Fibromyalgia Action UK
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I'm falling apart!!

Hi everyone hope your all well.

I'm starting to fall apart!!

As you may already no I have Chronic Polycystic Kidney Disease, and for the past 3 coming up 4 weeks I have been in agony with the pains in both kidneys. Monday gone I went to my doctors for a emergency appointment (as the surgery was closed on the Tuesday all day for a training day and there was no way I would be able to wait that long anymore). So I went to my appointment in my chair as standing is agony. As I said in my previous post my doc questioned to why I have a wheelchair, who suggested I get one and where I got it from. As I andwered firmly I have it because my balance is bad, it comes in handy when I'm in a lot of pain and the Occupational Therapist at Sunderland royal said it was the best thing for me as my legs give way.. That I got it from Wheelchair Services at South Tyneside District Hospital. He didn't look impressed but he is a piglet anyway (putting it politely as I don't want to offend anyone).

So I explained to him why I was in because I am/was in AGONY with my lower back and kidney pain. He then examined me, causing even more pain he stretches my leg out I say ouch please stop and he continues. As I then had tears in my eyes after he then caused me even more pain than I am now alread in.

So I sat back down in my chair and I explained how much pain I am in to the point I'm in tears. He turns round and says okay your in a lot of pain but I'm not changing your medication anymore and I'm defiantly not putting you back on your 12mg fentanyl patch! (Which he took me off, I'm fuming about as my kidney specialist put me on it to help control the pain), now he had taken me off it I can't sleep, stand, walk or even sit as I'm in so much pain and yet he expects me just to get on with life!! :'( :'(

So all of last week I am bed bound, then Friday I had had enough and took more then my normal daily allowance of Gabapentin I'm only supposed to take 3 300mg a day and I woke up on Friday night in tears cause the pain was really getting me down. When I woke up at 6pm ish I took 900mg Gabapentin as the pain was terrible I needed to do something to take the edge off, anything I didn care what it was, I already had my 25mg fentanyl patch on which lasts 3 days. Then I tried to go back to sleep but it wouldn't get comfortable. So I decided to run a nice hot bath and see if that would help, which it did for about 5 minz and then the pain came back. So I quickly washed my hair as I hadn't bathed all week. So I was trying to make myself feel a little better by being a bit more clean :)

But when I got out the bath my pain shot straight up. The pain was like if I had a kidney infection, so then I took more pain killers anything to help me with this pain as it was really bad. Now I understand why they give you limits to how much you can take (I didn't understand as I have learning/understanding difficulties). I then took 4 more of my 300mg Gabapentin and 2 500mg paracetamol. But soon after taking it I started to feel really unwell and when I was getting clean pjs my balance was even worse then normal. So I rang 111 and spoke to someone and they suggested that I needed to go to hospital.

Anyway so I went to hospital the consultant I saw was the rude one I saw when in last in A&E when I was pregnant last year. As when I saw him I couldn't understand what he was saying to me with me being hard of hearing. He refused for someone to help explain to me what he was saying. So I was very much reluctant to speak to him.

They took some bloods out and yeah I cried and screamed once because it was extremely painful, where he put it. So I got wrong and looks off this one nurse. I just looked at her, they couldn't check my bloods in the end as they clotted but the doc was using big technical words I had no idea what he was talking about. As I kept saying what does that mean.

So eventually they hooked me up to some saline. I explained to the doc that yeah I am depressed but this wasn't done on purpose it was done because I'm in so much pain and I needed to take the edge off the pain. He gave me a blank look.

I cried in pain for about 3+ hours, while the doc then turned around and said aww we will give you some Tramydol I just looked at him stunned and said I'm allergic to it!! >:( hence the yellow bracelt I had on that he had already looked at. So he gave me some morphine after some serious nagging and crying even more. As I explained to him and pleaded do not send me home like this. The response I got off him shocked the hell out of me...

He said we can't admit you as you don't have a kidney infection... I said I am well aware of that but I am in agony and it is unfair for you to send me home like this!! He said Susan there are patients here that are genuinely ill!!! I was SO SHOCKED :O and taken back by what he said to me!! So I got extremely upset even more and said I understand what your saying but this pain is not normal for ME something is seriously wrong for me to be in this amount of pain. If you could ring Sunderland royal hospital and speak to them they would be able to advice you on what to do as one if my consultants will be on call!! He point blankly refused and left the room.

He said get some rest with the morphine in your system and we will check on you in a bit!! I said okay.

Next thing I no I have two paramedics knocking on my cubicle door saying I had been discharged and being sent home. Even the nurse coming in to check on my OBS was like she isn't being discharged, then she left the room to check and the doctor had done it on the sly. I said that was really sly of him and the nurse said that was wrong of him. The paramedics were like the doc told you he was discharging you. I was like excuse me but no he did not. He gave me some morphine told me to have a sleep and that he will check on me soon too see how I feel.

One thing I did say to the doc who was treating me was that because I technically had 2,100mg of Gabapentin in my system, what I didn't no until I looked it up on the Internet is it can be very dangerous for people who have renal problems like myself and should be checked. He told me I was wrong but when I was in hospital in July last yeah for ODing on Gabapentin thing checked my kidney function and scanned my kidneys to make sure everything was fine. He refused to do that. So I will mention that to my consultants secretary tomorrow as he had a duty of care to do that and he said it wasn't necessary.

I the got home about 3:30am then about 4:30-5am the pain came back and I was in agony again. But I haven't been back to the hospital.

But I feel even more depressed then ever. So I'm going to ring my consultant tomorrow morning and plead to be seen this week as its wrong to be left in this much pain!!

For this amount of time. So now I'm in the flat in pain and depressed :(


7 Replies

You are going through an awful time. You do have the right to complain about any mistreatment and I really think you should. I would advise you also change to a new GP, I had one like this until I walked out and complained, I was not alone, he no longer works locally. I don't know why they go into this profession if they are unable to at least appear to care. Hopefully someone will know more than me the best course of action. All the best. xx


Likewise. I would complain too. Loudly but not rudely. Is there anyone who can go through this with you. A bit of moral support will go a long way. I might consider changing doctor too. They're supposed to stop when they hurt you. It's almost assault! Good Luck.

1 like

Hi Susan20067389

I am so very sorry to read of the awful treatment that you have been subjected to, and I would contact PALS and inform them of how you have treated. I want to wish you all the best of luck and I sincerely hope that you start to feel better soon, and in a great deal less pain.

All my hopes and dreams for you


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Godz, you must see an empathetic and experienced nephrologist. Your GP sounds like a full-fledged PIG, not piglet.

And how could an A&E doc dare to NOT treat you right because of holding a resentment on his part. What is wrong with these medicals? Have they forgotten the most important pledge they took: first do no harm! Even your nurse knew better than those jerks. Its' disgusting.

I have been a patient advocate in the past. Maybe you need to complain to social services at the hopital or go over the doc's head to file a grievance weith the office of the Director of the hospital. Be the squeaky wheel who demands attention. You certainly need someone to intervene if you are in too much pain to speak for yourself. I am not saying that you haven't tried. It sounds like you made your point at every point!

Honestly, if a nurse who doesn't have the freedom to prescribe thinks the doc should have more done for you, the doctors ought to take their advice. It took me years to get notice from the "foremost experts" in their fields to take my advice. So often they just don't respect the word/opinion of those of us who specialize in a field in which they are not as well educated. Such arrogance.

How can they question this: "Occupational Therapist at Sunderland royal said it was the best thing for me." This from an expert in a field in which the doctor obviously is not.

I could keep on going, but I think you get the point.

Take care of yourself. Find a supportive helper. I don't know how to advise you in the way to do this, but something must change. You totally deserve that fentanyl and something to help you actually recover. If there is such a thing. And if not, then to take care of your symptoms as you have asked them to do.

((((( :-{{ )))))


Yeah, Clare. We do things slightly differently but the processes are basically the same. You're spot on. Drs being under pressure doesn't excuse abuse. (Just been listening to a prog about how understaffed the NHS is.)


Hi everyone just letting you all no that I'm in Sunderland Royal Hospital.

Because I have gave up on life!

I overdosed on purpose... Life is just too hard!

As I contacted my kidney consultant and explained to her what was going on and that I had self-harmed over the weekend! I have punched myself repeatedly in both of my kidneys.

The secretary told me that they couldn't help me and to ring my doctors and speak to them about my pain killers and I explained to her that I have any they are refusing to change my medication. I said it's a vicious circle that I'm in.

So I have been in contact with the samaritans over the weekend and today I did it!

I overdosed on Gabapentin and OxyNorm liquid.

I took 14 Gabapentin which are 300mg each which is 4,200mg. That is what I now have in my system. I keep dropping off to sleep and then waking up. I have pains in my left arm and chest I have told the nurses and nothing is being done about it.

I also took OxyNorm if I was taking it normally I would only take 5ml's.

But today I took 60ml's (20ml in a syringe 3 times = 60ml's). I also have my fentanyl patches on which are 25mg and 12mg.

So in total I now have 4,297mg of pain relief in my system.

So I have been told I am being admitted to the hospital.

I have to see the metal health people tomorrow and I'm scared incase I get wrong. Or if they section me.

So if your wonder why I did this.

I did it as a suicide as I'm sick of my life. As I have learning difficulties I feel like a burden on my family and I can't cope my dads girlfriend, so has so many different moods. I find it hard to approach her sometimes.

But I'm going to go now as I need to ask for the comode. My vision is really bad and I keep going to sleep and waking up gasping for air. There not even checking me. I haven't had my BP checked for ages.

Thanks for your support :)



Hi my medication has recently been changed. As I have just this min out a new blog on. Which talks about ALOT of different things. My medication which I'm now on 50mg Fentanyl patches, one 75mg Docusate, two 500mg paracetamol four times a day, two Senna tableys at night, one Lansoprazole 30mg, one Citalopram 20mg, two sachets of Movicol one in the morning and one at night, two 1.5mg Pizotifen at night and two Pregabalin 75mg one in the morning and one before bed.

The only problem I am having at the moment is Pregabalin the side effects is drowsiness, but infact the tablets knock me clean out. For example I take my medications:-

8:10am - 1 Pregabalin & 2 paracetamol. 1 sachet of Movicol.

12:10pm - 2 paracetamol

16:10pm - 2 paracetamol

20:10pm - 1 lansoprazole, 2 Senna, 1 docusate, 2 Paracetamol, 2 Pizotifen, 1 Citalopram and 1 Pregabalin. 1 Sachet of Movicol.

That is the daily regime that the hospital has done to help me understand when I should take my medication. :) my family are also helping me with it so I ubderstand what I am doing. So if I can't remember if I have taken my meds I can look at this box I have and say yeah I have taken them or no I have forgot il take it now :)

But to answer your question from before. No my doctor can't give me extra medication cause it's a controlled drug.

But as I had a friend with me when the pain management doctor saw me in hospital so what we are going to do is. When I go to the doctors and explain to them that my Fentanyl patches have done up. See what they say and if that doctor again refuses to give it to me. My friend has said she will come into the doctors with me and speak to him as. He is the reason why I overdosed in the first place a few weeks ago and he is the one who is pi$$ing about with my medication.

But we will see I will keep and open mind about everything :)


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