Hi, my name is FedUpandSad!

FedUpandSad

Hey,

I've spent the past few hours looking over the various forums and topics.

chiarieds

Hi @FedUpandSad - & welcome to the community. It's good you've been looking around the forum, so please do join in with any discussions of interest. How are you this evening?

FedUpandSad

Hi chiarieds , I'm not actually sure how I am, I know that sounds daft but I've long since stopped feeling anything. I lie in bed for 16 hours a day doing nothing but crying in pain whilst tossing and turning, I do mean nothing for about 90% of that time, I lie there in pain and wonder if I should just clean my room.

Jimm_Scope

Hi @FedUpandSad, welcome to our community. 

Reading your post does bring back memories of when I was in a bad place. I had really bad apathy, so indeed the question of "how are you?" was a tough one to answer. I didn't really feel anything.

You mention you're in pain a lot of the time? Have you managed to speak to the GP at all about it and the apathy? I'm sorry if you have already tried, I know it can be difficult.

There are definitely people here either going through a similar situation as you, or people like me who have been there and know what it's like. I didn't get out of it myself, I managed to get support eventually.

I hope we can help support you and get you the support you need.

chiarieds

I'm so sorry you're not doing so good at the moment @FedUpandSad - there's nothing worse than being in a lot of pain I know. As Jimm mentions, I hope you're GP can help you, & hope you will look to their advice.

I have pain as my joints are hypermobile, + neurological pain, which is even worse. Does your GP know what is causing your problems?

FedUpandSad

@Jimm_Scope @chiarieds thank you for the messages.
My pain mostly comes from a motorcycle accident around 16 years ago when I broke my back in a few places and ended up getting surgery to have parts fused. I have limited mobility and lost feeling in more than 65% of my lower half, along with the bladder and bowel issues that come with it. Then a few years ago I found I have avascular necrosis in my hips and knees and has resulted in a full left hip replacement so far. I'm 42 so the surgeon doesn't like doing replacements until the joints are really knackered.

I'm on a whole host of pain meds, morphine tablets, morphine oral solution, pregabalin, naproxen, duloxotine (sp?) and cocodemal. With all the drugs come the wonderful side effects. I've been monitoring my sleep for around 18 months now and get 2 3/4 hours broken sleep per night.

I'm fed up trying to make plans and have to cancel them at the last minute if I get any "issues". I can't give people a decision on things until that day because I just don't know what the next few hours will bring never mind a few days, weeks or months away. Always having to let people down and that's not the type of person I am, or I suppose "was" is a more appropriate word.

I've not spoken with the doc about apathy because he'll just want to give me more drugs.

I'm currently having issues with the DWP as well who asked to do an audit on my bank accounts, they wanted 4 months statements and I uploaded them the next day, I was quizzed on a host of payments like why I gave my sister £20 12 weeks ago, then why she put £20 back in my account a week later, I had to explain about a lot of such payments including one about a £3 "prize fund" which was a euromillions 3 ball win or something. Not sure what £3 has to do with anything.
My issue comes because I have a savings account for myself and an account where myself and 11 friends put money in each week to be returned at Xmas time. The money before being given back would take me over the threshold allowed in universal credit but the just because the money is in my account doesn't mean I'm entitled to it, there's a document that gives all the definitions for savings, income etc etc and it says that I'm correct but the work coach wasn't having it.
The work coach was clearly upset about this because I was then asked to produce 5 years worth of bank statements, I went online and downloaded 3 years worth which is all my bank does online, these statements show the money coming in week from different friends and then going out at Xmas each year back to the same accounts they came from. After I uploaded the first 3 years I was then told that if I didn't upload the rest with 2 weeks I would be sanctioned, my bank said it would take upto 10 working days to get them sent out. I told the work coach this and she said that I still had to do it by the date or be sanctioned, I contacted my bank close to the deadline and was told there's been an issue and it could take another 10 working days, even though it's completely out of my hands I'm still being threatened with sanctions 🤷🏻‍♂️. Once I get the paperwork I need to then upload them as pdf's so I'll need to look for a free app that can convert pictures to pdf's because DWP will only accept PDF versions of documents.

Sorry if that makes little sense, I find myself typing random words at times and forgetting words at other times. I've probably missed bits as well. The joys of drugs.

Anyway I've probably given you waaaaay more information than you would ever want but it's all your own fault for asking how I am lol.


Thanks for reading,

Richard

chiarieds

You really have had an awful time of it; no wonder you're in pain. I was on Fentanyl (morphine) patches for years, & my GP kept on wanting to increase the dosage, but the side effects were too sedating, so I couldn't tolerate that. I eventually came off them very, very gradually, but do now take pregabalin for neuropathic pain.

With yourself, not being able to get a decent nights sleep won't be helping. It might be worth trying your GP again to see if altering your meds in any way might be helpful. I don't know if you've found the same, but it seems sometimes strong meds become ineffective for chronic pain. I know I've had to find different modalities to cope, & often it's more than one which seems more effective (as well as any meds). I wonder if this is something you've ever explored? Have a look here: https://forum.scope.org.uk/discussion/102784/resources-and-tips-for-those-living-with-chronic-pain   to start, I'd definitely recommend diaphragmatic breathing (the link says deep breathing); I've used this for years & it does help reduce pain, at least for a while!

I'm sorry you're having trouble with UC. I can see where you're coming from, & that all of the money isn't yours, but they're just seeing your savings going over £6k. which has raised a concern. I do think you should have been given the extra time you need to get further statements from your bank. I can only hope you're able to get this resolved. In the future it would be an idea to get someone who isn't on a means tested benefit to look after the Christmas funds instead.

I don't suppose all of this has been helping your pain levels either! I've read it all, & sometimes it really helps to write things down, & vent a bit; we all need this at times.

FedUpandSad

Hi,

Thanks for the reply, anytime I've been back to my doc all he wants to do is up my dosage of one drug or another.
I was going to ask if I could change to Fentanyl for a while and then maybe go back to morphine after a year or so back at a lower dosage. As you said the effect of the drugs reduces over time and I don't want to just increase the amount I'm taking.
Have you tried morphine? How did the fentanyl compare?

I've tried lots of things for the pain over the years and some seem to work for a while and then suddenly stop. I used to enjoy swimming but with no b&b control that's a definite no-no now, along with pretty much all things involving other people.

I was thinking about getting someone else to open a bank account for it, it just annoys me when it says online that the money in the bank may be legally mine because it's in an account in my name but for it to be counted as savings then I must be responsible for the money as well which I'm clearly not because it's easy to see the different people putting the money in and then going out at the end of the year. There's even an example on the gov site about it in which 2 people have money in the account but it shouldn't be counted as all belonging to the 1st person when it's clearly half belonging to the other person.
Other things are annoying about the rules for capital, you can have a £25k (or whatever) car but you can't save up that much to buy one, what's the difference between the two!


It annoys me when things like this happen because to me they are discriminating against me. If an able bodied person is allowed to do it then why should I not be allowed just because I'm disabled?


I'm sorry for venting, just frustrated.

chiarieds

Hi - when I was on the Fentanyl patches, I was also given Oromorph (liquid morphine) for 'breakthrough pain,' but unfortunately I didn't tolerate it well, so I can't compare the 2. That's the trouble, we're all different, & many oral meds I have had in the past have either been ineffective, or made me feel ill.

Sometimes, as you've considered, changing your medication could be a way forward, but this is obviously best discussed with your GP.

I've been taking CBD oil for pain for over 4 years, but again this is something you'd need to discuss with your pharmacist/GP, as most meds are broken down by the same liver enzymes (i.e. cytochrome P450) that also break down CBD, so you'd ideally need a time gap between taking the 2 as either your meds could be ineffective, or you could potentially get an accidental overdose. Obviously check, but Pregabalin is OK as this isn't broken down by these enzymes, but the others could be problematic. However, with you mentioning patches, there are also CBD patches, where the CBD is just absorbed through the skin; perhaps worth asking your GP for their opinion about these, tho they're not on prescription. As you might gather, I read a lot trying to find more ways to help with chronic pain which affects so many of us. I hope you do have an effective outcome when you hopefully talk to your GP.

Oh, regulations about benefits upset quite a lot of people, so don't worry about venting; no apology needed! Just hope you get a speedy resolution.