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Date: 23.03.2013
From: kylee

Subject: pain being told im a drug addict.. may b they shld live with it for few days c how they cope

Hi all been a while since iv posted on here. Iv spent last 5months addmitted in and out of hospital for numerous things mainly for morphine pain relief.i was having problems fuctioning my legs aand getting painful skin all over I felt like I had been burnt all over. After further tests and mris they now tell me I have ms on top of fibromyalga and arthritis. My arthritis treatment had to stop as the drug I was on makes ms symptoms worse. Any way 3weeks ago I was in agony I was in a flare with both my arthritis and ms. None of my pain relief was working so off to the hospital I was taken. I was seen by a and e docs who addmitted me for pain relief. The nxt day a gastro doc came to see me. Who I found to b rude. She said I was addicted to morphine thats why I had so many addmissions and she cldnt . Any sighns of a arthritis flare in my knee wrist or sholder. As u can imagine being iI agony and being told im lying and im just a drug abuser upset me and I lost the plot shoating at the doctor. A few hours later my rhumy was sent. who also gave me the third degree. Saying my arthritis is dormant and the pain is in my head. He didnt even look at joints i was complaing about til I made him look. My rhummy must of felt stupid as my joints were full of fluid and he had to take 3 siringes off my knee 2 out my elbow and 1 out my wrist. Sometimes I do wish the pain im experiencing at the time can b passed on to the docs. Then they may understand why im in agony and just because an injury ect isnt visible it doesnt mean it doesnt excist. my
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Date: 23.03.2013
From: Bsk

Subject: Re: pain being told im a drug addict.. may b they shld live with it for few days c how they cope

Hi Kylee, that is shocking. First of all, I'm sorry to hear about your MS diagnosis, that's enough to deal with in itself.

You could make a complaint via PALS at the hospital.

Can I ask why you saw a gastro doc when you went in for pain relief? That is the first thing. Secondly, what evidence did they have for accusing you of morphine addiction? Lots of people are on morphine for quite some time without becoming addicted. I would definitely say something about the rheumy - who should know better. It seems to me you had one doctor making an untrue statement to another behind your back and, rather than examining you and coming to his own conclusion, just took her at her word. Very bad medical practice.

Oh, and I would ask to change your rheumy as well!
take care
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Date: 23.03.2013
From: kylee

Subject: Re: pain being told im a drug addict.. may b they shld live with it for few days c how they cope

Thankyou bsk. They r basically saying I have an addiction because iv had at least 1 addmission a month asking for pain relief. my argument is im now on no treatment for my arthritis. Im due to start an infusion treatment but im still waiting. And im nt yet on treatment for the ms. So im gona be in pain having 3 painful dieases that arnt being controled. I have slow realease morphine I take when the pain gets to much and oramorph. when this doesnt work and I cnt walk I end up at the hospital. Im then told I need to learn to control the dieases and nt run to the hospital everytime I feel I cnt cope. My rhummy is pushing me to see a phsycologist. as he feels its all in my head. Why cnt they just accept im in pain and yes it does get to much and yes I do find coping in agony hard. Having a 4yr old and nt being able to move due to the pain is hard for anyone. I was on medical assesment when they put me in the care of a gastro doc. They always do.
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Date: 23.03.2013
From: Deborah

Subject: Re: pain being told im a drug addict.. may b they shld live with it for few days c how they cope

Hi kylee,
So sorry to hear you have also developed ms as if you have not enough to contend with.
I am so shocked at the experience's you have had and totally agree with Bsk in fact I am really angry that a person who is paid to look after the community should treat anyone like this.
If your are a young person maybe they feel that you don't know what you are talking about, I have had this quite a lot in my lifetime.
My advice is learn everything you can about your illness's the different effect each illness has on each other and the drug's they use to treat them and the different effect's they all have on each other that way at least you can throw it back at them when they try to be smart with you and you can also advice them sometime's what way to treat you, I do this and they don't like it one bit.
I find this really put's them in their place by the fact aww this person know's what they are on about.
Also tell that they may know what is the best drug to treat you with but, that they do not know what it is like to live with being on any drug especially anti inflam's, bio-logic's,and any hard line pain killing drugs altogether and the extra syptom's they then may cause.
I would love to have seen the rhumy's face you should have made him/her apoligize to you there and then.
I am glad that you shouted and stood up for yourself I think we shall all have to keep doing this in the future.
Hope you are feeling a bit better and don't let this experience annoy you to much as it just make's us stronger for future battle's we may have. Deborah x.
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Date: 23.03.2013
From: bsk

Subject: Re: pain being told im a drug addict.. may b they shld live with it for few days c how they cope

Hi Kylee, you are in a bad situation but just being told to learn to manage your condition is just not that easy. I wouldn't rule out the psychologist as they can teach a lot about how to manage hard situations. I've seen one and she was very helpful. It doesn't mean they think it is all in your head at all.

Take care.
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Date: 23.03.2013
From: Colin W

Subject: Re: pain being told im a drug addict.. may b they shld live with it for few days c how they cope

hi Kylee , I would take advantage of seeing a phsycologist , most of us suffer with long term illness have some problems like mild depression & chance to talk through it would be great

as for dealing with pain , we are all different , fibromyalga don't help at all , myself I dont use any painkillers because dont realy think they help much , use tens m/c a lot but painkillers mostly make myself feel ill
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Date: 24.03.2013
From: kylee

Subject: Re: pain being told im a drug addict.. may b they shld live with it for few days c how they cope

Thanku all for ur replys im just so angry. I have been unwell this wk firstly I developed an inner ear infection. My doc gave me antibiotics to clear it. I have finished the corse but the infection still hasnt cleared I then started with a chest infection and a cold. I havnt been bk to see my gp as my rhummy wrote a letter tomy gp regarding his conversation about addmissions to hospital. I have also flared inmy left with my arthritis and my right leg has started shaking out of control when weight bearing. I just feel I now cnt go to my gp or seek medical help. As I feel im just wasting there time. Its horrible I have been mde to feel this way.
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Date: 24.03.2013
From: marlene

Subject: Re: pain being told im a drug addict.. may b they shld live with it for few days c how they cope

Kylee, you have every right to be sent to a different hospital, but remember you will have to tell you story all over again. Kylee don't let some one having a bad day ruin yours.
You are not wasting anyones time and never feel like that. It is horrible you have been made to feel like this. I would go to your GP and tell them exactly how this had made you feel.
I had to do this myself and my GP sent me to see some one else and I have never been treated so well.

You take care sweetheart and remember it is you hurting and not them and when you need help you go and get it.
Do you have another hospital close enough that has emergency facilities??
xxxxx
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Date: 25.03.2013
From: laura

Subject: Re: pain being told im a drug addict.. may b they shld live with it for few days c how they cope

hi im so sorry to hear this I suffer with fibromyalgia and have early inflammatory arthritis I am under rheumatology and I have three consultants so far the first one diagnosed me with fibro and tested me for arthritis when I went to get my results she was so rude and said that when im older I will get full blown rheumatoid arthritis (im 24 and I felt so low) so I got really angry and started" saying if that's the case the drugs for it cant be that great then" no one explained anything I complained thankfully the cow left the only down side of that is she didn't inform her patients so me and her other patients had no consultant I fought to get an appointment I asked about going to a pain clinic they said my illness wasn't servere enough(I had 18 out of 18 pressure points with my fibro) I complained but no one listened I got really really depressed I work as a carer so it got even worse july last year I had problem with left foot it wouldn't and still doesn't go flat I asked rheumatology cos I thought it was fibro they refused to see me I said if they don't put my fibro meds up I will stop my meds completely I got an appointment and let the consultant have it big time and although I got apology he still didn't care I went for physio and my left leg actually has drop in leg somewhere I had hydrotherapy and it turns out its an injury from a fall I had 2 years ago. I saw a different consultant in jan 2013 and the consultant im under now is fantastic he is so good. I had one gp that was rude and told me this is as good as its going to get for me but I said no you will treat me properly or I will complain I get pain on a daily basis and it is annoying and I get snappy and irritable and it is hard but don't let them away with it you are the patient you know your own body don't let them mess you around take care
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Date: 25.03.2013
From: Linda

Subject: Re: pain being told im a drug addict.. may b they shld live with it for few days c how they cope

So awful that you have developed MS on top of everything else Kylee. Doctors who blame patients for their pain and illness are just lazy.

"Walk a mile in my moccasins". How would they know how you feel or how much pain you're in.
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Date: 27.03.2013
From: kylee

Subject: Re: pain being told im a drug addict.. may b they shld live with it for few days c how they cope

Thankyou all for your supportive replys my chest infection has set off the ms once again my right side is incredibly weak. Standing and walking is getting impossible. I had . Fall today caused by my weakness which has resulted in to a graze down the right side of my face. And arm... This is when i find being at home hard having stairs to judge to get up and dwn to the lou. And the pain in my legs makes me want to scream. However im so dishearted by recent comments made to me by some hospital doctors I feel im best to grinn and bear it. No matter how hard it is. I dnt think it wil ever be easy getting me to any emergency room no matter what injury or illness I have.
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Date: 27.03.2013
From: marlene

Subject: Re: pain being told im a drug addict.. may b they shld live with it for few days c how they cope

Hi Kylee, sorry to hear you are unwell. Kylee when you have falls like this you really should have your self looked at and the falls recorded.This is one way of putting your medical problems to the full extent to your Drs. How can they ignore grazing caused by your falls?
Have you ever had social services come to your home to be helped with aids to make life easier.
Kylee never think you have to grin and bear pain, you don't. You need some good painkillers.
I wish you well and take care xxxxx
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Date: 02.04.2013
From: kylee

Subject: Re: pain being told im a drug addict.. may b they shld live with it for few days c how they cope

hi all been up all night in pain and ended up trying to put my fustrasions down on paper. and eneded up writing a poem. maybe i should let my speacilist have a read what do you think lol

its 3.15 and i find myself sat here writing this poem.
Its time i was heard its time that you listen.
I have fibromyalgia arthrits and now ms.
its my body thats in pain, my mind isnt a mess.

I had so much faith in those i thought could help me.
instead i feel betrayed lost and angry, they just cant see.

my daily symptoms go on forever.
is it wrong for me to say somtimes im at the end of my tether.

the pain can trap you like a fly in a web.
unable to move as the spiders venom spreads.
an antidote is sometimes needed to rein the pain in.
is that such a big sin.

if taking something that gives me a day or 2 of normality is being an addict
then shoot me down before i cause a mass panic.

im 26 and this is a long road im on.
no im not terminally ill. my pain will keep traveling on.

so excuse me for reaching out for help.
i wasnt taught to cope with these cards ive been dealt.

They may be able to do complex procedures.
they no the inns and outs of these dieases.

they DONOT no what its like inside.
they can only get a gist of it as we try to descibe.
but to actualy feel it. They will never understand.
especially if they wont take the time to actualy listen.
instead of taking a strict tone with us.
acusing me of being a morphine lush.

walk in our shoes for a week or so.
ill be here to listen.
I shalt tell you to go.
I no what its like to feel it inside

I realy wish they could give it a try.
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Date: 02.04.2013
From: bsk

Subject: Re: pain being told im a drug addict.. may b they shld live with it for few days c how they cope

Very well put Kylee, I think you should show it to your consultant.

As Marlene says, wonder whether you've been in touch with an occupational therapist for an assessment of your home. If you are having falls you really should get someone in to see what can be done to help you around the house. You can self refer I believe. Just ring them up and ask for an assessment. I don't believe they go on consultant or doctor's letters but what they find when they visit you at home. They can get all kinds of support in place if they see you need it.

In my borough, the OT can arrange an assessment by social services too in order for you to get further help.
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Date: 02.04.2013
From: kylee

Subject: Re: pain being told im a drug addict.. may b they shld live with it for few days c how they cope

thanks bsk i have just moved house 4wks ago to try and make things easier with my bathroom and toilet being downstairs i now only have to climb up the stairs once a day to go to bed rather than going up every time i wanted the loo. i do have an ot which is very helpfull i have crutchs and wheelchairs and other gadgets that are helpful. however sometimes falls still happen. i havent seen my ot rescently so think i may give her a call
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Date: 02.04.2013
From: bsk

Subject: Re: pain being told im a drug addict.. may b they shld live with it for few days c how they cope

Glad you've got some help in place but agree you should get in touch again. There might be more they can do to help.
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Date: 02.04.2013
From: Linda

Subject: Re: pain being told im a drug addict.. may b they shld live with it for few days c how they cope

Lovely poetry Kylee.

We traded down from a three bedroomed house to a two bedroomed when our children left home to get married. Were're now thinking bungalow or flat. Something on one level. We live in a victorian semi-detatched and the stairs are just too much.

I looked after my mother who had RA for years. I came to the conclusion that most solutions to problems associated with disability, were pratical ones rather than anything else.
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