It's the same for us, and I've got to a point where I just ignore that and ring at any time, telling them I need to talk to a Dr now. It usually works. Hope the rest of the week isn't too tough.

I have hypermobility/EDS. I wasn't diagnosed till my late 20s, and then having children has made things worse. I spend most days with sore knees, then the rest of my joints take turns to make life difficult. And I seem to be going through a flare up of costochondritis, which is supposed to be a temporary thing but is becoming more long-term.

Yesterday the dog bashed her head against mine when I was giving her a cuddle - she thought I had treats - so that gave me a headache that hasn't yet gone away.

But. I have managed to get some gardening done, which always helps my mood, and bizarrely haven't suffered from doing it yet. I keep waiting for the consequences to come.

@Akire

I’ve been thinking how I can be minding to myself. If I’d just had an op I wouldn’t be telling myself come on move! Sometimes we can be our own worst enemies.

Also looking nice motivational or pain related life quotes that maybe I can put to remind myself that’s it’s not my fault and I am doing my best. Do share if you have anything.

I mean kindness to my self not minding!