Fed up of not being told things in hospital. Now in extreme pain

[Turnthebloodyheatdowninhospital]

I started a thread last night explaining I was in hospital to have my seizures studied.
anyway am feeling frustrated.

I got a phone call yesterday asking if I could come in for 2 weeks for sleep studies, EEGs and other tests. It was not the best time as DD has just broken up from school but I have been waiting for this a long time so after a quickly discussion with DH I went in.

basicly nothing has happened, no tests, nothing and nothing will happen until Monday. So will be here for 3 days before anything happens. I made peace with this as I thought well maybe it was a case of having to come in when there is a bed.

as well as the seizures I also have fibro and am on slow realise tramadol 200mg twice a day. It means it’s manageable but I need to take it the same time every day give or take half an hour. I discuss this with the nurses and between us we decide 8am and 8pm a good time. Last night I was given meds, correct dose, correct time, all good.

this morning they come with my medication and it’s only 100ml. I query this and they said it’s was what the doctor has prescribed. I then pull out my prescription sheet and show them I have 200mg twice a day. The nurse said she would look into it.

lunchtime comes I ask again and get told a doctor has been sent for- at this stage I can feel the pain creeping in.

4 o clock comes and. I ask again only to told the doctors are off the ward and the dosage may not be increases by tonight. I explain I am in pain and I need the right dosage tonight. I also explain about withdrawal symptoms that my gp has warned me about if I suddenly decrease them. (He said I would need to go down 50ml at a time). I confess I ring DH and tell him to bring some from home and I will take one of those this evening with the one they give me to make the right dose.

anyway fast forward and a doctor comes to me (first time I have seen one since coming in) and she she said she has cut the dose down for the sleep studies. I said this was not discussed or agreed with me. I did point out maybe doing a sleep study while in pain and having withdrawal symptoms may not be the best. She still insists and I agree to try but I am not making any promises as my fibro can leave me in immense pain. I feel as if I have been tricked almost, that if she just did it without telling me I might not notice or make a fuss.

i say if I am going to do this then I need those meds bang on time at 8 and 8. She promised they will be. Plus reg paracetamol.

9.30pm I am in agony and I have asked for the tablet 4 times. Tomorrow morning I will prob have a withdrawal headache and the shakes. And on Monday they expect me to sleep basically on command. It’s now 10.30 and still no pill. 10.40 and finally I get the tablet but by now the pain has set in and I am in for a hell of a night and I can’t even take the full dose.

if this has been said in advance I could have been bringing the tramadol down slowly and also building up paracetamol as the same time before I came in. I don’t see how I can do a sleep study in a lot of pain plus highly probable withdrawal symptoms.

to add to that I am told this next weekend bank holiday no tests will be done but I will be kept in. So in total by next Monday I will have been in seven days where they do nothing and 4 days where they have done tests. So god knows when I will get home. Surely with the nhs on its knees keeping someone in hospital for 7 days for nothing at all is just wrong. There is 2 other women in my bay who came in on Friday for the same sort of tests and they will also be in for 7 days of nothing.

I think in inside I should have said no and waited for a later date with no bank holiday in the middle

on the plus sides most of the nurses are lovely and my fellow room mates are considerate.

When I'm in hospital I bring my own meds in and self medicate (telling the staff). It's the only way I can guarantee I will get the right medication on the right time. This last time the nurses did try and overdose me four times so I had to keep on my toes but at least I could try and manage my pain. Once it sets in it's a bastard to try and shift.

I'd be getting your husband to bring in your meds and tell the staff what you are doing. Cutting stuff too quickly is dangerous. You can always ask to speak to the ward pharmacist. They can liaise with the doctors.

I hope this week isn't too hard for you.

They won’t let me with the tramadol as it’s a controlled drug. I did wonder about sneaking some in and putting them in my purse.

I am also worried about cutting down the tramadol too quickly. She said she wanted normal readings from the sleep study, well I have been on tramadol for over 10 years so having in my system is normal. I was not always taking this dosage for 10 years. Surely I should have gradually trying to cut it down (I get the feeling this was the plan but I was not informed)

to to add I have asked doctors time and time to again for alternatives to tramadol but I am just told it works so that’s that.

I am also worried about the fibro spinning out of control as it’s been relatively settled.

I have Addisons disease and lupus and I have this battle with steroids and Tramadol in hospital all the time. I take my own medication and just tell them what I’ve taken and when. It’s very common within the Addisons and lupus forums unfortunately. They just don’t understand the time critical nature of these drugs. (For anyone reading who doesn’t know about Addisons it’s basically where your body doesn’t produce cortisol so you rely on steroids at exact times to give you the cortisol you need in order not to suffer a fatal Addisons crisis: it really is that serious. Most medical staff just see steroids and think of them in the way they’re used for asthma etc but it’s completely different when they’re used for Addison’s - very similar to insulin etc for diabetes). It’s incredibly frustrating and this just shouldn’t happen.

I thought u said u brought your own from home? U shud not get withdrawals at all as u still have it in system even a lower dose? I take pain meds highest dose but can manage on minute dose and not get withdrawals.? You should not get withdrawals as u still are getting your meds albeit half but it’s still a therapeutic dose and enough to stop withdrawals? Could it be your more dependent on it ? I have a major life threatening condition so take painkillers but I’d not get withdrawals if I reduced or missed a couple days

It's really hard being in hospital and losing that control and being in pain. I sympathise.

Drs should have told you they were lowering the dose.

If a drug is controlled, it usually needs 2 nurses to check it. (From my nursing days Tramadol wasn't controlled but may have changed). It's sometimes hard to find 2 nurses free to do it. Additionally, a number of patients will be due meds at the same time.

That isn't an excuse, maybe just somewhat of an explanation. Your pain and frustration and the difficulty for the nurses can both be true.

Hope the tests get completed soon and you get some answers.

OMG you poor thing, im so sorry you’re going through this. It’s totally unacceptable to be treated like you are being. NHS on its knees or whatever it’s not on. The more I get to
know about what goes on in hospitals the more terrified I am of my family getting ill. Sorry you’re stuck there. Sending you some healing thoughts 🫤 x

Nurse here, this is crap care! I’m often very very busy but I’ve never made anyone wait more than 20 minutes for essential pain relief. Unless your tramadol makes you drowsy I can’t see how it will affect sleep studies. Tramadol is no longer a CD, we don’t keep it in the CD cupboard and it doesn’t take a witness to administer it anymore so there’s really no excuse for these huge waits. I’d be taking my own in and utterly insisting on self administration. We don’t like this as it adds to our paperwork ( a risk assessment must be done) but cannot say no unless you lack capacity. As they have failed miserably so far to listen to you they’d have to prise my tramadol out of my cold dead fingers 🤣 DH can fetch it in at visiting time and absolutely don’t hand it over!

I hate hospitals for this reason, I take regular meds at set times and in hospital I never get them . So now I refuse to hand them over and take them when I need too. 2 of the medications I take are expensive so the pharmacists always send up the cheaper option which I won’t touch and send back down. Honestly whatever happens to patient knows best.

AiryFairy
not at the beginning though now I do as my husband brought some in. I am going to have to tell them to rethink because I am in agony now and there is no way I can do a sleep study in this pain.

with the withdrawal I am going off what my GP told me. He said if I ever come down it needs to be done 50mg at a time and warned me what it would be like if I came off too fast.

I also kind of got the feeling the doctor thought “it’s only fibromyalgia” but I may have got the wrong end of the stick

Surely they need to see you ON your opiates as if you can't sleep with that amount of drugs in your system there is a problem.

Sadly OP, your feeling that the doctor thought “it’s only fibromyalgia”, probably isn't far off the mark, as it seems many medics don't think of it as being a 'real' illness.

I would start taking the drugs your DH brought in, and tell them what you're doing and when. If anyone tells you you can't do that, tell them that you can't manage your pain without taking your full dose of drugs at the right time, and as they clearly can't be relied on to organise that, you will continue as you are. Any further problems ask to speak to a senior member of staff, although doubtless that will be difficult at the weekend, but I would definitely be telling them, that you came in to have tests done, not to be put through agony while you wait. I know that the NHS are always complaining about how patients are rude and angry, but when you get treated like this, is not surprising really, is it?

i think that thing I am struggling with as well is the fact I have been here since Friday and yet tests will only start tomorrow

I am currently in for up to 10 days of tests. I was called Friday and asked if I could come in at short notice. Not the best with my son just breaking up for the hols but needs must.

i have been told that nothing will happen till Monday as its weekend. I mean you see on the news how much a bed for a night costs the nhs so I at the moment here costing the NHS money for nothing.

Say the test take 10 full days which is what I have been told could happen with the bank holiday next weekend I could feasibly end up being here for 19 days and 8 of those days nothing is done. (2 weekends and Easter bank holiday weekend) not counting the day I came in and the day I will be discharged (we could probably add on a full day there as well as I came in at 12 on Friday and prob won’t be discharged till the afternoon on the day a leave. So that would mean the just over half the days I am here have actually been for tests. The rest of the time I have just been here to secure the bed.

surely there needs to be a better system and weekends need to be utilised better somehow. If weekends were treated the same as weekdays then patients could be treated and discharged a lot quicker. I know emergency tests take place such as scans and such but there just seems to be so much time wasted. Can you imagine the fire service saying we are not putting out small to moderate fires out as it’s weekend only doing real emergency big ones.

There was a recent update to guidelines that recommended against opiates for chronic pain including FM. see eg: https://www.ouh.nhs.uk/services/referrals/pain/opioids-chronic-pain.aspx

I don’t think anything should be being done to you without your consent, btw. 💐

I always take some of my own meds in now after being in agony waiting for nurses to get controlled drugs. Yes you’re not supposed to, but I hide them in my bag, incase I need them. It frustrates me that nothing gets done in hospital on the weekend. Very annoying for you. Can you ask to go home for Easter weekend?

I should have said in my post that I wonder if that’s why the Drs are trying to reduce your prescription. (Unacceptable without talking to you first).

Tramadol lowers your seizure threshold, making seizures more likely - that's likely why the doctor lowered the dose.

Sorry OP, that sounds totally shit. Being in hospital is rubbish at the best of times but to be there for no good reason and being kept in pain is particularly poor.

My nan was in hospital for ages a few years ago and for some strange reason they decided to take her off her levothyroxine. Despite the fact she’d had thyroid cancer and had a total thyroidectomy about 30 years ago. She absolutely needed this medication to survive. Obviously she became very unwell very quickly and my mum tore strips off the medical staff when she found out.

They reinstated the medication but had absolutely no idea of how it needed to be taken as it was given at the same time as breakfast with a cup of tea!

And they wonder why people smuggle their own drugs in 😡

Similar happened to my Mother years ago. She was diabetic and they took her diabetes drugs off her upon admission. But they didn't give her any on the ward. She kept asking the nurses but they just kept fobbing her off, saying they'd look into it, ask the doctor, etc. But, like the OP, she was in other the weekend and literally nothing happened because so few staff work at weekends and she wasn't deemed an "emergency" so they wouldn't call in a doctor to prescribe the diabetic drugs. They didn't even give her any "diabetic" food choices - it was just the basic/same menu as everyone one (not that what she chose mattered as they gave her whatever food they had, rather that what she asked for!) They were just happy to wait out the weekend until normal service resumed on Monday to deal with the diabetic drugs. She collapsed on Monday morning and was found to have dangerously high sugar levels - only then did it become an emergency and a doctor found! It's crazy that so much of the NHS, even wards, are basically only "office hours" and that patients are left languishing in evenings and weekends without proper medical attention unless they're deemed to be emergencies to warrant calling out the on call doctor. By the way, this is nothing new - it was 2008!! My MIL was in hospital four months ago, and it was just the same - tumble weed in the evenings and weekends, but she was in over New Year and it was even worse with barely even a skeleton staff - then the day after, the place was flooded with staff again! There should be proper 24/7 care, not just office hours.

id just leave sorry you wont be able to cope with the pain so whats the point of studying you

you werent told of the reduction in your meds or you would have had time to adjust it slowly like youre supposed to

I'd agree. Having poor experiences of the NHS personally and with several close family over the past 25 years, I wouldn't put up with any of their crap anymore. In fact, OH has discharged himself a couple of times! He also refused the offer of a stem cell transplant for his cancer as he had no confidence at all in the "specialist" nor the transplant co-ordinator - what they were telling him was inconsistent nonsense and he wasn't going to risk his life going through all that when the "experts" involved didn't seem to have a clue. He's had no end of stupidity during his cancer treatment/chemotherapy - doses changed without him being told/consulted, changes to the treatment regime without notification, etc. being phoned to ask him where he was for treatments he'd never been told about and not agreed to! They seem to make it up as they go along. Luckily, he's been well on top of it all ever since first diagnosis and challenges/queries everything - he'd not be alive now if he didn't.