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!

@doadeer

I'm still in bad shape with my lower back, I'm being sent for more imaging, it's a one where they add a radioactive dye to get a better view at the bones.

The down side is I can't be near my toddler after. Going to sneak back in and lock bedroom door till he goes to bed 😢

I'm still doing exercise classes with a PT 2-3 times a week but bloody hell its hard. I feel like I have a permenant hangover and I'm getting migraines and headaches almost every other day. Feel like my body has just had enough.

That's so tough, it's impressive that you are still able to do the exercise but the headaches sound awful.

My ankle is doing better, but still sore so I'm reluctant to exercise on it in case it sets me back to square one again. I'm hoping it wasn't doing exercise last week that made it go all weak and rubbish in the first place. If that is the case then I'm at a loss how to get around that.

I'm very careful with exercise. I do 1:1 with a pilates teacher specialised in back problems. I have to feel strong as I can't bear the thought of this being my reality, I need to find a solution 😢

What exercise did you do? Hope it didn't cause you pain

Hi all just checking in. Nice to see some more new people. Been pushing myself to get bits done at home so paying for it in 90y moaning body with every move. But at least the sun is shining, even if it is still cold.

It's freezing out of the sun! Crazy weather. Was DH birthday yesterday and normally I'm in a dress with bare legs this time of year. Very strange

I'm feeling a bit better about my pension situation now. The pensions adviser from my union called and said that she'd never seen things as badly explained before so it was no wonder that I was struggling to understand the letter from my ex employer. She deals with this process every day and it still took her a while to figure out what they were saying, which made me feel significantly less stupid! I can proceed with the paperwork now anyway, so that's good news. Fingers crossed things go smoothly from now on.
I hope everyone has the same lovely weather that I'm enjoying today and has a good weekend.

Hey everyone. I’m massively struggling and just don’t know what to do from here.

I’ve had the worst pelvic pain I’ve had for many years for the last 4 weeks. Also my upper back has gone into spasm. I’m climbing the walls in agony.

I did speak to a GP who referred me for an urgent scan which was on Tuesday and was totally normal. Also had blood tests today. She’s referred me back to the gynae but have said it will take ages due to backlog. I obviously need another laparoscopy.

When my pain was this bad before I was on 1100mg of morphine every day. When I got pregnant I cut that down massively. GP has gradually extended the length of time between my repeats so I now have a maximum of 80mg per day and they get very shitty if I request it even a day early.

This week in absolute desperation, I’ve just taken what I’ve needed - not to be pain free, but just so I’m not crying and curled up in a call. I’ve been taking about 180mg a day since Monday.

I’m going to have to call them on Monday, to see if there’s anything else they can do for me, and to tell them that I’ve had to massively increase my dose just to be able to get out of bed. So on top of the pain I have the stress of knowing how this will go down, and the worry that they will refuse to prescribe again until it’s due which could mean a few weeks of no pain relief at all if it carries on like this.

I literally don’t know what else I can do though? I’m not sleeping due to the pain, struggling to eat, it could be a year or more until I get surgery. I contemplated A&E tonight but since I had a scan on Tuesday they’ll just tell me there’s nothing they can do and to go and take the pain relief I have at home which is fair enough.

I guarantee that if it were the GP they would take the pain relief!

Dreading having to deal with this next week.

Cortisone injection in my hip today - which is now aching like crazy. And my shoulder’s no better. Think I’m going to stop the private physio after this week until I’ve seen the NHS one.

@SinkGirl
Oh my goodness I'm so so sorry for you love 💐

Can a private osteopath ease your upper back? That must be dreadful

Are your GP supportive? It must be absolutely horrendous getting through the days and nights

@PaperMonster

Cortisone injection in my hip today - which is now aching like crazy. And my shoulder’s no better. Think I’m going to stop the private physio after this week until I’ve seen the NHS one.

Is that to bring down inflammation?

What exercises have you been given by physio? I've had really poor physio experiences both nhs and private 🙄

@doadeer the jab was to help with the pain and I return to the physio for exercises to strengthen it in a couple of weeks.

The arm physio has asked me to put my hands together and raise them above my head - I can’t put my left arm above my head on its own. But the NHS physio has also given me exercises for my arm following a phone appointment this week.

How’s things today @SinkGirl. Could you sleep at all? I think there is an augment about going to hospital if you are in unmanageable pain. Especially if you may have weeks without anything. Even if they can’t do anything they could give you better or different drugs.

Thank you for asking. Still in pretty terrible pain although not as bad as it was yesterday. Now trying to take the bare minimum pain relief to try and eke it out as long as I can at least until I can speak to a GP and let them know that I need to be taking more. Just tired of it all now and want it to settle down.

Can I ask, have any of you used a private GP service while suffering from chronic pain / on prescription painkillers? If so, did they treat you more like a human being, or would it just be looked on as suspicious doctor swapping?

I am so dreading having to speak to a doctor next week and it shouldn’t be like this - they’re supposed to be here to help us aren’t they? They also seem to think you can only have one major problem at a time so I know the fact that my endo pain is horrendous and my back is horrendous is going to be an issue.

I’m waiting on a referral for my back so hopefully they will do a scan - if that’s all clear then I’ll gladly go to a chiropractor or similar, I just don’t really want to mess around with it too much in case there’s an underlying issue.

My treatment has been private after I was told there was nothing wrong on NHS by a physio after an MRI. I was rescanned privately and they immediately identified problems and I started treatment.

I haven't been to a private GP but I've now had countless sessions with a private consultant and I do find them very Pro-helping vs NHS which is so sad.

I am so desperate for help I just couldn't face long waiting times and not being listened to.

I would have a session with someone private if you can... You're suffering so much

I just worry it will be used against me even more - like it will be seen as doctor-hopping. It’s stupid how much I have to worry about what doctors think.

Have found a local private GP service who charge £150 for a 40 minute appointment. Then £40 for 10 minute calls once you’re a patient. £25 for repeat prescriptions without an appointment but I guess that must be private prescriptions so that cost on top.

Could cost me a fair bit but might be worth it. Will see what happens this week.

Hope your pain has lessened again, SinkGirl. I agree with Akire that A&E should be a consideration if your pain is unbearable.

I've not used a private GP, though I wanted to. Couldn't find one here in Scotland. I think it would be worth the cost for a more comfortable life.

I'm struggling today. We spent a lot of time at the beach yesterday, and 3 hours of driving to get there and back (visiting with family). I am so sore. I didn't realise how close my period is - feels like I only had it last week but I'm due again in a couple of days (time has lost all meaning over lockdown) - and I didn't take the usual care of my joints.

Hello How's everyone doing?

Hey I’m not to bad thanks. I havnt seen a private GP but I wouldn’t rule it out for another option from time to time. If they say the same thing then you have not lost much.

I’m so pleased to find this thread.
Nice to not feel so alone

Have herniated disc just had another mri they can’t see any change, my pain is intense no let up I’m on morphine, diazepam, naproxen my main problem seems to be feet the pain radiates down to them and then feels like it throbbing burning, if I try to sit or stand my feet go purple even sitting on the loo I can see my legs changing colour and the pain is unbearable walking is best but it doesn’t stop the pain just lessen it, I know it’s a long shot but does anyone have any idea what this could be I’m so desperate

@SinkGirl my sibling saw a private GP because their own GP wouldn’t see them due to Covid - this was despite them telling the GP what tests needed doing because something had been picked up on a works medical. They found the private GP better with communication about what would happen next, how long test results would be etc. Sadly the delay, thanks to the GP, has resulted in them becoming poorlier than they should have been.

I’m sort of OK. My hip is aching on and off still following the cortisone and it has upset my tummy a bit. My shoulder is painful as usual but I’m getting a bit more range of movement in it. Feeling tired and demotivated today though!

@user1497873278

Have herniated disc just had another mri they can’t see any change, my pain is intense no let up I’m on morphine, diazepam, naproxen my main problem seems to be feet the pain radiates down to them and then feels like it throbbing burning, if I try to sit or stand my feet go purple even sitting on the loo I can see my legs changing colour and the pain is unbearable walking is best but it doesn’t stop the pain just lessen it, I know it’s a long shot but does anyone have any idea what this could be I’m so desperate

No ideas, sorry, but I hope they work it out and you feel better soon. That sounds so awful.

I'm doing OK. Period came 3 days early so I'm dealing with that. None of the pain relief really touches it, but it's always so wonderful when the cramps and sharp pain ease. I usually have both for at least the first couple of hours of every day of my period now, which is a change post-sterilisation.

Hi I wondered if I can join. I have a few bugling/prolapsing docs, cauda equina, chiari malformation, Eds hyper mobility and something to do with wear to facet joints in my back (?). I’m really struggling at the moment, I work full time but from home a few days a week and a couple of days out. My back has been going into spasm at least once a month for a week at a time, and I just can’t seem to get anyone to take it seriously.

I was reading the thread and it’s so familiar what people were saying about being treated like a drug seeker. I wish I didn’t need to take painkillers and had a normal life, I’d swap that for painkillers that make me feel shit any day! I’m also over weight which doesn’t help either the pain or the doctors opinions! Sorry for the rant, having a bad day today after going out for work and I’m in serious pain now

Everyone is welcome @TheTempest good for all of us to hear other people’s stories. My pain has been at “normal” levels so can at least mostly function.

Still trying to lose weight and losing and gaining same few pounds since first lockdown. Wonder if being in pain your body instinct is to think oh dear you may not get out to hunt for food. Then holds onto what it has!