Fibromyalgia Action UK
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Was in hospital last week to get my medication changed. Also I have another Wheelchair Assessment & PIP Application Form!

Hi everyone,

I have finally managed to get my pain under control, as I managed to get an appointment with my Kidney Specialist. When I saw him I explained the issues I was having & also the problems I was having with him GP.

So last week I was admitted to Sunderland Royal Hospital, on ward B28, though it wasn't plain sailing as when I arrived in the morning to be admitted. I was sent home as they had no beds, so I was rather miffed but there was nothing I could do but go home & sit & wait & call every few hours to see if there was a bed available. So when I got home I was in agony with my kidneys & my back so I went in the bath for 2.5 hours.

Then went back to bed as I was shattered with being up most of the night in pain. So before I got in the bath I got my pjs sorted out & put on my electric blanket so that when I got out of the bath & got ready for bed my bed was nice & warm for me to get in.

So I got comfortable & dozed off for what felt like a few hours, but in actual fact it was only for 45 minutes 😕 So I just turned back over & went back to sleep. When I work up it was about 2pm so I rang B28 the ward I would be going on once they have a bed. I rang them but they told me their were still no beds available. That they will ring me once a bed becomes available. I said okay that's not a problem & that I would ring back at about 5:30pm but in actual fact it was 6:30pm when I rang them as it was after I had finished watching Narnia 😀.

This time when I rang them a young lady told me there was a bed available my answer to that was "Great can I have it please", as I am going in to get my pain under control & I am in agony with kidney paid, back & spinal pain."

So after some discussion between myself, another nurse & my kidney specialist who was on call that week, they finally agreed that I could have this bed. So I managed to get a lift from a friend that night to the hospital. So I had my bag for that week, my mums dressing gown, which I now have as its lovely & soft & reminds me of her. So when I wear it I feel like I'm getting warm hugs off her. I also took my wheelchair with me, as it came in handy when I wanted to escape off the ward to get a change of scenery, as they had me in a side room all on my own as they currently had more men then women on the ward. So if some women were with the renal part of the ward but didn't need dialysis then they were in a side room like myself. So I got there at 8pm on Monday night.

I didn't start to get any pain relief that actually worked until mid day on Wednesday.

As I was extremely surprised they were giving me Gabapentin as I had overdosed on it the previous week. They were 300mg's each & I took 14 of them, plus 60ml's of OxyNorm. The reason I took all of that is because I was sick of my life & I was giving up I was in constant agony with this kidney & back pain as I had been to my local GP & spoken to them but all he did was examine me & asked me to lift my leg up as high as I could & once I did that he pushed my leg up even higher which caused a lot of pain in my lower back. I gasped & I had tears in my eyes.

That's when he stopped told me to get back in my wheelchair then told me he wasn't going to give me anything extra for the pain, I was in (*I have mentioned this in a previous blog*). He is the one that changed my Fentanyl Patch not because my consultant requested him to. BUT because HE thought it was too high for me. But I personally don't think it is his call to make.

That's why when I was in hospital & my kidney specialist said he would change the strength of my Fentanyl Patch. So instead of 25mg & the 12mg (*which I was originally on before my GP changed it, to just 25mg*). My kidney specialist has now put me on to 50mg Fentanyl Patch. So when he told me that I said but what about my GP, So Saeed my specialist is going to write a letter to my GP, requesting that he keeps me on this amount. I have recently just found out that consultants are actually higher then GP's I didn't no that until my friend told me that.

**Personally what I am thinking about doing is making an appointment at my doctors but making it with the doctor who actually owns the surgery. Who is actually the brother of the one I'm having problems with. What do you all think about that idea?**

Anyway back to when I was in hospital. So while I was in hospital they kept me on the 12mg & 25mg Fentanyl patches. So when I came home I have started using the 50mg Fentanyl Patch. So on the Thursday I managed to see the Pain Management Specialist. Which was good the only problem I had was the fact I struggled to understand what he was saying to me even when I explained, I have a problem with my hearing & that if he could explain it extremely simply so I can understand him. But unfortunately he didn't. He was talking to me as if I was a doctor using all these big words. So when he had finished I tried in my own way to explain to him what he had just said to me & he look at me all puzzled like. I felt like saying yeah that's what you have just done to me that thick headed moron!!

But somewhat thankfully I had a friend with me (*my dads somewhat partner, that's another story for another day😕**). So Deborah spoke to the pain doctors when I the looked as though I had turned off completely, but in actual fact what I was TRYING to do is process everything he has just said to me.

But it didn't work as I then noticed Deborah was talking to me so I turned my attention to her and she said Susan do you understand what the doctor has just said to you & in stared at her with a somewhat blank look on my face, then looked at the doctor who looked really miffed at me, I turned back to Deborah & said no not really. So the Deborah then said to the doctor understand that Gabapentin isn't working for you anymore. I looked at the doctor & said finally someone is listening to me. He says the reason why we are taking you off this is because you overdosed on it last week. I said well I have been telling everybody that since I came in on Monday night but no one listens to me.

He says well if you overdose on this medication, there won't be anything else you will be able to take. Now when he said that I thought he meant at all in the future. But apparently what he meant was I won't be able to take anything as strong as OxyNorm & Oramorph are only short term pain killers. So I'm still slightly confused about that comment.

(**But we won't get into me overdosing at the moment. But if anyone wants to ask me anything about IT I don't mind answering any questions. 😊 **).

So the new medication I'm on is in the same family as Gabapentin but it is called Pregabalin, so the doctor says its stronger then Gabapentin but I don't have to take as many. So they is where I am confused (even though it doesn't take much for that lol 😄). The Pregabalin I'm only on at the moment two 75mg a day one in the morning which I take about 8:10am & the again at 8:10pm before I go to sleep. I have been told that if I go to the doctors in two week the medication will be put it up.

But I am hoping the side effects will die down soon as today, I took my morning tablets a little earlier then normal only because I woke up about half an hour before my alarm went off so I took my morning tablets. Which consists of one 75mg of Pregabalin & two paracetamol. As when I take them morning or night time they knock me clean out. So I am hoping after a while of taking them the drowsiness stops. Also my kidney specialist is going to let me try a TENS Machine for my kidney pain, but I haven't had a chance to try it as the hospital only had 2 left and they belonged to the physio department & the ones that patients lend were all out on lone 😣😟. So the physio said I could try one but I never got a chance to try one. But my kidney specialist has told me to buy one BUT there dead expensive.

Because I am currently on Disability Living Allowance Low Care & Low Mobility. So the reason why I am apply for Personal Independant Payments is because my brother asked me to ring my local housing benefit office to see how much I would be able to claim for the housing benefit as my brother filled some information thing online & put my details in & what benefits I am on etc & it said I would be able to claim £91.51a week, but when I rang my local housing benefit a lady said to me that I would only be able to get that amount is if I was on high rate of care &/or of mobility DLA or the enhanced rate of PIP. So that is why I am now applying for PIP. BUT when I rang the housing benefit again & then mentioned to the gentlemen what the lady had said to me, according to him that information was incorrect.

So when I go next week to the C.A.B. to get my PIP forms filled in am going to ask them about it & see what they say about the housing benefit 😀.

This week on Friday I have another appointment at Wheelchair Services as I rang them a few weeks ago & mentioned to them that when I push myself I am starting to suffer from chronic back & spinal pain. At the bottom of my back at the top of my spine, where the neck joins the spine in between, the shoulder blades. (Imagine if you drew a cross on your back, the line going down your spine, then another time going across your shoulders. The part the meets in the Middle (➕) +).

That is the area that I find excruciating when I'm standing for long periods of time. Then when I sit down I have to ever so slowly relax myself into a chair as its very painful. So when I go to this appointment on Friday, I am going to mention the Jane the lady who give the wheelchairs out to patients. I'm going to mention to her that while I was in Sunderland hospital 2 weeks ago, while speaking to someone from Mental Health, I was chatting to a lady from the OT department & explaining to her about my manual wheelchair that I have & how I enjoy going out in it. But unfortunately 😞 I have to have someone with me some when I push myself it's very painful & I also panic incase I hit a car or something. She mentioned an electric wheelchair & to contact my wheelchair services & to speak to them about it.

So she said to say to Jane (from wheelchair Services) that I use my wheelchair all the time when I go out with is more or less true. My question to the lovely lady from OT was do you have to pay for the electric wheelchairs from NHS & she said No! Which is great.

But I just hope I can get one as it would give me SO MUCH MORE independence as it means I could go out without having someone else there. I would save money on taxi's as I could just use my electric wheelchair and go into town in that on a nice day instead of using a taxi/bus.

I have put on my PIP form that I use an wheelchair.

Most of my family are very much against the idea of me using a wheelchair. But when I was at my brothers & sister-in-laws today I was talking to Amy & explaining to her that I no that David & Laura (my brother & sister) are against me using it. But I explained to her that if its saves me from having a nasty falls then yeah I'm happy to use it. As I would rather be happy & safe. Then to be unsteady on my feet fall & injure myself & feel the back-lash off it for months. If they say I can have an electric wheelchair, would I be able to get it the same day or would I have to for one & be measured for it etc?

As the main thing I no is that the standard cushion that she gave me for my manual wheelchair needs to change as its starting to hurt my bum when I'm sitting on it my bum goes rather numb. Then starts to hurt in different areas.. It almost as if it's was the start to possibly get pressure sores. But I could be wrong about that, but it was sore & when I got up off it I was rubbing my bum better as if was sore & I honestly couldn't feel my hand on my bum which is slightly worrying.

But with the applicable PIP I didn't realise how thick the booklet was WOW!! I have done a few self tests online & on what i have scored myself it says I would get the enhanced rate on both care & mobility. Which would be great cause I would be able to get a mobility car obviously as long as I'm not drowsy from my medication. Also I have noticed since my medication has changed I have ALOT of muscle spasms all the time. So I will mention that in my PIP application form.

But we will see I will keep you all upto date with everything regarding my wheelchair assessment & my PIP application form 😊

9 Replies

Hi susan

There really is a lot going on for you at this time and I wanted to wish you all the best. At your surgery there will be a Practice Manager who is probably not one of the Practicing Partners who it would probably be better to discuss this issue with? As they will not be constrained by what the partners are?

Good luck

Ken x

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Thanks Ken!

I no I have a lot on my plate at the moment. The main thing that I am struggling with at thr moment is staying awake.

I took my medication this morning which was a Pregabalin and two paracetamol. Which sends me straight back to sleep. Then at 12pm I took two paracetamol and I'm now fighting to keep my eyes open. My sister says to me that if I sleep during the day yeah I won't be able to sleep at night. But some how I am sleeping through the day and the through the night.

Do you think this is something I shouldn be concerned about! I'm not sure if I went to the doctors of they would be able to help me. As far as I am aware it's just a side that will hopefully subside at some point.

What do you think? Xx


Hi Susan

I personally wouldn't be too concerned about when or how long that you are sleeping at this time, as when we are ill our bodies tend to repair themselves better whilst we are asleep. Sleep is one of the bodies most reliable restorative measures so please do not worry too much about sleeping too much or when you are sleeping.

I genuinely hope that things start to pick up for you soon.

Ken x

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Aww great Cheers Ken.

I will try and contact with either tomorrow or Monday.

As I'm having my wheelchair assessment tomorrow. I'm a little nervous but we will see what happens and I will let u know, once I know myself 😃 xx

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Good luck with your wheelchair assessment, I hope it al goes really well for you.

Ken x

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Hi Ken,

I've had my wheelchair assessment. I don't meet the critiria for an electric wheelchair. I have to be unable to push myself in my chair and unable to walk at all. He only thing I did manage to get was a new cushion. As my old old was hurting my bottoms when I was sitting for long periods of time. So this one has foam I each side and gel in the middle to help support my button and back better.

So depending on if I get high rate care and mobility with my PIP. What I'd do is save it up and buy an electric wheelchair with that :)

Never mind.

Just got my pip form left. Xx

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So sorry to read that. It doesn't help with all of these cuts in the budget? Good luck with getting your PIP and then your own wheelchair.

Ken x

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Thanks ken xx

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hi Susan, I want to genuinely wish you the very best with some real quality sleep and gentle recuperation when you are going through so much.

I 'll say only a few lines now, because my heart tells me that its more vital for you to have some peace and the best quality of relaxed rest you can for your body and your whole being.

Then, when you get ready to look at the PIP form some more, you might appreciate support, whether from here on the forum (there are good people who can share info and experience) and also from Citizens Advice.

I learn from my own experience that there are some 'best ways' to fill-out the form, so I 'd just like to just briefly mention this, for a few days time.

Above all, I wish you some more relief from pain, some steady days, some gentle Spring light and sunshine and warmth.

Kindest wishes for you :-)

Rock Rose x


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