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!

DD has been in lots of joint pain today but we have still managed to put together a fiendishly difficult hamster house! She got hamsters in December in an effort to have something that would keep her company at night. They are very sweet. Now I am knackered ( I have chronic fatigue after chemo) and she is looking see through with exhaustion

No one on this thread should feel lazy or guilt about getting a takeaway btw! However we all get through this is perfectly reasonable!

[quote Worrysaboutalot]@RosemaryShortcake Hope you are well on the way to planning your complex things. Hopefully once you start writing things down, you will feel better.[/quote]
I got through some info and it was so much simpler than I thought! Worried I might be oversimplifying it but it's definitely not as hard as first thought. Its been outstanding for ages and I feel like its a massive weight off! I'm going to celebrate when its done.

I am worrried I might be headed for a crash soon. I am going to have soup and cottage pie for dinner. Soup first then tidy up while cottage pie cooks.

I just wrote a poem actually about chronic pain... I've never written a poem before!

How are you today? Oh I'm fine we lie. Because the pain is always there, it never goes away.
Like a bag that's chafing into your back but you've only started walking, some way in someone adds some weights and they just carry on talking.
Some time later you're trudging on... There's still a way to go. You want to stop and rest and say please, stop, no.
You're feeling tired, so, so tired. But the journey isn't over, the weight is just about crippling now and the end is not in sight. Someone tells you it's all in your head, come on, we know it's tough but you just need to fight.
But your fighting spirit is in decline, worn down by the endless trudge...
So how are you today, I'll let you be the judge.

@doadeer

I just wrote a poem actually about chronic pain... I've never written a poem before!

How are you today? Oh I'm fine we lie. Because the pain is always there, it never goes away.
Like a bag that's chafing into your back but you've only started walking, some way in someone adds some weights and they just carry on talking.
Some time later you're trudging on... There's still a way to go. You want to stop and rest and say please, stop, no.
You're feeling tired, so, so tired. But the journey isn't over, the weight is just about crippling now and the end is not in sight. Someone tells you it's all in your head, come on, we know it's tough but you just need to fight.
But your fighting spirit is in decline, worn down by the endless trudge...
So how are you today, I'll let you be the judge.

That’s great doadeer it really does help to use different mediums to express how it feels. You should so write some more!

That's a great poem, @doadeer

I'm fortunate at the moment, as the most recent broaching of the It's All In Your Head gambit was headed off by finally getting my promised MRI from last January - whilst they were at it in the multidisciplinary meeting, they pulled an old 'normal' hip x-ray and have now discovered I have multiple sites of bursitis in hip, ankles, feet and toes. All part of the Psoriatic arthritis, apparently - it's attacking them as well as the tendons. And the hypermobility/EDS. But we tend not to speak about that, as the PsA is more interesting for them.

I have a feeling that I've scared them off the 'sometimes nerves forget to switch off' story for the time being. I blame my grandmother for the clipped, stupidly posh voice that comes out at such moments.

'Does this hurt?'

'Not particularly, no. If you leave the fibro trigger points alone and poke at the entheses instead, however, you'll get a slightly more animated respons-OWW! Yes, there.'

'The problem is that sometimes the nerves...'

'Is that strictly relevant when it's only coming from whatever particular joint has swollen up to three times its usual size and stops hurting the moment I've had a bloody great needle shoved into it a steroid injection?'

'It's useful for people to try a little exercise when they're largely immob - '

'Oh, I've got my FitBit reports here. Would you like to see them?'

'How did you get on with your physio appointments?'

'I clicked on the link they sent me. And when they called to check if I'd watched it, they were very nice. It must be hard for them to only be able to tell people to watch something on YouTube'.

(Yes, I know I sound like a dick. A posh dick - for which I blame my grandmother, as it's certainly not my voice coming from my mouth at the time).

I really, really miss the gym. Lovely warm water, nice and safe weights machines, the rowing machine - no hyperextension, no subluxing, no bastarding foot and ankle pain, aircon, headphones on and zoned out. I just have to keep going long enough after work to be able to make it back there after lockdown ends, as at present, I'm dragging myself through the door none and a half hours after I left in the morning and planting myself firmly on the sofa until bedtime. After DP has cracked my back straight again, naturally.

I can relate to a lot of that @NeverDropYourMoonCup. I was asked at my last Consultant appointment how physio was going and I said yhat whilst I did welcome the opportunity for a chat with someone to whom I'm not related, there's a limit to what can be achieved over the phone.
I do understand the problems, but care for people with chronic conditions really has been shit during the pandemic hasn't it?
I resorted to referring myself for a private MRI scan last year as I'd probably still be waiting now for an appointment from the local Trust. The guy who phoned me with the results must have thought I was quite mad when I said "Oh thank you, that's great!" after he read the list of findings. But there is such relief when someone tells you that there is a reason for what you are going through.

It’s sad that you always have to have these answers in your head to counter argue why you “are not all better yet”. You sound like someone who I’d like to see in action.

Hi can I join you all? I have chronic migraines which causes paralysis and functional neurological disorder and a whole load of other things.

Currently struggling a lot with ovary pain which has increased 10fold in the past year but can't get a referrals for it as it has been ultrasounded/ MRI and apparently didn't show anything but has been ongoing for almost 15 years now, now blamed on my weight except it getting worse has coincided with losing several stones so it should be getting better not worse. Gynae referrals have been done in the past and various meds tried so I was told that it was probably psychological.

My GP is reluctant to do much pain wise, pain management is at a standstill as the GP won't increase pain relief until I see the pain clinic who have now rejected 5 separate referrals as can't offer me anything that I haven't had in the past (and reacted badly to in most cases). They say to see a psychologist who psychiatry says isn't appropriate so was blocking the referral. Psychiatrist doesn't offer anything either just a recommendation to take paracetamol if needed.

Physio has only been giving me the same exercises over years and they haven't made any difference apart from more pain over 10 years but say nothing else can offer. Advised me to stretch more so that I wouldn't spasm up. I was offered hydrotherapy but then was blocked due to incontinence which I can understand,

Urology was ready to do BOTOX in March last year which was also put on hold as it had taken years to get approved due to my past reaction to having BOTOX for migraine, it affected me badly with an unusual reaction but urology were going to try once I learned to self cath. I'm also waiting for bladder instillation for IC. Im waiting for removal of an adrenaline producing tumour from endocrinology which was to happen in April but was put on hold. I was due to get a lump removed from my neck last year but was cancelled due to Covid. It's putting a lot of pressure on the neck and shoulder area. I have weakness and pain in the left shoulder, was waiting for xrays in April. (The common theme is waiting and it's on hold due to Covid)

Todays achievement has been just getting thru the day. It's been a bad day here.

Hi @NotanotherboxofFrogs you are very welcome. Goodness your story sounds familiar to me. One neuro condition that screws up body responds to pain. Then over years develop major pain in various other areas Gyn, joint, bladder, digestive etc told can’t find anything would cause “that much pain”. And basically left to it.

Having pain that would send most people to A & E and you have live with it knowing it’s probable nothing but unless you see limb hanging off it’s probable “just pain” and you sound just ignore it.

I actually slept ok last night and so glad I need half a chance of getting through today.

Welcome @NotanotherboxofFrogs, sorry you've had everything cancelled because of covid. I'm in the shame boat, need meds a increased and an operation but can't have them because of bloody covid.

It's so annoying when you get referred to physio for pain, when you know it's not a movement problem. I just got a list of stretches to do, which is laughable as it's only when I stretch do I get pains. My condition is rare, I'm yet to meet a GP who has any idea about it, or doesn't treat me like some sideshow when they hear I have it.

Lovely and sunny here today, hope everyone is having a good day.

I went out! Just a roll around tiny local park a few streets away. No outside space as in block of flats so feels like major achievement.

Welcome!

Stretching isn't the be all and end all. I think keeping muscles strong is so much more important personally. I'm curious what all these physio exercises are?!

I'm also highly skeptical of physios - before my damaged facet joints were diagnosed, a physio assessing me for pain tried to force me into a backend though I explained it was painful. He said so... See what happens? I said... I won't be able to look after my son if I can't stand up. He was so vile. It later showed on mri damaged through 4 of my facet joints compressing the nerves and preventing movement.

That having been said... I am firm believer in trying to engage with gentle movement and engaging muscles, but definitely not the same 4 exercises every day... How boring that would be!

You have to assume the only person who knows your body is you. Even if you have a straight forward condition you still need know your limits and danger signs.

How is everyone doing today?

I've had very mixed experiences with physios. Some have been lovely, and really helpful. Others, less so!
There was one horrible, unsympathetic woman who "looked after" me when I was in hospital straight after the accident that's at the root of my problems. She seemed completely incapable of understanding quite how much it hurts to try to walk, even with a zimmer, when you have multiple fractures in different parts of your body. I only cried once after the accident and that was after physio with her. My consultant saw me crying and was horrified at what she'd been telling me to do and thankfully I never saw her again after that.
But I've also seen some lovely, really empathic physios who've helped me a lot.
In other news, we've got beautiful weather here today. Sunny, and a temperature in double figures - always makes me feel better. I've been out for a bike ride with a friend this afternoon which was really nice. I hadn't realised quite what a psychological boost being officially retired would give me. All the time I've been off sick, I would be hoping that nobody saw me on my bike as it would look like I wasn't really ill. It's ridiculous of course as everyone involved in my care had told me to cycle as much as I can, to regain muscle, improve cardiovascular fitness etc but I still felt guilty. Now I am able to have guilt free exercise as it is nobody's business but mine what I do with my time.🙂

A bike ride sounds heavenly well done you.

I had an amazing physio when my back first went wrong, unfortunately we had to move to another town and none of the other physios have been good. I had one argue with me about being hypermobile even though I had my diagnosis by then.

When I went to the pain clinic the physio running it asked everyone who'd had bad experiences with physios to put their hand up, every hand in the room went up.

Saw this on Facebook earlier

www.pilltime.co.uk/?utm_source=Facebook&utm_medium=social&utm_campaign=Mind&utm_content=Image2

Has some mixed reviews so not saying it’s any good! But not seen pharmacy offer online to sort pills for you before. Some of us have a lot to sort out.

My joints were doing badly yesterday, hips did that thing where they haven't fully subluxed but were clearly not in quite the right position, this morning my left thumb subluxed when I dried my hands on a towel (I mean, really?!). Then I managed to trip over, crash full body into a door frame and land on hands and knees - so now I've fucked up both wrists, elbows and knees, and my right hip and shoulder. I could cry.

That sounds like a bad start to the day. I only ever pop my shoulder sometimes. Feels fine then roll over in bed lay on it then crunch and something clicks and crunches.

Can you do anything about joints today? Or will they sort themselves out in time?

They'll sort themselves out eventually, suspect it might take a little longer this time though.

@MedusasBadHairDay that's sounds just rubbish. DD has been subluxing all over the place this last week. She's in so much pain. I'm just utterly fed up with the lack of help she's getting from the nhs

I managed a couple of things this morning. Admin stuff I’ve procrastinated about. So I’m proud of that.

Then little one got sent home from nursery with a fever, so ordered test blah blah blah.

Also got a message about an appt with universal credit - I think it’s the “your child is old enough, now get a job” appt. I have started a thread about it as I’m worried how understanding they’ll be about my health (I do want to work, I’m not arguing against that). Incidentally this is the kind of thing that a chronic health board would be perfect for but I’ve put it on the money board instead.

Ow Medusa! I hope you're OK, does this happen a lot?

I'm having the worst fatigue I've ever had... Just a heaviness across my eyes so strong.

I worked this morning and thank god I managed to get what I needed done.

Tomorrow is when they burn the nerves - I'm very nervous but I can't go on like this. I hovered for 3 mins and I was sweating with pain 🙄

Oh no Sing hope you can find the right information to help. There is always something to fight isn’t there.

I had rubbish morning but managed a sleep so feel like ready start the day at 3!

What time is Op tomorrow?