Chronic Pain- Daily chat drop in thread #2 All welcome

[Akire]

Hi all well we filled up the last one and now we have our newish chronic pain boards.

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 through it. All welcome jump in and feel supported

I managed to do a few things today including getting down the steps at the front of the house twice. A big deal for me. It’ll probably be back with a vengeance tomorrow.
Not so positive is the amitriptyline hasn’t arrived yet, the antihistamine doesn’t appear to work and when I do sleep I have terrible nightmares, which is why I was prescribed the zolpidem in the first place.

@Gilead

I managed to do a few things today including getting down the steps at the front of the house twice. A big deal for me. It’ll probably be back with a vengeance tomorrow. Not so positive is the amitriptyline hasn’t arrived yet, the antihistamine doesn’t appear to work and when I do sleep I have terrible nightmares, which is why I was prescribed the zolpidem in the first place.

Getting down stairs is a huge deal for me too so huge congratulations! That must have felt like such an achievement.

Amitryptaline is doing wonders for my sleep. I'm on 30mg on an evening now and I sleep like the dead. It's a bloody miracle!

How did everyone sleep? I slept till 930! Amazing. Then woke up crappy text off housing association nagging me about gas safety certificate but I have brand new boiler. So either they broke law and I’ve lived here without one last 4m or I don’t need new one for 9months. Let’s see them get out that one.

They insist on doing them all in batches so end up about 8/9 months gap between them which pain for everyone who works have take whole day off to sort. I know they like to do summer months so spent winter doing emergency repairs but should still be able keep close to 12 m as can. I be getting all the threatening letters next. One year they didn’t turn up 4 times and ended up sending me £20 as a sorry.

Sleep was good thanks! Managed another full 8 hours, slept through my 6.15 alarm and woke up at 7 in a panic 😂

That’s great about sleep less about pre work school rush!

@Akire

That’s great about sleep less about pre work school rush!

I know lol. Littlest DD was up, washed, dressed, done her bag for school, made a pack up and had had breakfast! I never even heard her get up!

my prescriptions are finally coming today!! i rang the pharmacy first and they said they didnt get them until friday afternoon at which point they had no stock as they are controlled drugs but they are out ont he van for delivery today. so i rang the doctors and they said they didnt HAVE A SIGNLE DOCTOR IN THE BUILDING ALL WEEK TO SIGN THEM which is why they werent doen til friday afternoon. ive put in a huge complaint and told on them to my neurologist who is NOT happy they allowed my seizure meds to stop dead, they arent meant to be stopped dead and shes not impressed and said she was goignt o ring them and stress them importance of me getting it

Sleep was awful last night. My niggly hip kept me awake. Going to have a nap now while the kids are at school

@OneNightTimeMenaceStrikesBack

my prescriptions are finally coming today!! i rang the pharmacy first and they said they didnt get them until friday afternoon at which point they had no stock as they are controlled drugs but they are out ont he van for delivery today. so i rang the doctors and they said they didnt HAVE A SIGNLE DOCTOR IN THE BUILDING ALL WEEK TO SIGN THEM which is why they werent doen til friday afternoon. ive put in a huge complaint and told on them to my neurologist who is NOT happy they allowed my seizure meds to stop dead, they arent meant to be stopped dead and shes not impressed and said she was goignt o ring them and stress them importance of me getting it

So happy for you. Complaint def needs doing. Sometimes I think some GPS surgery’s are run by clueless people. How can they not have single doctor who can sign in a week? Surely in this case there is someone up the chain in area who can do emergency cover for one surgery?

@HerRoyalRisesAgain

Sleep was awful last night. My niggly hip kept me awake. Going to have a nap now while the kids are at school

Hope you get good kip. Good luck

Chronic, constant tension headaches. I've suffered from different forms of migraine over the years but this is the worst as it doesn't go away. Been through all the specialists, tests, etc & all they offer are pills with horrendous side effects & little help with the pain. It's been over a year constant, 7 years slowly getting to that point.

H works long hours & I've no help so I push through. Some days I'm vomiting & can't function so he has to take time to do school drop off but the rest is up to me. I was humiliated today when asked by my child's teacher what I do for a living & I had to admit 'nothing' because of the pain. I hide it so I'm not sure they believed me.

I do have hope though. On my desperate try-anything loop I've started seeing a chiropractor. One session down & I've had some relief. I'm too scared to let myself think it could help. But I'm desperately hoping it does. People have been putting my choice down in different ways, making me feel like I'm being an idiot for going. But, I'm sure everyone on this thread knows, we'll try just about anything. Sometimes more than once.

Hi @TravelDreamLife you are very welcome. Think people can not comprehend at all that you can be left in so much pain for so long and doctors can’t help. They seem think need anything above paracetamol there are amazing drugs hand out willy Nilly that fix everything.

Don’t blame you for trying anything and everything may help. No harm at all of you can afford to and not getting it do debt. I wouldn’t feel bad about not working either it’s no one business. If it makes you feel better lie and say you work from home.

@cricketmum84, I do hope my amitriptyline script comes through soon, another night of awake on and off and nightmares when I sleep.
Pleased though that it’s helping you.

[quote Gilead]@cricketmum84, I do hope my amitriptyline script comes through soon, another night of awake on and off and nightmares when I sleep.
Pleased though that it’s helping you.[/quote]
Really hope you aren't waiting too long! What dosage are you starting on? I've only seen an improvement at 30mg a night x

It’s all about the TMJ here just now, I’m in agony, having to ration out the dihydrocodeine until I get more on Wednesday. I have Naproxen but have to go careful on them as the tear my stomach apart. Saw the chiropractor for the first time in a while on Tuesday (he is under strict instructions not to crack anything he’s really good gentle for a chiropractor). He said my TMJ joint is stuck, muscles around it all ropey and inflammed. All the joints on that side of my body from my ear/neck, shoulders are so so tight. This is the side I get migraines on a lot plus o had the trapped nerve in my neck. Also sciatica/piriformis syndrome side too

I’m on topiramate for migraines appear to be working, I’ve been on amitriptyline before it spaced me out but might need it to sleep.

Didn't manage to nap, and to top off my day I got stung by a wasp on the school run, then went tingly all over, hot and sweaty and breathless.

Luckily there's piriton at the kids school for DS2 and that's done the trick to make me feel better. Still sore now though.

Bloody hell @HerRoyalRisesAgain that is not a good day!!! Sodding wasps. They should be outlawed!

Ive just had an hour in the hot tub, taken my amitryptaline and codeine and could just go to sleep right now! I'm absolutely worn out!

Ouch! Glad you’re okay @HerRoyalRisesAgain!

@cricketmum84 No idea of the dose until I get it. It was a telephone consultation last week and I’m autistic, they tend to run a little fast for me to process!

I have been for my regular massage today, so hoping for a good sleep tonight. I have been getting hot at night but I stopped my HRT before I had my operation in June so I think that’s why.

I am unsure about restarting it, as my GP has wondered if it could be linked to my hemiplegic migraines. My neurology referral for that was refused and my GP was told to follow NHS prescribing guidelines for migraines. I am due a medication review so will talk it over, if I manage to get any kind of appointment!

Fingers crossed everyone gets some sleep tonight

@Evenstar hope you get an appointment to talk things through

I'm only on 2.5 mg Amitriptyline, and my new GP is being really difficult about it. She seems to just love stopping medications prescribed by consultants, without notice she's doing it.

Appointments and reviews are impossible to get with any GP at the practice to get my meds restarted.

Close to a complaint, tbh.

Thank god my biologic comes via a contracted NHS secondary care provider, or I reckon she'd have a crack at stopping that too.

@TravelDreamLife I suffer with chronic headaches too. It's horrible isn't it? Mine have flared up massively recently. I'm popping paracetamol like smarties. It's 2am and I can't sleep. I had a bad head ache on one temple earlier. Paracetamol had sorted it but the caffeine in them had kept me awake.
I'm so fed up. I haven't had a decent night's sleep for the last six weeks. The days seem long cos I'm in pain and all I want to do is sleep but I can't. It's making me so miserable.
I'm cutting out the sugar in my diet to see if it helps my headaches. It'll take a few days for me to adjust but it often really helps. I've also got up remember to take my propranolol twice a day instead of once.
And I will get my PIP form finished and sent off. I'm sure the worry is behind the increase in pain and headaches. It's the thought of the assessment that worries me. I got so worked up last time that I passed out after the assessment and I don't want that to happen again.

well, its almost 5am and im wide awake, i ought to have known this would happen with restarting my medications, i should have taken a sleeping pill i suppose. Still, i can sleep through the day sinc ei dont work anymore. Its juts a bit boring sat up on my own all night!

I woke around 4 too. Managed to get back to sleep though. I fell asleep as soon as I wrote that last post so I think I have had too much sleep and now feel a bit groggy!

@blossomtree323 I am also dreading the assessment but just Cos I know it will be such a waste of time! They already have a letter from neuro rehab explaining exactly what I can't and can't do. DH will have to take time off work to wheel me in, assessor goes oh so you can't walk?? I go "no".
Assessment over...?

Good morning all. I slept, I only woke once that’ll do for now. Must have had pain in my sleep because I was limping in my dream!